Sunday, March 24, 2013

Lost at Sea

Have you ever felt "lost at sea?"  - I mean, your brain is lacking all sense of direction.

That was me, for a solid week now and counting.

It started with a dear friend of mine interviewing me for her college class.  She wanted to hear what a typical "day in the life" of an autism mom was like.

I thought hmm.. piece of cake!

UNTIL that is, it came time to explain autism.

Sure, I can tell my son's story and what life was like after his diagnosis, and how a day usually unfolds for me.

But when she asked me specific questions about autism, I sorta felt paralyzed.  It's very hard to generalize a child with autism, as for me, I think no 2 are the same. Sure, they may have similar communication, social and behavioral challenges - but, underneath it all, my son is sick. He is medically sick.

When he was a baby, about 12 months old, he started to eat all sorts of baby foods that you would introduce at that stage. Mashed bananas, puddings, rice, steamed broccoli with fish, oatmeal... all kinds of textures and flavors. Then his MMR vaccine (and a flu shot shorty after) changed all of that.
He never wanted to eat much again. I mean, not just those foods, sadly, most all foods.

I have been immersed in the world of biomedical therapies for autism ever since. Yet, my son hasn't responded the way I had hoped he would. He still struggles with so many things, eating, his language, his hyperactivity, and his OCD seem to be getting worse, and that controls alot of his neurological breakdowns.

I am NOT giving up though. I am still working on healing his gut 24/7. We are seeing a Natropath and hope to resume CEASE Homeopathy when we can financially afford to.

But, what really happens in my "typical day" is alot of frustration, anger, sadness and isolation for my son, his sister and myself.

I was given respite funds for him from DDD (Department of Developmental Disablilites) but, the trick is to find someone who is reliable and makes a good connection with your child.

I would love to get my typically developing daughter in sports or extracurricular activites, but, with my husband gone for work, and no extended family in the area I live in, and still no reliable helpers for him, it's been unsuccessful. My wish would be for them BOTH to have arts or sports to look forward to weekly, but, Keanu is still unable to follow along with any type of organized sports. He is good at swimming, but I've yet to find something that fits his abilities.

So, a whole weekend of feeling this disconnect from the outside world took it's toll on me emotionally.

Non-autism families -- can wake up in the morning, and get their kids off to their games' and gatherings with friends and family, I am just, well, lost at sea.

Don't get me wrong, I know I am blessed in so many ways. I never want anyone to think that I am not grateful for the life I have, my children or husband. But, it gets emotionally draining trying to tune out what everyone else is doing and the fact that we aren't.

In May, I will be attending a huge autism conference in Chicago, "AUTISM ONE" -- I hope to gain more insight of therapies which may help my son. I have an open mind and will always try things that I think may help him - I hope to connect with other parents of children who are like my son. All I want is to know that he is getting better.

regards, Dana

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