Tuesday, October 28, 2008
I hope I win..
Friday, October 17, 2008
So, how is Ross doing?
His gross motor scores were thrilling and showed absolutely no delay! He is still wearing a DAFO on his right leg only, and he needs to keep practicing walking up and down steps, jumping, and general proprioceptive awareness. However, he is moving around and using all of his limbs just as he should be, which is a huge accomplishment for a kiddo who has CP and who use to have extremely severe torticollis.
His fine motor skills are coming along well, also. Actually, this week he had decided that he loves puzzles and has begun completing a ton of different puzzles on his own. He also feeds himself with a spoon very well, when he isn't using it to spread various foods in his hair.
Ross' evaluation was actually a couple of weeks ago, and I have held off on posting about it, because I have also been holding off on sharing something else that has been going on with him related to his evaluation results. Originally, I hadn't planned to post about this at all, because I was in an emotional tailspin and couldn't see or breathe each time I thought about it. However, I am much more "ok" with it all now, and ready to share. Your comments and emails have always been so supportive and kind, so I feel that I can post about what has been going on.
Ross has officially been diagnosed with Pervasive Developmental Disorder (PDD) which is on the Autism Spectrum. He is having difficulties with both receptive and expressive language, auditory processing, social and interactional skills, appropriate play skills, and sensory issues. He was diagnosed in August, and started receiving wraparound therapy in September. He is also still receiving all of his Early Intervention therapies, so he has quite a lot of therapy each week. In addition, he has had three private evaluations at The Children's Institute for speech, auditory processing, and sensory issues. Each provided more information about what we can do to help Ross, and each reaffirmed that we have already done all of the right things to meet his needs.
As an Autistic Support teacher, I have spoken with many parents about their child's diagnosis of PDD, and helped them to understand what it means. I have helped them to process through the stages of being sad, confused, angry, and afraid for the future. I have stressed to them that this diagnosis simply means that their child will need more intense therapy to learn to speak and interact with others, and that it is not a limit or restriction on what they will accomplish. I have explained that they should always assume that their child will be able to do whatever they want to do, and that this diagnosis will not limit them in any way. Yes, that's what I always said as a professional.
As a mommy, this diagnosis was a blow to my heart, and to my soul. It was far easier for me to hear that both of my sons had CP, as a result of their premature births, than to hear that one of my boys had a disorder that might impair his ability to interact with the world. I spent several days crying, several nights drinking wine. I cried to my mom. I got super busy and preoccupied with setting up wraparound for Ross and focused on the practicalities of meetings and scheduling, so I didn't have to think about my emotions. Then, I cried some more. Finally, I went to the one person who could really answer my questions about what the future would bring:
Ross. That's when I realized that nothing is going to stop this little boy from doing whatever he wants to do in life. Ross is barely two years old and has already overcome so much, and with much aplomb. He survived a pregnancy that was threatened constantly, where his placenta wasn't working correctly from 9 weeks on. He was born 2 months prematurely, weighing only 2 lbs 8oz, and yet his lungs worked perfectly and he screamed for food and gained weight like a champ in the NICU. He had severe torticolllis and plagiocephaly, and had to wear a helmet for 7 long months, and yet has no residual effects. He has CP and was delayed in all gross motor areas, and is already completely caught up and walking independently, wearing just one DAFO.
This is just the next step for him, and he will climb up and over it and amaze us all.
Thursday, October 16, 2008
"He No Longer Has Any Delays"
At his annual meeting last year, Riley was still commando crawling, and was not even able to crawl with his belly up off of the floor. I remember having a conversation with all of his therapists about whether or not he would be able to walk independently, and when they thought that might be. I burst into tears because I was so afraid that he was going to start to become aware that he was missing out on things when he saw Ross begin to walk, and I asked if he could try out using a walker. You may remember this post about the first time Riley used a walker in January and then there was this miracle in May. Now, in October, Riley walks completely indpendently, although he does have a slightly altered gait due to his CP. He still wears DAFO's and probably will for some time. His balance is still not great and he falls often. He has a ways to go with managing steps on his own, running, jumping, etc., but, he is a million miles away from the little boy who made me wonder if he would ever walk on his own.
Riley's language skills are right on target for his age. He says about 100 different words and he is now starting to use 2 and 3 words together once in a while. He is having a little bit of trouble pronouncing certain sounds and his speech therapist and I both believe that his CP is making it harder for him to move his mouth in certain ways, so he will still have speech therapy to address that. His fine motor skills are coming along beautifully, although he still has needs related to his CP that he will continue to address in OT.
This past year has truly been incredible for Riley, and while he does still have some challenges to face as a result of his CP, for today, I am basking in the glow of hearing "he no longer has any delays."
Tuesday, October 14, 2008
New Look....
Leave me a comment and let me know what you think. Please, be truthful....I can take it!