The Spectrum Of Down Syndrome

Every single day I hear references of someone being on the spectrum.  Obviously being on the spectrum refers to being on the autism spectrum, but for a while now I've come to believe it might behoove the Down syndrome world to have a reclassification of Down syndrome into a Down syndrome spectrum.  

Per Wikipedia:  A spectrum is a condition that is not limited to a specific set of values but can vary infinitely within a continuum.

There are so many variants of how Down syndrome manifests itself in a person.  Cognitive and physical abilities can be affected in differing degrees based on many factors.  One significant factor is the many associated health conditions that individuals with Down syndrome have an increased risk of being born with or developing at some point in their lives.  Some will have significant health concerns requiring surgery and/or other treatments, while others may only have minor issues common to Down syndrome needing little intervention.  Achieving certain life skills may come easier for some and unattainable to others just by the way their particular bodies reacted to their extra chromosome.  All of the aforementioned factors can then be further compounded by additional diagnoses such as autism, sensory processing disorders and apraxia to name a few.  These extra diagnoses usually bring on additional, often significant challenges which impact how the child or adult speaks, behaves, socializes and learns even more.  

I've read many times how other parents, who have a child diagnosed with a dual diagnosis of Down syndrome and autism, feel like they don't fit in anymore at Down syndrome events, meetings or get togethers.  They believe there is too big of a difference between their child to other children who just have Down syndrome.  Things like bigger delays, complicated behaviors, lowered potential and intermittent or nonexistent stereotypical Down syndrome personality traits with their dual diagnosed children, who are obsessing on their iPads, stimming with a musical light up toy or flipping a washcloth in front of their face, on top of the antisocial or detached personality that can be apparent with autism. 

  

We recently attended the grand opening of a GiGi's Playhouse near us and lasted all of about 15 minutes because the noise level and the crowd were so overwhelming to my daughter, Lily, who has both Down syndrome and autism.  Call me paranoid, but I also sometimes sense a hint of fear from parents holding their cute chromosomally enhanced babies when their gaze lands on Lily.  Lily, who on this particular day, is barely able to walk because she's so busy trying to cover her ears, dodge bodies, avert her eyes and muttering nonsense while deeply cringing from the chaos the grand opening party had in full force.  I'm not naive...autism can terrify people.

Giving their daddy some love

I'm on both sides of the coin.  My other daughter, Dasha, just has Down syndrome (along with a few minor health issues that are common with Down syndrome) and then there's Lily with her numerous diagnoses stacked up to complicate all aspects of her life.  Down syndrome and autism being the main components.  I push hard for inclusion with Dasha, but often scale back with Lily.  Inclusion for Dasha means multiple opportunities to learn from her typical peers like appropriate behaviors and social interaction.  Inclusion for Lily means carefully picking and choosing opportunities that work with Lily's more unique reaction to stressors.  Changes in her regularly scheduled program or even something completely new can send her over the edge. I'm also constantly questioning what's an appropriate time on her iPad or how long should I let her stim?  It's not so cut and dried with these kids dealing with a dual diagnosis.  I've even read how some families feel more connected with families who do have a child(ren) with autism than families with a child with Down syndrome. 


I find myself clashing with fitting into the Down syndrome world as the girls get older.  Dasha seamlessly fits the mold and I'm often saying she could be the poster child of someone with Down syndrome, but Lily doesn't.  More therapy isn't going to miraculously make her more "Downsy" and less "autistic".  A common misperception most people have about my two girls is their cognitive ability.  The overall disparity between the two girls does not mean lower intelligence for Lily even though first impressions may lead someone to believe that to be true, when in reality they both have varying strengths and deficits with school and academics.

My suggestion would be for the medical gurus to adopt the word spectrum when writing or speaking about Down syndrome or perhaps even a less fancy word like umbrella where contrasting individuals could fall somewhere underneath.  We are a multi-facceted community with some facing scary medical procedures from serious health issues like open heart surgery, others are facing excruciating cancer treatments, and still more are being told their child has an additional diagnosis (or multiple diagnoses) to add on to the original one of Down syndrome.  Lily has five:  Down syndrome, congenital heart defect (repaired AV-canal), autism, sensory processing disorder and Ehlers Danlos syndrome.  I'm considering adding a sixth one to the mix with apraxia of speech the more I learn about it with her younger brother, Leo, being recently diagnosed because she definitely has a few of those traits too.




I feel I had an advantage though than most families dealing with the blow of being told their child has autism usually a few years (or even a decade) after receiving the initial Down syndrome diagnosis.  I'd already been immersed in all things autism for years with my three boys, who are also on the autism spectrum, and so it was almost a relief to finally admit and accept Lily had autism. Funny thing was it took our daughter, Dasha coming home for me to see the differences between them. Adopting a child with Down syndrome who lived in an orphanage for the first 5 1/2 years of her life, one of our biggest concerns and fears was possible institutional effects.  Institutional effects (abuse, neglect, little to no affection) or orphanage life for a child often can mirror autism traits. Institutional autism is what most people call it.  I remember reading books, blogs and emails about institutional autism symptoms before and after Dasha came home and slowly came to the realization that Lily had many of them, yet Dasha, who was adopted, did not.  So after Dasha had been home a couple of years, I started embracing the idea of Down syndrome coexisting with autism in Lily.  They'd become intertwined and I believe make her the unique person she is and was meant to be.  




So you will now hear me say when discussing my daughters' diagnoses, I have two girls with Down syndrome and they are on completely opposites ends of the spectrum of Down syndrome.  It's okay that they are nothing alike and it's time to recognize the diversity in the Down syndrome population because we can't just champion and promote the ones who are more verbal, more social, more successful or more like you than different.  Individuals with Down syndrome make up an amazingly colorful spectrum and they're all equally beautiful inside and out.

 Lily

Dasha

If I seem to be getting up on my soapbox a lot lately, it's because these kids of mine inspire me and in turn, I want to change the way the world views each and every one of them.