Back in the early 90’s, when my brother was first diagnosed, there wasn’t much information or resources available for children with Autism. Research was really just beginning to get attention; however, it was known that having a child with autism was most likely going to be a challenge. Unfortunately, it is rarely recognized that siblings of children with autism (and other special needs) can struggle just as equally if not more so.
I am 23 now, and this summer I volunteered with Adams Camp again (special needs camp, highly recommend it!). I was partnered with 5 therapists and an additional volunteer to work with 7-9 year olds with mostly physical and speaking disabilities. Usually when I attend Adams Camp, at some point I am asked questions about my brother Daniel.
How old is he?
Is he verbal?
What kind of school does he go to?
What did/does he struggle the most with?
This year something literally amazing happened. My lead therapist cut into what I was saying and asked me this:
“What was the hardest part for you?”
I was completely taken aback, I didn’t know how to respond. In all my life NO ONE has ever asked me how my brothers disability had impacted me. How unbelievable is that? Well sadly it’s the truth, often we siblings are almost forgotten and it feels that way too. It can be a very isolated upbringing, despite how wonderful our families are. It’s very challenging to connect with peers and find people who understand you.
For a long time, I was really confused about my feelings. I didn’t understand why I enjoyed having people’s attention, why I thirsted for their pity; moreover, I didn’t understand myself. It wasn’t until I met my friend Conner, whose brother is also autistic, that I finally felt like someone saw me. If it wasn’t for him, I might still be as lost as I was when we first met (age 13).
Currently, Conner and I are working on writing a book about our experiences. Attempting to give a voice to the forgotten in a way. There still is barely anything out there for us siblings and him and I are working to change that.
I can’t argue that there is a right way to go about child rearing a typical and special needs child. I think my parents did as good of a job as anyone ever could. However, we need something more then the nothing that we have been getting for decades.
We are here too.
Children without a childhood.
Kids who don’t know a World without special needs in it.
Surrounded by people and parents who could never truly understand what it is that we go through.
We are here. Don’t forget about us.