Follow Jake and his little brother Max

Last post

2010-06-26T22:06:00.004-04:00

It has been a long time since I last posted and I think this will be my last one for a while. I started this blog not intended to use it as a forum to update family and friends on random things happening around us, but mainly as a way to remind myself to look beyond Jake's disabilities and celebrate his improvements as little as they maybe. I felt at times I was easily discouraged by his lack of progress, that if I put an effort in documenting his accomplishments, it would help me to focus on the positives and stay motivated in helping Jake to reach his full potential.

I think in the past 4 years, this blog has done that for me, and as Jake has grown, so have I in this unexpected journey that we are on. Jake had a birthday this month, and he turned 8 years old. Jake is still Jake, non ambulatory and non verbal, but when I look at him now, I no longer panic and I no longer fear the unknown. I am at peace with what it is. I still have moments when I look at him, I think to myself what a handsome young man he is becoming, and I wonder how much more handsome he could be if he is a "regular" 8 year old. But that moment soon pasts me and I think to myself I am grateful to all that Jake has taught me. I am a better person, a better mother because of him.

On the last note, Jake is doing well. Last Friday he walked by himself from the back of the classroom to the front, which was not surprising to us but it was the first time his teacher/classroom assistants have seen him do that. So hopefully going forward, they will give him more opportunity to practice independent walking in school. On the communication front, we recently purchased an IPod with an augmentative communication software called Proloquo2Go. I have yet to program it so that it can be more functionally used by Jake. I think in the near future, with the advancement of technology, we will find new and better ways for Jake to communicate. All the communication work we are doing now with him will pay off in the long run. I firmly believe that.

Little Max is not little anymore, he is ten months old and weights 26 lbs. No, that is not a typo, he really weights 26 lbs, probably more since that weight in was a few weeks ago. He is so active that the only time he doesn't move is when he is sleeping. I am at the very beginning stage of planning a 1st birthday party for him. I think it will be alot of fun. My baby is going to be ONE!

Thank you for reading and keeping up with us for all these years; if there is anything I can help you with, please do not hesitate to contact me.

The word "retard"--

2010-04-22T20:26:00.006-04:00

I hope this is Max in 15 years.

A brother's touching speech honoring his mentally challenged sister.
http://www.youtube.com/watch?v=CoqaNG0Ozqc

April already?

2010-04-06T21:46:00.004-04:00

My goodness, time is really flying. Max turned 8 months old today. He is crawling on his hand and knees full time, pulling himself up to tall kneeling, and is able to play independently for a long time. He is so sweet and is a happy baby most of the time. Except during car rides, he doesn't like sitting in the car seat for long. He is a little trouble maker already, I think we need to do some baby proofing around the house, but don't know where to began.

Jake has been home for almost 2 weeks, which during the whole time, he was on the verge of having a full blown cold, but daily nabulizing treatments, limited exposure to indoor/outdoor temperature fluctuations, lots of liquids and rests, and probably his own improved immune system kept him from getting worst. Tomorrow he is returning to school, which I am sure he will be very happy to see everyone in school.

We try to have play time for Jake and Max. Max is always into whatever Jake has in his hand, he is crazy about the communication device. Sometimes Jake has to just grab it because Max is in his way to use the device. I wonder what role will the device play later on between Max and Jake 's communication? Jake is getting better to say "he is...", and "she is...." and "it is ......"

Max is on the move

2010-03-27T14:32:00.004-04:00

I am not ready to chase a 7 months old around! Max is crawling. He is crawling out of the bedroom, crawling into the bathroom, crawling to the plant and spreading mud around the floor. He can transition from crawling to sitting and back. I remember just that transition along probably took Jake a year in therapy to obtain. The human brain is so complicated that a little off, your whole life is messed up...

My husband is always thinking how do we bring up Max so that he will grow up to be a loving brother to Jake, and will want to take on the responsibility of over seeing Jake's care when we are not able to. We sometimes joke around and tell Max that he was born into huge responsibilities, but all jokes aside, it will be Max's choice. Our job is it to teach him to be a compassionate and responsible individual, and the choice will be his to make.

hold on.. he is crawling into the bathroom again!

OK, I am back. Max and Jake are starting to interact with each other. Actually most of the time it is Max who is interested in what Jake is doing, and not the other way around. It will be cute in the coming months to see the two of them playing together, but sadly for Jake, Max will soon surpass him in all areas of development.

I really want to go on a vacation, but with 2 kids, one disabled and a 7 months old, plus I have to work, vacation doesn't seem possible in the near future. Maybe I will just settle for a long nap.....

Minor accident

2010-03-17T20:58:00.003-04:00

Jake had a minor accident this evening. He lost his balance while “sitting” up the stairs, and hit his head on the metal part of the stair lift railing. There were a few tears and a small amount of blood, but he was ok after a few mins. I plan to sneak in his room later when he is in deep sleep and take a good look at the cut, because earlier he was so defensive when we tried to exam the wound, we couldn’t really look at it closely and carefully.

Yesterday I went to the parent / teacher conference at his school after work. I covered many issues with his teacher and therapist. The main issue I wanted to discuss with them was his school placement after two years. I needed to let them know which direction I would like to see in term of school placement after his current program. The end result of that conversation is that I will arrange for a school visit with his teacher at the school that I think might be a good option. The school of our choice is out of the district so that will be a challenge to convince BOE to agree to it. For those of you who are familiar with special education you know what I mean.

Max turned 7 months old and is doing amazing, commando crawling everywhere; he loves to pull on wires and cords. I see the need for baby proofing very soon. He has one tooth and loves to eat pureed foods.

Work has been crazy busy, I get up daily at 5:30 am to feed Max, get myself ready and get Jake up for school. I try to leave for work around 7AM, and work non-stop to at least 4:30 to 5PM. I feel like my brain is on over drive all the time. As a result, I haven’t been able to spend a lot of quality time working with Jake on areas that he needs to improve. That is an issue which I don’t know how to overcome. I am just so mentally drained after work that I can’t make myself sit down and work with him. I decided that for now my role with Jake will just have to be Mom, and not Therapist Mom.

Everyone is doing well

2010-02-28T11:39:00.013-05:00

Jake went back to school as of last week, and is pretty much back into the routine. He started physical therapy again and is doing well. We think the procedure is helping him to walk better, but he is still a long way from funcational walking. There is a plan to take him back to Michigan for another round of 3 weeks intensive therapy in mid April, but anything can happen between now and then, so I don't want to say too much to jinx it.

Max is doing well, he is sitting up briefly but still needs supervision while he is sitting, and often falls over when he tries to reach for something. He is trying to get on all fours, and I often walk in the room and find him rocking back and forth with his little behind sticking up in the air. It is the cutest thing. My husband just asked me last night when did Jake start to crawl, without hesitation I answered "when he was 2". I still remember that moment when he started to crawl, that was a HUGE milestone that he reached after so much hard work. Here is Max approaching the milestone effortlessly. I feel happy to see Max growing and developing, but at the same time it is so bitter sweet for Jake.

Wow, watching TV sitting up is so much better.

Max is getting ready to make the move.

Who is the babysitter? I am not sure.

what we are up to

2010-02-18T21:13:00.003-05:00

Wow, has it been that long since I last updated?

Jake is home this week for winter break, he was also home last week because he had PERCS done for the second time. PERCS is also known as PERCUTANEOUS MYOFASCIAL LENGTHENINGS. In my laymen’s understanding, it is a less invasive form of hamstring lengthening. Jake had it done the first time when he was 3 and the result was very good. But as he got taller, his hamstrings became very tight again. Upon consulting with a ped. Ortho., it was decided that it is in his best interest to have the procedure repeated. It has been a week since the procedure, the back of his right knee is still bruised and swollen, but they should all go away in another few days.

Max is six and half months old, and is ALL over the place. He especially like to get himself under furniture, such as the bed, stools, bouncers, dressers, and nightstands. One time my husband had to go under the bed just to pull little Max out from under it. But I am not going to lie, no matter what he does, I am so thrilled that he is doing them on his own, without any therapeutic intervention! He is very close to sitting on his own, and is often trying to get into a crawling position. He rolls and pivots his body very quickly and it is very entertaining when he talks loudly to us as if we understand what he is talking about, but we don’t; we have no clue what he is cooing about.

I started working full time after President’s day. Today was day three at work, and OMG, total information overload. I don’t think my brain can take in and digest any more data, but unfortunately, there is so much more to learn and remember. Is this a sign of aging? I was planning on working with Jake on his communication device after I come home from work, but so far this week I haven’t done that. I feel a little guilty for not trying as hard as I should but seriously, my brain needs to relax.

Jake started his first chore

2010-01-28T22:28:00.002-05:00

A quick update: following the OT’s suggestion, I started Jake on his first household chore: put away the utensils in the dish rack each day after he finishes his dinner. The reward is dessert which is always some kind of fruit.

Tonight was night 2 that he did it, still he is not showing too much interest in the activity, but knowing Jake’s personality, once he gets into the routine of doing it, he will like it more and does a better job with it. This weekend I plan to have him help me to load Max’s little clothes in the washer, and maybe have him take them out of the washer once they are done. We will see how it goes.

A quick update on Max: he is now 5 months and 3 weeks old. He has mastered turning from his back to his tommy, but still only on one side, and today he started to be able to turn from his tommy to his back. He loves to eat, so far he has ate butternut squash, banana, apple sauce, carrot, peas, avocado, rice cereal, and sweet potato. He especially likes the squash and the avocado; he also likes the banana and the carrots; he also likes…. What the heck, he likes them all.

Here comes some household chores for Jake

2010-01-26T22:39:00.000-05:00

Today I met Jake’s new occupation therapist. I am every excited to have her start working with Jake next week because it seems like she may just be the person who can help us to get Jake to be more independent in term of his daily living skills. I may be overly optimistic since she hasn’t worked with Jake, so exactly how affective will she be is yet to be determined. Nonetheless, I can not stop thinking about some of the things she suggested and I strongly feel if nothing else, she has given me a new sense of direction and the push that I need to help Jake in 2010.

What she said was we need to get Jake out of his therapy room during therapy and start doing things in the kitchen, such as wash plastic cups/plates, put away groceries, sort utensils; he can do things in the bathroom such as wash his hands, brush his teeth; he can spray some windex and clean the windows; he can go to his room and strip off his bed sheets. Then following her lead, I said he can load and upload the washer! How brilliant is that? I know this isn’t the first time a therapist suggested or that I have thought about teaching Jake to do these things, but somehow in the end, learning to do puzzles, arts and crafts, numbers and letter… you get the idea - always came on top of the list of things for him to learn. And let’s be honest, it is much quicker that I put away the utensils, and it is way quicker if I load and unload the washer, heck, it is much quicker and if I did everything for him. But in the process, I am taking away his potential to be independent.

The OT said we should establish household responsibilities for Jake - Yes, that is my goal for Jake in 2010, to be more precise following the style of his IEP goals, Jake needs to master at least three household chore with minimum assistance 85% of the times.

good bye baby teeth

2010-01-12T22:49:00.005-05:00

Today marks the day Jake officially looses his first two baby teeth. He is 7 years and 7 months so let’s see, compare to his peers, somewhat late and again, couldn’t have had happened without manual intervention. Story of Jake’s life, so what should this be any different, right?!

All jokes aside, Jake hates, hates, hates going to the dentist. There were quite a few dental visits that we went in and came out without the doctor even managed to get a toothpick into his mouth, pretty strong for a hypotonic child, wouldn’t you say. The worst dental ordeal we had was when an experienced chief dentist at a well established children's' dental office, that advertised as having experience treating children with special needs, screamed on the top of his lungs because Jake had firmed clammed down on his finger. Everyone in the office rushed in to see what happened, while the dentist and his assistant frantically trying to get Jake to open his tightly closed jaw so he can get his finger back. It was a horrible experience for everyone, especially for Jake.

Therefore, I dread taking Jake to the dentist, but he has two teeth growing behind the baby teeth and the baby teeth are not coming loose at all, so something had to be done. My husband came with me to take Jake to the appointment today, because I refused to go alone, and can you blame me? Thank goodness today’s dental visit went much, much, much better than I had hoped for. The resident doctor who treated Jake at Schneider Children's’ dental clinic rocked; she was warm and caring to Jake, and at the same time she moved in quickly and precisely. Jake still struggled but she took care business and made us felt very confident that Jake was in good hands. Thanks, Dr. Chin.

I wanted to take a picture of Jake’s mouth, but he is not letting anyone go near there, so maybe next time.

I fell off the wagon

2010-01-10T21:27:00.004-05:00

Tonight I have a strong urge to blog for a different reason, I have fallen off the “being positive” wagon and I need to pick myself up, dust off, and get back on it.

It all started with an innocent play date for Jake with another special needs child. The mother of that child whom I will call “Tom” has always been great and helpful to Jake, and the two of us can certainly relate on many different levels because of our experiences with our boys. So the kids were “playing”, kind of together but not really, and somehow the conversation went something like this:

Tom’s Mom: “I feel like although Tom is a lot of work, but I think you have a much harder. At least Tom can tell me if he has a tummy ache, or if he is tired or hurt. I don’t think I can deal with it if he can’t communicate, how do you deal with it?”
Me: “…………(speechless for a few seconds), I don’t know how I deal with it, I just deal with it.” More of this topic went on for a while I don’t really recall the details and the play date went on, and as usual, Jake seemed to have had fun.

It wasn’t until we came home and started to eat dinner, I was overcame with a sense of failure, defeat and sadness. I cried out that no matter how hard I try, Jake still can not do anything. What I meant was he still can not tell me if he is hungry, thirsty, tired, hurt, happy, or sad. Yes, I deal with it by anticipating his needs and wants, by guessing, by experience, and sometime things are done according to my schedule and not his, whether he likes it, needs it, wants it or not.

My very logical husband responded to my emotional outburst with two simple sentences : “ This is Jake, this is who he is.” and “You will never be happy if you only look at what he can not do.” Why is he always the logical one??? Even though at this very moment, I still feel like I have a bone to pick with God for making Jake’s life so difficult, I know my husband is right. The very first time I started this blog back in 2006 was to remind myself to look at Jake’s abilities and not his disabilities.

Maybe this was a sign from God but this morning I read the following from another online blog :“I am the impatient woman tapping my foot, angry for sickness and delay. Oh, to instead be the devastated mother who says, "This is the worst day of my life, but still, I am grateful."

Tomorrow is another day, I want to start fresh and be happy for the smiley happy, gentle child that is Jake, and be grateful for what he has accomplished.

Max reaches a milestone

2009-12-29T23:25:00.010-05:00

and why am I blogging about it? Because after having Jake, I don't take any of the milestones for granted. One day I was at a kids' birthday party (and this was before Max was born, in fact, I wasn't even pregnant with him at the time), I over heard someone made a comment about his daughter and kids in general :" one morning you wake up, she is crawling, a few weeks later, she is walking and talking..." I remember so vividly thinking to myself :" not all of us are so lucky..." I am not saying my friend's husband was taking anything for granted, I am just explaining why it is so special for me to see Max growing and reaching his milestones naturally. Max has brought alot of joy and normalcy into our lives, and I feel much better knowing that Jake will have a brother who will love him and help him in the days ahead.

