What I've Learned....

April 1, 2015

Ryan, age 13 

Two years ago, in a moment of weakness, I posted the blog, Autism Sucks. It still applies.  However, recently I feel like I’ve come to terms with Autism and am currently at peace with it. I know it won’t remain that way, but for now we are at a cease fire. 

This is about what I’ve learned thus far...

When I was younger, being alone was terrifying. I always needed someone around. I transferred schools three times while in middle school and was about as sad and awkward as they came.  One school in particular I didn’t have many friends and was very much a self-imposed outcast. I think that is why I’ve been so terrified of middle school for Ryan.  I have come to understand that now. That was my hang-up, my experience. As a parent, I recognize that my preconceived notions that those without friends were lonely were wrong. I’ve learned to let go of my own hang-ups. 

While it hurts to hear my son say, “I don’t have any friends.” I know it is true in some ways, in other ways it's not. It still hurts to hear. However, he doesn’t recognize what friendship means and that there are various types of friendship. There are times when Ryan is happy just being by himself. I’ve learned to accept that.

He is social and extremely outgoing, but his awkwardness and inability to read social cues and conventions often left him without anyone close. He has opportunities to form the type of close friendships that seem to be a must for surviving middle school, but he either doesn’t want to, or is unable, but he doesn’t need them to be happy, let alone survive. We walked through the halls of the middle school and in each hall someone called out his name; someone gave him a high five - didn't matter the grade or if it was a girl or a boy. Kids smiled when they saw Ryan. How is that not friendship?  He makes people smile. I’ve learned there are different types of friendship.  

When he feels like it, he goes out front and plays with the neighborhood kids in a pick-up game of some sport. He loves playing sports, but finds the lack of adhering to the rules angering and it often sets him off. As he matures, he realizes when he can and when he can’t handle it.  The neighborhood boys are a blessing. They ring our bell and ask for him and his brother to both come out. They know Ry is different and he often gets frustrated, and can be disruptive. They still want him to play. The other day, I saw one of the boys walk over and put his arm around Ryan to calm him. It was a profound moment for me.  It taught me that he doesn’t need me hovering. I’ve learned to let go (a little). 

Ryan is 13 now. He is a red belt in karate, a second year member of Frederick County's Honors Chorus and a straight-A student. He is growing up and maturing. He talks about Autism and how it affects him. He thanks people for wearing Autism t-shirts and sees it as a way they support him! It is gratifying to have him actively explain things to me about his life and how he perceives it, instead of me explaining why it is different to him. He tells me what he can and cannot handle and it is such a relief to see him recognize those things. He is able to predict when something is going to set him off and do something to avoid it.  I’ve learned the hard work has paid off.

He dreams of going away to college and knows it will take more than other kids for him to get there. He works hard with his therapist and in his therapeutic social group which consists of adolescent boys with autism. He sets goals for himself and plows through with determination to meet them. I see him on the path to handling adult life on his own. With that, I’ve learned to hope.

I’ve learned what it means to be ‘Different, not less’.

Embrace it, don’t fear it.

All paths are different, but trying to see what you've learned in a positive light makes the journey more illuminating.

No other way to put it...

 

Autism sucks. There. I said it.

This is Autism Awareness Month and for the last two weeks I’ve been reflecting on it. I’ve written down uplifting antidotes of how my son is dealing with it. I’ve reflected on how far he has come. While there are ‘signs’ and ‘characteristics’, Autism is as different in each child. However, whenever I think I have Ryan’s Autism figured out, a whole new playing field opens up.

Ryan at Hogwarts!

Ryan is 11 and on the brink of middle school – the day I’ve dreaded since his first day of Kindergarten. He is wrestling over what having Autism really means. Over the past 6 months we have been trying to explain Autism to Ryan and trying to explain why he reacts differently than his peers. He knows he is different. He doesn’t understand why. He knows he obsesses and becomes rigid about something and simply can’t stop himself. He will lose his ever-loving mind over getting a 97% on a test because he missed one answer. He KNOWS it is still an ‘A’ but his brain stalls out at the fact that he missed an answer and he can’t get past it. He will argue with his teacher, he will openly berate himself and he will actually sob out loud. Then after he finally is able to get past it, he is embarrassed, remorseful and frustrated that he can’t stop those reactions. I call it Jekyll and Hyde because sometimes we truly don’t know who is going to show up and most of the time either does he. When he was younger he used to refer to it as his ‘bad brain’ making the ‘bad choices’. That is our Autism.

Tonight he lost it because he broke his green highlighter while doing his homework. He couldn’t let it go and I almost had to run up to Office Depot just to get him the same exact one just to move on to his other homework. He was so frustrated with himself that he started yelling, “Why did God give me Autism? Why was I born with this? Why did God bring me down from Heaven and give me Autism!? You didn't have it when you were a kid! It isn’t fair! I hate feeling this way!”

Nothing. Nothing can prepare you as a parent for having to explain to your child why they were born with a disability. When it comes down to it, I think all the challenges I’ve faced with Ryan in the last 11 years (and they have been numerous), nothing has been as difficult as seeing him struggling with how he is going to live with this for the rest of his life.

I won’t lament about all the goals he has surpassed, or all the blood, sweat and tears we have all given for him to live as close to a typical boy’s life as possible. Ryan is a straight A student and contrary to stereotypical belief he is completely on grade level with a normal IQ. He aces his exams but will lose his mind if someone gives him a green pen when he wanted a red. He doesn’t get social nuances and there is no filter present between his brain and his mouth so you get to hear everything he is thinking about - whether you want to know it or not! He is by far the most loving, genuine, compassionate kid you will ever meet. He simply cannot control his emotions and sometimes his behavior. Can you imagine living life where you and the rest of society simply aren’t on the same page?

When you decide to have children, you don’t get to special order them. You roll the dice and hope that God doesn’t give you something you can’t handle. With statistics being 1 in 88, the odds are greater of having a child who falls into the Autism Spectrum. You suck it up and deal with it. I wouldn’t change a thing about Ryan because he is an awesome kid and has taught me more than I ever imagined. However, I would give my heart, just to see him not feel so hopeless and frustrated. I would cry tears of joy if my other children didn’t have to deal with the fall out of Ryan’s tantrums when life gets too hard. That’s another reason Autism sucks.

Jack, Lauryn and Ryan in Corolla

I’m not trying to whine and complain. I get it. We have been lucky in terms of the severity of the Autism. Nonetheless, there is no eloquent way to say it. It just sucks. Period.

As a parent of two children with two polar opposite disabilities and one typical child, I’m in a unique position to see how society reacts to my three children. Lauryn clearly has a physical disability. She wears braces, sometimes is in a wheelchair or walker and obviously has more trouble getting around then other children. People will fall over themselves to help her and be understanding. Ryan’s disability is sometimes hidden and will pop out at the most inopportune time and no one knows what to do with him.

As a society we conform to certain social rules and behavior. Any deviation from it is abhorred and those who stand out often shunned. Until I had Ryan, I will freely admit to be just like that also. People with Autism aren’t crazy, defiant or stupid. They just view their world differently than we do and are often confused by it. No one gave them the manual of how to learn social behavior and proper decorum that is innate to the rest of us. When you see a child (or a parent) struggling with it, take a breath and be glad you don’t have it. Autism just simply sucks.