Connor had a speech and language evaluation today. We had been waiting for this appointment for 6 month or so and we were looking forward to getting some more answers to his communications issues. Especially how to help him as we are equally frustrated as he is. While I was describing the behavior issues that go along with his communication issues and his typical 20 times-a-day request to "eat something" and telling us "I can't talk", I was feeling like this is probably the 20th person that I was explaining Connor to and the Doctor recognized this. It was refreshing and comforting that we got the recognition that we will not stop seeking help for Connor until we find SOMETHING, ANYTHING that will help him.
Last night Jon and I discussed what questions we are looking for answers to and what we expect (realizing recently that I, in particular, may have expectations set a little too high usually) and how the Pervasive Developmental Delay has changed how we not only handle Connor but also how we now need to deal with the world. Our family decisions as to what we do and not do are now centered around what he can "handle" yet we are still guessing since we are still learning and adapting to his needs and limits.
Something as simple as going to a Tree Lighting in our town, which we were looking forward to as a new family tradition and thought we made all arrangements (napping him and carrying him around so as fatigue was not an issue) became too much for him and we were not prepared for that. He was not able to tell us what to do that would help him. We couldn't anticipate that he would be sensory overloaded. Equally for his brother's birthday party, Connor was not able to even be with the other kids for unwrapping gifts since he had zero self control and wouldn't stop streaming and hitting. We thought we had prepared him for this event as well explaining repeatedly that this is Declan's party, presents, etc. and what was coming next but this too proved to be too overwhelming for him yet he was not able to tell us how to help him.
So suffice to say I had a lot of eggs in the Speech and Language Evaluation basket since communication seems to be such an issue. What I learned was that he knows what a taxi and a candle are (believe me, this is big!) but when he tries to put all the words together (grammar, etc.), he has lots of trouble. And than frustration comes out physically. For a kid that has no self regulation, this is a huge problem. So this was a really good appointment explaining where his deficits are and where to work on his skills, but we have a very long road ahead. We just hope that EVERYTHING becomes easier for him (and for us too).
We are starting ABA therapy (Behavior therapy) in January in our house which we hope will help teach him some better coping mechanisms and strategies. Amazingly Connor has joined us for dinner for nearly two weeks which has been wonderful. The last few days he has been telling everyone including siblings, "I like you" which is just so sweet! We are looking forward to Christmas and attempting to put some things in place which we hope help him cope better with a very exciting day. Thank you all for your continued support and have a Merry Christmas! Happy New Year!
All our love,
Jon, Kira, Liam, Connor, Declan, Keely and Guinness