OK, back to the actual milestone, Max has been doing this for the past few days, Then this morning, he started doing this:

Then late this evening when most babies are probably sleeping, he was doing this: But of course no one actually saw the progress in motion, because i was in the shower, and my husband who was suppose to be on baby watch duty, apparently went out of the room (which I had specifically told him not to do). He only found Max at this position.

I am off to bed, I was so tired earlier that I took a 3 hour nap, a rare treat.

Holiday Greetings

2009-12-27T22:30:00.007-05:00

Happy New Year! May all of your dreams come true!

Long Island Park for Special needs children

2009-12-09T20:51:00.005-05:00

A friend of ours forwarded us this link http://www.nassaucountyny.gov/agencies/CountyExecutive/NewsRelease/2009/10-09-09.html. The article talks about Let All the Children Play Foundation (LATCPF), a not-for-profit charitable foundation that promotes inclusion of children with disabilities and their able-bodied peers is building a state-of-the-art two acre universally accessible park and playground at Eisenhower Park, East Meadow, NY. The park will offer inclusive play opportunities and challenges for all children, including adapted structures, ramps and swings, as well as accommodations for parents with disabilities, including accessible parking, washroom facilities, pathways, and seating.
For those of you who live in this area, the playground is expected to be completed by summer of 2010.

I remember it like it was yesterday one of the most painful memories I have related to dealing with Jake's disability was walking by neighborhood parks. I heard children laughing, I saw children running free like birds, and parents sitting on the benches chit chating with each other, or just looking at their children playing. But here I was, pushing a child in his stroller who was unable to walk, talk, relate to his surroundings, let alone play in the playground. I avoided walking by the parks as much as I can, but then Jake's therapists were always telling me, "take him to the park, let him watch other children play, maybe he will want to follow..." So holding back tears I took Jake to the playgrounds as often as I could. The only thing he could do at the time was sit in those baby swings, and as I pushed him on the swings, i tried my hardest to block the happy images and the sounds around me, but still, almost every single time, I walk away from the park with tears rolling down my face. I remember it like it was yesterday.

Fast forward to today, seven years later I am no longer as sensitive and I am able to take Jake to the playgrounds without having a meltdown. But still parks and playgrounds aren't my favorite places to take him because there, it is so obvious that he is different, that he is disabled, that he can't play the way his able bodied peers can...it is there I am forced to face the reality that instead of planning what college my child will go to, and dream of how many children he will have, we must plan out who will be his care giver when we can no longer care for him.

Ok, so after all of these sentimental looking back moments, I am really looking forward to this park being open. A place where children like Jake can play on adapted swings, and walk with their walkers/wheelchairs on ramps, and where parents like us can take our children to without feeling so alone.

So it is date, we will see you at the park...hopefully they don't run out of funds in the middle of the project!

Great play date

2009-12-05T21:05:00.001-05:00

Today one of my husband’s co-worker came over with his wife and two daughters, and it turned out to be a GREAT play date for Jake. The girls were age 2 ½ and 5, and both were a bit shy. In the past, most of the children who came in contact with Jake were either too active for him, which left him unable to keep up; or they also could not engage in group play, which made it very difficult to facilitate interactive play. But these two girls were perfect play mates for Jake - they liked table top games such as puzzles, stickers, finger painting, simply board games, which are all the things Jake is familiar with, and can participate in, AND they were so patient which allowed Jake to take his time to do his part.

The kids did a lot of activities together with parents’ help, because not only Jake needed help, the 2 ½ year old also needed some help. Particularly, they kids played the Brown bear Brown bear What Do You See board game, where the players needed to match the animal cards. Jake actually played the entire game from beginning to end with some help. He did so well waiting for his turn, and matched the cards on his own. The only thing he didn’t get is the whole idea that whomever matched all the cards first wins the game, but other than that, he did well.
They also played the Let’s Go Fish game. Again Jake surprised us by his persistence to catch the fish, and he actually did catch a few all by himself. His fine motor has really improved even beyond my expectation. But most of all, it was evident that his social skills and his desire to play in a group setting have improved significantly. The kids also did many other activities that Jake attempted to do but didn’t do too well, such as bean bag tossing, finger painting, play dough, and this other shape board game which was really quiet complicated. But all and all, we were so impressed by Jake, as he held his own and demonstrated his abilities and happy attitudes.

Go Jake! Mommy and Daddy are so proud of you!

Home Sweet Home

2009-11-25T15:46:00.006-05:00

Can you believe another month has gone by since I last updated?! I can’t.

OK so, we were in Michigan for 3 weeks in November for Jake’s intensive therapy. Max came with us so we can officially say, Max has traveled through the states of NY, NJ, PA, Ohio, and MI. But I am so glad to be home and sleep on my own bed. Jake is back in school so we are back to our routine.

I was very conservative and cautious this time, and asked the PT to not push Jake to the extreme in fear of Jake having issues with his right knee, as it happened the last 2 times when we went for intensive therapy. He ended up injuring his right knee and not be able to weight bear for 5 weeks after. So the good news is that Jake did make it through the 3 weeks injury free. But on the other hand, I don’t feel like he made a significant amount of progress at the end of the session because we went easy on him. He is walking a little better during PT with slower and better gait, so hopefully that will continue to improve over time.

I am on hold with the wheel chair dealer at this very moment, it seems as though no one knows right now as to the whereabouts of the stroller. I was told by the dealer 2 weeks ago that Convaid is repairing the stroller under warranty and I was to expect the stroller to be back at the dealer’s shop this week, but so far the stroller is not there yet. As long as the chair is repaired under warranty, I am OK if it gets here a few days later. Hey, better yet if they loose it in transit, maybe they can give Jake a new stroller… wishful thinking, I know.

Max is doing well, holding his head up and all, but I got a little worried when I saw another little boy who is 3 days older than Max, and it seemed that that little boy has even better head control and better muscle tone, so then I was all worried if there is some issues with Max. When will my fear subside?

By the way, I am still on hold while the dealer is trying to call Convaid to locate the chair!?

stroller update

2009-10-30T11:34:00.002-04:00

So of course the repair of the Convaid stroller is a hassle. I mean why should anything be easy. It is currently being returned to Convaid which is located in CA through one of its local dealers, who is charging me $90 to ship it there. Upon arriving, Convaid’s inspection people will determine whether or not the damage is under warranty, if it is, happy ending – they will fix it and return the stroller to me free of charge; if it is not – they will quote the dealer who then in return will quote me with a huge mark up I am sure, at which point I have to decide whether or not I will authorize the repair.

We are getting ready for our annual pilgrimage to Michigan for Jake’s three weeks intensive physical therapy. I haven’t mention it because I don’t want to jinx it before we leave. Hopefully Jake will make great progress this time. Hey maybe he will be able to walk so well that he won’t need the Convaid stroller anymore…yeah…I can always hope and dream right?!

Max’s head control is better, but still not 100% steady. He is going to be 3 month old on Nov. 6th, at which time we will be in Michigan of course. This is going to be his first road trip, I hope he takes the opportunity and get lots of beauty sleep during the trip.

another month has gone by

2009-10-26T17:58:00.004-04:00

I can’t believe another month has gone by since I last updated. Jake is doing well and Max is growing like crazy, he is already wearing 6 - 9 months clothes and he is not yet 3 months old.

Jake’s convaid stroller is not holding up as well as it should. I am trying to get in touch with Convaid and hopefully a local dealer can fix it without costing us an arm and a leg. But nothing is easy when it comes to special needs equipments, so I am expecting a long, drown out process ahead. Luckily Jake does have a wheel chair he can use for the school bus, the only problem is the wheel chair does not fit in my car if I need to take him to or pick him up from school. Well, there will always be a solution somewhere, so we will see how this thing unfolds.

I have to stop now because it is kind of hard to type with one hand while holding a very heavy baby in the other hand.

Oh my god

2009-09-26T20:52:00.002-04:00

I don’t have a lot of time to write right now, but I really want to give an awesome update.

OK, it probably was a fluke and it probably will not happen again for a long long time, but tonight Jake did something he has never done before. While sitting at the kitchen table, Jake had his communicate device in front of him, first he asked to play with his letter puzzle, ok fine, I gave it to him. After a few minutes of playing, he started to get up from his chair, so I asked him “where are you going?” Using his device he said “go bathroom.” I said “where?” He said “bathroom.” My husband then proceeded to take him to the bathroom, guess what happened next?? He actually peed in the toilet. (He pees in the toilet all the time, but has never actually asked to go to the bathroom, see that is where the big deal of the year is!) OK, most likely it was all a coincident, but still we praised him and praised him and praised him some more for communicating! Later I went upstairs to feed Max, sometimes later my husband brought Jake upstairs, and said “guess where Jake said he wanted to go?” I said “where?” my husband said “he said upstairs.” OK again, OMG!

I will write more next week because I have something great about Jake I need to update, but I don’t have time right now.

Here is a picture of Max from today that I just have to share, ok I admit, Jake is getting the short end of the stick when it comes to getting pictures taken. But Max is just a baby.....

Back 2 school

2009-09-16T10:48:00.004-04:00

Time really flies, Jake has been back to school for a week already, and Max is almost 6 weeks old.

I have been looking for a speech therapist for Jake since the beginning of August, and so far we haven’t found anyone. There was one therapist who called and we spoke in length about Jake’s speech needs. But then she called me a few days later and advised me that after further consideration, she decided not to take Jake’s case. Perhaps I had scared her off? LOL I don’t know, but hey, I ‘d rather be honest and up front about Jake’s significant language delay than to have a therapist accept the case and only to find out he/she is not experienced enough to treat Jake. That would be a waste of everyone’s time and money in my opinion.

I haven’t been getting too many hours of sleep at night because of Max, so how I am still walking around during the day and being coherent is beyond me. Many people ask me how is Jake with the baby, and I have to say he is pretty good. He certainly acknowledges Max’s presence but he doesn’t demand attention if I have to attend to Max instead of him.

On the weekend, I am slacking off a bit in terms of working with Jake whether it be walking or using his computer, for that I feel extremely guilty. But I am sure Jake doesn’t mind it, he is just as happy if not happier sitting there watching TV or listening to his music, or doing nothing for that matter, that is Jake for you.

OK, now a little about Max. I have been placing him on his belly daily for a few seconds so he can strengthen his neck muscle… oh yeah a funny story on that. On the day that Max was being discharged from hospital after he was born, the doctor came in with some residents to do a discharge exam I guess. I asked her how is Max’s muscle tone, and that were there any sign of him being hyper or hypotonic. The doctor just looked at me, and looked back at the residents with this puzzled look. I guess not everyday she sees parents who ask this questions. OK, it is not that funny right now, but at the time, the expression on her face was pretty funny.

Jake and Max update

2009-08-31T12:11:00.002-04:00

Jake is into the 3rd and final week of no school. During this time period, I wasn’t able to spend that much time with him because of the baby, but luckily, Melanie, his lone time respite carer comes in everyday and dedicates every minute of her working hours to his one on one care. Prior to the start of vacation, I made up an activity list and a daily schedule sheet for Melanie and Jake. Everyday, Melanie picks from the list which includes various PT, OT, and computer learning activities; she logs them on the daily schedule sheet as Jake does them. This is so that Jake’s days can be structured and he gets a chance to review all the activities/basic concepts.

Last week was an eventful week for Max, as he was hospitalized for 3 days. We found him with a 101.5 fever on Sunday morning, and off to the ER we went. We ended in the ER for 10 hours as they needed to collect urine, blood, spinal fluid from him in order to grow cultures to check for any bacteria infections. They also needed to put in an IV to administer antibiotics in case he did have bacteria infections. We were told that is the protocol for any infants who have fever above 100.4. After 10 hours in the ER, we were admitted to the floor, there he was getting antibiotics every 6 hours as he was being treated as if he had infection until the 48 hour culture report indicates otherwise. Luckily after 48 hours, none of the cultures showed anything, and we were discharged at around 8pm on Tuesday evening. It was so hard seeing him being stuck so many times by no less than 10 doctors/nurses/residents in the ER all trying to get the specimens and place the IV. I mean it was horrible, why can’t they just send in the best person in the first place rather than have 10 people try and try and fail. In the end, it was the attending ER physician who placed the IV and got the spinal tab, but that wasn’t done until 5 nurses, 1 fellow, 1 resident tried and failed. It was another doctor of NICU who finally drew blood from him after god knows how many people before her tried and failed. Anyhow, finally on Thursday, Max was fever free and since coming home, I have been limiting direct contact between him and Jake, and also having no visitors to see him since we still don’t how he got sick in the first place. That is for now, here is a picture of Max in the ER, poor baby, and another one after a bath.

Jake's baby brother is home

2009-08-12T17:00:00.003-04:00

Jake’s baby brother Maxim Kai Li was born on 8/6/09, at 8:38am, birth weight was 9lbs 2.6ozs, and he was 20 ½ inches long.

As soon as I got a good look at Max, I thought right away that he looked a lot like Jake when Jake was a baby. Take a look at their pictures side by side:

Max is a really good baby so far, he eats and sleeps and rarely fusses. Jake still has school this week, so Max and I have been spending some alone time during the day. I also find nursing Max at night is very relaxing for me because for some reason, when Jake is at home, I feel a little guilty if I am not able to pay as much attention to him as I used to. I know Jake doesn’t mind it since someone is always with him to keep him occupied and safe, so it is just me. But when Jake is in school and in the middle of the night, I feel that guilt subside and I can fully enjoy my time with Max. I am not sure how long I will feel this way and I don’t know if it is healthy to feel this way, but right now it is what it is. Here are some pictures of Max.

Jake, baby, and lily

2009-08-02T22:35:00.004-04:00

Jake has been riding his tricycle every weekend, and going swimming at the YMCA once a week as well. Jake is doing well in both, making little but steady improvements. I wish I have photos to post but I haven’t taken any lately. There are 2 weeks of summer school left, and I am picking my brain to find activities to keep him busy while he vacations at home.

The other big news is my scheduled c-section is coming up in 3 days, August 6th is the day that Jake will finally have a baby brother, whose name is yet to be decided.

Wish us luck!

I planted some lilies back in May in the front of our house, and they are blooming so beautifully.

Jake's new tricycle

2009-07-12T07:43:00.002-04:00

Finally, with some miner adjustments, Jake’s new tricycle is ready to hit the road! Here are some pictures of Jake trying it out for the first time.

Jake turns 7

2009-06-11T17:14:00.006-04:00

So Jake had another birthday on 6/10, he is now officially 7 years old. Wow, I can’t believe he is 7 already. This year we didn’t have a birthday party for Jake, I am too tired. It is really sad that Jake doesn’t even care or know the concept of wanting to have a birthday party like any other 7 year old would, although he does enjoy hearing everyone sing the happy birthday song. Anyways, I don’t really want to dwell on the sad points of having a child with significant developmental disabilities. Yeah, that is what 7 years will do to you: you learn to roll back tears and keep on keeping on!

We did have a small birthday party at his school on Jake’s birthday. Two “major improvements” to speak of were one: Jake willingly wore his birthday crown during his party, which was something he was never able to tolerate before, and two: he was actually interested in opening his birthday gift, although technically, he was more interested in taking off the stickers that were on the wrapper. As usual, he enjoyed the cake, his favorite part I am sure. Here are some pictures of Jake in school on his birthday.

