What This ASD Family Wants You To Know

I see you.

You've changed your profile picture on Facebook to "Light It Up Blue".

You've liked my posts related to autism.

You may have even changed your outside lights to blue bulbs to show your support.

But what are you REALLY doing to understand and support those with autism?

1. Acknowledge that those on the spectrum, their families and loved ones and not just looking for you to be aware of autism, they and us, are looking more for ACCEPTANCE.

2. Teach. If you are a parent, please teach your children to be friends with the kids that are different. Teach them to be compassionate and understanding. Teach them to protect and defend the more vulnerable kids. If you are a teacher, make sure part of your classroom lesson includes peer inclusion. The world can be a very lonely place and depression is far more common in those with developmental disabilities.

3. Its called "Autism SPECTRUM Disorder" because there is a broad range or disorders. So while you may know someone whose child flaps her arms, the next child on the spectrum might not. Never assume our children will act a certain way.

4. There is no cure. Mr. A will be autistic forever. Kids grow up into adults and we have to focus on our adult ASD society as much as children.


The biggest thing you can do is be aware ALL YEAR LONG. Not just April.

MY VILLAGE JUST GREW BY ONE

Today is the 1st day back to school. I should have ended that sentence with an exclamation point however, it is not something I have looked forward to. Sleepless nights, worrying over IEP's, new teachers and new friends (potential) has left this mama with more anxiety then A has going to the Rain Forest Cafe!


A woke up a little earlier then normal but after going to bed by 8:30pm and sleeping the entire night in his bed, I know this morning was off to a good start. We decided to walk to school because even the shortest walks gets out some of his energy before being asked to pay attention for a few hours.

We found his line immediately and A was pleasantly surprised that his classroom line was next to his big brothers.

We chatted with old friends and patiently waited for the teachers to come outside.

I spotted his guidance councilor and made a mental note to grab her ear as soon as possible.

The teachers started filing out the door, heading to their classroom lines. I saw A's teacher approaching as she shook every child's hand and introduced herself to us parents. I had requested this teacher in particular. She has a larger population of foreign children and we have come to learn that they have been the least likely to pick on Angelo for his disabilities.

Once A's teacher passed by us, another woman stopped by to introduce herself. She said she would be in A's class so I assumed she was the SPED teacher.....but no, I was wrong.

She is A's 1:1 aid!

I was elated. A had an aid for the last quarter of the school year last year and his behavior improved immensely. Having someone prompt when it's time to change task is huge for A. Without his aid I'm not sure if he would have made it to 2nd grade.

I wanted to hug his aid. And cry out of happiness. With that one handshake, all of my anxiety disappeared.

They say it takes a village to raise a child. I just added a new family member to that village. That gives me justification to rewrite the first sentence above.

Today is the 1st day back to school!!!!!!!!!!!!!!!

First day of 2nd grade!

2016 Is My Bitch

Fuck you 2016. You thought you could drag us down. You thought "hey, let's flip their world upside down and laugh from across the room". Yeah. It hasn't been easy. Some days have down right sucked. But you know what? 2016 hasn't won. Actually, I have grabbed 2016 by the balls and made it my bitch! But only after 8 months have I realized it wasn't about me, or even us. An autism diagnosis is about the whole family. In a mere 8 months I have learned who true friends are. I have watched a 16 year old grow up and gain a fierce protectiveness over her brother. I have watched an 8 year old struggle with why he gets treated differently. And I won't lie. He does. We all do. And it's not just autism. It's any disability because honestly, who plans on a disability being a part of their life. From the moment you find out you're pregnant, you expect perfection. You worry about what you eat, how much rest you get, but nothing guarantees perfection because there is no such thing. If I was told 7 years ago that my son would be autistic, would it change anything? Not a damn thing. Not for this family. My child is the coolest kid I know. His siblings are amazing little people that will grow into compassionate adults having grown up around a disability. So while some days I have doubts, I am worn out and feel like I have nothing left to give, I do have a big middle finger for 2016. You haven't won. This was our year. This is when we became stronger then ever and you can never take that away from us.

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.