Embracing Special Needs, In Others and In Yourself

“Special”, isn’t that something everyone wants to be? Then why is it we are so scared of “special needs”?

I am the oldest of a family of six children, two of whom we adopted and have Downs Syndrome. I am big sister to Ellen, in her roaring 30s, a ball of cheeky fire and overconfidence, and John, 20-something teddy bear, with the energy of a plant, sometimes, but super-powers of empathy like no one else I know.

I say WE adopted them… Officially my parents did, of course, but in reality, we all did: sisters, brothers, grand-parents, cousins — everybody! They make us all special: The good and the bad, the glorious and the awkward, the beautiful and the difficult – special.

I am not going to write about how special they are – somehow I feel I could not do it justice in a blog format; I would also hate to generalize as they are SO different from one another – but rather about what we are and have become with both of them in our lives.

We Are interesting.

That’s not me bragging. It’s a fact: I am made more interesting just because my family is special. People I meet have always had an immense interest in that aspect of my life. Call it curiosity, sometimes naïve admiration (for my parents, and by extension for me, I guess) or maybe misplaced pity for what they can only see as challenges and struggles – in which case, how wrong they are.

Do know how great it feels to have an interesting experience to share when asked without even trying? A confidence booster, I tell you. I never felt shame or embarrassment walking about with Ellen or John, ever. In fact, I have always felt incredibly proud to be their big sister. And yes even when Ellen is so body-confident she wears outrageously inappropriate outfits, or when John can’t answer a simple question someone is asking him and I have to answer for him like you would for a toddler.  It does not matter. They are special and interesting, and so am I, and so are you, so yes: proud!

We are patient.

Not in the moral sense of the way, not virtuously, but we’ve come to appreciate the time and effort it takes to acquire a skill or deliver a full sentence, enunciate a word, even. An example: it took big-sister-me a solid week to teach John about animal noises when he was about 5 years old. “How does the cow go? – Mooo”. First he had to understand that I was even asking a question. “How does the cow go?” When he did, his first tentative response was “Yes.” “No.” “How does the cow go?” Now he gets it: to that answer the correct answer is “Mooo”. Excellent, well done, really proud! Now, “How does the dog go?” – “Mooo!” We got there in the end. Again let me be very clear about something: at no point did I find this process frustrating, or humiliating. Never ever ever did I think this process a struggle. It’s enriching, it’s fascinating, it’s engaging, it’s eye-opening, it’s fun!

We are reasonable achievers.

Not over- not under, either. We don’t expect less of special people, we expect differently. I’ll elaborate. Because I’ve seen it in Ellen or John, I believe we identify (diagnose?) people’s quirks, fears, hurdles, struggles, etc more acutely perhaps than people with less experience. “When she grows up”, Ellen wants to do whatever jobs were featured in the latest movie she’s watched. In the nineties, she wanted to become “Joe’s carer”. That’s right like Charlize Theron is Mighty Joe Young. Lately, she has expressed the desire to become a “science engineer”. Can you guess she’d just watched Iron Man? Of course, she works in packaging, which is infinitely less glamorous, but also equally rewarding: her pride the first couple of times she got a paycheck!

Because I’ve seen that in her, I recognize this odd over-achieving fire in other people. I understand the value of dreaming of course, and in theory, I am all for this “reaching for the stars” or “You can be anything you want to be’’ and or other well-meaning clichés; but I also recognize how daunting it all is, and the importance of staying grounded, working at your pace, keeping your goals s.m.a.r.t.

So if it’s not being “special” we fear, is it the “needs” part, then? Is it scary to need more help, to need more time, to need more attention? If your answer to these questions is no, I believe you could be on your way to a healthy mental strength. Bravo! If, however, you are tempted to answer yes, to you I say: “well let’s be scared together, it will be special!”