For Jake’s birthday, we decided to buy him an adapted tricycle. For two years now, we have wanted to get him a Freedom Concept Tricycle, but it is just so expensive. A new one costs anywhere between $3K - $4K, even a used one still costs approx. $2600. Finally, a friend of mine emailed me a link for another tricycle that has the features Jake needs. It is called the Micah and finally I ordered it today. The bike will be shipped to our neighborhood bike shop for assembly, because from what I understand, it needs certain level of expertise in bike assembly to put this thing together, and I have negative expertise, and my husband is not that much better I am afraid to say. The good thing is the bike place where I am buying the tricycle from will reimburse us the assembly fee so we thought that is really the best way to ensure Jake gets a properly assembled tricycle in the least amount of time frame. When the tricycle is ready and the weather is nice on the weekends, my husband will take Jake out to ride it, it will be a nice form of exercise for him, I mean FUN..... you know therapy is never far from my mind.

Hershey Park 2009

2009-05-26T11:26:00.008-04:00

We went to Hershey Park over the Memorial weekend with my sister’s family. We got there on Saturday afternoon around 3pm and our first destination was Hershey Chocolate World. We took a tour and bought some yummy chocolates there. From there, we went to the hotel to check in and rested a bit. There was a huge swimming pool in the hotel so some of us went for a fun swim. Jake didn’t go because I didn’t anticipate him swimming so I didn’t pack a bathing suit for him. That was a missed opportunity for fun, and next time I will remember to pack it for him. Then we went to dinner and in the evening, my husband, my brother-in-law, my niece and nephew went to Hershey Park and started their evening fun. My sister, Jake and I went back to the hotel because by then it was already almost 8pm, and I wanted Jake to keep his routine, get a good night sleep so he can fully enjoy Sunday in the park.

We got to the park right round the time it opened on Sunday Morning. Jake got a special yellow wrist band which was used to identify people who needed handicap access to the rides. It was very helpful though out the day as he didn’t need to wait in lines and he was able to sit on his stroller for some of the rides. We were surprised that the park was much less crawled than we had anticipated being that it was the Memorial Day weekend, but hey, we can’t complain about that. Jake went on some of the kiddie rides himself, and my sister or my husband took turn to ride with him on some of the bigger rides. Sometimes Jake looked nervous when the rides first started, and always grabbed on the hand bars around him with very tight grips. Hey, safety awareness is always good, right?! Jake had fun, we all had fun. It was great that my sister was there to help with Jake since I couldn't go on any of the rides with him, so I wasn't too stressed out about Jake not going on enough rides because my husband was just excited about going off to big rides with my niece and nephew. Below are some pictures of Jake in the park.

DJ Jake

2009-05-20T18:50:00.005-04:00

Jake’s class performed a dance called Shape Inc. at the school assembly this morning. Jake was the DJ (DJ Jake), and he introduced the shapes by using a Dynavox (a voice output augmentative communication device) as his classmates came out dancing according to the shapes they represented. The dance was performed for the general education students in the same building, and those kids loved it. They clapped and cheered on, it was great. I thought his teacher Rob gave Jake a very appropriate role in the performance. Instead of have him walk out with his walker as one of the shapes, I think Jake was able to comprehend and connect more to the whole performance by doing what he enjoys more, which is using his communication device.

I was in a rush to get to school on time for the performance, I forgot to take a camera with me, so attached is a picture from his teacher.

Jake also went to a wedding earlier this month. One of his speech therapists invited us to attend her wedding ceremony at the church and Jake had the task of bring up the gifts to the father. I don’t have a picture of Jake walking to bring up the gifts because I was walking along side of him, but here is a picture of Jake walking into the church before the ceremony started.

trips during April

2009-04-27T23:12:00.013-04:00

When I wasn’t feeling well during the past few months and also because of the cold weather, Jake didn’t really get to go anywhere on the weekends other than to grandma’s house. After a few months of hibernation, we finally started taking Jake out on the weekends in April.

Let’s see, we went to the Science Museum in Queens earlier during the month. While some of the more complicated stations were not big hits with him, Jake was into some of the hands on stations which was nice to see. Here is a picture of Jake “unbuilding” something at one of the stations.

During Easter weekend, we also went to Potomac Park in Washington DC, it was a beautiful day and Jake got to ride a pedal boat with Daddy, cousin Michael and cousin Cynthia.
The next day, we all went to Luray Caverns, which is located in Luray, VA, the caverns were first discovered in 1878, and every inch of the formation takes 120 years. Amazing, isn’t it? Being that the caverns are all underground, it was rather disable friendly. Once you get down the initial 70 some steps, the entire walkway which was about 1 ½ miles long was built on flat pavements, so Jake was able to ride in his stroller the whole time. My sister helped carry the stroller while my husband carried Jake down and up the initial steps.

This past weekend the weather was unseasonably warm, we went to Bear Mountain State Park in Bear Mountain, NY. I remember we went there back in 2006, I even wrote about it as one of my first blog entries. So I thought it would be fun to post pictures of Jake during last trip and this trip to the park. Can’t believe how much he has grown, and I clearly have as well.

That is it for now, we do have more trips planned for in May, come back to visit us if you would like to know when and where!

First update in 2009

2009-04-02T21:49:00.003-04:00

I haven’t updated once in the New Year?! My bad. I was very sick for a few months, but no worry, I am much better now.

Jake had a fairly uneventful winter season, no major illness – knock on wood. There was also a lack of outstanding improvement to speak of, another reason for my lack of update. However this week, while still recovering from a cold, Jake showed improvement in his walking. Today he took 64 independent steps without falling, which is his best record yet. I was just thinking about 3 years ago, he couldn’t even stand independently for one second, today he walked 64 steps. This transformation probably takes less than a month for a “typical toddler” who is learning to walk, (it is a rough estimate on my part since I have no personal experience raising a “typical toddler”), and it has taken Jake over three years and countless hours of physical therapy. But as the saying goes, it is better to be late than never. I am more hopeful than ever that Jake will be an independent walker, at least for short distance indoor ambulation.

In March 09, we also had a stair glide installed curtsy of the NY State Medicaid Waiver program. It is a program for disabled children whose families do not qualify for Medicaid. One of the benefits is once a year the program pays for a home modification project if needed. Since we moved into our new house, Jake’s bedroom is on the second floor, we thought it was necessary to install the stair glide for Jake. Here is a picture of Jake thoroughly enjoying his new ride.

The third big update is that … well, remember I wrote in the beginning, I was very sick for a few months, yeah, very sick. Let’s see, the symptoms were extreme nausea, frequent vomiting, fatigue, couldn’t keep any food down, felt horrible all the time, etc. The good news is by month 5; most of the symptoms have significantly reduced. If you still can’t figure out the source of my illness, then there is only one thing left to say, Jake will finally be a big brother this August. I just had the 20 week anatomy ultrasound, and according to the medical professionals, all is well with the baby. Still, I am nervous and I am keeping my fingers crossed that this one will grow up on “auto-pilot”, as how one of my friends who also has a special needs child describes her typical second child.

That is all for now, I hope it doesn’t take me another 4 months to do a second update.

Happy Holidays

2008-12-23T18:36:00.001-05:00

We wish everyone a merry christmas and a happy, healthy, safe new year!

Jake's annual IEP meeting was today

2008-12-04T20:17:00.006-05:00

I was waiting to update until after the IEP meeting today. The IEP meeting went as expected, meaning that the school offered Jake PT, OT, and SP services in school but reduced all of his related services outside of school.

The school officials claim this is not a budget cut related decision, but the truth of the matter is that it is. Given the current state of economy, I am sure the Board of Eduction is giving guild lines to schools in terms the amount the therapies they are authorized to recommend.

Nonetheless, we are very appreciative to everyone who attended the meeting, which included a person who is in charge of therapies and related services for the school, the unit coordinator of the school, as well as all of Jake's school therapists, his teacher, my husband and I. The meeting lasted about 2 1/2 hours, and we discussed all of Jake's IEP goals, PT, SP, OT, and classroom. In the end, we agreed with the goals, and we agreed to disagree about removing his related services outside of school.

The school's position is Jake's new goals can be met with only getting services in school, our position is we wouldn't be talking about these goals as they are today had he not receive related services outside of school in the past year. This is particularly true with his SP. One of the speech therapists Jake sees outside of school is an expert in using augumentative communication device, she has guild me to build a communication platform using Jake's mini-merc that has completely opened Jake's world of communication. Without her services in the past year, we are still scratching our heads and asking ourselves what is the best way for Jake's to communicate. To say that Jake's IEP goals can be met by only seeing therapists inside of school is like stepping on the 3rd steps and not recognizing someone helped him to come up from step one and step 2. Furthermore, if Jake can continue to receive services both in and outside of school, he can go from step 3 to may be step 5, without related services outside of school, he will remain on step 3, or worst he will go back down to step 1.

I feel very passionate on this subject, to the extent that my husband advised that I let him do some of the talking, fearing that I would get too emotional at the meeting. I wasn't emotional, my decision to fight for Jake's service is not emotionally based, it is factual based. The fact is Jake needs the therapies, the fact is he has proven that he can improve given the amount of therapies he was receiving, the fact is I am willing to do whatever it takes to take him to therapy everyday, rain or shine, the fact is I am willing to keep open relationships with each of his therapists, and follow their suggestions, and carry over their suggested activities.

Anyways, so now we have to go for a resolution meeting, I think that is what's called, if at the end of that meeting, we still agree to disagree, we have to go for an impartial hearing. Whatever it takes that is what we will do.

Crazy doctor, or crazy me

2008-11-03T18:14:00.002-05:00

It has been a while since I last updated. Jake and I went to Michigan again for what was suppose to be 3 weeks of intensive suit therapy. He was doing very well and managed to stand independently for 200 seconds, and took about 35 independent steps. Unfortunately, during the middle of the second week, his right leg/ankle/foot was injured and he wasn’t able to bear weight on the right side, therefore, I had to cut the therapy session short. Since Jake is non-verbal, he can not tell us exactly where is hurting him, or how it is hurting him. His knee/ankle/foot does not appear to be visibly swollen, and he is able to do crawling and do many transitional activities as long as he doesn’t weight bear. When he is in an upright position, basically he tries to stand on the left leg along, or just hop.

So given all the facts above, do you think it is wrong, or unnecessary for me to seek out opinion from a pediatric orthopedic doctor, to try to find out what caused the injury, how can we prevent it from happening again? Well, apparently it is so to the doctor whom we went to see today. After I explained to him Jake was hurt in therapy, he is not able to stand on his right foot right now, the doctors asked me “so what do you want me to do about that?” He goes on to say “You have to take the good and the bad when it comes to someone like Jake, he needs therapy, he will get hurt…”, “unless the diagnose will change the course of my treatment, I don’t see any reason to do any sort of testing, because all I am going to suggest is that you let him rest until he feels ready to walk again..” I tried to explain “well, the therapists would like to know the cause of the injury so they can try to prevent it from happening…”, he said “ they can’t prevent it, the only way to prevent injury is if you don’t do any therapy, and treat him like a China Doll, which I don’t think it is a good idea…” Furthermore, his tone of voice was very condescending like I was bothering him for being there. For god’s sake, he does get paid for this visit.

I am just like lost for words, this is the advise I get for driving to the city, pay $24 for 1 ½ hour of parking? I mean OK, I understand there is risk associated with therapy, but am I crazy to want to find out where is injury is for a child who can not speak? Am I?

Picture Word - new software

2008-10-13T21:03:00.007-04:00

I think I have mentioned before that Jake has a mini merc, which is a voice output augmentative communication device. He LOVES it. It has really given him a voice to "sing", and to "talk". He is eager to tell us what he wants to play with, or what he wants to eat by using his mini merc. It has given us a way to communicate with Jake, to know his needs and wants, his likes and dislikes. I know my child, not only on an intuitive level because I am his mother, but that he is telling me…

A few weeks ago, one of Jake's speech therapist introduced a software called Picture Word. Jake's ability to learn the new software has really exceeded my expectations. Granted he is only using a small number of symbols he knows, but already he knows how to navigate through different pages, open and close them appropriately. For example, if he is on any of the song pages, he can get himself out of that page, go all the way back to the main page, find social page and hit the "goodbye" symbol when his therapist gets ready to leave. Or if I ask "Jake, do you want to eat dinner?" He can use Picture Word, and say " I" "want" "eat", then go to the word group page, finds "food & drink", and then with some help, find the symbol for "dinner".

I am very grateful to the Jake’s speech therapist to help us to get the device through Medicaid, I am extremely grateful to another speech therapist who helped me to set up the pages in mini merc. When she first told me let’s set up pages with min. 20 symbols on each page, I thought she was crazy. I thought for one, no way Jake can scan 20 symbols at once and find the one he wants; for two, no way Jake can independently navigate from page to page. He proved me wrong. The Picture Word software he is using now has at least 100 symbols on the main page, and he can find the symbols he wants to find.

I can go on and on about Jake’s device, I am so thankful to technology, I am thankful to Medicaid who paid for it.

good bye summer

2008-09-25T20:04:00.003-04:00

Has it really been that long since I last posted? Time is going by so fast, I am afraid I am going to be an old lady very very soon. Here is a picture of Jake brushing his teeth tonight. (It is more like biting his tooth brush…but whatever, he puts on a good show for the camera.)

Jake started going to school via school bus this week. So far the bus has been on time every morning. The bus driver and the para on the bus also seem to be friendly and nice. Jake’s little friend in his class Naomi rides the same bus, when he gets on the bus, she waves her arms around, and he points to her, it is their way of greeting one another, it is cute. With Jake riding the bus, that means I don’t have to rush so much to take him to school, then drive to work. Yeah!!!

Jake also started seeing a level III CME therapist once a week. CME stands for Cuevas MEDEK Exercise Therapy, named after its founder Ramon Cuevas, a Chilean physical therapist. The approach and the equipments used during CME is a little different than traditional PT. My main goal of going is to have a set of different hands, eyes to work with Jake, in conjunction with his regular ongoing physical therapy. Already, Jake has learned to stand up with little assistance from the middle of the floor. I think he plateaus under the same routine/approach, it is good to add new elements from time to time.

We are a few weeks away from our bi-annual trip to Michigan. We need to pay more attention to what he wears as he always gets sick during time of changing seasons.

Nothing new to report

2008-09-10T19:46:00.005-04:00

I haven’t updated the blog for a long time, I have been feeling so tired lately…

We went kayaking on the Hudson River once in August. Don’t let the picture fool you, I was very nervous during the whole time even though there was virtually no wave. We also went to Hershey Park, Jake went on some of the little kids rides. He wasn't as excited as I would liked to see, maybe next year he would enjoyed it a bit more.

Jake is doing so so, no major breakthrough comes to my mind. School started last week, and I think finally therapy started this week in school. I have met all of his PT, OT and SP. I am a little bit concerned about SP, mainly because the therapist looks so young, I don’t know how much experience she has had with children with severe language/communication issues; I also don’t know how knowledgeable she is with regard to augmentative communication. But it is going to be OK, everyone has to start somewhere, including therapists.

We are heading to Michigan again next month for 3 weeks of intensive suit therapy. I actually look forward to our bi-annual trip to Michigan, even though I don’t really get to do anything other than chauffeur Jake to and from therapy; we do some grocery shopping and mall hopping on the weekends, that is about it. But still, I like going there. The only bad thing is coming home, the house is a mess, (but of course according to my husband the house is spotless).

