072109 Update

My apologies for not updating the blog in a couple of weeks. Not that there haven't been some good things happening, but in general I've just been a bit down about Tyler's progress lately and I guess I've just had difficulty putting that information in writing. So I guess I'll start with the things that have been upsetting me.

Tyler has begun hitting himself, not hard, more like slapping himself on each side of his cheeks when he's frustrated. It's been a long time since he's banged his head and I was hoping we were past the self-injurying behaviors. School also noticed the behavior and is blocking it as are we. BLocking means, stopping him from injurying himself but not giving him any attention for the behavior, .e. no talking, eye contact, etc. Transitions are something we always work on and when a new situation is upsetting we find a new way to transition, i.e. I brought a toy with him today to school that he hasn't played with in a long time to help transition him to go with the teacher to class and say good bye to me. This is really hard for him and he was quite upset last time I dropped him off so knowing that I brought something reallly fun today for him to hold and he did great. Anyway, that's a situation where he might slap himself as an example. School also helps with transitions.

The other thign that has been upsetting me is his final evaluation report from U of M autism and communication center. It's a 4 page summary that basically explains how far from normal Tyler really is.. now of course I'm generalizing and of course he's improved and is doing great, but when you put him on scales, he's quite low and it's just hearbreaking to see it on paper. According to the Mullen Scales of Early Learning Tyler does ok on the non-verbal etsts, at 23 months for visutal reception and fine motor skills so about 14 months behind if I'm doing my math right but for the verbal tests, obviously we all know he wouldn't do well, but I just hate seeing the number. It lists his receptive language at 16 months.. I think Tyler can actually understand much more than we know, he just has no way to express it. w hich brings us to his expressive lanuage rating which was 8 months... our little guys has the receptive lanuage skills of an 8 month old baby and he's almost 3.5 years old. So yeah, that hurts.. I mean no one wants to hear that about their child. There is also a Vineland Adaptive Behavior: Tyler scored low - moderately low in all areas. he also completed another ADOS (autism diagnostic observation schedule), module 1.

So the recommendations from U of M following the study are to receive consistent and intensive intervention with speech and behavior objectives. To continue to motiviate and develop pretent play. To develop a safety plan in case Tyler wanders away and to continue to monitor his progress with the occasional standardize test.

Ok so on to the good news. Tyler is trying to write his name. Enough so that I was able to understand that was what he was trying to do. he wrote the T and Y pretty clearly and then struggled a bit with the other letters. We are really excited abou this progress in terms of his learning his letters, sounds, numbers, etc. He really is so smart and we all believe that's what causes his frustration because he struggles to communicate it all with us. Poor thing. I just wish wish wish I could pull him out of the trap that he's in. He has such a beautiful mind. he's also really getting into his piano and not just pushing keys randomly but listening to how two keys sound togethe rand then playing with his other hand to play other notes with that chord. Oh and at school, we got a report that he was super excited about some girl flute players that came in and played for the kids, that he got up on stage and started dancing!

ok so those two things (good and bad updates) bring me to my next point. We have been discussing next steps and we are pretty certain we need to find a way to get Tyler into speech and music therapy. He gets speech through school but not direct one on one therapy. I also want to try to promote his love of music through music therapy which is recommended for children with autism. THis may be another way we can bring him out of his shell. He's pretty close to giving up his naps and I'm thinking my the time fulll time school resumes he'll be done with it so we are thinking of ways we can fill his afternoons with music and speech and behavior therapy .. We are working on creative ways to try to get insurance to pay some, or finding ways to supplement our income or other possible scenarios. Silly that insurance doesn't pay for these things.. just silly. Anyway, Tyler's 12 waking hours during the week are hopefully gonna be filled with some sort of school or therapy or travel. I'm not sure how we'll work the schedule but somehow we always manage to figure it out so I'm sure we'll come up with something and thanks to everyone who helps us with all that!

So on a quick Ben note, he's been quite the traveler this summer. We really do not want to limit Ben because of Tyler as we are gonna do whatever we can to try to prevent any resentment Ben may have towards Tyler. This past weekend, Ben went with his uncle to Steve's parents cottage with the rest of Steve's siblings, nieces, nephews, and parents. For many reasons we decided it was just best to send Ben and keep Tyler home. So Steve's brother picked him up at our house after he flew in from California and he and his girlfriend were Ben's parents for the weekend. Ben did great so I hear and had no problem at all traveling with someone he's only meant once or twice. His uncle also taught him how to swing by himself:) He's so social.. so opposite of Tyler. Anyway, we decided that it's just better on all of us if we limit our family travel and just try to do separate activiies for a while. Had we went up north we wouldn't have been able to do much of what the other kids were doing cause of Tyler, he cannot sit still, he cannot be in large open places, and he cannot be in enclosed places with a lot of people.. I mean he can do all those thinsg but some major behavior problems or melt downs will occur and we work through them, believe me, and when we do those things we put as much support in place as possible but overall it's just incredibly stressful and disheartening becuase we always feel we are missing out on Ben's fun and when we are around Ben doesn't understand why we can't go do thopse things with him. Anyway, long story short.. Ben is having a great summer and we are so happy for him. Tyler couldn't ask for a better brother. Ben is a natural nurturer and the fact that he is so social will really help Tyler out too when they are in school together one day. I took Ben to see Dawn of The dinosaurs and as we are walking out, two little girls are exiting the bathroom with their mom. They were probably around 7. They had long blonde hair and were about 12 feet in front of us walking the same direction we were.. Ben shouted out "Hi girls!".. it was hilarious. the mom turned around and looked at me and I just said, I'm gonna be in trouble when he gets older!