We have had a busy day today. The boys woke up around 7am, and between 7-8:30 or so we had numerous visits to our bedroom. Nick flashed lights off and on, climbed on our bed, and visited our bathroom. After realizing that sleeping in would be pointless; I got out of bed and started getting on with the day. It was going to be a busy one after all. First on the list was breakfast. Both of them had two waffles and I grabbed a bowl of goldfish crackers. After that, it was time to get everyone dressed to go to Michael's soccer game. It seems to be the one thing that is going right with Michael, so we let him play. This year, Nick is old enough to play on the little teams, but, he isn't. I see all the little boys who are about his age playing now and I find myself getting sad all over again. It comes in waves, and makes itself known at every major milestone that other kids his age are hitting, but we are still stuck in this autism place. As I watched the other little kids play my mind drifted to those "What if?" thoughts. I saw one little boy on the sidelines trailing Mike, and for a moment I wished that was Nick. Life would be so much easier for him, and for us. I am brought back to reality when Mike sits in the passenger seat and says "Seatbelt Off!" to Nick; who promptly unbuckles himself from his carseat. Now, he only unbuckles when told. Last year he had a habit of unbuckling when we were on the highway. Minutes later he has climbed into the passenger seat and has begun playing with all the buttons in the car. He sits back down in the seat and I catch a glimpse of him. Hands are flailing, fingers are flipping, and he is blissfully happy. This is our normal.
After the game, I drop Nick and Mike off at the house. I am taking Michael with me to help pick out all the birthday presents and decorations. This is fun; and this year I could care less what I have to buy for Nick. I found items that would be fun for him and they were even age appropriate! A first! We got him an Aguadoodle Mat-which he absolutely LOVES. Nick has a love of drawing now-so we want to indulge him in it. It makes him giddy with excitement, and so far it is saving our walls. The pen will only mark on the mat. We also bought a Little Einsteins piano, and a conductor wand that lights up and does stuff when he waves it. He also got a pair of toy binoculars, some color wonder finger paints, and a Leap Frog Learn to read thing that hooks up to the TV. (That might help him to learn more words, and it has pictures of the words on the TV...like KITE would show a kite on the TV).
And do you all know that I started this post around 6pm and it is now 10:38pm??!! Why? You might ask? Well, let me tell you what happened. I was baking Nick's cake and all was well until I realized it was too big for my cookie sheet. I then cut it to fit and started to make the icing. The icing came out too sweet, so I started using the store bought stuff. Only to realize that I did not have enough to cover the cake I made, and it was tearing the cake up. Unhappy with the way things were turning out (I can be a bit of a perfectionist) I had to run to the store and buy new cake mix and icing. Came home. Cleared out the old cake and cleaned the dishes so I could start the new cake. New cake is now in the oven. I still have to decorate it and wrap presents. Maybe I will get to sleep in tomorrow?? One can only wish right?
Saturday, February 14, 2009
And they are just as we expected. Overall Nick scored in the toddler range and is significantly delayed in all areas. If he stays significantly delayed for the next year or two, they will need to rule out mental retardation. Mike and I both feel that Nick is not retarded. But, since he is nonverbal for the most part, they cannot accurately test his IQ. We discussed a lot of topics, but the main one was his school. Now, suddenly Nick is becoming volatile and having tantrums. He is having problems with transitions at school-something he very rarely has issues with at home. Mike was called the other day in fact. Nick was screaming and crying in the background, and his teacher was saying she did not think the bus driver would take him home. Nick LOVES to ride the bus. It is the best part of his day, and to take that away from him just broke our heart. One now has to wonder WHY is he throwing all these tantrums suddenly? And why the hell do they not write this stuff down in his notebook??!! We have received NO communication from this school other than these two times. No thoughts as to what has possibly brought on all these tantrums! All I can say is that since starting at this school; both kids have gone downhill fast. Is it just a coincidence? The Dr has readily agreed to provide Nicks' teachers with info on autism, and will offer them the chance to come to the University and learn from the therapists there. Mike took like 10 business cards to hand out to the teachers and principle of the school. Will they take up the offer? Time will only tell. The school is just not ready for kids like Nick and it is heartbreaking to see him come off the bus with a face red and teary from crying at school. Something is going very wrong; and we will find out next Wed. His future at this school may be short.
Monday, February 09, 2009
Ok, as I said in the previous post, Nick has been undergoing some evaluations last week and today was the last eval. before the parent conference. They are evaluating him to see where his functioning is and that will determine if he can continue to get services at UW. After seeing so much progress in him this year, I was crushed when he did not "perform" at his best. Simple tasks like matching spoons, identifying car, and imitating just did not happen without my intervention. Nick was bouncing all over the place and could not focus on anything for more than 5 seconds. He does so much better at home, which kind of gives a false sense of progress. It may as well have been his very first evaluation-if you grade it by that then he has not made any significant progress in nearly 3 years. But, I KNOW he has...it is all so frustrating! After an hour of watching him throw blocks, repeat non-sense words, and play with his hands, it was all over and I was heartbroken. We will see what the report says, but I suspect his functioning is still around the toddler level. Days like this are very hard.