That is about it, I hope you are have more fun than I am at the moment!

Jake's favorites...

2008-08-06T13:50:00.005-04:00

I think to myself: what are Jake's favorite things to do? I came to the following conclusions:

#1 favorite thing to do in the whole white world:

Undeniable, unequivocally, absolutely, categorically, positively, unmistakably is:

EATING

#2 favorite thing to do in the whole white world:

Decidedly, positively, affirmatively, unambiguously, clearly is still:

EATING

#3 favorite thing to do in the whole white world:

Surprisingly, funnily, adorably, humorously is

getting hugs from pretty girls:

Jake started going to his new school

2008-07-24T20:22:00.002-04:00

Jake started going to the new school this week. Earlier then expected and overall, I am very pleased with the change.

The teacher is a guy, which is a rare commodity in the world of special education. He embraces technology, prefers to communicate with parents via E-mail. Wow, wait until he finds out what an email junkie I am…our communication will be frequent if not daily! Oh, he likes the color purple, and wears purple T-shirts everyday. I think he needs to set up his own IEP goal: I will wear non purple t-shirts 20% of the time with minimum reminder. :-) Jake’s classroom Para told me she has 19 years experience working with children with special needs, she is currently getting her master in child psychology. She is young and energetic. She told me she doesn’t want Jake to use the straw cup I sent to school, instead she wants him to practice using an open cup; I am liking this lady already!

Jake has to walk everywhere in school with his walker. I hope by doing so, physically - he can build up his endurance and strength; mentally - he can realize that he CAN be independent.

I had to switch my work schedule around in order to accommodate Jake going to the new school. My boss was very understanding, he told me I can have whatever schedule I want as long as I finish my responsibilities at work. I am grateful that he is an understanding employer, but hey, I am not a lousy employee either!

OK, back to Jake’s new school. The children in his class are mostly a few years older than Jake. I like the fact that most of them are eager to participate in classroom activities, which serve as positive role models for Jake; and from the short time that I observed the class, they seem to be very gentle to each other, which is very comforting to me, especially since Jake has almost no ability to protect himself.

That is it for now…

interesting day

2008-07-15T20:52:00.007-04:00

Today was an interesting day.

In the morning, Jake and I went to The McCarton Center in Manhattan and had an oral motor consultation. According to the therapist who saw him, his jaws are always fixed; he won’t open his mouth big enough to brush his teeth; his tongue, lips, cheeks are very low toned; his jaws are weak especially on his left side; he has very little disassociation amongst his head, jaw, lips and tongue; and his breaths are very shallow; he can not blow bubbles, or any toy whistle or horn, etc… which by the way all of her observations were true. So I guess there was a good reason for the consultation after all. I heard from another mom that the therapists at McCarton Center specialize in oral motor, so I decided to give a try. I am still not 100% sure that any of the techniques I learned from the session will in fact help Jake but I am going to give the techniques a try. My goal is to do at least one session of oral motor activities with Jake each day. I was told that once I master the techniques, it shouldn't take longer than 10 mins for each session. So that doesn't sound too bad. In the short term, I am hoping at least he can become less orally defensive, and in the long term, I am hoping that he can produce more sounds.

So back to our interesting day today. In the afternoon, Jake was invited to the Yoga Integral Institute where Ms. Sonia Sumer was giving a week long Yoga for the Special Child^®, LLC Seven-Day Certification Course. Ms. Sonia did a demonstration of basic yoga movements with Jake in front of her class. Even though Jake needed hand over hand for all of the movements, he listened to her directions and participated to the best of his ability I think. I asked Ms. Sonia afterwards what can Jake most benefit from doing Yoga, she said deeper breathing, increase awareness of his body, and improvement in attention and focus. All pretty good stuff. One of the OTs who attended the class said she can teach me some basic breathing techniques to work with Jake, so I am looking forward to that.

Ok, that was our day...

Summer update

2008-07-13T18:21:00.003-04:00

Jake is out with my husband, I think it is the second time they went out without me. I am enjoying the time by myself. (Left, Jake is practicing walking with Kevin-PT).

I am a little bit disappointed at Jake’s summer program at his school. His teacher from last year who was absolutely wonderful decided to take the summer off; his regular class room aid who had a special bond with Jake is working at a different class during the summer, so now Jake has a new aid. Everything just seems a bit disorganized at this point. Plus, since he will be going to a new school starting September, I feel like it is kind of pointless to get him all situated with summer staff.

I am going to visit the new school next week, but from what I have heard, I am expecting great things. I was told that there will be regular interactions with typical kindergartners; there will be kids who are cognitively higher. I have also heard great things about the teacher. It was my request to Jake’s current school that they re-evaluate his placement, and I am glad that they made the change as quickly as they did.

With the change of school, I am anticipating that I will have to re-adjust my work schedule in order to accommodate the change in transportation needs. At this point, I am not sure how my employer will react, but I am going to have to do what I have to do.

Last week we also looked at new augmentative communication software called Picture wordPerfect. Jake’s speech therapist who is very experienced with ACC recommended and feels strongly that this software is long term solution for Jake. I am going to go with her recommendation after all, she was the one who helped us to set up Jake’s current communication platform on his Mini-Merc, and Jake has proved that he can communicate given the right tools.

Jake had a great party

2008-06-08T23:42:00.006-04:00

Today we had Jake’s birthday party; he turns 6 years old on 6/10. Of course I picked the hottest weekend thus far in the season to have the party.

All together there were about 40 people and everyone had fun despite the hot weather. Those kids who can run around had a blast playing water games in the newly fenced yard, although one still got away somehow and his mom found him a block away. That was the single scariest moment of the day. We also tried to organize a few group games, but I think my best idea of the day was that all the kids drew/scribbled/wrote something on a big poster that I bought. I took pictures of everyone who came to the party so later I am going to print out the photos and glue them onto the poster. Jake can have all year to “review” everyone who came to celebrate his 6^th birthday with him.

As I looked around my house which were filled with our friends and their children, some typical and some special needs, I am most grateful that we have these friends. I know that they care about us and they care about Jake. I know they know that it has not been an easy journey for us; some of them know really really well because their journeys have been just as difficult if not more. Look at this beautifully handmade card. (Thank you Jenny!)

We want to thank all of our friends who came to celebrate Jake’s birthday with us; we thank you for your gifts and we thank you for your love.

will be getting the disabled parking permit

2008-06-06T20:56:00.001-04:00

Today Jake had an appointment to reassess his eligibility for the disabled NYC parking permit. Question: What would I give if in exchange he can be “abled” enough that he becomes ineligible for any services that are disabling related? Answer: I would give my everything.

Anyways, the appointment was at 1pm, we got there at 10 minutes before noon, and we were the third in line. (It is a government appointment; you can never get there too early).

Slowly the waiting room started to pile up after we arrived and I looked around, there were men and women of all colors and sizes, however, Jake was the only child there. It was a sad moment for me I am not going to deny it, but somehow I got myself together and didn’t dwell on my sadness too much. It did help that everyone there were very nice, I didn’t even feel an ounce of pity from anyone’s eyes when they looked at Jake. Perhaps, they felt that he was one of them. I mean after all, we were all there trying to renew the parking permit.

The doctor who was assigned to review Jake’s case was also very nice; he asked a few things about Jake and told me that we should expect the permit in the mail shortly. I am glad that this appointment is out of the way.

This weekend we are having a birthday party for Jake. He will turn 6 years old next week. I will post pictures of the party in my next entry.

No news is good news

2008-05-28T18:47:00.001-04:00

Well, let’s see, I haven’t updated much lately, probably it is because there hasn’t been much going on. Jake has been doing so so, nothing too exciting to report. He is finally recognizing numbers 1-10 with fair to good consistency, however, the concept of one to one association with real objects he does not yet grasp. The same thing with the alphabet, he knows the alphabet pretty well, but he doesn’t recognize any words. He also is recognizing all the basic shapes. But how does this knowledge translate into real like skills I haven’t figured it out. But no matter, whatever knowledge he is able to retain is better than not having the knowledge. This is my position and I am sticking to it. He also has finally mastered turning his walker, which makes it much more functional because otherwise, he can only go in a straight line. I sometimes ask him to walk with the walker at home just so he can learn to turn in tighter corners. God help the floor and the walls, they will probably get damaged during the process.

We are enjoying our new house and all the extra space, however I am desperately trying to keep up with the cleaning because I hate seeing dust balls on the floor. That is all for now, until next time…

Happy Mother's Day

2008-05-10T23:01:00.003-04:00

Good news, Jake’s “bad” leg seems to be getting better. I hope I am not jinxing myself by writing this, but he is not limping anymore!

Tonight we had dinner with an older couple and their adult son who is severely disabled. I met them by chance about two years ago, and instantly we became friends. There is an unspoken understanding between our families because everything we are going through, they have been through, and everything they are going through, we will probably go through.

Last year for mother’s day, I bought a bouquet of flowers for Mrs. Pan. This year I bought a cake and wanted to have coffee and cake with her, but instead she invited us over for dinner, and then we had coffee and cake. Their unconditional love for their son is truly an inspiration to me because after almost 30 years, they are as dedicated to the care of this son as the day he was born; and everything they do they do it for him, and every moment they live they live to take care of him. What do they get in return? Nothing really if you look at it from a traditional sense, their son will not get a college degree, he will never have a job and make a living for himself, he will never marry and give them grandchildren. But none of these matters, they take care of their son day after day, and year after year.

I often think if Jake is our only child and if he is still totally dependent on us for his daily care when he is older and we are old and gray, isn’t their today our tomorrow? I try to visit Mr. and Mrs. Pan as often as I can, because if their today is indeed our tomorrow, I would like it if someone visits me, someone who takes time to show that she/he cares, and bring me flowers on Mother’s day on behalf of my son who can not. I would like it.

Happy Mother's Day Mrs. Pan.

Back to Normal

2008-05-02T12:15:00.005-04:00

Life is finally back to the old routine after almost 5 weeks of “out of routine”.

Jake is back in school, we pick him up every day at 1:30pm and then he goes to his after school therapies. We get home around 5pm, then bath, dinner, a little table top activities, then watch a little bit TV together, then around 7:30pm, Jake is off to bed. By the way, his intensive crying and screaming at bed time has stopped, mainly because we are now back on the routine, and I think by the end of the day he is too tired to scream and cry.

Jake’s walking has still not fully recovered. He has a few doctors’ appointments coming up. The first one up will be a dental appointment; I am not looking forward to that one knowing his behavior history at the dental office. Then he has an orthopedic appointment. This one I am really eager to go to because we need to find out the exact degree of his hip subluxation, scoliosis, as well as the cause of his leg discrepancies. All these factors are contributing to his lack of progress in independent walking. I just hope that we will get some good news from the doctor and not that he needs surgery. The third appointment will be with an urologist, that will just be a consultation.

Jake’s birthday is also coming up; we will have another birthday party for him. Last night, my husband and I assembled some patio furniture from IKEA. It was rather quick to assemble them thank GOD, because every time after we assemble something, I say I will never want to buy anther piece of furniture that requires self assembly. But last night, the job was really easy and fast. So I am hoping by Jake’s birthday, the weather will be nice enough we can sit outside on the patio.

The crying, the screaming, the drama

2008-04-22T19:59:00.002-04:00

We just returned from Michigan after three weeks of intensive therapy. Unfortunately Jake didn’t make progress as we expected. He had a minor injury to the left quadriceps muscle and as a result, was not able to weight bear on the left leg during week 2 and 3. I am disappointed of course, but I try to remind myself that this is all part of the journey of raising a special needs child. Very often, we take one step forward and three steps back. Sometimes I ask myself at this speed, will we ever move forward??

But besides that, the issue we are battling this week is his sleeping issue, or his refusal to sleep in his room by himself. For the third night in a roll now he is crying up to 2 hours before finally falls asleep. He makes his needs known that is for sure, while crying he points to the other bed in his room when I walk in. I know he wants me to sleep there and when I do, he immediately stops crying. But then just as I thought he has fallen asleep and attempts to leave quietly, he starts to scream and cry again. I am not sure what to do, do I give in and sleep there for 2 hours, or do I let him cry and hopefully he gets back to himself. Because up until 3 weeks ago, he was fine each night sleeping in his room by himself.

Jake has finally quieted down after over an hour of screaming and crying tonight, I am FREE at last, well until tomorrow morning!

Jake is sick again

2008-03-24T17:24:00.001-04:00

This is a short update. We are super stressed right now. Jake is sick again and we are 5 days away from going to Michigan for three weeks intensive suit therapy. His pediatrician thinks he might have the flu plus Bronchitis.

I already asked for 3 weeks off, and my husband already bought two round trip tickets. All those are not important but the fact that if Jake is not well enough to benefit from the therapy will be a major disappointment for us.

Our strategy this week is to just let him relax, no school, no after school therapy, no home therapy from mom. Jake will have a therapy free week, boy he will probably be bored out of his mind because all he knows is therapy, therapy and more therapy.

Please keep Jake in your thoughts, and say a little prayer that he will get well soon so he can leave for Michigan this weekend. Thank you.

talk about nothing

2008-03-10T20:01:00.004-04:00

Work has been crazy. I don’t know how it all evolved to this point. I got a part time job just to give myself some break from taking care of Jake all the time, and give myself an opportunity to talk to some people who are older than 5 and not Jake’s therapists. How I ended up more and more responsibilities I don’t even know.

We are getting ready to go to Michigan again in three weeks. I did finally ask my boss for three weeks off. He looked at me and said “Jenna, again? Didn’t you just went?” My answer was “Yes, but I have to go again, I have no choice.” After a few more back and forth, he said “OK, I will approve it, but you have to hire someone so I have someone to go to when you are not here.” So then this week, I am setting up interviews.

Jake is doing good, nothing major in terms of improvements or break through, but he is healthy and I suppose that is good news in of itself. He is coming down the stairs very nicely and independently by sitting on his butt and slides down one step at a time. So the middle section of the stair case gets cleaned once or twice a day by his behind, all I have to clean are the two sides. :-)

Here is a picture of Jake reading while "sun bathing" at the front door.

Sleeping alone

2008-03-03T21:33:00.006-05:00

I wanted to share a few pictures of Jake’s room. Jake now has two beds in his room, one is his old bed (left) which he falls out of it sometimes in the middle of the night because the rail is very low; the other one he just received last week through the Care at Home Program from New York State (below). This bed is like a big crib where you can raise and lower the rail whenever necessary; you can also raise or lower the head or the foot of the bed. As much as I would like Jake to sleep on the regular twin bed, the new bed is safer for him at the moment.

The other major milestone we achieved since Jake got his new bed is that Jake now sleeps by himself in his own room. I think that was probably my major milestone rather than Jake’s because he didn’t have any problem sleeping by himself, I had the problem letting him sleep by himself, after all, his bed was next to ours for the past five years. Since he got his new bed, I figured it was time for me to move out of his room, which was where I had been sleeping since we moved into the new house.

My mom is leaving the country for 3 months, she said by the time she comes back, Jake will be heavier and taller. She is probably right. We are facing a new issue which hasn’t been an issue up until now, and that is Jake is almost too big to fit into the shopping carts in the supermarket, or target, etc. Going out shopping with Jake hasn’t been hard since he has very good head and upper body control, we just pop him into the shopping carts and off we go around the stores. But now he is getting too tall and too big for those carts so what are we suppose to use to transport him inside the stores? I can’t push his stroller and the shopping cart at the same time!? This is just one problem and I know that more and more problems will surface as Jake gets older and bigger. God I pray for the strength and the courage to face those problems.

