Dear Me Six Months Ago

Dear Me,

As you sit here in the doctor's office waiting to find out A's diagnosis, I want to let you know a few things.

It is going to be a long road. Life as you know it will change. But it will get easier. Each day you will celebrate accomplishments, even on the toughest days. But it will get easier.

When you are at your weakest, you will find this is when your other kids are strong. They will lead A, teach him and love him for who he is. They will understand his struggles. And they will be your strength when you feel like you have given all you can give.

You will meet amazing people in the ASD community. Some will be local, some will be online. All will become your friends. And all are routing for A.

It is okay to say no. When you are invited to holiday events and birthday parties, it is okay to say this just doesn't work for us. This doesn't work for A. Saying no is okay.

He is still the same silly boy that loves wrestling, doing flips and playing soccer. Regardless of what they tell you, he is still A.

You will cry. In the shower, in the car and cry your self to sleep. CRY! It's already a scary world we live in....you will wonder how he will maneuver it when you are gone. But when you are done crying, wipe away the tears and fight. Fight so that you don't have to worry about his future.

More then anything, love him deeply. Tell him every day. There can be cruel people in the world and no doubt he will come across them. So love him with a strength more powerful then words.

Sincerely,

The Future (Stronger) You

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.

WHEN THE MEDS WEAR OFF

My phone has 3 alarms set: 7:00am, 12:00pm and 5:00pm. These are A's med times and I try not to waiver too much. If by chance he sleeps in on a Saturday or Sunday, the times may be pushed forward by an hour but for the most part we stick to the plan. And the plan works.

That is until this momma forgets because we were having too much fun to remember. I'm still new to this autism life and this weekend I did the unthinkable: I forgot to give him his mid-day dose AND we went out!!!! The horror!!!

Actually, for me it wasn't so bad because that was the A I was used to for so long. The hyper, aggressive, spin in circles, repeat after me, never shut up A.

But I was afraid of what the family would think. 

Essentially, only me, husband and the kids have seen really what A is capable of. We have friends and family that have seen some meltdowns, maybe a few tics but not many have witnessed a 6 year old destroy a classroom, flip over desks, pull computers off tables and rips pictures straight off the wall.

So when I realized I had forgotten to give A his meds, I scolded myself for not carrying spare medication in my purse. It all worked out in the end, we got him his medicine and he went back to enjoying his Saturday afternoon.

But it got me thinking......why was I so embarrassed for people to see A's personality? Essentially, why was I embarrassed of my son?

I finally came to the conclusion that it wasn't embarrassment, it was me being a mother that didn't want to "burden" others with what I have dealt with. We do that as moms. We take on the world. Our shoulders are strong but after a while we start to wobble....we can't hold it all up. That moment of A being A, should have been welcoming, allowing others a glimpse into our life.

We struggle but our struggle is understanding how A sees the world. Letting people see A without his medication will allow them to better understand his life, our life and Autism in general.