Down Syndrome Awareness -- "Back to School" Grass Roots Advocacy for All People with Down Syndrome - Part I

Who Are Those Masked Men and How Did They Get Here, you ask? (Bear with me... This is the touchy, feely introduction that precedes the hardcore "How To" section of this post-series on how you can think globally and act locally by implementing "Back to School" Grass Roots Advocacy Efforts on behalf of people with Down syndrome in your own neck of the woods.)

Remember that old commercial, “Don’t hate me because I’m beautiful!”? No, I’m not beautiful, not by a long shot… but my guys are! They’re not only beautiful but they’re also amazing in what they’ve achieved! And, I want everyone to meet them… to see what’s possible.

True, I have been more than doubly blessed with Brian and Michael. First, there are two of them. And, while the midwife’s “there’s the other baby” discovery nearly knocked me off the examining table at 8 weeks gestation, I could not be more pleased -- if not just as dumbfounded after 4 years -- that I have twins. IDENTICAL twins! Blows my mind! Still! And, for those of us living in what some call Holland but I like to refer to as My EDEN, yes, my guys have been blessed with an extra 21st chromosome. And yes again, BOTH of them have Down syndrome… they are genetically identical. Honestly, I wouldn’t have it any other way! Because, as similar to “typical” 4-year-olds as they are, sadly, many in our society will only see and draw attention to their differences. They are identical twins AND they have Down syndrome. Statistically, they are nearly a 1 in a million occurrence. But, as different as they may seem to others, they will always seem more the same to each other. That’s a comfort to me. To know that they will always have each other… without judgment.

When I was a child, I was a desperate tom boy! (ok, I still am, LOL!) But, so was my friend, Lori, who I hung around with from 4th grade pretty much through college (with a brief 2-year sabbatical when she decided to experiment with marijuana and I chose not to). While all the other little girls were flitting around in their dresses being girly girls, we were killy fishing and climbing trees. We had each other and it didn’t matter what the other kids did or said. Not to us! My guys are like that... lucky enough to have such camaraderie and sameness built in. Like the TWO musketeers. All for one and one for all!

Acceptance of their diagnoses of Down syndrome came easily to my husband and me. Honestly, I don’t know why but the fact that they have DS has never stunned us, saddened us or slowed us down… (With maybe the exception of the first 15 seconds after they told us they suspected and were testing for Down syndrome…. when my husband looked as though he’d been punched in the gut and wanted to go hide in a closet somewhere and scream, “NOOOOOO!” He snapped out of it just as quickly saying he saw 2 babies who needed loving, diaping and feeding. But, that’s another story for another time!) The identical twin thing truly knocked us for a loop… Still does! But, not the Down syndrome. Seems we both felt, after the fact (with a little foreshadowing 10 years ago that we didn’t recognize until that very moment), that we were always headed in this direction, to this spot and we were totally meant to be right here where we are. I really can’t explain it better than that.

The boys were born via c-section 8 weeks premature... their choice! Nearly 5 lbs each and breathing on their own (I'm lucky they didn't do those last 8 growth-weeks). Healthy. No heart problems. No feeding problems (latched on and nursed immediately). After 2- and 6-week stays in the Mercy Medical Center NICU to ensure Brian’s and Michael’s internal temperature gauges were operating optimally, and, for Michael, to come through a near fatal tangle with NEC (triggered by a hospital-borne C-dificil infection) with flying colors and literally NO complications -- they came home to take their rightful places in our family. At -4-days-old we began Early Intervention services at home. Anyone with a child with DS knows this drill… starting with evaluations that result in ever-increasing levels of in-home services in OT, PT, speech and special education along with the assigned case worker and family social worker. Being in our home as often as they were, the therapists quickly became an integral part of our family life. They were there at wake up time, through all 3 meals, at naptime and before bedtime... They were ever present! They’ve certainly seen me at my worst – still in pjs, unshowered, hair unkempt and bare faced (read: no make up) -- far more often than at my best. (Heck, I’m not even sure what that looks like anymore!) And, thankfully I’ve managed to never become the subject of one of their stories about accidentally catching a parent in the buff because they were unaware a therapist was afoot. (Honestly, I’m not sure how something like that could happen but…) With two children with special needs and the revolving door aptly (if not literally) installed in our home, we had countless numbers of professionals in and out all day long, nearly every day of the week. Conversations ranged from issues specific to my children to generalized information about OT, PT, speech, special education and Down syndrome. Every so often, someone would come out with a phrase or statement about Down syndrome that I felt indicated a lack of understanding about the boys’ diagnoses and/or their abilities, or potential to achieve a particular task or milestone... Or worse, a comment that I found outright insulting. Being me, I quickly called attention to and corrected these faux pas both to keep my family from suffering the mal effects of hearing and maybe believing such slanted/prejudiced terms or concepts in reference to our beautiful boys as much as to educate the mis-speaker to a more enlightened and accurate way of thinking.

It was our Family Social Worker that first recognized this, my evolving mission, while we chatted during one of our then-weekly sessions. She questioned why I chose to continue to work with a person who obviously had limiting beliefs about my children. I explained that the statements were NOT about MY children but rather they were the generalized, misinformed thoughts of a -- not uneducated but rather -- wrongly educated person regarding the affects of Down syndrome on some all-encompassing, representative individual. I explained that, for my family, a good therapist -- someone who worked well with the boys, who the boys liked and who, most importantly, got results – was a rare find! I explained that such a person misspeaking in MY home was an opportunity for me to re-educate them about the affects of DS on the individuals that are my sons… which is different from the affects it has on every other individual with Down syndrome. An opportunity to explain the widely varying impact DS MAY have on every individual born with that extra 21st chromosomal material. To explain about the fallibility of IQ testing. About what is possible versus what the stereotypes and generalizations would have me believe will never happen… Things I not only believe but I KNOW will happen here in my home, for my boys! Such misspeaking in someone else’s home where, perhaps, the mother might not be as iron-willed or forward as I am, could do GREAT damage to that other family’s beliefs about what their child can achieve, ultimately negatively affecting that child’s development! I certainly didn’t want that to happen! And, I felt strongly that the comments were not malicious but based on ignorance – as most of the stupid comments I hear with regards to Down syndrome are! As Brian’s and Michael’s mother, I saw this as just the beginning of a lifelong re-education of the public… just a part of my job as I worked to carve out peaceful paths and foster independent lives for my beautiful children who also happen to have Down syndrome.

As an adjunct Psychology professor at Nassau Community College, one of many local colleges in our area, our family social worker was addressing many of these very issues and dispelling inappropriate myths about Down syndrome with her students. As such, she suggested that perhaps I’d like to bring the boys and my old soul in to talk with her class about our experience, our reality. To introduce them to Brian and Michael and to re-educate them on what is possible… And, so began my “Back to School” Grass Roots Advocacy efforts on behalf of all INDIVIDUALS with Down syndrome.

Please watch for more detailed information on how I continue to grow my grass roots advocacy efforts by going “Back to School” to the local colleges to meet and speak with students who are planning careers working with children like mine, children with Down syndrome, as well as children with other special needs. Students who hold the future of so many people with special needs in their hands… through their actions, words and beliefs. Actions, words and beliefs I hope to influence. And, a future we can all influence.