Jake is sick again

2008-02-15T14:08:00.003-05:00

Jake has been sick since this past Monday, he stayed home and didn’t have any therapy sessions this whole week. This morning I did some exercise with him at home, he did pretty well.

I had a working lunch with my boss yesterday, it turns out his mother is a speech therapist in Israel, and his nephew has mild CP. He told me when growing up; he often went to work with his mom and spent a lot of time with children with disabilities. Although yesterday was the first time I talked about Jake and his challenges with my boss, my boss has always understood of me taking time off to take Jake to Michigan for therapy. After our conversation yesterday, I feel a little bit better about having to tell him again that I have to take three more weeks off in April for Jake’s therapy. I feel guilty but at the same time, I have to do what I have to for Jake, I have no other choice.

The house is coming along, Jake therapy room is especially great. We have the whole cage set up, he ‘s got music to listen to, chairs and table for table top activities, a treadmill, and lots of toys in the cabinets, The next step is to put up some pictures on the walls. I would love to hang some inspirational pictures of other individuals with disabilities doing exceptional things. I read some quotes a long time ago, and wrote down the following to remind myself at times when I want to give up:

“You must do the things you think you can not do.”

--Eleanor Roosevelt--

“For every mountain, there is a miracle.”

--Robert H.Schuller—

“By perseverance, the snail reaches the ark.”

--Charles Haddon Spurgeon—

“Flowers grow out of dark moments.”

--Corita Kent

Long over due

2008-02-03T20:16:00.000-05:00

It has been forever since I last updated. We moved into our new house at the beginning of Jan. 2008. Then, 2 days later, we took Jake to Michigan for 3 weeks of intensive suit therapy. This was a make up session for Nov. 2007 when he was suppose to do 3 weeks but ended doing none because he got very sick.

As soon as we came home from Michigan, we don’t have enough hours in a day to work, organize and buy things for the house, take Jake to school and therapy, assemble furniture, put up blinds, etc… My first priorities were to get Jake’s bedroom all cleaned up and organized, then his exercise/therapy room all set up.

Speaking of Michigan, Jake did great this time. He walked almost 40 steps without assistance which was amazing to watch. Now that we have so much more room in the house, especially since most of them are empty, I encourage Jake to walk as much as possible. Jake ‘s walking has really improved a lot. I feel him taking stronger and better controlled steps when I hold his hand. When he tries to take independent steps, he is still unsteady, but he is learning to gain better control. I bought a big balance board to work with Jake on weight shifting. (It hasn’t arrived yet). It used to be a far far away dream that Jake can walk by himself, but now I truly feel that it will become a reality. But here is the thing, it is never enough….when he takes one step, I want him to take 5, when he take 5, I want 10, when he takes 40, I want him to walk around the house…

Sometime I read from other parents with special needs children that as parents, we should enjoy our children the way God made them; we should let them enjoy their childhood and not be bombarded with therapy. It is such a fine line with how much we should push Jake and I understand we expect a lot from him. So on the weekend, we try to go out as a family, to the mall, to the aquarium, to restaurants… I hope when Jake grows up, he will understand that we are doing the best we can to not only give him a happy life now, but that we are doing everything we can to help him live an independent life in the future.

Happy Holidays

2007-12-16T13:35:00.000-05:00

Everything year since Jake was born, I made our own Christmas cards. I use a software called Photoshop to do all the creating and editing. It is a pretty time consuming project but I really enjoy doing it. It gives a very personal touch to the occasion and gives me a reason to refresh my already limited Photoshop skills. This is our 2007 Christmas card, there is a minor little imperfection, but I won’t tell.

Here is one I made for Jake back in Feb. 2004, Jake was a little bit over a year and half years old. I still look at this one often, the words “Dream will come true” remind me to always have dreams and hopes. Whenever I feel defeated, I look at this picture and remind myself that as long as we don’t give up, and work hard with Jake, one day our dreams and hopes for Jake will come true.

Now a days, I don’t make as many of these home made cards as I use to. I used to work with a group of young web designers; it was that environment that stimulated my creativity and imagination. I actually designed and made our own wedding invitations. It was not as fancy as those you can buy commercially, but it was most definitely very personal. Yeah, those were the days…..

Anyways, I hope everyone have a very healthy and happy holiday season!

Jake's grant plan to escape intensive suit therapy

2007-11-28T22:35:00.000-05:00

For those of you who are waiting to hear about Jake’s amazing progress after his latest suit therapy in Michigan, I am sorry to give you the most disappointing news – Jake was too sick to participant in therapy.

Yeap…. Jake got sick the weekend before he was scheduled to start the 3 weeks intensive suit therapy. Initially we were still hopeful that Jake would fully recover within a few days but unfortunately he got sicker and sicker as we stayed in Michigan. Here is a picture of Jake watching DVD in bed, while getting his breathing treatment in Michigan. (Not exactly the kind of therapy I had in mind for him). By day 10, we had no choice but to packed out bags and drove back to New York. The good news is now that we are back at home, Jake seem to be recovered rather well. Sometimes I think it was his grand plan to escape therapy! But then again, probably not, poor kid; he couldn’t keep any liquid or food down for almost 3 days. I think he has lost a few pounds.

On a good note, Jake is making great progress in using his augmentative communication device.He has a mini-merc (http://www.assistivetech.com/p-minimerc.htm).

Jake can navigate through 3-4 pages to get to where he wants to go and make his choices. He is really eager to communicate through his device as well as use his manual theme boards. For example, before we brush teeth, he has to point to his teeth brushing manual board and say “brush teeth”, “get toothpaste”, “get tooth brush”, “get cup”, “get water”. During meal time, he independently points to his meal time manual board and say “eat more”, or “drink”, or “napkin wipe face”, or “finished”, etc. I am also working on teaching him read sight words. We just started a little bit of it but reading sight words will be my major push for the next year. I am very hopeful that one day, Jake will be able to communicate through his ACC device independently.

looking back and looking forward

2007-11-10T21:38:00.000-05:00

Thank god for digital photos and computer, they make the walk down in memory lane so easy. My husband is out with his co-workers this evening, I was suppose to join them but my mom wasn’t available to watch Jake, so I am home alone while Jake is asleep. I started to look through old photos of Jake, and I can’t believe how much he has grown. To be honest, the future scares me and sometimes I wish we can stand still in this moment in time, but I guess it is not really an option.

I don’t really know how to describe our lives in the past 5 ½ years. There have been so many tears, so much fear, and way too may heart aches; but some how we made it through, and are still together trying to make a better life for Jake, and for us. Hopefully next month we will move into our new house. Jake will have plenty of space to walk both in door and out door. I can picture it in my head when the spring time comes, Jake will help plan flowers, although he would probably destroy them before planning them, but what the heck, it is a sensory experience to have his hands covered with mud.

Here are some pictures of Jake when he was younger, he was always very cute I must say, but of course I am bias…

Two sweetest girls I have ever met

2007-11-03T20:41:00.000-04:00

Jake was a spider for Halloween, his costume was a big hit in school. He was also in his school’s Halloween play. God bless the teachers who put in so much effort into organizing the play. All the kids had a great time. Jake had a big part in the play, and he was the vampire, a cute one.

Today is Saturday and Jake had a make up OT session. The OT brought her two daughters along. I have met them before and they seemed very sweet. Normally I don’t really appreciate it when therapists bring their own kids into sessions, but after spending some times with these two girls, the compassion and understanding they have at the age of 11 and 10 truly touched and amazed me. The older girl told me that ever since she was in second grade, she wanted to be an occupational therapist just like her mom. For her last school project, she made a splint. The younger one said she is not sure what she wants to be, may be a therapist, maybe a doctor. I think she will be a wonderful one no matter what profession she chooses.

Jake truly enjoyed the attention the girls lavished on him. Every time he did something, he turned to the girls with a huge smile and there they were, clapping and cheering for him. They clapped for Jake as he was taking off his shoes and braces; they held the platform swing so Jake can climb onto it; they held the toys in position following their mother’s direction so Jake can complete his task. After we finished the session, the girls asked me if Jake can stay a while longer so they can continue to play with him. I was elated at their invitation, and Jake was so excited to stay and the girls were so excited that he stayed.

I can’t help but to think how proud Izzy (OT) must feel that her daughters are such wonderful human beings; and I wonder what is she doing differently as a parent to raise such compassionate and loving children; and I wonder how much nicer the world would be for Jake and kids like him if everyone acts like Izzy’s girls?

Jake, writing a sentence? yes, no, maybe

2007-10-08T20:42:00.000-04:00

OK, this might be too premature to brag, but I want to write down what Jake is starting to do. With prompting, Jake is able to place Mayer Johnson symbols in sequence to form sentences. His teacher Ms. Roberta gave me the idea as an activity to do at home, so I immediately thought of the little wonderful book Susan (Jake’s speech therapist from Apple Pre-school) made for him. Each page of the book has a short sentence with 3-4 Mayer Johnson Symbols, an example of a page would be "I play computer with dad".

Then I give Jake a set of matching symbols but out of sequence, he is able to find the matching symbols to form the same sentence. He does still needs to be reminded from time to time that he must find the symbols in the exact sequence. He is so proud of himself after he finishes the sentence and asks to do more.

Here is the same sentence that Jake did:
If you had asked me a year ago, or even 6 months ago if Jake will be able to write a sentence, my answer would have surely been probably not. But today, I think he might.

A note from Jake's speech therapist at school

2007-10-04T20:12:00.000-04:00

Today I got the following note from Jake's speech therapist at school, it reads: " Jake did an excellent job! He was able to pick yellow from black correctly 7/7x. He was also able to identify corn, sun, banana, and star correctly by pointing! I am so proud!!! :) :)"

Yes, she did have the 2 smiley faces at the end...Isn't this a great note to read after a long day of work?
I think Jake is making new friends at his new school, it seems that everytime I go to school, some one always says hi him. All the paras in his class seem to like him.

On a different subject, Jake still won't go to the potty with any of the paras at school after one month of trying. Today his teacher wrote the following: "We are giving Jake extra juice. Also we are showing him some cereals that he can get if he goes to the potty....We can try a cheese doodle tomorrow (cereal did not impress him much)." Let's hope tomorrow the cheese doodle can do the trick...

I got Jake's Halloween costume today, I think it is going to really cute. I got it on eBay. Pictures will follow when Halloween comes..

I did my homework

2007-09-20T21:25:00.000-04:00

Here is a picture of Jake proudly showing off his finished math homework. His teacher Ms. Reberta has been sending homework every night. We do homework every night after dinner. I really like the homeworks because they are different activities then what we usually do at home, and also they help to reinforce what he is learning in school. Tonight Ms. Reberta called me at home, I was pleasantly surprised. She update me on how Jake has been doing, she said he is becoming less shy and more engaging with everyone in the class. She even told me that I can set up a regular time to call her and we can exchange ideas on how to help Jake learn better. Tomorrow there is a parent breakfast thing at Jake’s school, I am looking forward to going and meeting other parents.

Jake still won’t go to the bathroom with any of the paras while he is in school. He either stays dry for over 5 hours, or he wets his pull up. I don’t know what to do other than wait and see. Ms. Reberta also said we need to give more time.

When school first started, I really wasn't sure how things were going to work out. As a matter of fact, I thought the school was very disorganized based on my observation on the first day, but slowly, I am having more trust and confidence that Jake will make progress as long as I continue to work closely with school, and continue to have high expectation of Jake and those who work with him.

swimming class at the YMCA

2007-09-17T19:39:00.000-04:00

Jake joined a toddler swim class at our local YMCA. I thought it is a good opportunity for him to be in the company of typical developing kids. This past weekend was his first time going to the class. All the kids in the class are three and under, and each one goes in the pool with one parent. Jake went in with his daddy. The funny thing was that while in the water, Jake really looks no different than all the other little kids, because he has a childish face; but out of the water, all the kids were so much shorter, he looked like a giant next to them.

The first thing the teacher told us right after we got Jake changed was that, each kid has to be invited into the pool by having an adult count “One, two, and three”. She said over time, it will become a habit for the children to know that he/she can not jump into the pool without an adult’s permission. During the class, the children practiced swimming at their own level; they also practiced how to get out of the pool. The teacher showed my husband how to assist Jake in moving his arms which I thought it is a good exercise for him. Because Jake’s shoulders are very tight. My husband still has to get a hang of how to assist Jake because when the teacher did it with Jake, the movement looked very natural and smooth, but when my husband did it, it looked a bit awkward.

I am getting more comfortable leaving Jake at the new school, although I still need to discuss with the teacher about her goals and my expectations for Jake academically. I strongly feel that he can learn giving the right tools and lots of practice. We started a new speech therapist who is helping me to rebuild a frame work for Jake’s augmentative communication device. So far I have put in at least 15 hours of work making the pages. We really need to teach Jake how to use his device more functionally as a way to speak for him; it is really not an easy task.

That is for now…the weather is getting colder here..

Worried

2007-09-09T22:37:00.000-04:00

I haven’t updated for a long time, over a month as a matter of fact. Jake is doing OK, no major breakthrough or set back.

School started on 9/4, I was really hoping to have some exciting news to update about the school, but unfortunately at this point, everything is up in the air. Jake doesn’t have a one-on-one para in school, and upon my observation during the first day of school, I had some serious concern about whether or not Jake’s needs can be met under the current setting.

We have three major requirements for the new school. One is have someone walk with Jake through out the day within the school grounds, which means to and from the cafeteria, computer room, bathroom, etc. So many people especially Jake himself have worked so hard to reach his independently walking goals, and it seems to be reachable, I don’t want Jake’s gross motor to deteriorate because of prolonged sitting during school hours.

Our second requirement is for school to regularly take Jake to the bathroom. We work very hard at potty training even though Jake still doesn’t indicate when he has to go. But we take him regularly and he is able to stay dry most of the days. His teacher from pre-school told me it is called “time trained”. It is so important that he masters this function in life because not only because I don’t want to change an adult’s diaper, but that it adds quality and dignity to his life. However, this process can not be successful if it is not properly carried out during school hours.

Our third requirement is that school educates Jake academically, that means letter, numbers, colors, drawing, reading, etc… Even though Jake is learning disabled, but he is able to learn with repetition and practice. For those of us who spend time with Jake on a daily bases, he amazes us time after time in his comprehension and memorization. I don’t want Jake to go to school and just be looked after, no, I want him to learn.

So my husband and I met with Jake’s teacher, she seemed to understand out position and agreed to do everything that we asked. But since I am not really allowed to be in school to observe, I am concerned if these actions will indeed be carried out on a daily bases. Only time will tell, I plan to do some detective work in the next few weeks.

Hopefully I will have a more possible update next time.

Back from St. Louis

2007-08-07T20:44:00.000-04:00

We went to St. Louis last weekend for the 4^th Annual CP conference, and Jake had an appointment with Dr. Tychsen, who is an Ophthalmologist at the St. Louis Children’s Hospital.

