Sunday, February 3, 2013

Super Bummer

I feel like balling my eyes out.  I thought I prepared my son for the super bowl.  We weren't doing anything special but it would be a change of routine with the TV. I let my kids know ahead of time (with reminders) that we would be watching the Super Bowl.  Mommy wants to hear the National Anthem and watch the half-time show.  That's all mommy wanted.  Is this what mommy got?  I got half.  Maybe it's too much to expect that one or both of my kids would allow me to watch what I want to watch once in a blue moon.  By the time the half-time show started, my son with autism was screaming and crying and begging to go to bed.  Here's the kicker - my son can't sleep without me in the room with him.  So, he's begging to go to bed right when the Beyonce starts singing.  I say to him "Just 10 mins hun and we can go to bed".  He starts screaming more.  I give him options like - play your game for 10 mins, lay in mommy's bed for 10 mins, daddy can lay with you.  The more I suggested, the more he screamed and cried and it started to grate on my nerves.  I'm not a perfect person and I know that it's not his fault.  But my voice rose a bit and got more stern.  "Honey, just a few more minutes!"  He didn't like that - so his voice got louder and more grating.  Then right when I was getting up to take him to bed, my husband yells "Shut. Up!".  Oh FUCK!  Let's just say that did NOT go over well with me or my son.  It took a while for my son to calm down. He ended up sleeping in my bed and every time I made a move he opened his eyes to be sure I was still there.  Autism is hard.  Autism can suck sometimes.  Parenting is hard and it really sucks sometimes.  My husband and I both caused my son to have an accelerated meltdown; we took him past his limits and I'm so sorry for that.  I swear I only wanted to watch the half-time show but instead I had to de-escalate my son.

Sunday, January 6, 2013

Genetic Testing

Not sure if anyone else has done this, but we consulted a genetics counselor to find out if there was a reason my oldest has autism.  No one in my family has autism or any diagnosed sensory issues.  We found out that he tested negative for Fragile X but tested positive for having a Chromosome 22 duplication.  So we can affirm that he was born with this and may face other issues in the future (this is not definite, but we will be more aware of what to look for).  A lot of folks have asked if his autism was the result of vaccinations or other nonsense.  I have always stated that I felt he was born the way he his.  And now I know what I have always known, if that makes sense. 

Now his dad and brother were tested to see if they have the duplication.  The duplication was passed to him by his father or mother.  His brother does not have the duplication.  His dad does not have the duplication either.  We were almost positive that it was from him, only because his dad has ADD, dyslexia and some issues with learning - which are some presenting signs of this syndrome.  Well, turns out our assumptions were incorrect.  I have to be tested now even though it's obvious it's from me.

Anyone else out there done this?  Was it a big deal for you to do this?  When we first were looking for direction on what to do with his diagnosis, it was suggested to us to do the genetic counseling and also to see a neurologist to rule out any seizure activity (he does not have any, thank goodness) and to also have therapy (speech, occupational, and behavioral).  We had these recommendations from the local CMH.

We have done what was suggested for us.  We have made great strides and my oldest has come a long way.  This coming up week we are starting behavioral therapy.  I'm excited yet nervous as we are going to push him out of his comfort zone.  I'm hoping they will be able to help him with his anxiety with potty training and sleeping on his own.  Those are two biggies for me personally.

Hey, sleep much

My oldest is not sleeping tonight.  Not sure why, just isn't.  He's sitting here watching cartoons and it's like he's refreshed from a full nights rest.  He's been up since 7:30 this morning.  Lame!  I realize that we all have those times where we just can't sleep.  He's my son with autism, so I can't allow him to be alone.  Not that he would want to.  If he wakes up, then I have to be up with him.  He's attached me to HIS hip, so to speak.  He has to eat with me, sleep with me, go everywhere with me.  I feel honored that he loves me this much and spends time with me.  But there is a limit.  Mommy needs a little space, kiddo.  I need some "me time", I need time to spend with my husband.  But I guess him being up now has a positive note....I can write a post on my blog.  Haven't done that in a long while. 

Well, I hope I will get some rest before dawn breaks.