There Is Always Tomorrow

I walked out of the train station today on my work analyzing every male face I came across. What was he like as a child. What does he deal with now. I find myself doing this as I wonder how A will be when he grows up. I've though a lot about this lately. What inner demons will he have to battle? Will he grow up and find love? Will he drive a car? Hold a job that he likes? Will my husband and I be able to go away on a vacation without worrying? And will R be able to take care of him when we are no longer able to?

Its a heavy burden I have carried on my shoulders since his diagnosis. It's the unknown. And my shoulders are tired.

I always tell my A that no matter what happens today, we can start off fresh tomorrow. It has become our mantra, a way to get through the difficult days and know that they won't last forever. It's also a comfort for me. That at the end of the night, when I lay my head on the pillow and drift off to sleep, I get 8 hours rest from the worry.

Lately his diagnosis feels new to me. I've started over with the research on how we can help him live his best life possible. I may not have a PH.D but I have studied more about autism then anything else in life. Research papers, case law, medicinal trials. We medicate, use essential oils, take probiotics, ABA therapy....you name it, I have tried it. It consumes my thoughts most of the time where I feel like there is nothing else.

And then their is sadness. A is a smart 8 year old. Smarter then most I'd say. He knows that he doesn't have friends because he scares them. Because who in reality, as a child, wants to watch a boy bang his head off a wall and think "that's normal". He's quirky with no filter. He will tell you exactly how it is, out loud, no indoor voice. Most people find that rude and insulting. I am just happy he is communicating.

When we received A's diagnosis of "moderate ASD", I knew it was spot on. Other kept saying "oh he's high functioning" and "he's so smart, he will grow out of it". You don't "grow" out of autism. You may learn coping mechanisms to get through life. The reality is, A can be high functioning when he has had his daily medication and all the stars have aligned. We love these days because his brain gets a minimal break from the anxiety of life and my brain gets a minimal break from the daily worry.

And then I think of our mantra: "There is always tomorrow".

Educate Yourself

I knew something wasn't quite right, something had changed.

A was acting different.

So I started reading. Some days this can be bad. You know those times when you have a headache and your seeing little floaty things so you go to Web MD. You have now diagnosed yourself with glaucoma, a concussion or an eye tumor.

In reality, you're dehydrated and sat up too fast.

This time my reading was good. It pointed to things like SPD, OCD and ADHD. Then I noticed the tics. In the back of my head I knew he was autistic. How could this happen all of a sudden?

I couldn't dwell on the how, I needed to focus on the "what now".

Once A received his formal diagnosis, I started reading as much as I could. Medical books, self help books, thesis' writing by pre-med students, case law and actual disability law. I knew that there would be people that would fight us, try and deny A services. I was just stocking up my arsenal.

As parents, whether your child is physically disabled, on the spectrum or neurotypical, you must educate yourselves in whatever effects their life.

It is our job to fully understand our children. Be a part of their school life. Their education. Their extracurricular activities.

Educate your self. It's the most important thing you can do in your child's life.

Letting Go

This weekend we had the luxury of pulling our camper (Sexy Beast) to our friends vacation lake home in New Hampshire. It was absolutely relaxing and serene. And our camper is one place that A feels at home because, well it is his home. Everything he loves and cherishes (and needs so get through the day) goes into the camper. DVDs, 2 iPad's, favorite stuffed animals, the food he can't live without (this week is turkey and cheese sandwiches) and any other item that allows us to vacation in peace.

We spent Friday lounging at the lake, fishing and swimming out to the dock for some cannon ball fun.

The boys kept asking our gracious hosts when we could take the boat out.

What started out as a cloudy Saturday turned into a warm, humid and sunny afternoon. It was boat time!!!

We all piled into the boat, life vests on and ready for some tubing. My kids and myself were tubing virgins, my husband already had that cherry popped.

I was a little uneasy because A doesn't care for anything that goes fast. Amusement rides are hit or miss. And although he has taken a ride on dad's motorcycle, it was a slow circle around a campground we stayed at.

The boys decided they were going on first.....climbing out onto the tube and drifting behind us, my heart started to beat hard. "This would be a 10 second ride before A starts screaming to let him off" I thought to myself.

G knew the hand signals and the minute we pulled off, a thumbs up went up, indicating he wanted to go faster. Thump, thump, thump. I can't get to him if he needs me. Wonder if he falls off? Wonder if he gets so scared we end up in a meltdown? We will be leaving soon, I know it.

A was smiling. He was laughing. We stopped to check on them and in unison, they both screamed "go again".

There was my happy A, doing something new, without his mama by his side.

My heart slowed down a little, my palms eased up from the nervous fist they were in.

I was finally letting go. Letting go of fear and letting go of the helicopter "momtality" I had.......my autistic son CAN do things. I will be here to protect him but I also need to let him live.

He lived this weekend and I let go. We're both making great strides.