The conference was great. Various experts talked about The role of Botox, Stem Cell Research, Soft Tissue Surgery, Treatments for Dystonia, Baclofen Pump, and many other topics related to CP. There were also teen and adults with CP discussion panels where they talked about how they live their lives and overcame challenges despite of having CP. When a parent asked one of the teens what advise would he give to parents of CP children, he used his pointer which was strapped on his forehead, and wrote out on his communication device “Don’t give up!”. My husband was moved to tears.

My favorites were a group of young girls with CP performing a serious of dance movements, and another group of kids doing adapted Martial Arts. I was over came with emotions when the girls were dancing because some of them were Jake’s age, and they had leg braces on underneath the tights; many of them needed hand over hand assistance, but the volunteers, the instructor, as well as all of us in the audience cheered and clapped for them, and they finished the whole routine. It was a great experience also because were we got to meet and talk to other parents around the country.

Jake’s appointment with Dr. Tychsen went OK. We didn’t get to do some of the quantitative tests I was hoping to do because they had to be pre-scheduled, and I wasn’t aware of that. But what Dr. Tychsen was able to conclude was that Jake’s has no optical nerve or rental damage; his peripheral vision and convergence are fine; he does has a degree of gait palsy, and because of Jake’s various brain abnormalities, he will always have some level of vision impairment. Dr. Tychsen said that with maturity and cognitive development, Jake’s vision will improve. I guess in a way I wanted to hear concrete solutions to address some of his vision issues, but it looks like there is no other way but to keep doing what we are doing.

A special moment but I was in total shock

2007-07-12T20:29:00.001-04:00

I have to write about what Jake did today, even though I’ve already called and wrote emails about it to a tone of people within the last hour. But the reason why I started this blog is to write about Jake’s accomplishments and not his disabilities, and today he accomplished something HUGE.

This afternoon, I sat Jake on a bench against the wall and walked to another room to set up a swing for him, I wanted him to spin on the swing which is something he really enjoys and he laughs out loud when doing it. As I was hooking up the swing, I saw something move in the corner of my eyes, I looked over, what did I see??

I saw Jake walking by himself towards the middle of the room. When I saw him, he was already 4 steps away from the bench, then I watched him take another 4 steps, then it looked like he was going to fall; he reached out both of his arms before he fell on the floor. You may ask why didn’t I run up to him as he was falling, because I was completely in shock I couldn’t believe what I was seeing.

For the first time ever in 5 years, 1 month and 2 days, Jake stood up and walked on his own. This is huge; my friends say that is bigger than huge.

I don’t know when Jake will do it again, (I know he will), but I was there for the very first time that he did it, and it was a special moment that I envisioned, even dreamed about for so long, and now I have that moment.

The Zen master

2007-07-06T21:25:00.000-04:00

Here is a picture of Jake doing Yoga with his OT. He looks so cute doing it. His OT started doing simply yoga poses with him about 2 months ago. In the beginning, he couldn’t imitate any movement; she had to do hand over hand with him 100% of the time. I was open minded to her idea of trying Yoga but in my mind, I really questioned whether or not Jake can follow any of her directions. Surprisingly, Jake enjoys Yoga, well only for about 10 minutes. He is actually doing some simple movements on his own, and some with less hand over hand assistance, and of course some he still needs maximum assistance to accomplish. Nonetheless, his OT and I are happy with Jake’s improvements in following directions and imitating movements. Here is another pose called “snake”.

I made some pictures and symbols for Jake, the idea is to place pictures in a sequence such as “mom” “drive” “Jake” “school” on the back of the passenger side headrest where Jake can see while I drive him to school each morning. I can interchange the driver and the destination depending on the situation, for example, I can display “Mom and Dad” “drive” “Jake” “grandma” when we go to my mom’s for dinner on the weekends. I am just trying different ways to communicate with Jake better. I feel strongly language and communication is the area where he needs the most help.

It has been a while

2007-06-27T20:18:00.001-04:00

We are currently planning a trip to St. Louis Children's Hospital in early August. We have an appointment with an ophthalmologist there who specializes in the diagnose and treatment of vision issues with children with special needs. Just so happens, the 4th Annual Cerebral Palsy Conference will be held the weekend before the appointment, so we plan to attend the conference as well. Hopefully, between the conference and the appointment, we will gain additional insights on how to help Jake further along in his development. I am not really looking forward to the flight though, I am not a big fan of flying to begin with, and adding Jake to the equation I feel even more stressed out. Things like how to take him to the bathroom; how to change him in case he wets his clothes, etc. worry me, but I am sure when there is a will, there is a way.

Today was Jake’s last day of school at Apply Pre-School, while reality hasn’t fully hit me yet as he still has 6 weeks of summer program left at the school, I know by early August, I am going to feel so sad that I will not step foot into that building anymore, which is something I have done almost daily for the past three years. For the rest of my life, I will think of Apple Pre-School, its teachers, therapists, administrative staffs, classroom aids, nurses, volunteers, even the security guard with fond memories, and much gratitude.

One more thing, Jake is making improvement in his walking. On a good day, he can walk one city block with me holding just his one hand only. I am just thinking if he can master walking while holding one hand by this winter, it will be very exciting. Two winters ago, I said to myself, this is it, this is the last winter I am able to carry Jake around cuz he is getting really heavy. Then last winter came around, I was still carrying him, at times I couldn’t even see where I was going with him wearing a huge winter coat. Again, I thought to myself this is it, this is the last winter I am able to carry him like this. So, I am still hoping that finally, this winter Jake can walk more so I don’t have to carry him as much.

Busy weekend - Jake's birthday party went GREAT

2007-06-12T10:39:00.000-04:00

This past weekend was a busy weekend. On Saturday, we were at the car dealer for over 4 hours. We finally purchased a much needed second car, bigger with more leg rooms for everyone. Jake’s strollers and walker will be able to fit in the cargo area.

Then, Sunday was Jake’s birthday and he turned 5 years old. I went to get balloons right before the birthday party, who knew there was such a long line for balloons at Party City. I was online for almost 45 mins, I was worried I was going to miss Jake’s party. :-)

As I wrote in my previous blog, it was the first time we threw a party for Jake, so I especially was a bit nervous. But everyone came, about 30 adults and kids, and everyone had fun. We had swings for the kids, bubbles, some crafts, and lots of other toys. I really wanted to do some group games to get all the parents and kids involved, and we ended doing 2 games and everyone had a blast. Kids wanted more games but we had to cut the cake. After the cake, maybe it was the sugar, the boys went wild chasing after each other but that was expected right?!

Today we are having another little party with Jake’s class in his school. He goes to a school for children with special needs. His teacher, therapists, aids, and kids are so kind to him always, I am going to miss them all after this summer, because Jake is going to a new school starting September. A new chapter will begin and new relationships will blossom.

A second chance

2007-05-30T21:11:00.000-04:00

My husband will start a new job soon, he is super excited, he loves the company culture, philosophies, as well as the challenges the new responsibilities will bring. His current company is downsizing due to corporate merger, but I was never really too worried even when over 50% of his colleagues were laid off, because I believe as one door closes, another door always opens. Jake has taught me to adapt myself in life situations, and not be so fixated on making plans. I mean after all, the life we have now is not at all part of the plan we had after learning that we were about to become parents.

Almost 4 years ago, my husband was equally excited when he received the acceptance letter from one of the top MBA schools in the United States. But the letter came in the mail within the same week that we received confirmation from the pediatric neurologist that Jake had brain abnormalities. That week, all of our dreams and hopes for the future were completely crushed and we were scared and lost. But we knew there was no other choice to make but to do everything we can to help Jake. So we decided that I would quit my job to take care of Jake full time, and that my husband will not attend the MBA program and continue to work full time to support all of us, because more than ever, we needed the money and the medical coverage for Jake’s medical treatments and therapies.

Looking back, I don’t regret for a moment the decisions that we made that week to give up our own plans so that Jake can have a chance of a brighter future. I would do that for the rest of my life for Jake because I am his mother. But I am very happy that my husband has a second opportunity to pursue his dreams and look, I will reap the benefit as well, I am getting a new car very soon…hopefully! :-)

wanna come to a birthday party?

2007-05-14T21:28:00.000-04:00

Jake’s birthday is coming up in a month; he will be 5 years old. I have never planned a birthday party for him in the past, since birthdays were always bitter sweet.

When he was one, I was still so naive about his condition, and had no idea what was ahead of us; When he was two, I was much more aware of the severity of his developmental delay, and I was frantic in searching for every therapy out there, while still holding on to the hope that one day, he will be “normal”; When he was three, I went through a period of depression, and some nights I saw no light at the end of the tunnel; When he was four, I began to realize that life has to go on in spite of Jake’s disabilities, but I still didn’t know how. Then I started this blog because I wanted to remind myself out loud, in words where everyone can read, that I want to and must celebrate my son for who he is, disabilities and all.

In a month Jake will be 5, I feel like I have come a long way. I can now walk into a park full of children running and playing without falling apart; I can now tell the psychologist who evaluated Jake that I don’t care if he labels Jake mentally retarded, because a label does not define who Jake is, not yesterday, not today, and certainly not tomorrow.

So this year, I am planning a birthday party for Jake, and if you would like to join the party, just let me know!

Jake got his first certificate

2007-05-03T17:41:00.000-04:00

Today, for the first time ever, Jake received a “Huge Success” certificate from his special education teacher at school. The Certificate reads “Presented to Jake Li, for good Listening. Jake is having a great day! He is repeating more words + following many 1 step directions. He was placed on the toilet at 10:15 and at 10:20 he was successful!”

As if that wasn’t enough to put me in a good mood after a long week of work, Jake’s PT told me during therapy at school this morning, Jake walked 10 steps on his own, and everyone at the therapy room who saw it were cheering for him!

OK, I officially announce I need more days like today! :-)

Great job, Jake!

She reminds so much of me

2007-04-23T21:22:00.001-04:00

Here is a picture of us at the East Side Gallery, where different artists painted a section of the Berlin Wall.

OK, the real reason that inspired me to write today's blog is that I know another mom whose daughter is a special needs child. She reminds me so much of myself when Jake was younger. She is consumed with getting as many different kinds of help as she can for her child, so was I; she is desperate in seeing some improvement in her child’s development, so was I; she is searching for a miracle that will end this nightmare once for all, so was I; she has so much fear that her child will not talk and walk like every other child on the street, so had I, and she is in so much pain for not being able to change the destiny of her child, so was I; she asks God, why my child, why me, why us? So did I.

It is almost painful to see someone experiencing that kind of pain as I experienced it. But I tried to share with her that, over the years, I have seen friends’ and neighbors’ babies much younger than Jake growing up and far surpass his development; and I’ve came to the realization that it is too painful to torture myself for not being able to change what it is. I remind myself often that it is not enough to want to improve his functional skills, but that I must celebrate Jake for who Jake is, proud of him for who he is, despite his disabilities.

So to my friend, I have no word that can ease your pain or take away your fear, but I hope you can find comfort knowing that you are not alone in feeling the way you feel.

We are back at last

2007-04-16T21:18:00.000-04:00

Wow, it really has been a long while since I last wrote. In March, we went to Michigan for 3 weeks of intensive suit therapy. Jake made amazing improvement as a result. During the first 2 weeks, he cried so much and I felt so bad for him, even though his therapists assured me over and over that he wasn’t hurt in anyway. She said he was crying because the exercises were very demanding, and he was feeling muscle soreness.

Amazingly, during the last week, Jake began to take steps on his own, 2, then 4, then 6. Can you believe it, on the last Friday that we were there, Jake took around 16 steps on his own, and I have the video clips to prove it. Granted he hasn’t taken that many steps since then, but every time I watch the short clip, I am so proud of what he had accomplished, and I have so much hope that he will do it once again. For right now, he is taking 4 steps on his own more consistently.

Then in April, my husband and I went on a European vacation while my mom took care of Jake. In 10 days we visited Berlin, Prague, and Vienna. Vienna was my favorite city out of the three. The people there were friendly, and place was beautiful, the weather was great every day.

Jake’s speech therapist did a few sessions with him at my mom’s house. Grandma was absolutely surprised by the fact that Jake responded to every one of his speech therapist’s questions by vocalizing and pointing. She was very encouraged bythe therapist’s positive comments about Jake’s ability to communicate. Tomorrow Jake will have an evaluation done by the psychologist from the district, it is part of his turning 5 evaluation. Wish us luck!

Finally an update

2007-03-19T19:45:00.000-04:00

Oh my God, I really haven’t posted forever. But then again, sometimes no new is good news if you know what I mean.

This week, Jake is in Michigan attending 3 weeks of intensive suit therapy. This is week 3. I came back home last night because I have to work this week, my husband is with Jake by himself, which is something he has never done before. I am sure he will forget something here and there, but you know what, he needs the practice!!

The Make A Wish Foundation called and told us that they have approved Jake’s and our wish to have the entire suit therapy exercise equipment unit. We are very excited and grateful for this generous gift. The therapist in Michigan believes Jake has the potential to be an independent walker (with lots and lots of work), which gives us hope that with hard work, persistence, and faith that Jake will reach that huge milestone – walking independently. And to be honest, I can’t carry him anymore, he weights about 45lbs.

Another exciting news is that my husband and I will finally go on a vacation next month while Jake stays with my mom. His respite worker will come everyday to give my mom some break. Wow, we haven’t been on vacation forever! My husband is planning the whole trip, from the hotels, to the locations, everything. I don't know where I am going or what I am going to see. I said just surprise me...just take me somewhere, anywhere... :-)

Business as usual

2007-02-16T13:27:00.000-05:00

I haven’t written for awhile, my days are pretty much split between work and Jake. Jake hasn’t done anything new since my last post, and if anything, I think his attention is not as good lately. It is very frustrating when he can not do some of the things that he did before. I see lost of skills from time to time, and it is very frustrating.

We found a house we really like, my husband is spear heading the effort, and I am keeping my fingers crossed that maybe we will have a new home in a few months. The reason why we are looking to move is solely for Jake. There is a good school for children with multiple disabilities in that area, and we want to move closer so the school district can approve Jake going to that school. It is a very long and complicated process for children with disabilities to receive education and related services in an appropriate school. The most important key in this matter is that the parents have to be strong advocates for their children so their needs can be met.

I went to a swim competition that my 7 year old nephew and 11 year old niece participated in. There were probably 50-60, if not more children in the competition, and more parents, grandparents, siblings were there. I went there with Jake, and to be honest, I was proud of my nephew and niece but other than that, I didn’t allow my mind to wonder because if I did, I knew once again, my heart will ache for what will never be for Jake, and what will never be fore me. I will never be one of those parents shouting and cheering in a swim competition, or any competition for that matter. But let me tell you, I will be there cheering when Jake makes his first independent step, oh, yes I will.

busy busy busy

2007-01-31T19:08:00.000-05:00

Oh, where do I begin, I have been super busy since I started working 4 weeks ago. 　Starting this week, Jake is back to his regular school and therapy schedule after a week and half of being under the weather. He even got a hair cut yesterday. I take him to the same Korean lady every time, she is very gentle with him and tries to do it as quickly as possible. She knows about Jake’s challenges, and even tries to encouragement me every time she sees us by saying how much stronger and more alert he is compare to the last time she saw him. I appreciate her kindness and consideration very much.

Guess what, tonight Jake took off his socks and pants all by himself before taking a bath. OK, maybe he only gets a C for coordination and motor planning for this task, but he definitely gets an A++ for determination and effort.

