I Am Grateful

"If you've met one person with autism, you've met one person with autism." It's a phrase most of us in the autism community are very familiar with; and it's an accurate one at that! While there are a few things that most people on the spectrum have in common (and thus it can be diagnosed), for the most part the way in which autism presents itself differs from person to person.

Over the last few months I've attended quite a few events put on by autism support organizations. During these events I've heard a lot about the different struggles that many autism parents have to deal with each day. Though Aaron's spectrum is quite challenging, there are many things I am grateful that we don't have difficulties with.

I am grateful that Aaron goes to bed at a consistent time each night, without issue, and stays asleep through the night.

I am grateful that he was potty trained by age 3.

I am grateful that Aaron is able to speak and generally communicate his wants and needs.

I am grateful that he loves affection, both giving and receiving it.

I am grateful that Aaron is able to attend public school with his peers (albeit in a specialized setting).

I am grateful that he can function in settings that many with sensory issues simply could not.

I am grateful that Aaron is typically open to trying new things.

I am grateful that he is eager to visit new places and ok with long trips to get to them.

The list truly could go on an on. Every moment that presents difficulties for us as a family comes with one that makes us realize that we truly are lucky. I try to remind myself of that each time we are in the throws of a meltdown or a tough day. It could be so much worse and, instead of focusing on how bad it can get, I am grateful to have a healthy, happy and engaged child.

Autism & Bacon

I realize that blogging about life as the parent of a child on the spectrum can often result in posts that are somewhat of a downer. Today let's turn that frown upside down! I mean, who doesn't love bacon (aside from vegetarians of course but even then they've got to find it hard to resist)?

We are Warriors

Having a child with autism can mean accepting that things that should be easy, won't always be. Things that parents of "normal" children find to be second nature may require a certain amount of caution or maybe, better put, finesse. Autism is often referred to as an "invisible disability." Though most in the autism community frown upon the use of the "d word," there is good reason behind the phrase.

From the perspective of my friends and family, Aaron is just like any other 9-year old boy. They see the photos posted to social media of our happy times. The hear the stories of him conquering the world's tallest and fastest "Giga Coaster" or the fun we had visiting a children's museum. It's what they don't see, what isn't shared, that makes his autism invisible.

It's the simple things really. The things that come so easily for most children, and their parents. Things that for us, can often result in a meltdown, regardless of being within our control or not.

It's time for bath? Prepare for at least 10 minutes of refusal, possibly followed by aggression. If we do manage to get him in the tub he'll be happy as can be, but when it's time to get clean, get ready for it all to begin again.

Time to brush teeth? Good luck with that.

Grocery shopping at Walmart? There will be an in-store meltdown if you don't stop by the toy section first. If funds don't allow for that, go alone.

Time to call the grandparents but they aren't answering? Meltdown eminent! Keep trying and say a prayer to the connection gods.

Time to eat but the menu isn't appealing? Get out a box of mac-n-cheese!

WiFi down? There will be a meltdown for the entire 2 minutes it takes to resolve it, and then it'll be as if nothing happened.

Game locked up on the computer? Watch closely because a fist is about to hit the laptop, possibly killing yet another hard drive.

Change of plans? Oh boy! Come up with something equally as impressive fast!

McDonald's is out of the current Happy Meal toy that was expected? Unacceptable! Commence meltdown.

You get the idea...

These are all things that we've had to learn how to approach in different ways. Sometimes we are successful in avoiding the expected response. Sometimes not.

A parent with a child on the spectrum typically finds themselves walking on eggshells the majority of the day. It isn't until our children are asleep that we can breathe and by then, we are exhausted. We live in the moment, always looking ahead, anticipating things as if we have another sense. But, parents of autistic children aren't super heroes, we are warriors. We fight an invisible battle each day, remembering that our children are different, not less.

The IEP Process

One of the most hated experiences a parent with a child on the spectrum has to endure is the IEP process. Meme after meme, post after post; So many parents out there apparently have to gear up for these sessions, putting on boxing gloves and preparing for a fight. These days it can be difficult for me to see the "silver lining" but this is one case where I feel that we've been incredibly lucky.

