Living with Autism

Intro by Andrea, Post by Cheryl E.

Sometimes you meet a person and you know that they will be an incredible parent. I met Cheryl before we each had children… and while I knew that she would be a wonderful mom, I had no idea that she would turn out to be one of the best, strongest, and most loving moms that I have ever met. Cheryl’s journey through parenthood isn’t the typical one, but it is perfect in its own way. She inspires me with each word she writes… I hope she does the same for you.

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The Signs

The words were slow to come. And even when they did, they were few and far between. Mama. Dada. Ball. Truck. Hi. Bye. Simple, single words. Until they weren’t. Until those words slowly disappeared, too.

Toys all lined up in a row. It didn’t matter which toys, it was all the same. Cars. Blocks. Little People. Puzzle pieces. All neatly lined up, in rows by color or shape or size or some other pattern you could not discern. But make no mistake, there was a pattern. There always is.

Boundless energy. Constantly in motion, never wanting or needing to sleep. Dancing to entire movies, not once sitting down to watch. Hardly sitting down even to eat a meal. Hopping, jumping, skipping around the house from sun up to sun down and beyond. Always moving, always going.

Odd sleeping habits. Falling asleep sitting or standing up. Going and going until finally crashing anytime and anywhere. Night time waking. Hours and hours of jumping and laughing in the middle of the night.

Odd hand movements. Two hands, quickly and simultaneously moving back and forth in excitement. Over and over again.

Spinning. Round and round and round. Over and over again. Usually with a smile, or perhaps even laughter.

Meltdowns. Changes in routine. Strangers. Strange places. Grass. Sand. So many little things, so many different things, triggering them.

Selective and oversensitive hearing. Not always responding to a name, not noticing certain noises, covering ears to block others.

Looking back, of course, the early warning signs are clearer. At the time, they were quirky little things that appeared to happen at random and not terribly often. Autism wasn’t even on our radar. Why would it be? We don’t have a family history of autism, not a single known case on either side of the family.

And yet there it was. Staring us in the face.

This is our story.

I will caution you that every story is different. Autism is a spectrum disorder affecting communication, social skills and even cognition, there is an incredibly wide range, and it affects every single person differently.

We are living proof. You see, of our three boys, two of them have autism. They are identical twins – born only minutes apart, growing up side-by-side in the same house – and yet they have very unidentical autism.

It was somewhere between their first and second birthdays that we started to be concerned. Though all of their other developmental milestones had been pretty typical – sitting up, crawling, walking – their language was delayed. A few words here and there, but no two-word combinations and certainly no sentences. We were concerned enough to discuss it with our pediatrician and a few others. Most of the time, we were told that boys are often later to talk, and that twins even more so because they often have their own language to communicate with one another.

We waited for a while. We wanted to believe them, of course. Certainly our oldest son had been a little late in talking if everything we read and heard was correct. He had much more single words at their age, but he didn’t start putting words together until he was almost three. But once he started, he did not stop. It gave us hope that everyone else could be right.

But other signs were there. Small, little things that didn’t amount to much individually, but when you started seeing the pattern, it became more of a concern. Lack of eye contact. Not answering to their name. Covering their ears at certain sounds. Completely oblivious to other sounds most people would notice. Lack of traditional play. Complete lack of interest in other people.

There’s a lesson there. One quirky behavior is perhaps reason enough to be observant. But it’s the pattern of behavior, the group of quirky behaviors taken together, that is the concern.

Of course I started doing research. Books, magazine articles, online searches. Let me tell you now, it will scare you to death. There is so much information out there. Some of it is true, some of it is exaggerated. There are so many different opinions about the how and the why, and so few real answers or solutions. There’s also no cure. And truth be told, there’s no one-size-fits all treatment either. The community itself is often divided over best methods and treatments, and frequently criticizes those who fall across that dividing line. Like I said, scary.

But you jump right in, because you have to. It’s your child. You love them with a ferocity you cannot possibly imagine, you want to do everything you can to make their life better right now and into the future. It will never be easy, the life you probably imagined is a distant memory, but you will find your way. You will figure out what works best for you and your child.

Just as the pattern was starting to become obvious to us, one of our boys started to seriously withdraw. His limited interaction with the world became non-existent, and he even pulled away from me – the one person he had always clung to and tolerated in his world. He wouldn’t even look at me, or let me into his world for a single moment of his day. He just sat in one corner of our house, lining up his toys and staring out the window, fascinated by the shadows and light and motion of the blowing leaves on a favorite tree.