Usually Jake won’t finish a peg puzzle on his own unless I sit with him and give him one puzzle piece at a time. But two nights ago, I gave him a very simple shape puzzle that included 3 pieces, and I asked him to finish them on his own while I get him a drink. Guess what, when I came back to the room with his drink, he has already finish the puzzle and was waiting for me with a big smile. Another A++ for Jake!

That is it for now, I need to do some catch up on some emailing since Jake went to bed early tonight. Kevin (PT) made him work really hard this afternoon and didn’t let him take a nap, and yet, Jake still loves him.

Jake, the rock climber, maybe?

2007-01-19T13:11:00.000-05:00

Jake is sick again due to the recent temperature fluctuations. He has had fevers for the past two nights; they usually were the highest between 1 am to 3 am. Along with rising temperature, he was arching his whole body and was crying as if he was in pain. The problem is we don’t know what and where he was hurting since he is non-verbal.

I have today off; I contacted a PT (physical therapist) who was recommended to me by Jake’s OT (occupational therapist). We love Jake’s PT Kevin and would not trade him for a million dollars, but this particular PT is offering something very interesting. She is attempting to put together a rock climbing program for children with CP. She told me she is a climber and would like to offer a climbing class for children with disabilities. The goal of this project is not only to provide therapeutic benefits, but also to provide an opportunity where special needs children can participate in a leisure activity as well as meet with other children with similar needs.

She is going to keep me informed of the first session once they finalize the time and place. But there is a possibility that Jake may be too young to participate due to requirement of the climbing facility. But we will see.

I am no longer unemployed

2007-01-08T21:03:00.000-05:00

So the latest news is that I started working part time this week. Today was the first day, and I survived! For the past 4 years, my life revolved around Jake’s needs. But now in addition to taking care of Jake’s needs, I will have a chance to do something else to balance my life a little bit. However, I am grateful for the experience in the past 4 years, not only because Jake has made a great amount of progress, but also because I have gained great friendships with many people who’ve came into our lives to help Jake. They have shown my child kindness and compassion, and they have transformed me into a kinder human being as well.

Don’t worry about Jake, he is well taken care of by his respite care provider after school, and soon his grandma will be here to help take care of him on the days that I have to work.. Grandma will spoil him rotten with all kinds of yummy food and she is only ecstatic that I won’t be there to stop her!

Standing Tall

2006-12-27T22:25:00.000-05:00

Jake is standing on his own for up to 30 seconds more and more consistently now. That is something he has never been able to do before and I am hopeful that he can improve to a minute, then longer and longer after that. To many people, this may sound so insignificant; but to Jake, to us, and to Kevin (his physical therapist), this is a huge milestone.

He is also getting the idea of putting letters together to form words, not exactly spelling them yet, but conceptually, he understands the idea of putting several letters together to make a word. Jake is also identifying many action words; he not only identifies objects by their names, but also by their functions. For example, when asked “where is the umbrella?” he picks out the picture of umbrella. When asked “what do we use when it is raining?” he can also pick out the picture of umbrella amongst other pictures. While his receptive language seems to be improving, his express language remains severely impaired. For whatever reason, he just can not produce sounds other than “b”, “p”, “m”, “o” and recently he started to make the “f” sounds, but those are all the sounds he can make after 3 ½ years of speech therapy. Well, we can’t have everything, can we?! But Dear GOD, we really do want everything, we really really do...

It is almost Christmas

2006-12-19T10:00:00.000-05:00

We went to Boston this past weekend to see some friends I met online. They also have a child with specialneeds, so the bond between us was instantaneous. Jake has really mastered using his chopsticks; he even picks up peas with them. The workers at a Chinese restaurant we went to have dinner at, thought it was hilarious just how focused he was while trying to eat with chopsticks.

It is almost Christmas; Jake’s speech therapists had a party at the office yesterday. At first, I hesitated bring him there because I knew he gets very overwhelmed in crowded settings like that. But I decide to bring him anyways even just for a short time. Melanie, Jake’s new respite worker came with us and she was a great help. Jake was overwhelmed at first, so we took him to a small room just us, and he had his pizza there and read some books. Then we went into the party room where he saw all the kids were coloring, and he did some coloring as well. Shortly after that, Santa arrived! HO HO HO! Jake got presents from his speech therapists and a goody bag from Santa.

Merry Christmas from our family to yours. We wish 2007 will bring more progress, health and good fortune to Jake and all the children like him.

Let's push theose wheels

2006-12-14T20:49:00.000-05:00

Here is a picture of Jake when he was 6 months old. You know, the one between the bear and the frog.

This week the weather is exceptionally warm in NY, which is great and I am taking full advantages of it. Here is how: Jake got his new walker about a week ago. I started to have him walk with his walker from our apartment out to the car, which is parked on the street, and also from the car into the apartment. He did great; no complain no whining, just needed occasional help with turning. Today I took it up a notch; I had him to walk with the walker from where I parked on the street all the way into his classroom, which is about 2 city blocks in distance. We did that twice today. He did awesome, just a tiny little complain at the end of the second trip.

I don’t really care when strangers on the streets walk by and look at us, look at Jake walking with his walker, in fact, I am so proud of the fact that he is walking with the walker. I am ecstatic over the fact that he is gaining independence and confidence. Actually, in the past 4 days that we have been practicing walking outdoors, Jake has gotten “thumbs up” from many people; the porter in our building, the school bus drivers and girls that help out on the bus, the classroom aids, his after school speech therapist was ecstatic when she saw Jake walked into her building by himself using the walker.

My mom is coming back from Shanghai at the end of January, I am thinking if Jake can walk from our apartment to hers wouldn’t that save us some gas money? Just kidding.

Chopsticks, chopsticks

2006-12-05T18:50:00.000-05:00

This afternoon, Jake ate his snack with “chopsticks”. I know, even snack time is therapy time, poor Jake! Jake’s OT gave him the chopsticks not long ago. As much as he was motivated by the food in front of him, he couldn’t use the chopsticks at all in the beginning, because he had a hard time controlling his fingers.

I practiced with him a few times, and his OT practiced with him a few times. He slowly gained some control but it wasn’t until this afternoon that he interpedently ate with these chopsticks. They are made in Korea and are sold at a Korean supermarket for approximately $4. Apparently, they are common household objects in Korea. But I think whoever invented this is a genius; I hope he/she is rich from the invention.

Hip Hip Hooray......Jake is all better

2006-11-29T21:12:00.000-05:00

Jake has finally made a full recovery. As of this week, he resumed all normal activities which include school and therapies.

I can’t believe 2006 is almost over. One of the objectives I had for this year is to look into special needs planning. Basically, I want a plan in place for Jake’s care in case something happens to my husband and I. My husband for one reason or another refuses to even give the matter a thought. I on the other hand, feel very strongly that it is something we must do. Just the other day, this lady driving a huge SUV almost ran into my little Jetta!!!

I have made an appointment for a consultation with a lawyer, but I need to read more and be more educated about the issues before going to the appointment. I admit it is not exactly a fun subject to discuss or read about, however, it has to be done.

Jake got really upset during OT yesterday, and again got really upset with his speech therapist this afternoon, because in an attempt to open his mouth more, she stuck this really nasty tasting therapeutic thing in his mouth. That was the end of the speech session, Jake pushed her hands away again and again, and as soon as he got a hold of my hands, he started to walk out. I think it is a good developmental milestone that he is showing his emotions and dislikes instead of being indifferent, his therapists agree.

Oh, did I mention with regard to the special needs planning, I am considering adding something like in an event something happens to me, my husband is not allow to get married again.... :-)

Can I get som sleep around here?

2006-11-22T20:21:00.000-05:00

Jake has been sick for over ten days now. He has been on zithromax (an antibiotic that fights bacteria in the body), prednisolone (is a steroid medicine which reduces swelling and lowers the body's immune response), bromatane (a cough suppressant), tylenol and motrin (reduces fever), and just yesterday, started another antibiotics called augmentin. In addition, he has been on daily xopenex (inhalation solution which relaxes the tightened muscles around the airways in the lungs) and pulmicort (a steroid that prevents the release of substances in the body that cause inflammation).

In summery, he has been so sick, and I am so tired. He missed two weeks of school and therapies which included PT, OT, and Speech. We were supposed to visit some friends in Boston and spend Thanksgiving together, that plan has been utterly and completely thrown out of the window. For most, I hate to see him so miserable like this; secondly, it really holds him back when his routines are interrupted for such an extended period of time. Because it means once he is well, we have to rebuilding his strength, endurance and momentum.

I really try to keep this blog a positive one, but things have been pretty rough around here. I am always looking for inspirations to get through days like today when I feel like I have had it. One major source of inspiration comes from another blog which mostly is about financial investment. However, the author is a 39 years old man with stage 4 colon cancer; he has a son who is 2 ½ years old. Today he wrote “For one reason or another, god has chosen this road for me to travel. And guess what, I will gladly walk this line until I am absolutely down and out. You know me by now - it's not that easy to put me down. And this is all I have to say: " Let's get it on!"

My mysterious boy

2006-11-14T22:54:00.000-05:00

Looking at this picture taken just last evening, I wish we can all smile with such innocence.

I discovered last night that Jake can do something really amazing with the letters.

I used to place 4-8 letters in front of him and ask him “where is E, where B, where is X…” and he picks out each letter correctly, and that was how we knew he knew the letters, even though he doesn’t know any colors or shapes. Strange right?

Last night, I changed the game a little bit. I randomly placed 4 letters in front of him, for example, B, O, S, Q, and I asked him “Queens starts with what letter?” He looked at all the letters and picked out Q, and then I asked “Book starts with what letter?” Sure enough he picked up B. Today I gave him one word for each letter, and he got almost all of them correct. The errors he made were with words he has never heard of before.

Get this; my husband asked him “iPod starts with what letter?” Can you believe he picked up letter “I”? I was shocked; he wouldn’t have the slightest idea what an iPod is. Heck, I don’t even have one; I don’t even know how to use one! Do I need one?

The best thing out of all this is the fact that he truly enjoys playing the letter games. Unlike all the other table top activities I do with him, which he looses attention and focus after a few minutes unless I have food as a motivator, and even then he hates them especially stacking or building blocks.

I am not sure what is going on in his little brain, but we will keep working on the letters because they are fun to him.

Wishing up on a Star

2006-11-12T18:04:00.000-05:00

The Make - A - Wish Foundation is one of the world’s most well known charities; its mission is to “grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.”

A few months ago, I referred Jake to the Make - A - Wish Foundation through its official website, and with the help of his wonderful pediatrician, Jake was approved as a wish child. Today, two wonderful volunteers from the foundation came to visit Jake, in the pouring rain mind you. Once again, this just goes to show the generosity and kindness that exist amongst people, and we are so very grateful to witness and experience that. Indeed, Jake has opened our hearts and eyes to see the best things in life which can not be measured by money or anything else we normally value in life.

The volunteers asked us some questions about Jake, and we had to sign some papers. No big deal, then, they popped the question: “So what is your wish?” They asked us the question since Jake is non-verbal.

My husband and I each had a wish idea. His was to convert one room into an exercise room for Jake, and purchase some exercise equipments that we couldn’t otherwise afford to buy for him. My idea was to bring Jake to Florida to attend a swim with the dolphins program for special needs children. The volunteers were genuinely excited about both of our ideas, and to my surprise, they said that none of the families they visited in the past has ever mentioned either one of our ideas, and they have been doing this for over 15 years. Wow, I guess we are just that original, huhnnnnn. :-)

We will be super excited no matter which wish the Foundation grants for Jake. Not a bad day after all, right? Considering we woke up at 6AM this morning only to find Jake burning up with a 104 fever. He had an easy day after that, his chores for the day were pretty much take naps, or watch TV, or eat and drink.

Please don't let this be an one night thing

2006-11-07T20:43:00.000-05:00

Dear God, I hope I am not going to jinx myself by writing this, Please.

I have some amazing good news to share. Tonight for the first time, Jake walked by holding onto one hand only. OK, the walk was not perfect, and it had to be his left hand that was held, not the right, and he couldn’t walk long before he needed a break. But what the heck, he did it! The prize was raisins on the other side of the room, (organic raisins I bought at Wholefoods). He walked back and forth in the room with me holding his left hand several times.

I am very excited, it is totally over shadowing the fact that 50% of the work force in my husband’s department got laid off this afternoon. He dodged the bullet yet once again, but he says that soon, the whole company will be dissolved as a result of merger and reorganization. OK, I am going to be sad and worried about this later, right now, let me just celebrate a major accomplishment by Jake.

I couldn’t take any pictures or video clips, sorry, I was home alone. I have to show it to Kevin (PT) tomorrow. I hope this is not an one night thing, I am not going to write too much because I don’t want to jinx it. :-)

TGIF

2006-11-03T11:40:00.000-05:00

Good news to update, I think Jake’s leg is finally getting better. This morning, he was able to walk while pushing his stroller again. He was not limping, well maybe still a little bit, but he was bearing weight much better.

Just as his development seems to improve, he always has some kind of set back. This journey is really a true testament of patience, perseverance, and faith. The picture on the left was taken in Nov. 2005, notice Jake needed a brace all the way up to his waist to maintain an upright position. The picture on the right was taken in Oct 2006, notice how nicely he was standing without any brace. You just have no idea how much work, sweat and tears it took for this little guy to go from left to right! We are very proud of him.

Next week I will attend a Parent Information Meeting for “CPSE Turning Five”. Basically it will be a meeting to inform parents about the transition process from CPSE to Kindergarten for youngsters with special needs. We are not sure which school will best fit Jake’s needs after he turns five years old. Currently, we are considering NUCP (Nassau United Cerebral Palsy). But in order to attend this school, we would need to move to Nassau Long Island. We are currently house hunting in that area, but it is difficult to find a house within our budget that meets Jake’s needs. We need something that doesn’t have too many stairs inside and out; doorways need to be wider in case he needs a wheelchair for indoor use; bathroom needs to be bigger, etc. Isn’t that TV show “Extreme Home Make Over” awesome? Do you think they can build us a house when we don’t have a house? :-)

I ordered a pair of shoes for Jake from Hatchback Co. They sell a type of specialized shoes to wear with AFOs (Ankle Foot Orthodics). I read many good customer feedbacks and decided to buy a pair for Jake. He has worked harder than anyone I know this whole year, and he totally deserves a pair of good shoes that is not 2 sizes larger then his actual size just to fit his AFOs.

Happy Halloween!

2006-10-31T10:40:00.000-05:00

So we have officially cancelled our Michigan trip. Jake was scheduled to participate in a 3 weeks intensive physical therapy treatment there, but due to his recent injury, we decided it was best to postpone the treatment. Hey, maybe we can use the money to go on a vacation after all!

Today is Halloween; a lot of kids in Jake’s school are dressed up in their cute costumes. Last year, Jake didn’t understand anything about Halloween. This morning, as I was dressing him in his Tiger costume, I explained to him that he is dressing up as Tiger today. I took him to the long mirror so he can see himself head to toe. He was very excited and every time when I asked him “who is Tiger today?” he consistently pointed to himself. So that made me happy the fact that he responded appropriately to the situation. Little things like this make me happy, because they don’t come easy. My sister will never understand my life, because everything comes so easy for her kids; they walked, they talked, they learned things on their own….

