Monday, April 02, 2012

Autism Awareness

April is Autism Awareness Month and today is Autism Awareness Day!

Recent studies report that 1 in 88 children have autism.
4 out of 5 are male.
If your child is diagnosed with autism there is a 1 in 20 chance that his or her siblings will also be diagnosed with autism.

Why am I blogging about this? Because Amelia has been unofficially diagnosed with autism.

What does that mean - unofficially... It means that we have been to the first appointment. We had a pre-assessment at the Fraser Center in Minneapolis and are currently on their wait list (4-6 months) for the full diagnostic evaluation that will determine where on the spectrum a child falls.

In a couple of weeks we are going, with my dad, to an Autism Spectrum Disorders 101 seminar that will, according to the flyer, better equip us to deal with the emotional challenges of the diagnosis and learn of community resources. A few consultations were also recommended to us to help with Amelia's eating habits and also to help us make transitions better as change is hard for her.

So, take all of that and it can be assumed that there is a level of certainty that she is autistic. How mild or severe? That is what the full assessment will determine. We are assuming that it will be towards the mild end of the spectrum and that is also what her doctor also thought when she gave us the referral.

Bottom line? We don't have an official autism diagnosis. We don't know where she may fall on the autism spectrum. But, in our gut, we know that she is autistic. There have been suspicions for over a year now. There is still some level of denial in both Jason and I but at the same time we know.

At our appointment last week Jason told the practitioner that it feels like we are treading water, daily, and barely keeping our heads above water. The week prior I told a friend that I feel like I live in a hamster wheel that won't stop. Two very different analogies that mean exactly the same thing. We are exhausted. The good news? There may be a reason as to why we struggle so much. With having a reason there will come resources to help us, hopefully, not feel quite so helpless and exhausted.

Amelia is a special little girl who is more work than I ever imagined a child would be. I now realize how incredibly valuable communication is. When you don't have it you don't take anything for granted. The half-words that she can get out these days are music to my ears. A lot of the time I know what she is talking about now. Mostly there is just something that she wants but that's ok because she is telling me, in her own words, what it is that she wants! Four months of speech therapy has helped her so, so much!


We are still trying to work through all of this. It may take awhile. I am looking forward to the seminar and consultations so that I can hopefully step off the hamster wheel and enjoy more than I am able to now. Educating ourselves is probably the best thing that we can do right now - so that is what I will do. It'd be nice to spend the night with my children and not be so focused on how close bedtime is. Bedtime means quiet..."me time"...and sleep.

No comments: