For nearly a decade, we have overlapping therapists at our house 12 hours per week. Therapy has become a lifestyle for us and we get a lot of questions about this lifestyle choice. Some people ask me why I don’t do more, why I don’t send my children to a specialized school or a residential facility. Others ask why I do any therapy at all. Like anything in parenting, you’re going to get judged no matter what choice you make, so it’s best to do what you feel in your gut.
In my mind, the goal of therapy is to change certain things to improve my children’s lives. We work on safety, self-regulation, independence and effective communication through a variety of therapeutic approaches including Floortime, Naturalistic ABA, Occupational Therapy, Physical Therapy, Speech Therapy, Therapeutic Horseback Riding and medication.
Safety
All parents want to keep their children safe, it’s literally our number one job from the day they are born. Prior to therapy my children would run into traffic, wander off in a crowded place or jump into a pool with their clothes on—and no they could not swim. I would yell their names in terror and they wouldn’t even turn their heads. The fancy name for this type of behavior is elopement. Elopement made our lives hell. I was constantly afraid to leave the house because my children being seriously injured or killed were actual possibilities. Therapy has allowed my children to become more aware of their surroundings and make safer choices.
With the combination of therapy and medication I can now take all three children out to a crowded place by myself without a single incident. Unless you’ve been through this it’s probably hard to even imagine the internal pain elopement causes. While the nightmares and flashbacks remain, it is such a relief to feel that my children will be alive at the end of an outing.
Self-Regulation
I want my children to feel calm and comfortable. People with Autism have sensory processing difficulties that impact their ability to self-regulate. Occupational Therapy for sensory processing issues helps young children understand their sensory needs so they can learn to self-soothe. Children try out different sensory tools and strategies during this type of therapy. The goal is to help kids improve their internal state and therefore be able to participate more fully in life.
Independence
Most parents expect that their children will eventually “leave the nest”. Parents of children with Autism are not guaranteed this luxury. There may be years of therapy involved in getting a child with Autism as independent as they can possibly be. Some need help learning self-help skills like eating with a spoon, toileting and getting dressed. Others may need therapy to learn community skills like how to use a public restroom, attend a concert, or work in an office setting. Therapy can help people with Autism learn how to have reciprocal conversations and build friendships.
Effective Communication
You don’t realize how important communication is until you spend time with someone who struggles with it. Communication refers to a variety of methods to exchange thoughts and ideas. Speaking is only one way to communicate. Other options include American Sign Language (ASL), the Picture Exchange Communication System (PECS) and Augmentative and Alternative Communication (AAC) devices.
All three of my kids had communication difficulties. Over the years, my kids have communicated with gestures, ASL, PECS, AAC devices and speaking. PECS and ASL require those around them to understand the method which is limiting. AAC devices can be understood by most but are bulky and aren’t suitable for some settings, like pools. Spoken communication is great when the person can pronounce words easily, but this isn’t the case for my middle child.
Think of a newborn baby crying and being unable to tell if they are hungry, tired, sick, or injured. Parents of children with communication impairments experience this far past the usual first year of life. People with communication impairments cannot ask for help with physical, medical, or safety issues. They cannot share their thoughts and feelings which can lead to emotional issues like anxiety or depression. Difficulty communicating can also lead to frustration and physical aggression. This has the potential to harm the child and those around them.
Teaching effective communication starts with teaching the system of communication: ASL, PECS, AAC or speaking to express needs sometimes referred to as “manding”. Next the person has to be taught how to have back and forth conversations with whichever method works for them. This process can take years for many but is not an issue for others.
Personality
What I don’t want to change is the core of their personalities which is greatly intertwined with their Autism. I have made it very clear to anyone working with my kids that I DON’T WANT TO CHANGE:
- The way they think
- Their view of the world
- Any stimming behaviors
- Their perfectionism
- The traits most see as “quirks”.
My children’s personalities are embraced for all of their “oddities”. I’m proud that my oldest knew everything about tornadoes at 4 years old. He reminds me to stay curious. I love that my middle stared at the patterns in rocks and grinned when he was 2. To be honest, I never took the time to notice the beauty of nature before having him. I’m amazed with how my youngest describes the world from a viewpoint I’ve never heard before. She challenges me to consider a new way of seeing the world.
I don’t want to fix Autism and I don’t want my children to become different people. I want them to love their inner selves and let who they are shine so that the whole world can appreciate them as much as I do. Learning safety, self-regulation, independence and communication are large tasks for such small children. The key is to have the right therapy providers, modalities and making sure it’s fun. I believe that my children have the potential to change the world and the various therapies gives them the chance to unlock their full potential.