Last post

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"--

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?

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

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

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

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

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

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

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

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

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

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

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

Long Island Park for Special needs children

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

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

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

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

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

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

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.