I can't say enough about the team of people I worked with to get Aaron into the right classroom setting. Despite multiple suspensions for his aggressive behavior, there were days when the faculty was quite literally holding my hand through a rough day. 

The principal (who was new to the school and brought with her a reputation for being a hard ass) showed true affection for Aaron and a desire to help him succeed. She'd sit and talk me through what had to be done, based on the policies set forth by the school board, and often cry with me as we struggled to find a solution. She and her staff spent hours out of their day working with Aaron, trying everything they could think to in order to help him succeed. 

When everything "required" was done, they always went a step further. When nothing we put in place worked, they'd try something new. When he had a good day, they celebrated it! And when the IEP day finally came, I didn't feel like I had to prepare for a fight. I felt supported by a team of people who had no reason to try this hard to help my son, but had put everything they could into doing so anyway.

The outcome was Aaron being moved to a new school; One with a classroom specifically geared toward kids on the spectrum, where the teachers were better equipped to work within his accommodations as well as trained to help him through his episodes. It was a great solution that I looked forward to implementing, but bittersweet. 

I have always believed that every situations is what you make of it. If you go into things expecting a fight, you'll get one. If you believe that everyone is working against you, they probably are. Putting yourself onto a high horse as your child's parent doesn't help them. Sometimes, you have to accept the fact that occasionally you have to relinquish control and trust in the system, no matter how inherently flawed it may be. Going it alone sucks, so why put yourself into a situation where "alone" is exactly what you are?

The "Autism Speaks" Topic

Let's face it, Autism Speaks has a huge presence. People outside of the "autism community" know the organization, it's blue puzzle piece and the annual "Light It Up Blue" efforts to bring awareness (and donations). If you don't have a family member on the spectrum, they may in fact be the only autism focused organization you're aware of. So, it should really be no surprise that when people have a newly diagnosed loved one, Autism Speaks is one of the first organizations they think of to go to for direction, help, resources and information.

Aaron was diagnosed as being on the spectrum this past September. Though I knew I could find my way to lots of different groups for help, Autism Speaks was the first I thought to check into. When we ran into an issue with our local police department not being well trained to handle calls for help, they were who I went to for advice. It wasn't until a few weeks later that I had any idea that there was some sort of controversy.

The Autism Society shared a story about a state implementing mandatory training for it's officers. I replied mentioning that I had reached out to Autism Speaks for advice on how to get similar training for our local PD. The responses I received to my comment were shocking. Post after post essentially questioning my intelligence for going to Autism Speaks for anything. I felt as if I were being shamed which, let's face it, is a wonderful thing for a mom struggling to deal with her son's new diagnosis. The positive result of the situation however, was that I did my own research and began formulating my own opinion.

The way I see it, Autism Speaks is like any charitable organization. There are those that make good use of funds, and those that do not. There are those whose mission statements I agree with, and those that I do not. Would I give a penny to Autism Speaks or encourage my friends and family to do so in support of my son? No. Do I agree with their stance that autism is something to be cured and is a burden on the human populous? No. But, they do create an amazing amount of awareness through their efforts, and that awareness is something I ultimately benefit from downstream.

The reason everyone knows Autism Speaks is because their awareness efforts work, and as the "autism community" we need to be able to recognize when awareness itself is a great thing.

That "Day After" Feeling

Meltdowns are a somewhat inevitable occurrence in our home. We find ourselves walking on egg shells quite often in an attempt to avoid them. Unfortunately, with Aaron, meltdowns are almost always violent and aggressive; punching, kicking, biting and scratching.

The first thing his doctors and therapists tell us we should do? Walk away. Ignore him. Sounds easy enough. But, he will follow us, fists raised, until ignoring him is no longer an option.

Then he gets a warning. Typically the warning is that he'll lose something like his laptop or iPad. That never works. In fact threatening him with consequences only tends to make the situation worse. Yelling or making big threats... well that's just asking for things to go badly. Inevitably though, regardless of knowing how we should act in these moments, one of us flies off the handle. Who wouldn't? I mean if someone was continually beating on you or attempting to destroy things in your home, could you remain calm 100% of the time?

