‘People often ask me what is the hardest part of having a child with autism. The irony is, it’s not the child with autism. It’s my other child.’

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“People often ask me what is the hardest part of having a child with autism. The irony is, it’s not the child with autism. It’s my other child — It’s trying to maintain a normal childhood for my ‘typical’ older daughter, Celia, who is along for this not so ‘typical’ ride called autism.

Celia was born two and a half years before Sadie. She had all my attention as my one and only. We played, pretended, and painted always at her pace. Like most first time parents, I was impressed with her every move and thought. I remember at my ultrasound with baby #2, crossing all my fingers and toes and praying for a sister for Celia — a sister that could join in on all our fun. A sister that would be Celia’s playmate. And when Sadie came along… it was like that! For 18 months, Celia had that sister experience. But as autism crept in, normalcy slipped out. By age 4, Celia’s childhood was impacted by autism.

I often think Celia must feel like an only child for all the negative reasons but without getting to enjoy the positives of only child status. After all, she does not have a sibling to play with and yet she certainly does not have her parents’ undivided attention. People try to comfort me by telling me how empathetic Celia is going to be, how her heart is being shaped in such a special way, or that perhaps she will grow up to be an autism therapist. I know people mean well but I really don’t want any of this for Celia. I wish her last 7 years were filled with make-believe, Doc McStuffins and princess dress-up with her sister, and less with attending Sadie’s Speech and OT sessions. I wish I could wipe her memory of all the times Sadie has bitten her or broken her things and replaced those with sister tea parties and typical sibling squalls.

Celia’s world has to go through the autism filter just like mine does. As a 10-year-old tween she needs to consider which of her friends to let into our world and see that her 7-year-old sister is still in diapers, grabbing food with her hands, and playing with Fisher Price. Celia has to balance wanting mom to sit and wait at dance class like the other moms with the cost of being embarrassed by Sadie’s loud noises. She knows that certain tiny toy parts and Polly Pockets are not worth having in the house. She has learned to throw these out with the packaging. She has to help out more than is typical and clean up messes she did not make. She has to leave a neighbor’s house wishing for what they have. Finally, she has to wait till Sadie is asleep or with a therapist to have her parents’ full attention. On Monday, when Celia was home ‘sick’ from school, she noticed that at 10 a.m. the refrigerator door did not have the dog collar around the handles.

‘It’s nice to not have to lock the fridge. Can we leave it like this …just for today?,’ she asked, and I nodded. This one affected me! Because I see it… I see how this affects everything for Celia. Even the ease of getting a drink in her own home.

I try to make up for it all. I have been playing Calico Critters and American Girl Dolls for years. I am currently learning all the moves to the ‘Whip and Nae Nae’ on Just Dance and I can sing along to all the songs from Disney’s ‘Zombies.’ When Celia claimed her tummy hurt on Monday morning, I let her stay home knowing well it was just her own exhale from the noise of the weekend. But as much as I try to make up for Celia not having a true sister experience I won’t be able to do much for her when I am gone.

Instead of having an adult sibling relationship, Celia will likely be a caretaker at least to some degree. And knowing Celia… she will want the duty because she won’t trust it to anyone else. She has always been Sadie’s fiercest protector. She is constantly reminding me to up my expectations of her. When we looked for homes while we were moving, it was Celia scoping the area to avoid nearby lakes or wooded areas. And when we have a sitter at our house, Celia knows… she is really in charge. Even though Sadie bites her, breaks her things, and gives her very little acknowledgement in return, Celia does not give up on Sadie. She loves her. But we all want love in return. With autism, love comes in little glimpses of the eyes or a moment of joint attention and then its fleeting. I worry these moments are not enough for my 10-year-old Celia. This is the hardest part of autism.”

This story was submitted to Love What Matters by Regan MacKay Lister of Hummelstown, Pennsylvania. Her 7-year-old daughter, Sadie, has severe autism. Lister has been writing a post a day on her This is Autism Facebook page explaining her family’s life with autism in honor of autism awareness month. 

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