As a child of the ’80s and ’90s, I grew up knowing almost no one with a disability. Sure, I’d see some kids with special needs at my school. But rarely did I interact with people with disabilities, nor was I given much of an opportunity to do so.
Why It’s So Great
I dare anyone to find someone as empathetic as our 9 year-old, Jack. His ability to see the good in others and befriend everyone he meets makes my mama heart proud.
Our 7 year-old, Eli, has taken on the role of big brother to the extreme. He is very protective of his brother and sister. And while he definitely gets more frustrated than Jack, he is undeniably proud of his role.
While I can’t claim that Jack and Eli don’t see disabilities in others, I can say that it has never stopped them from interacting with those with disabilities. When Jack was five years old, we saw a young girl in a wheelchair. As we passed her, Jack and Eli both said, “Hi!” I told them, “That was nice.” Jack put me in my place and said, “Why was that nice? It’s just what you say to people.”
Jack and Eli have never known a world without disabilities taking the forefront in their lives. It has led them to think outside the box, to think more creatively and constructively, and to be more patient.
My husband Adam and I often joke that while we always hoped our kids would be close, we never thought they would be inseparable well into their tween years. I am in constant awe that through their fights and disagreements, their loyalty to one another always comes first.
Why It’s So Hard
My eyes are welling with tears as I type. Jack and Eli have been through just as much as their siblings with special needs. Although their needs may not be medical, they certainly have emotional needs. And those needs have not always been met. While we tried our hardest, read all the books, and listened to all the “experts,” we unintentionally placed their needs second. We are not alone; every single parent of a child with special needs would echo my sentiments.
A friend of mine who has a sibling with special needs summed it up by saying, “Everything is about the special needs child. You will always come second to their wants and needs.”
The Need to Be “Normal”
Jack and Eli have an immense need to be perfect. They stress out when something doesn’t go according to plan. My husband and I have tried to reassure them that we don’t expect them to be anyone but themselves. However, their innate feelings have caused stress and feelings of inadequacy.
While Jack is super social, he often expresses how lonely he is. Jack can get embarrassed about his brother and sister, as is common for many kids who have siblings with special needs. Although he loves Claire and Sam fiercely, he feels anger and frustration when they act socially “atypical.” That type of behavior is mortifying for a kid striving for perfection.
Eli, born into absolute chaos and assuming the big brother role way too early, prefers to be alone. He can be more quickly frustrated with his siblings, but loves and protects them relentlessly.
As I’ve grown as a parent of children with special needs, I’m the first to admit my faults as a mother to my kids that don’t have special needs. Even at the expense of Jack and Eli’s own social relationships, I have wanted my kids with special needs to feel included. “Don’t forget your sister!” and “Make sure your brother is included!” have been said so many times I’ve lost count.
While I am thrilled my four children are incredibly close, I will always regret that I didn’t give Jack and Eli more room to grow and flourish as just Jack and Eli, and not Sam and Claire’s brothers.
Every single trip, vacation, day off from school, etc., we think of one thing first: how will Sam and Claire do? We oftentimes have to hire someone to come with us on our trips because they are so unpredictable. Travel, something we wanted to do as often as possible, has been incredibly limited.
Also, we rarely have babysitters. It is hard to find someone who is comfortable around children with autism and a 5 year-old with unintelligible speech. Our main babysitters have worked at the Autism Center and Creative Care for Reaching Independence (CCRI). It’s not that we don’t trust other people, it’s that I could never forgive myself if something happened unexpectedly if Sam lost his temper and things got out of hand.
Fears of the Future
This will come up more as we age, but it has been shocking how often Jack and Eli have casually discussed their siblings getting older.
“Claire can live with me and my wife when we’re old. She’ll be the best aunt ever.”
Eli said this to me one night, out of the blue, while we were reading Harry Potter. I stopped and looked at him with tears in my eyes and said, “Bud, you don’t have to worry about that.”
He said, “But we’re family. And that’s what families do.”
Eli was 6 years old when we had this conversation. It brought me to my knees in the shower a few hours later. As I sobbed uncontrollably, I realized I had never forced myself to think about Sam and Claire getting older and Jack and Eli taking on the huge responsibility of their care.
It was in that moment I realized my two boys were different. No matter how hard I had tried to make their childhood normal, it wasn’t. Their lives have been forever altered by having Sam and Claire as their siblings. They are kind, inclusive, and complicated. And they are incredible.