I say that as news stories abound everywhere on social media like Facebook, Instagram and Twitter with pictures galore of children and adults with Down syndrome, autism or other disabilities participating in athletics like cheerleading, basketball, or wrestling on school teams, graduating from high school with their diploma in hand, modeling for Target, Nordstrom and Toy 'R Us, getting a regular old job or even being a bat boy for the Cincinnati Reds. Videos of dancers or athletes with Down syndrome blowing people's ever loving minds by their abilities. Marriages, driver's licenses and college bound adults with disabilities are rising. How about the boy with autism who is a physics genius and is working on his own theory of relativity? All amazing and all awe inspiring individuals. We all ooooh, aaaah, smile and even shed a few happy tears watching the videos, hearing the stories and seeing the pictures. Especially those of us who have a child with the same disability enjoy it, all the while, probably some of us secretly or blatantly hoping for the same or even higher accomplishments and recognitions for our child particularly those parents who are very new to the game and don't really know the full extent of how the disability will affect their child.
Now don't get me wrong, I think it's wonderful they are all able to participate in something they love and excel at it and I really do enjoy seeing their happy faces beaming with pride of what they've achieved with a lot of hard work. There really are so many individuals exceeding expectations, goals and misconceived mindsets. It is a sight to behold and of course they should celebrate and share about their accomplishments, but I think we as a society desire and put up on a pedestal per se the "higher functioning" child.
I now struggle with the words higher and lower functioning. I myself have used them throughout this blog for lack of better words to convey my thoughts and meaning when describing my children. When I used higher functioning before Lily, usually about the twins, I was referring to their ability to speak, excel in school, socialness (made up word?) and their intelligence. I see now that my definition was a little skewed because I was comparing them to other individuals on the autism spectrum that were nothing like my two (it's not called a spectrum for nothing). I got caught up in the relief I felt that they were higher functioning then many of their peers and appeared to have a "higher" potential to succeed and perhaps appear more "normal" to the world. Normal was my hope....my dream in the early years. Let's try to fix them as if they were broken. As if we could glue their broken puzzling minds and bodies back together.
I struggled with this in particular this summer when I went to the NDSS convention in Indy. Everywhere you turned there were presentations and praises of adults with Down syndrome who'd exceeded all expectations and WOWED the Down syndrome community. I felt a little torn because on one hand I could see this kind of future for Dasha, but on the other hand Lily wasn't like these individuals and never will be. This was a convention all about Down syndrome, yet I almost felt like Lily with her three diagnoses didn't quite fit the convention overall theme.
In my opinion, there shouldn't be such a strong focus on someone's level of function, how verbal they are or what life skills they've mastered when trying to obtain acceptance, raise awareness and gain the use of inclusive practices. I often wonder if other families with children with a disability or multiple disabilities struggling to meet milestones, gain life skills or perhaps already reached their fullest potential early on feel like they are in the shadows.....ignored or undervalued when compared to peers with the same diagnosis who are celebrated for their successes in their life.
I've felt that way a bit with Lily with her having Down syndrome, autism and most recently finding out she has Ehler's Danlos Syndrome. She's not fully potty trained and frankly she really doesn't care to be. She's not overly social and often wishes everyone would leave her alone with her best friend the iPad. She dislikes anything new or any change from her daily schedule. She has major anxiety. She's had a lot of health issues and major sensory processing issues. She can't run, but she sure can lollygag like a pro on the couch watching Barney. She can't feed herself very well, has a hard time holding utensils and I often spoon feed her a specially concocted baby type oatmeal cereal with supplements and protein power. She'd prefer not to dress herself and she sure as heck hates to put on shoes. She can read well though and she can label pretty much every single animal picture she sees and usually does a pretty good rendition of what each animals sounds like. My favorites are the rhino and eagle. She's also a whiz on the iPad. She's incredibly sweet, kind and a love bug. The problem is to an onlooker, she is "low functioning" and many people just aren't comfortable with that.
People gravitate towards Dasha because she responds to them. She is very social and engaging. She loves people and goes out of her way to gain their attention. She can run fast, throw a ball, kick a ball and is very athletic overall. She is potty trained. She can feed herself quite well. She also dresses herself, brushes her hair, ties her shoes and wants to participate with her peers everyday. She loves to be included and hates to be left out. Overall, she'd be the poster child for the higher functioning child with Down syndrome because she is more like a typical child than not, but looks can be deceiving. School is very hard for her and her speech can be unintelligible. It's interesting how people allow for that though. They prefer that to be the norm for someone with Down syndrome.
My wish...No, my new dream these days is for everyone to value the kids like Lily who have multiple diagnoses affecting them, or the child with CP in the wheelchair who will never walk, the boy with autism rapidly rocking in church making loud vocalizations, but is nonverbal or the little girl in the wheelchair waving and flapping while screeching happily with a big smile on her face oblivious to anyone around her as much as the ones who can walk, talk, dance in recitals, make a touchdown, shoot a winning 3 point shot, receive their High School diploma or graduate from College by the time they are 16. I'd love to see a child with Treacher Collins or a cleft palate (repaired or not) grace the pages of Nordstrom's next catalog.
If you are promoting acceptance of disabilities, then please embrace and include everyone...the lower functioning, the mid functioning and of course the high functioning. They all have a story and need to be celebrated because in the end all life is precious no matter their functioning level.