A great night out with Brycen!

Brycen went to his first hockey game last night...and he loved it! We always hesitate to take him any place where there is a lot of people, noise, and where we don't always have an escape route for obvious reasons, but he amazed us last night with how he tolerated all the people and noise and really seemed to enjoy himself. He loves action, and though it was probably one of the worst hockey games I have ever been to, it still involved enough action to keep him happy. The only drawback was when the Muskies mascot came around to greet people...Brycen tried his hardest to curl up into a ball on his seat to escape him, but then it was back to the game once the mascot walked away! He clapped, he responded to his name, he waited in line to the best of his ability, and he said "hi" and "bye" to people when just a month ago he would have just yelled at them! Yay for Brycen and for adding another achievement to the growing list!

The sleep issue again!

I think we are at another stand-still with the sleeping with Brycen...and I just don't know what to do. Mike gets the lack of sleep from dealing with Brycen in the middle of the night, and I get to deal with the guilt of his and Brycen's lack of sleep!
For awhile there, we thought we had mostly solved the problem with special overnight diapers. Since he wasn't leaking out at night, we think that helped him to sleep longer or if he woke up, to be able to put himself back to sleep. The melatonin is still working at helping him fall asleep faster (most nights anyway) but it never did work to keep him asleep. We are now back to 5-6 nights a week of him waking up at least once even though he is no longer leaking out of his diaper!
So, back to the researching if medicating him is the right thing. He wouldn't go to sleep last night, woke up during the night, was up early when Mike was getting ready, and then I had to wake him at 7:20 to get him ready for school. He continued to whine all morning until I dropped him off at school. When I picked him up, they informed me that he didn't fall asleep at nap time until right before 2 which means he only got about 1/2 hour of nap...so of course as soon as we get into the car to head home, the whining and crying starts right where it left off this morning. I'm guessing he is overtired, but what if there is something else wrong that I can't determine. What if he is getting sick, or his tummy hurts, or he's upset about something else and I can't figure it out and make it better?
This is so frustrating and this is one of those days where I am questioning once again, why, why, why?! I know everybody is entitled to these days but I wouldn't mind a few less of them in our lives!

School report on Brycen's IEP goals

We received Brycen's report from school today about his progress on his two goals for the year. The year (36 weeks) is divided into 4 quarters, so the second quarter ended in December. We knew how great he was doing, but never guessed it was this much!
The first goal is on communication and is broken down into 3 categories: (A) Makes needs, wants and dislikes known, (B) Demonstrates Comprehension of Classroom language, and (C) Making Choices. Each category has 4 steps he is working on mastering by the end of the year. He has currently mastered the first two steps of A, the first 3 steps of B, and the first step of C. This definitely seems to go along with at home as he is still not cooperating with the use of many pictures and the making choices category is based on using pictures. The B category has to do with following a visual schedule and we all know how much he loves to have a schedule and know what is expected so it makes sense that he has made the most progress in this category.
In addition to these categories, the Communication goal is tracking the signs/words he uses throughout the day with consistency. The teacher notes on 10/20/09, Brycen used 5 words/signs consistently and in December 2009, that jumped to 23! I keep telling everybody how much his language has progressed over the last month, but I think this jump in numbers makes it clear to everybody that we are definitely not imagining it!
The second goal is on following directions and is broken into 6 different areas of a simple oral direction. Brycen has mastered the following areas of following direction be December 2009: Do your work, come here, take hands, put away, wait. He only has one more area (Sit down) to master and he will have accomplished this goal! With "do your work," he needs to put his name/symbol in the basket to show he is there in the morning and his lunch ticket in the tin to take to the lunchroom. I think "come here, take hands, put away, and wait" are pretty self explanatory!
When looking back to where he started in August, we never imagined he would make this much progress in 5 months and now that we see the data from school to show us exactly how much, we continue to agree that school was the best decision we could ever have made for him! Consistency and routine are definitely the best policies for Brycen!

Iowa Autism Council makes recommendations to the state

This article summarizes the recommendations the IA Autism Council is presenting to the government in order to give the most support to children and adults affected by autism. Currently, most children that are diagnosed with Autism, are put on a long waiting list for the Ill & Handicapped Waiver and they have to wait 18months or longer to access Medicaid insurance and other support like respite services for the parents. Some children, like Brycen, are found to have an additional diagnosis that may qualify them for the Intellectual Disablities Waiver which currently does not have a waiting list, but what about those children that are found to only have Autism or Aspergers? They not only sit on a waiting list to start services with I&H, but then this waiver only takes them to age 18 and then the parents need to fight to find a different waiver they may qualify for. We all know that at this time, Autism is a lifelong disorder...it does not disappear at age 18 like this waiver seems to think it does. Improvements need to be made to form a specific Autism Waiver that is specific to the needs of families of children with autism. We all know that early intervention with children diagnosed with Autism is of the uttermost importance in order to make as much progress as possible with socialization skills and speech delays. Hundreds, if not thousands, of adults with autism in Iowa currently do not qualify for Medicaid insurance and do not have the means to hold a good paying job, housing, etc without the assistance of a support staff, but without services, they cannot get support staff to help them live their lives as independently as possible. Much less most private insurance companies will not pay for therapies needed by children and adults with Autism. So what do these families do? They either do not have their children receive the necessary therapies because they can not afford them, cannot afford transporting them to and from, and cannot afford to take off work to accompany them to the therapies. OR the family chooses to go deep into debt because they want to do anything possible to help their child.
As you can see, I am very passionate about this subject and I was long before Brycen was diagnosed with Autism. This is a rising epidemic in Iowa, the country and across the world, but it seems that though they are talking about it at government sessions, nothing is being done to help these children, families and adults out!
1 IN 110 CHILDREN ARE CURRENTLY DIAGNOSED!
http://www.kwwl.com/global/story.asp?s=11889857