The last step is putting Aaron into a hold. We've tried the holds we're "supposed" to use with very little success. What does seem to work fairly well however is lying him down, one of us hugging his legs to our chest and the other holding his arms in such a way that he can't scratch or  bring his face to us to bite. As we've been told is completely expected, Aaron will often begin screaming, saying we're hurting him (we're not) or that we're breaking his heart (ugh!). It's a horrible thing to go through, especially when it's a daily (or multiple times a day) occurrence, but it typically works. After being held like this for a few minutes he will eventually say he's done trying to hurt us, sit up, and hug whoever had his legs. And that's it... it's over... until the next day...

Oh that "day after" feeling. I liken it to a hangover. My whole body aches, my head hurts and I'm completely worn down, not just physically but emotionally too. I look at myself in the mirror and see scratches and/or bruises and remember. I consider the day ahead and find ways to be sure to avoid people I know for fear they'll think I'm being beaten at home. I silently laugh to myself when I realize I guess I am.

And then, Aaron wakes up. He greets me with his amazing smile and says "good morning mom." He walks to me sleepily and gives me a great big hug. And I remember how that meltdown was just one thing that happened the day before. I remember that he played and laughed and was great the rest of the day. I remember that he shows us so much love, and that I am lucky that he is able to. I remember that it could be so much worse. I remember. And all is right with the world again.

Dear Mom at the ASNC's WAAAD Event

I'll admit it, I wasn't paying attention. I've never had to worry about how Aaron was with other kids, especially inside a bounce house (his own personal heaven). I was busy texting his father about what a great event the Autism Society of NC had setup to celebrate World Autism Awareness & Acceptance Day. I could hear Aaron giggling as he ran through the obstacles so based on history that meant I had nothing to worry about. I heard someone that wasn't Aaron yell "ow" but it didn't for a second dawn on me that it was something I had to worry about. A few seconds later however, you made eye contact with me, smiled and said "I think we have some tension." At first I didn't quite understand what you were saying, but as I saw you take off to the door of the bounce house, I realized something was happening in there and my son was part of it.

My ability to process what came next seemed to simply disappear. You grabbed your son and pulled him from the bounce house and my stomach sank. His face was covered in blood. Even with his hands up to his nose/mouth it was still dripping everywhere. Aaron was following behind yelling at him... something about calling him a sucker... Wait... What?? It began to sink in; The realization that the blood that covered your son came at the hands of my son.

I was absolutely mortified. I had no idea what to say. Aaron, being only recently diagnosed as being on the spectrum, had never put his hands on another child like this. Sure, he had a history of aggressive behavior with us and the faculty at his school(s) but never had he been anything more than verbally nasty with his peers.

I was confused, scared and absolutely horrified. And you hugged me. You hugged me!? The mom of the boy who just popped your son's nose... you hugged me. You told me it was ok and that you'd been there before. You took a moment away from cleaning off your son's bloody face to focus on making sure I was ok!?! I was shocked and surprised and emotionally unable to handle what had just happened. I didn't know what to say. I couldn't find the right words to thank you for your kindness and unbelievable level of understanding.

I wanted to stay and focus on you and your child. I wanted to be absolutely sure he was ok. I wanted to be there for as long as you needed me and now I want you to know how sorry I am for having to walk away. 

The rest of the day I kept hoping we'd run into you again. I hoped the boys would get a chance to meet again and have apologies accepted. They'd probably become great friends! I wanted to thank you for your kindness and tell you how much the way you handled the situation had meant to me. I wanted to tell you how much I learned from you in that short few minutes and how inspired it made me to try to be the same way. I wanted to tell you that the experience showed me just how much of a family we "autism moms" really are. I wanted to tell you how it taught me that among each of us is a deep rooted understanding that things sometimes happen that are out of our control and how we react in those situations truly influences the outcome. I wanted to say so much but mostly, I wanted to tell you how sorry I am. 

Unfortunately, despite spending a few more hours at the event, we never did see you again. In the back of my head I can't help but wonder if you left after the incident but truly hope you and your boys were able to stay and enjoy the day.

Dear Fellow Autism Mom: Thank you for being you.

Sincerely,

"New" Autism Mom - Jenn