It was terrifying.

And that’s when we pushed for an evaluation, even though our pediatrician was not completely convinced (and in fairness, she only sees the boys once a year for well visits, and she did provide the referral when we asked). We started with the state program, which serves children under age three.

They received evaluations, both qualified with a significant developmental delay, and home-based therapy (speech, developmental and behavioral) followed from just after their second birthday until age three, when they were transferred over to the local school system. Both boys have spent three school years in early start, with special education teachers, and speech and occupational therapists.

Both boys eventually received an official autism diagnosis. The first came just six months into the state program, for the one who had completely withdrawn from us. The second came just last year through the school system, though we knew it long before. It didn’t become necessary until a grant program at their school would only admit those with an official diagnosis, and we wanted him to participate.

Autism was not something we ever expected in our life. But we have come to terms with it. We try hard to balance the special needs of two without forgetting the needs of the rest of the family. Our journey is not the typical one, but it is ours.

Both boys have made huge strides since those early days. One of them talks to us, and though it is often scripted and repetitive, it is also functional and responsive. The other one does not talk to us, at least not yet. We are still hopeful, and we are exploring a communication device to assist him. Both boys answer to their name, and will look at you, however briefly it may still be. Both boys have even made strides in terms of engaging with world around them, and sometimes, even the people within that world. They are adapting to change, though not always happily. They are bright and determined, able to read people and situations clearly to get what they think they want or need. They are happy, with the most genuine smiles you will ever see or laughter you will ever hear.

I will not lie to you. There are days when it is incredibly hard, when you find yourself wishing for just one normal day and trying really hard not to resent every typically developing child you see. It’s painful and frustrating to see how easily things come to most children, and watch how incredibly hard it comes for your own, or to watch your children in their own world, side-by-side with others their own age.

This life can be hard, it can be expensive, and no matter how hard you try to keep it contained, it will simply affect every single moment of every single day. It is pervasive. It is life-long. It never goes away or even stops for just a minute. It’s always there, sometimes front and center, but always a current right below.

And though I would not wish this life on anyone, I will say that it has also made us slow down, notice more, appreciate more. Every single step forward, no matter how small, is celebrated. Every simple moment of happiness is enjoyed so much more. You will find others who understand, who speak the same language and face the same battles. They will celebrate with you.

It also makes moments with our oldest son even better. His “I love you” is that much sweeter simply because he’s the only one who actually says it. His “Mama” is that much more meaningful because the other two have not said it since they were just over a year old. His ability to tell us about his day, to talk about things he likes or wants to do, or even to do his homework, is not taken for granted. His personality, so big and so open, and his ability to make friends or join in any conversation, is admired. We know how hard that comes for his brothers.

There are times when I wish I could take it all away, not only for my boys, but for all of those out their living this life. But autism is simply part of them, part of their personality. Without autism, would one love letters and words so much that he’s taught himself to read? Would the other love to swing and bounce and swim with such true joy? It’s hard to separate the autism from the boy, and I happen to love the boys. I would wish away the struggles and the challenges, of course. But I would not wish away who they are. I am convinced that both of them know much more pure joy in their lives than the rest of us, because they simply do not care about what others might say or think. Their happiness is their own, and it does not depend on anyone or anything else.

This is not the life we imagined. But we love each of our children, and we do all that we can to make sure that each of them will have a happy and successful life. Their paths will all be different, but we will always be right there behind them. Pushing and pulling. Supporting and advocating. And eventually standing back and letting them make their own way. That’s just what you do.

For anyone who is concerned about their child’s development, I will only tell you this. You know your child best. You see them every single day, know their moods and their personality and their quirks. If you are concerned, do something. Do not let anyone talk you out of your concerns, whatever they might be. Call your pediatrician. Get a referral to a specialist, if necessary. Call the state program (if under age three) or call the local school system. There are trained professionals who can objectively evaluate your child and give you the answers you need. Many of the services through the state or the school system are low-cost, if not completely free.

You know your child. If you’re concerned, do something.

Early intervention is one of the few treatments everyone in the autism community will agree on. It is not a cure, but it can have a tremendous impact. Our boys are certainly proof of that. We could not be more proud of who they are or how far they have come.

 

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