Happy Holidays

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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

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

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

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

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

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

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?

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

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!