Before our first child, my understanding of autism came from movies and TV shows that had a character with savant syndrome, like Rain Man and Mercury Rising. The autistic character displayed obvious social deficits but demonstrated exceptional abilities in another area.
After our first child, my understanding of autism changed.
Autism refers to a group of complex neurodevelopment disorders characterized by repetitive behaviors and difficulty with communication and social interaction. It can manifest itself in a countless number of ways. No two children with autism are alike. They certainly don’t all have savant syndrome.
Having an autistic child in the house gives everything a unique twist. Parents and siblings learn survival skills that just aren’t needed in the ordinary household.
Some of our challenges:
- Joseph developed an obsession with light bulbs, so we had to change every light fixture in the house to keep him safe. When someone invited us over, we had to ask, “Do you have lamps?”
- His love of fishing–even in the bathtub–made us hyper-vigilant to the sound of water running in the house. “Joseph, is that you filling the tub?”
- We had to install keyed deadbolts to keep him from wandering off.
- No pets in the house that are small enough to toss.
- If you’re missing a key, check his room.
- If he comes around with a camera, hide. He’s not interested in taking a “nice” picture. He’ll get a shot of your foot, your half-closed eyes, or a close up of your balding head.
Some solutions came late. Joseph, now fifteen, was a very uncomfortable baby. He always wanted held and could never sleep through the night alone. Despite the advice of well-meaning friends and acquaintances, Joseph slept in our bed for years. When he grew too big, we finally transferred him to his own bed, but we had to squeeze into it and sleep with him until he fell asleep. I can hear some of my readers gasping. But this worked for our exhausted family. Whatever technique you’re thinking of, we tried that. It wasn’t until we got a dog from Wags for Kids, an organization that trains dogs for special needs children, that Joseph slept in his own bed . . . with the dog, of course.
Also due to the autism, we’ve faced many joys. Parents with special needs children will relate. Joseph reached his developmental milestones way later than typical children did. He learned to crawl, to walk, to say his first word, to put three words together . . . months or years later than his peers. Nothing can compare to the joy and pride we experienced when he finally did these things.
“He used the potty instead of his diaper!” He was four years old when we could boast about that greatly-longed-for milestone.
We are blessed to have a happy, silly boy who is very social, makes eye contact, and loves hugs. Not all autistic children are this way. He is now fifteen and has grown into a happy and social teenager with a variety of interests including bowling, fishing, taking pictures, and serving Mass. He is very proud of his accomplishments. We’re proud, too.
While a part of me wishes God would heal him of the autism, the rest of me doesn’t worry about it. I love him just the way he is. He is a special and irreplaceable part of our family. I can’t imagine life without him and all his quirky behaviors.
Joseph inspired me to base a character in one of my books on him. Toby Brandt, Peter’s younger brother in Roland West, Loner, is modeled after Joseph. Everything that Toby does, Joseph does or did. This character was fun to write!
Our little autistic boy has given us so many memories, so much hope, and filled our hearts with love. I do not want to downplay the challenges a family faces when they have an autistic family member, but for us, life with him has been an adventure.
Do you have a sibling or know someone with autism? What challenges do you face in having a sibling or classmate with autism? I would love to hear about your experience. Please share it in the comments.