This week I asked several moms to help me write. Why? To help all readers understand the true spectrum of Autism Spectrum Disorders – not only between children, but between children in the same family. Every day this week you will get to meet a new child (or children)…they are very different from Tucker, and yet, so much the same.
Keep reading – on Saturday I will post a ‘wrap-up’ with some final thoughts about the spectrum itself.
I would love for you to meet my Carter Bear.
He has ability to make everyone fall in love with him. He is so very innocent and doesn’t have a mean bone in his body. His smile and belly laugh will light up an entire room. He loves music> He memorizes songs and books with ease, to repeat hundreds of times later. Although he doesn’t pick up on all the social cues, he most definitely has a sense of humor and is quite the jokester. He is hungry to learn, and very intelligent. Carter is amazing in so many ways, and the progress he has made is remarkable.
Between 2 and 2 1/2, I noticed that his speech wasn’t like his peers’. Carter could talk, but it wasn’t very conversational, he wouldn’t ask or answer questions. Although my concern was dismissed by his pediatrician, I called our area education agency. I thought perhaps he needed speech therapy. Someone came and attempted to get him to cooperate with her evaluation. At the end, she said “I think we should call the autism team.”
I searched online and immediately knew that he had autism. He loved to spin and walk in circles. He was content playing by himself. He would rather perform acrobatics to get his own cup out of the cupboard, than to ask me for a drink. His eye contact had been decreasing over the last year. This child also had no fear.
Carter takes “daredevil” to a whole other level. At the age of two, he went missing in the house, only to be found on the highest shelf of my closet, his head inches from the ceiling. He’s balanced one foot on the top of a Tide bottle on the washing machine in order to swing his other leg up to the shelves high enough above to hang clothes on, just to lie down. Being a Houdini in terms of locks, he escaped to our fenced backyard, and was found sitting on top of a 12 foot ladder. His agility equals his fearlessness, fortunately, and he has never been hurt.
Along with his fearlessness, he is also a runner. He will wait and wait and wait. You swear he’s not paying any attention to you and the moment his golden opportunity presents itself, he darts away to explore. He completely lacks the neurotypical child’s desire to stay within eye sight of mom. Too many times to count, I’ve had to kick off my heels and sprint after him through neighbors’ yards, or near school when he would shake off my hand to get loose between the car and school.
Carter is a sensory seeker. He LOVES water; swimming in it, throwing things into it and watching the splash, and throwing water and watching IT splash. This includes the toilet. Lets just say that I’m a great customer for the local company that unclogs sewers. He enjoys dumping things out like water, laundry detergent, and BLEACH! He also really likes watching things break, like eggs and glass, and flatscreen televisions…three of them.
It is obvious that he needs constant supervision. One might say that all children need constant supervision, but not quite like this. A child with the intelligence to unlock almost anything, the patience to wait for an opportunity, and the desire to escape and explore is a challenge. Unfortunately, sometimes parents have to use the bathroom, tend to another child, answer the phone, prepare food, or even sleep.
All of the stars aligned in May of 2013, when a little bird told me there was an ABA therapy center opening in town. I wanted that for Carter all along, and this was the first I’d heard of one that wasn’t two hours away. Fortunately, Carter was accepted to the program. The next step? Paying for something that would change our lives, I didn’t have an extra $6,000 a month lying around. We were lucky to have the financial qualification waived through a waiver program offered by the State. This waiver allowed Medicaid coverage as a secondary insurance. He was finally able to start in February of 2014. Transportation has been made possible by both of his grandmothers. He goes Monday through Friday, from 1-3:30, year round. This has been nothing short of a miracle for Carter.
He has been in the program for a year. We no longer have to hold his hand at all times in public or outside. His speech has greatly improved, and he is really good at telling us what he wants. He’s asking questions now. He can follow directions (and does most of the time). He is really “on” and present, much more than not. His little sister, Kendall, asked, “Does Carter still have au-sim-tim? He actually answers us now when we ask him stuff.”
He loves to snuggle (pronounced “snunkle”) now, more than ever, with mom and sissy. He even asks “Mom lay down with you?” which means “Mom, [will you] lay down with me?” Carter is really enjoying joint attention now, and wakes me up at the crack of dawn to play Mario Kart with him on the Wii. He’s eager to play with peers and is learning how to ask his peers to play with him. He’s mastered turn taking with 3-4 peers. I found great joy when he recently passed gas and announced, “I farted” and then giggled. That’s what a seven-year old boy should laugh about!
The hopes and dreams I have for Carter are still very much alive. They are just different from what I expected. If he’s able to move out on his own someday, that’s great. If he continues to stay at home, that’s great, too. I don’t know what the future holds for him, and that’s okay. I love this kid to the moon and back.