Autism and Age

Have you stopped thinking of your Autistic child as a certain age? I think I sorta have. While Cooper is six…cognitively, socially, behaviorally, emotionally, he is all over the board. He ranges from six months to probably four years old. Yes, he wears 6T clothes. And yes, he was born in 2010. On paper he is six years old. But in my mind, he is almost his own unique age. And, I don’t think it even is a number. In my world…age and autism don’t correlate.

Having a disabled child has changed my views on time. And age. Everyday is the same for us. A constant repeat of the day before. While my son’s body grows…hardly anything else changes. I grow older. He grows older. The world is moving around us.  And yet, everything is the same. I break up my world as ‘pre-diagnosis’ and ‘post-diagnsosis.’ My markers have become different therapies. That year we were at Fraser for services. Year five was Kindergarten.  This year we are at Minnesota Autism Center. It is strange. I often wonder if my world stopped when we heard the words…’Your son is Autistic.’

Six Year Old Milestones

Most six year olds are in kindergarten. They are getting invited to birthday parties. They are joining activities like T-Ball and Dance. They are begging their parents to have a play date and to go swimming. Not us. We go to therapy. Always more therapy. We spend our days in waiting rooms and talking on the phone to insurance companies. Cooper lines up chairs. He watches trains. Our world is different. My son is different. My life is different.

Here are a few that kill me from Web MD. Most children by age 6:

• Can tell you their age
• Are learning to express themselves well through words
• Begin to understand cause-and-effect relationships. “Magical thinking” typical of preschoolers quickly fades around this age
• Are learning to write
• Can spell their first name and can write some letters and numbers
• Read some simple words
• Start to grasp the concept of time

We aren’t there yet. None of these ‘milestones’ are happening for us. And to make it even harder…and I guess maybe easier…we just quit public education. We’ve lost yet another marker of age. I no longer have a kindergartner…he is on his own unique path of therapy. No more first grade, second grade, etc.

The Movie Groundhogs Day

I swear my kiddo is suspended in time. Every day is the same. Up at 5 am, Kindle, same train movie on his bedroom TV, cereal breakfast, Capri Sun, then Dora on the living room TV, the list goes on. His mornings haven’t changed in years. It gets to the point where every day being the same starts to feel claustrophobic.

It makes me think…Are birthdays as exciting when you don’t celebrate them or do anything that comes with the new age?

We no longer have birthday parties because they upset Cooper too much. Instead, we celebrate him by doing an activity he loves to do. And that’s great! His happiness is our top priority.

But…birthdays have taken on a new meaning. His life seems more like one continuum. We won’t have a middle schooler at age 12. Or be applying for his permit at 16. Or fighting about dating and his curfew. Or graduating at 18 and becoming an adult. Or having his first LEGAL beer at 21.

Instead, I think the important milestones for us are around guardianship, insurance and Medicaid changes. God that’s sad. Instead of celebrating adulthood we will be fearing for his rights and trying to yet again…keep him safe. We will be talking about his care after we are dead. We will be looking to his sibling and relatives to make long-term plans. The fear is real.

At Home, I Don’t Think About Autism

When we are in our home…without other peers around…I don’t really think about Autism. Or my son’s delays. Or that he is ‘different.’ Or nowhere near where a six year old should be. Instead, he is just Cooper. He is my silly, chair lining up, train loving, dancing, rigid, dramatic little boy. His dad, brother and I know how to work best with Cooper and that is that. Yes, at times it is survival. We have learned that our ‘normal’ is well-functioning chaos.

In our home, I am able to forget all of the ‘things’ he should be doing. We just live. I’ve even stopped comparing him to his brother. I had to a few years ago. It was too hard. Sawyer is four and has surpassed his brother in every way.

But, when we leave our home, and are around other six year olds (or three or four or five year olds)…that’s when I get sad. I see the blatant differences. It’s almost like they are screaming at me. Cooper has a cousin who is almost the same exact age. All of my dear friends have kids the same age.

And when I see them without Cooper, it’s like I don’t even compare my son to them anymore. My friends have six year olds. I have Cooper. It’s no longer apples to apples.

Cooper is on his own path. He is his own unique age….not quite sure if there is even a number for it.

But when we are all together…side by side…on paper, Cooper is still six. There is no hiding from that number. And I see that his peers have surpassed him by leaps and bounds. Babies have surpassed him in some areas. It’s hard friends. I think it always will be. I am not numb to it yet.

So, to me, my son is almost ageless. Maybe it’s a defense mechanism for my heart and mind. I’m not sure I guess. It’s just easier to think of him as Cooper…not my six year old.