EMBRACING “DIFFERENT”

Parenting is one wild ride. We joke about it. But you never really grasp how wild until you’re in the thick of it. The ups and downs. Emotions flipping like switches.

Throw disability into the mix – and you go from a classic wooden roller coaster to a triple loop spiral splash extravaganza.

It is different. We are lying to ourselves and others if we try to suggest otherwise.

Not the love part. The love is there regardless. It is all-consuming and unconditional.

I type with authority on this. I have 3 children. The oldest has Down syndrome. The younger siblings are “typically-developing/neuro-typical/fill in the least offensive way to describe it.” There is nothing typical about any of them; they are children which by definition makes them immature and irrational and wonderful.

As each year passes, their differences become more pronounced. Parenting my oldest often feels like a complicated puzzle; while the other two just go about their days, with predictable tantrums and overreactions and sporadic compliance.

Summer camp is prime example of this. The sign-up process for my younger children was fast and simple. For my oldest I started filling out paperwork and setting up supports months in advance. A few weeks before camp started, there was more paperwork to describe every little thing about him. When I pick them up, I hear nothing about the younger siblings. But for my oldest, there is a daily report of his behaviors, there are texts asking how to handle situations. There is a backpack full of all the extra stuff he needs. There is a lunch because he will not eat the lunch provided. There are meetings discussing whether we should even continue camp because parts of his day can be so difficult. All of this with an amazing team that knows my son, that adores him, that wants to do everything they can to make him successful at camp and in life.

It is different.

The differences are so ingrained in our lives that sometimes we forget how dramatically different our experience is compared to other families. This is our life, it’s no big deal in our day-to-day. We skip things that are hard. We adapt our homes with medical equipment, ramps, alarms, fences, locks, and sensory friendly everything so we have a safe space. We make it look easy because our everyday needs to be as easy as possible. Many of us make it seem so effortless that those around us have no idea how challenging it can be. Perhaps that’s why friends and family often expect us to go with the flow instead of considering how hard simple pleasures like a picnic or a weekend away can be.

It is different.

That’s why when I saw this Special Olympics ad I was touched and angered at the same time. It is worth a watch. But the short of it is, this is an “inspirational” advertisement showing twins growing up together. At the end they are both racing and then you see that one twin has Down syndrome. At the end it says “Born 4.36 seconds apart. It’s the only difference between us.”

No. They are different. And that is OK!

In the nearly 9 years since my oldest was born with Down syndrome I’ve toyed with so many different ways to describe him: differently abled, special needs, developmentally delayed, etc. I was (and still am to some degree) a stickler for person-first language. But I soon realized that there is no shame in saying that my son has a disability. It is part of his identity. It is a huge part of his life and, by default, anyone who is close to him. It impacts my life, my husband’s life, his siblings’ lives, even our dog.

It is freeing to say it. And it is OK for him to know it. It is part of his life experience. I recently interviewed disability rights advocate Dave Hingsburger. That podcast interview is lost in the technical difficulties graveyard, so I have to paraphrase here. He stressed how important disability pride is. Hingsburger works with adults and children who have intellectual disabilities and said that many of them are ashamed of themselves because such a huge part of who they are – their disability – was brushed under a rug. We whisper about it and pretend it doesn’t exist instead of acknowledging and celebrating it. My son knows some things are harder for him. His siblings see this too. We talk about it. They help him with everything from transitions to translating what he is saying for friends and extended family because his speech is so delayed. Telling him he is just like any other kid is like telling him his struggles are his fault. He is a kid. He is more alike than different. But he is different. Different is OK.

That Special Olympics ad totally contradicts itself and does a disservice to the disability pride movement. It does a disservice to every family and individual dealing with disability. If the only difference was 4.36 seconds, why do we even need the Special Olympics? Why are the brothers not competing in the same track meet?  Did they not meet developmental milestones at different ages? Were there no IEP meetings? No slew of doctor appointments? No speech therapy sessions? No fighting to be included? No issues with making friends? No tears over the r-word? No celebrating the small things that are actually HUGE? No better understanding of empathy? No expanded circle of friends because of disability?

It is different. Different is OK!

If we don’t acknowledge that it is different, nothing will change. If we don’t embrace differences how can we ever accept them?

Perhaps we should help the Special Olympics with a new tagline?

I’ll start with what I say to my own kids: “It’s OK to be different. Being just like everyone else is boring.”

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