Happy Holidays

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

Jake's annual IEP meeting was today

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

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

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

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

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...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.