Today, I want to share with you what it was like to be raised with an autistic brother. Kyle isn’t just special needs, he is one of the most complex cases the medical community has seen.
My brother was diagnosed with Autism, Bi-polar disorder, OCD, ODD and the list goes on.
He suffers from severe anxiety, and for many years the anxiety was so bad he couldn’t even leave his bedroom. My parents had to spoon feed their 24-year-old son because he was paralyzed by anxiety. Kyle is special in so many ways, and today I want to bring to light the privilege and trials that being Kyle’s sister have brought me.
Let’s start with the positives of growing up with an autistic brother:
Kyle has a lot of personality. Anyone who spends time with him, comments on how charming he is. Kyle knows how to worm his way into any heart, and he often uses this to his advantage. I’m sure he would have been very popular in high school if he had been able to attend free of his disorders.
Kyle has touched my life in a way that no one else ever could.
A smile from him lights up my heart and can make the hardest day a good one. When he comes up and puts his hands on either side of my face and touches his forehead to mine, I know he loves me. A hug from Kyle is worth every second of frustration and heartache. I have a hard time saying no to him which is why he gets lots of “ice-cream” and “pancakes” when mom and dad are away. He knows I’m weak.
Kyle has given me an empathy that runs so deep it can sometimes consume me.
I love interacting with other people who have special needs. They want to be treated just like you and me, and I often think I have benefitted far more than they have from the joy they bring to my life.
Kyle has given me the heart to help others. My siblings and I are all in “helping” professions where we care for others health or well-being. I don’t think these are the fields we would have ended up in without our brother in our lives.
Kyle is just so loveable. It might sound crazy for me to say when you read the rest of this post but it’s the truth.
If I’m being honest…
Growing up with Kyle, my life didn’t seem abnormal. I was used to it. Sure, there was a lot of high-stress moments.
I remember the first time I saw him have a seizure, he turned blue, and my parents were about to call 911, I thought he was going to die.
I was the one who heard his odd breathing, for some reason he had decided that night to come to sleep in the extra bed in my room. Kyle was 10, and I was 8. I woke up because It sounded like someone was choking, and I ran to the top of the stairs and yelled for my parents.
I then stood paralyzed in the hall while they said things like “he’s turning blue” and “call an ambulance.”
That is still one of my most vivid memories.
To this day I am a light sleeper. I sleep well, but the tiniest noise can wake me up. For a long time, I didn’t know why. It wasn’t until I moved out and was startling whenever the neighbour above us got out of bed, did I start to realize I was listening for Kyle. I never slept with a fan. My other siblings couldn’t sleep without one, but I couldn’t sleep with one.
I was worried I wouldn’t hear Kyle if he needed help. Some nights I would walk down to his end of the hall and listen at his door, making sure he was ok.
Before we got key padlocks on all our doors, to keep him from destroying our bedrooms, he would walk down the hall every few nights, and I’d hear a deep voice say “tuck me in?” I would get up and follow him back to his room, he would climb under his blankets, and I would tuck them in all around him and kiss him on the forehead while he smiled away at me. Sometimes this annoyed me, but all he had to do was smile, and I turned into a puddle of mush.
As the next born, I felt a responsibility to protect Kyle. This was a big part of what it was like to be raised with an autistic brother.
My parents never put that on me, it was just a product of being the proxy oldest. I hated when people looked at Kyle weird. One time a teenager made the crazy symbol as we walked by and I was so upset. Kyle didn’t notice, but I went home and cried, angry at how insensitive that boy had been
During our teen years, Kyle regressed. He was always getting into my bedroom and taking my things. He often tried to flush them down the toilet.
Amongst the possession that had been destroyed was a beautiful promise ring and necklace from my then boyfriend (now husband).
During those years Kyle didn’t seem to want to connect with me. He didn’t like that I had a boyfriend and the connection I felt I had with him was lost.
When I was in university Kyle started going through his toughest years.
His anxiety made him resemble an animal more than a human, this broke my heart. When I was at school, I could let it go, but as soon as I came home – the heartache returned. I wanted so badly to help him, but there was literally nothing I could do for Kyle. Instead, I tried to support my parents in any way I could.
When I was twenty-one, I married my knight in shining armour. Dan is Mr. Steady. He is good natured, laid back and has a servant’s heart. He loved every part of me from the very beginning and stuck by me through some very emotional years. When I first moved out, I went home for a visit almost every day. Some people would have thought this was too much.
Our family isn’t like some people, we’ve been through trauma and crisis together, I can’t explain that bond to anyone else.
I felt like I had to be there – like being there somehow helped my parents. I wanted to be their support because they didn’t have anyone else who understood what they were going through.
Kyle got even worse, every day he was sitting in the corner of his room, living under a blanket completely naked – too anxious to feed himself.
My parents were ageing before my very eyes. They were at their breaking point, and I couldn’t fix it.
They would share their trials with me, I don’t blame them because they knew I understood, but afterwards, I would go home and have an emotional breakdown because I so badly wanted to help them and Kyle.
My hair started falling out. For a while, I thought it was hormonal but thinking back I believe it was stress.
Luckily, I have TONS of hair.
At this point, some of you are probably thinking that this post is a pity party. I assure you it is not.
This post is to educate you on what families with special needs kids go through, some not nearly as stressful as mine, but some are even worse.
There are families who have to put their kids in homes because their special needs child is beating them up and destroying their homes.
This is not an easy life to live, but it can be a very rewarding one.
For the Parent:
How you react to the stress created by your special needs child will forever alter your other child’s worldview. My parents made it very clear that they would do exactly what they do for Kyle – for any of us if they had to. I didn’t feel less loved because he took up so much of their time, I felt more loved because I knew they would do the same for me.
I knew my parents would search to the ends of the earth to help any of us.
(Read my mothers post: Waiting on Autism a Mother’s Blessing)
Whenever bitterness crept into my heart, my Dad would remind me that Kyle was suffering. Kyle wasn’t purposely ruining family outings or trying to make our lives difficult. His seizure disorder, anxiety and OCD all had control over him, and he did not have the coping mechanisms to handle them.
Teach your kids to empathize with their sibling, but you also need to empathize with your other kids.
Your kids need to talk to you about their feelings, they need to know that its okay to share whatever emotions they may be experiencing with you – without fear of judgment.
For the Sibling:
I see you, and I am you. Your childhood is unlike your friends. And there is a responsibility placed on you that other kids your age will never experience.
I know that you worry but that you also feel guilty about the days when you don’t love your special needs sibling like you should.
I know you struggle to understand them, and I know you ask God “why?”. You may be reading this and thinking, “No, that’s not me at all.” That’s because you are resilient, and it isn’t until you move out and start living independently, that you will realize the impact – both good and bad – that your special needs siblings had on you.
I know sometimes your special needs sibling may do things that embarrass you in front of your friends. I know your possessions might constantly be getting destroyed and your room sorted through. You may even have experienced some physical abuse at the hands of your sibling, intentional or not – it is damaging.
What I want you to remember is you are just as special as your sibling.
You have been given a different task then your friends, cousins and classmates that will often seem unfair.
You live in an unpredictable environment that may cause you anxiety.
Just remember, everything your parents do for your special need’s sibling, they would do for you. Their love runs so deep they are willing to navigate this chaotic life with you and your special needs sibling, when they could give up and live the same life as the other families you see. -Charity Elliott
Last but not least, you are privileged.
You have been given a gift in the form of your special needs sibling.
Love them and care for them and it will serve you well for the rest of your life, and in the end, you will be a better person because of it. 💗