We are an autism family. We are one loving unit, and autism is a part of who we are.
There are times I feel autism is being at the mercy of what I cannot control. I cannot control the brightness of the sun, I cannot control the volume of the music in the car next to us at a stop light, I cannot always control lost toys, low batteries, video games not working. Our son with autism spectrum disorder (ASD), Declan, may react negatively to these things on any given day.
There have been many times my husband, Bob, and I have prepared to take the kids to a fun place like the playground, the zoo, or Chuck E Cheese. And then something happens to set Declan into a negative state. We know we have to leave or can’t partake in the fun day that was planned.
We see Declan under stress, and we look up to see the faces of our other children, Bobby and Catelyn, who are being asked to put their tokens down or put their toys away and follow us directly to the car.
Declan doesn’t go quietly. If he is in crisis, he is wrestling, head-butting, punching, screaming. And we have to ask Bobby and Catelyn for flexibility, to listen, to temporarily contain their disappointment. Let’s get to a safe place. Let’s all distress. Let’s make it better together.
Declan had a very typical development until he was about two years old. By the time he was two, he was having significant problems. Declan stopped speaking, his behavior became very erratic and unsafe.
Declan never stopped moving, shaking his head, chewing on things, breaking things, climbing everything. Declan could not be left unattended for any period of time. Declan hit. Declan began to have major sleep issues that affected the entire family. Our typical family, with typical development, with typical problems, began a change none of us, at that time, were prepared for. We were an autism family.
We made as many accommodations as we could. We took dresser drawers out, took curtains down, removed glass from the house. Sometimes you can’t make accommodations. Typical life stress still happens. Two older kids are still developing, making choices – some good ones and some to learn from. They are trying to participate in activities, recreational sports. They want to go to the local bounce house establishment for fun, yet Declan doesn’t bounce.
He either stares at the bright red lit EXIT sign or tries to get behind the bounce houses to unplug them. They need to go to doctor and dentist appointments. “How are we going to go there, or do that with Declan?” was always the question to ANY proposed event. We learned ways, together, as an autism family.
Autism is stressful. I can assure you autism puts a lot of stress on a marriage. There are decisions that my husband, Bob, and I have to make — there are situations that Bob and I have to face and handle, and who is the easiest person to yell at when you are stressed? The person you love the most. I am so proud to say we are one strong loving unit. We are an autism family.
Bobby, Catelyn, and Declan are siblings. Their bond is unique in that way. They eat together, watch TV together, pray together, play together as siblings do. ASD is a part of their relationship. Bobby and Catelyn know Declan has ASD. They understand that some of Declan’s needs are different than theirs. When Bob and I can’t keep up, they are Declan’s shadow in the community, his protector. They witness his joys and his meltdowns.
They are his support when he is frustrated or confused. Many days, Catelyn lives in Cate-land, and she loves to bring Declan on magical adventures. She is so imaginative! It is great for Declan, a concrete thinker. In the community, there are many times Declan has misread a social situation and will hit another child, sometimes more than once. I find I am not the only one running to intervene. I always arrive with Bobby and/or Catelyn by my side, trying to assist as well. Bobby and Catelyn are one heck of a brother and sister.
When I was in high school, I ran on the 4×800 relay team in track. I primarily ran the first leg and was coached to get the baton out as far ahead of the other teams as I could. I knew how important my time with the baton was. I knew I couldn’t drop the baton. I knew I needed to hand the baton off.
I knew I needed a team to run that race. I feel like our autism family is very similar in this respect. We are in this together. We need each other to do this well. We need to be able to hand off to the next person and say, “Can you help me?” We each have a unique strength that helps the family reach harmony.
We are an autism family. We are aware that Declan has needs that are special. We have created a safe environment for Declan to grow. We provide Declan with unconditional love and support. We live in an amazing community of families filled with love, patience, and understanding, always ready to support our family as a whole.
We work with his special education teachers and therapists to help him grow. Our autism family works together to help spread autism awareness and understanding to help Declan, who will need understanding, patience and autism awareness surrounding him as he goes out to experience the world.
We didn’t start in this better place we are today. To the autism outsider, we would say: You are going to see someone go into crisis, for what you feel, no apparent reason. It’s hard for kids to put down tokens or walk away from fun with a smile. It can be hard for parents not to fight when faced with a stressful situation, no matter how public an area might be. You’re going to see the autism family out there. Be patient with them. It’s hard.
I asked each family member what would they say to someone about Declan and/or autism:
Catelyn said: Declan is fun and nice
Bobby said: Declan is funny and loving
Bob said: Autism is challenging and exhausting but very rewarding
At times I still feel autism is being at the mercy of what I cannot control. But I have one amazing autism family.
Robyn Coupe is a wife and mother of three children. Her youngest child, Declan, has autism spectrum disorder. Robyn has her Master’s Degree in Clinical Psychology and has worked in the Mental Health field as a Residential Counselor, Case Manager and Safe School Specialist/Crisis Counselor and Responder. Robyn left the Mental Health field to work in the business field before returning to home to care for her family. After her son was diagnosed with ASD, Robyn continues to learn about ASD, how to help her family, how to advocate for her son and to spread autism awareness.
This article was featured in Issue 54 – Surviving Family Challenges