what a difference a week can make.

Last weeks ball game was not that great.  This week a different child showed up to play. It was fun watching him enjoy the game. He did sit out the end of it. I guess he just had enough playing but he sat it out without drama so that is something right?

playing on the B.A.D. team

For the second year Andrew has played on the B.A.D baseball team.  Beyond All Disabilities that is. There is nothing  bad about this team. These kids and adults have fun. We have quite a bit of fun as spectators too. I cannot say enough good things about the couple that coach the team. Mike and Cheryl are amazing. They make the game fun. They have so much patience….

Last night I saw that patience first hand. Drew has taken a liking to catching. Mainly because it doesn’t require running I think. When Coach Mike tried explaining you only catch when your team is in the outfield Drew didn’t take it well. He totally melted down. It is always the silly things that cause the biggest meltdowns. Coaches Mike and Cheryl were so patient with him. Trying to reason with him and get him back into the game. It was so nice to sit back and let someone else who actually understands how to deal with a child like him do it.  For years I have had to be so vigilant and watch as teachers without a clue pushed every one of my child’s buttons and pushed him into more and more trouble. It has been so hard to not lose my cool with these people. to maintain my cool and contain my inner momma bear.  

So today I say thank you to the coaches for giving me this opportunity to sit back and just be a regular parent for a change.

AK

AK is my 11-year-old son. He is smart, loving, kindhearted and snarky as can be at times. Andrew is an Aspergian, an Aspie, he’s on the spectrum…..call it what you want he is a child living with Asperger’s syndrome or AS. At this point in my life AK is my job, he is my main priority. A good deal of my life is structured around making his life run a little more smoothly. I am constantly looking ahead to see what might disrupt our peaceful existence. AK has sensory issues and these can make him meltdown from out of nowhere. Things I have learned are that AK doesn’t do well without structure. A crowded room can be painful for him and a noisy crowded room can bring his world crashing in on him.

Something I have learned about the world because I am AK’s mom is that the world in general is judgmental and not very understanding at all. I would be a rich woman if I had a dollar for every look I have gotten when he melts down or every snide comment about a little discipline going a long way.  Once upon a time I had these delusions myself. I thought consistency and clear guidelines made for the perfect child. I have eaten those thoughts and words a million times over.

Please don’t get me wrong. This is not a complaint or a whine. I wouldn’t change AK for the world. He is so damn bright and he sees the world in a much different way than I do. I do wish things were easier for him and I wish I could make everything run smoothly in his world. I can’t and I accept that.

We are trying new meds this year. Abilify is being used off label for AS kids and we saw an amazing change in AK when he started taking it. Unfortunately along with the good came the bad. He weighed 67 lbs when he started taking it last June. He currently weighs 105….almost 40 lbs in 9 months. We can’t go on this way. I recently did some research and found a study done combining abilify and metformin. Results showed a majority of kids on that combination losing weight. We are trying this. It has been 2 weeks and he hasn’t lost any weight so I think we will be upping the metformin dose this week. We started lower than most as the Dr has never tried this combo before and he wants to play it on the safe side. If this doesn’t work I am not sure what our options are. I know that one is not to leave him on this medicine and gaining weight like crazy.

Hello Blog World!

I have been feeling the need for a place to put down my thoughts and feelings. I have tried this blog thing before and not kept up with it but here I am trying it again.