This is Dray with his AMAZING neurologist, Dr. Chez. Words cannot express enough gratitude to this man! He is the most caring, thoughtful, knowledgeable, loving, and definitely most determined doctor I could have found for my son. I remember feeling so hopeless as far as medical treatments, because doctors here in Utah had made me feel that there was NOTHING left for him. One doctor said, "what would you like to do.....?" and I literally mean there was just an open end to that question. He basically was telling me he had nothing and I just could tell him what to prescribe and he would do it. But, that is never true! If I have one piece of advice to give to a parent who has been searching and hasn't found relief from this form of epilepsy, I would say do NOT give up! You need to change course get a new opinion... you will find the answer. Dr. Chez from day one was absolutely determined to find the answer for Dray. He was meticulous, asked me lots of questions to really get to know Dray personally, and let me talk and ask as many questions as I desired. He is ALWAYS so responsive...couldn't be more grateful....can I say that again, I probably could a few more times and still not say it enough!!So, Dray is doing well, he is progressing like crazy. Right now we have several concerns. It's deciding which concerns to battle the most aggressively. We are always trying new things to help him with his speech. At this point it's learning the correct words for everything, distinguishing his vowel sounds better, understanding his more complex world, following more complex instructions, being able to socialize with other kids, and being able to keep up with school work. That all sounds like a lot when I write it down. But, I'm just so grateful that he CAN communicate so effectively enough to get by and that he CAN do his school work so well. Trust me...it's a long road to catching up with other kids his age, but communicating with him now, versus 2 years ago is night and day. I will try to put up a video of him talking soon. I keep forgetting to put it on. But, it will give you a good idea of where he is at and you will definitely see the deficits in speech. However, just being able to have a normal flow of conversation, for the most part, is a miracle everyday for our family. I try not to take that for granted.
So here are the things we do to help him progress even more:
With school he goes to a private school that uses ASL along with speech in class. He has an aid to work with him one on one. I am also getting him a tutor once a week to give him even more personal attention with school work. He does well in most subjects. He just has a really hard time with attention/focus and has terrible hand writing. He is not able to do things with the other kids like memorizing poems/songs and he struggles like crazy to with counting...weird. He knows it, but the memory part of counting is where things get ugly for him. He does so much better if he signs it, but is a stinker about that :(
He has 1.5 hours of speech each week. Working on mostly discriminating sounds (earobics on a computer), and also still understanding concepts (first, second, before, after, etc).
He has a music class. Which I did NOT have high expectations for, but he has done amazingly well. He makes Herculean efforts to sing songs and is able to do the more simple melodies. He is probably at least a word behind in every song. I mostly did it for him to practice with pitch and sound recognition, but he is doing amazing with understanding music theory and recognizing different patterns in music.
He takes zarontin, depakote, L-carnosine, and namenda. Thank goodness Dray takes pills now...that's all I can say for that!! He also has a patch for his ADD. It has been helpful for school.
I hope any of this is helpful. I think if I can say one last thing that breaks my heart for him...is his inability to have close friendships. I really could use some good advice, of any kind, on how to deal with that aspect of his life. I really don't know how to help him. I just keep hoping that his speech will catch up and at this point I need to have more patience!! But, that's just part of parenting, right?