I still remember the first time Jake crawled by himself, and I remember the first time he walked with his walker on his own, and I have imagined a million times for the moment when he takes a step on his own. It is so emotional just thinking about that moment, I don’t know what I will do if and when that imaginary moment becomes a reality.

I know, I will probably pass out.

Wheelchair shopping begins

2006-10-27T22:18:00.000-04:00

Isn't that cute? Jake enjoys his computer game so much while my husband sings along with his eyes close. LOL.

Today there was no school because it was Parent-Teacher Day. Jake and I went in and spoke with his special education teacher, PT, OT and SP therapists.

Jake’s PT and OT advised me that I might need to look into getting Jake’s wheel chair, because his special needs stroller may not be allowed to go on the school bus next year, even though it is a crash tested version, which means he will need a wheelchair. So naturally, I am turning to my best friend www.google.com to learn about wheel chair options. I am mainly looking for a pediatric wheel chair what is light weight, and allows the child to propel the wheels independently. Since Jake has full functions in his arms and hands, I want him to learn to propel the wheels. Anything that promotes independence I am all for it, even if it is in a wheel chair.

Well, during the one on one meeting with his special education teacher this morning, Jake identified all of his letters. He was very proud of himself and I bet his teacher was surprised that he knew his letters. It is important for me to communicate to his teachers and therapists what he is able to do, because I want them to see his potentials despite of his multiple disabilities, and in recognizing his potentials that they expect more from him.

When others expect more from him, I expect more from myself to help him to achieve more. It is a very positive as well as necessary cycle for Jake’s development I think.

I also found out that Jake speech therapist reads this blog, so I better not saying anything bad about her. (hi Susan!!!) I want to thank you for your advise. I tried many times today to have Jake look at me when he requested for things, and he did very well most of the time!

A new language?

2006-10-24T15:44:00.001-04:00

So we are officially delaying our Michigan trip for a week, just so we can give Jake more time to recover from his injury. If he is still not fully recovered a week from now, we will have no choice but cancel the whole trip.

Today, Jake’s OT did some gentle massage, stretching and cranial sacral work on his entire left leg, I want to say that he was bearing weight a little better after that. But it is too soon to sing the happy song at this time. We go back to see her tomorrow night for more massaging and cranial work. She apologized a zillion times for what happened, but the truth of the matter is she doesn’t really know what happened or how it happened. Only if Jake could talk, then the “mystery” can be solved. But then again, if he could talk, a lot of other things can be solved as well.

I was just thinking I am so grateful to the internet. When we first realized the severity of Jake’s medical issues, what saved me was the internet. I spent hours upon hours researching about hypotonia, about dandy walker, about CP, about anything and everything related to his conditions. I’ve also connected with so many parents around the globe and exchanged valuable information. I have formed great friendships with women some I have never met, yet I feel like most of the times, they understand me better than my own family does. To me, being a member of the special needs community is almost like being in a “virtual” society, except none of us chose to be in it, but once you are in it for whatever reason, you learned a whole new way of life, a new perspective on people and things, even a new language. I mean how many of you out there know what is hypotonia, what is dandy walker, what is cranial sacral, if you don’t live in my “society”. While I am at it, what is an IEP, what is EI, CPSE, CSE? I told you, a whole new language. But ask any of my good friends in Atlanta, Michigan, New Jersey, Illinois, and Minnesota, they can explain the terminologies better than I can.

OK, let me stop rambling about nothing.

A little set back

2006-10-23T09:00:00.002-04:00

Warning, this isn’t going to be a “positive” update, although I will try to be as positive as I can under the circumstance. (By the way, that is suppose to be a picture showing me being frustrated).

This past Friday afternoon, Jake had his OT (occupational therapy) session as usual. Unfortunately, he was injured. I stepped outside of the building to answer a phone call, and when I came back, he was sitting on the floor apparently upset. The OT and I both thought he was upset because she had got him off the swing (one of his favorite activities). I got him off the floor and tried to walk him to the table like we always did, but he clearly was in pain and couldn’t even make one step. The OT then told me after she got him off the swing, she proceeded to turn him around and he started to cry. We ended the session early because he was just not himself.

We came home and Jake took a nap, I was hoping that by the time he woke up, whatever pain he had would have subsided. But he woke up and he still couldn’t bear any weight on his left leg. I called his PT (physical therapist) Kevin, whom I really trust when it comes to Jake related issues. He came over after work and thoroughly checked Jake. There is no apparent swelling, redness or bruising, he is able to sit, crawl, and make transitions on the floor, and Kevin thought it is unlikely that he broke anything. We think he twisted his left knee somehow. Kevin recommended that we let Jake rest, no weight bearing, and ice the knee (although there is no swelling).

It is Monday morning, Jake is still unable to weight bear on the left side, although I WANT to believe he is willing a little bit more compare to Friday, which is a good sign that the pain is lessening. We are scheduled to leave for our Michigan trip in less than 5 days, and at this point, we are not sure if he can go and participate in the intensive therapy.

He was walking and standing so well before this past Friday, now he won’t even put his foot down. We’ve already paid for airline tickets, hotels, and what if we can’t go? OK, how can I be positive under this situation? Be patient, I tell myself, having a child with special needs is like running a marathon, I must be able to adapt to changes and unforeseen circumstances, and pray, pray a lot.

Did he really stand by himself?

2006-10-18T20:44:00.000-04:00

well, I am almost 100% certain that Jake stood by himself for 3 seconds today. It happened at his speech therapist’s office. We were waiting for the therapist to get ready, and I had him stand and told him to show Irene and Maria that he can stand by himself, and then he did, for like 3 seconds. Irene saw it but Maria missed it.

OK, then when we got to his physical therapist, Kevin’s office, the first thing out of my mouth was “guess what, Jake really stood by himself for 3 seconds today, let him show you.” I can tell, Kevin was excited about the news as well. Then nothing, Jake didn’t hold the standing position. Come on, I am thinking to myself, out of all the people, Jake, you’ve got to show Kevin something, he works so hard with you!

Anyways, maybe he will tomorrow. For the first time in a long time, I am really hopeful that Jake will stand by himself. To me, he must be able to stand independently if he has any chance of walking independently. Maybe I am still hoping for the impossible, but hey, it is better to have hope than not.

Dedicated to little Kevin

2006-10-16T23:37:00.000-04:00

I just received very sad news, a little boy in Jake’s school passed away this afternoon around 1:30pm. His name is Kevin, and he is 4 years old. I have seen Kevin many times in school. I have stroked his hair, and touched his face, because he was such a cute little boy that I could hardly resist not to.

Just seven days ago, Kevin was going to school, working with his therapists, riding on the school bus; but this afternoon, Kevin left his family and became an angel in heaven.

My heart felt condolences go out to Kevin’s family. From one family with a special needs child to another, I can relate to the heartaches and challenges they have had to deal with related to Kevin’s needs, but I can not even for one minute, imagine the pain and the suffering they must feel at this moment.

I wonder why did Kevin come into this world only to leave so soon. Well, people say everything happens for a reason, and I believe that, even though most of the time, I don’t know what the reasons are. But I do know that little Kevin has touched my life, and the lives of many others, and we will miss him. In heaven, Kevin will run around, sing and play all day long, and then sleep like a baby when he is all done with his day.

Bear Mountain State Park

2006-10-15T19:10:00.001-04:00

Today we went to Bear Mountain State Park. It is about 40 miles north of New York City. Jake has a cold so I am not sure if it was the right decision we made to go there today, if my mom was here, she would probably say no. But we stayed home all day yesterday because he was sick, and today we just had to get out of the apartment to get some fresh air.

It was a really nice day; the sun was out most of the times. We walked along the river bank, saw lots of geese, and took some pictures. Jake even got to ride the in door Merry Go Around with daddy. In the end, we took the scenic route and drove up to the top of the mountain and took some more picture.

One the way home, Jake didn’t sound too good, he was very congested but hopefully he will get over this cold quickly. Even though he still gets sick very easily, I have noticed that along with his physical improvement, his immune system has also gotten stronger. He used to “live” on his Nebulizer Machine, now we use it much less. I hope one day I can get rid of this thing for good.

Get me off the treadmill

2006-10-15T00:37:00.000-04:00

Here is a picture of Jake during yesterday's physical therapy session with his favorite therapist, Kevin. (The BEST therapist ever).

Jake is almost able to transition from a sitting to a standing position without any support. I know it sounds like something so insignificant to a person without physical disability. But you just have no idea how much muscles and brain work it takes for your body to go from sitting to standing.

Yesterday when Jake was practicing his walking on the treadmill, after about 6 minus, he decided that he had walked enough. He proceeded to turn himself around to get off the treadmill while the machine was still on. However, he couldn’t turn himself 180 degrees, he only got to 90 degrees, and he ended side stepping on the treadmill while holding onto the side bar. It was really funny to see him problem solving and trying to keep up with the speed while walking side ways, which again it is something very difficult for him to do.

Our Michigan trip is coming up. Vacation? You ask. Not exactly. Jake is going to participate in a 3 weeks intensive physical therapy program at the Pediatric Fitness Center in Keego Harbor Michigan. This will be our third treatment session there in one year.

My husband is really good at planning the logistics whenever we take a trip anywhere. He maps out routes, books all the hotels in advance, and even gets directions to nearby restaurants, supermarkets and other points of interest. He is really good at planning when it comes to this type of things, however, remembering what I ask him to bring home after work is …. Let’s just say not one of his stronger points.

The intensive suit therapy program has really helped Jake a great deal in terms of strengthening his weak muscles, and improving his endurance. Because in the past, all of his physical therapy sessions have been no more than 30 minus each time. But when you do suit therapy, each session lasts 3 hours long, and you do it 5 days a week for 3 weeks straight. I remember our first time there, Jake cried everyday for the entire 3 weeks, because he wasn’t use to those types of exercises and intensity. Now he is a pro at it!

New York Aquarium

2006-10-09T15:14:00.001-04:00

Today is Columbus Day, Jake doesn't have school. My friend Julie and I made plans to take the boys to New York Aquarium. She has 2 boys, age 5 and 3, and Jake is 4, so together we have 3, 4 and 5.

It is a very nice day, so warm that kids are running around in tan tops. I wouldn’t dare let Jake wear anything less than a long sleev shirt, because he gets sick so easily. As a matter fact, I think he is coming down with a cold as we speak.

Anyways, I feel like I have “grown” a lot in the past 3 years. I remember there were times when I couldn’t even take Jake to the park. I literally had melt downs seeing other kids running and laughing in the playground. It always took so much effort to motivate myself to take Jake to the park, because the grief I felt inside was just unbearable. It wasn’t just the playground; there was the mall, IKEA, restaurants, friend’s children, TV, kids are everywhere if you haven’t noticed. I just wanted to hide from everyone and live in my own Jake’s world.

But today there were lots and lots of children running around in the Aquarium, and there were my friend’s two boys. They were just having a ball seeing all kinds of fish. Well, I guess there will always be something in my heart that aches for Jake, but for the most part, I was content that Jake was pointing to the fish, sharks, and stingrays in the tanks. He kept on bothering the 5 year old by pulling on his hair, and shirt, and just giggling like crazy.

I don’t think I am there yet, but I think I am closer to finding acceptance and peace. Now, I just need to go on a vacation!

Happy Birthday

2006-10-05T11:36:00.001-04:00

Today is my husband's birthday. Happy Birthday, honey.

So we haven’t taken too many vacations since most of our trips have been “therapy” trips. Here is a picture taken when we were in Hainan Island. Boy, do I wish we are there right now.

I have to admit with guilt, that almost all of my energy goes into Jake's therapies, Jake's needs, and everything and anything that is Jake related, to a point that I don't do anything special for my husband, or for myself. If anything, I am always complaining that my husband isn't involved enough in Jake's care. My mother always takes my husband's side when I complain, and at that moment, I was annoyed that she wasn't on my side. But the truth is my mother is right. I have a wonderful husband, who is a loving father to Jake, and he is a great son to his parents and mine.

Everyone must have very special moments with their spouses. For me, there are many as well, but the one that is on the top of the list happened in the hospital. During one of Jake’ surgeries, we were in the pre-operation room. Jake was lying there looking very lost in that big and impersonal hospital bed. I saw my husband bent down and gently stroked Jake’s hair, he gave him a kiss and said “daddy loves you”. Poor Jake, he had no idea he was about to go under the knifes, but I know he felt safe knowing his daddy was right there by his side.

Let's see...................

2006-10-04T10:21:00.000-04:00

Let' s me just do an inventory of a list of things, because the list is getting so long I can't even keep track of them myself:

Number of specialists Jake have seen in the past 4 years:

Pediatrician - 3
Neurologist - 5
Orthopedics - 4
Genetics - 1
Audiologist - 1
ENT - 1
Dentist - 4
Osteopathic doctor - 2
Allergy/Immunologist – 1
Ophthalmologist – 2
Number of hospitalizations　-4 (I think)

Types of therapies Jake has done or continues to receive :

Physical Therapy
Occupational Therapy
Speech Therapy
Aquatic Therapy
Hippotherapy
Intensive Suit Therapy
Conductive Education
Therapeutic Listening therapy
Osteopathic Manipulation
Sensory Integration and Learning

*** OK, I am not going to list the number of therapists who have worked with Jake, let's just say the saying "It takes a village to raise a child" really applies here!

Types of adaptive equipment Jake uses for various activities:

AFO - Ankle Foot Orthotics
Walker
Stander
Tripod Canes
Augmentative Communication Device
Special Needs Car seat
Special Needs Stroller

Looking over the list, it seems so sad that our sweet child needs all of these devices and therapies and specialists, but again, I remind myself to look at the positives, and find inspirations.

In the past four years while there have been so many challenges and heartaches, we have also met some of the kindest and loving people. While almost daily, I see hatred and evil on the evening news, but through the innocence of Jake, I been able to see, and experience the goodness, and kindness of so many people. For that, I am very grateful.

Check out some of the stuff we have at home:

A, B, Cs

2006-10-03T12:13:00.000-04:00

So I finally decided to start a blog, I am calling it “Follow Jake”, because the blog will mainly be used as a tool to keep track of Jake's progress.

The latest and the biggest news as of Oct 3rd, 2006, is that Jake recognizes all 26 letters. We are very excited and proud of his latest accomplishment. I started to imagine and actually believe the possibility of him reading and writing in the future. I even went to Toysrus this morning, and bought him a leapfrog toy that teaches kids how to spell 3 letter words. I know, I am jumping a little bit ahead of myself there.

For those who don’t know Jake, he is an adorable 4 years old boy with a neurological disorder called Dandy Walker Variant. The disability level with patients who suffer from this disorder varies from very mild to very severe. I suppose Jake falls somewhere in the middle.

But with this blog, I really want to focus on what he can do, and not what he can not. I want to remind myself to look beyond his disability, and focus on his ability.

It hasn’t been easy for me to reach this point. I have spent many hours crying over the lost of “what was suppose to be”, and I have asked God a million times “why me, why us, why Jake.” I have tried to drink a whole glass of wine (I don’t drink at all, I have no tolerance for any amount of alcohol), just so that for even a few seconds, I could numb myself of the pain I felt inside. I really envy those who can get drunk and forget about their troubles for a few hours, but that didn’t work for me. Slowly, I came to the realization that I needed to find strength within myself if I want to smile again.

So this is the beginning of “Follow Jake”. Focusing on ability, not disability.