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.