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?