Being A Special Needs Parent is Something We Learn To Do.

A Ridiculous Sentiment

“God only gives special children to special people” is likely the most hated sentiment for a parent of a kid with special needs. Usually, it’s expressed by a person who doesn’t have a clue what to say but wants to somehow be reassuring. Straight-up, that’s crap.

What your kids are like and what they will deal with in life is akin to a spin of the roulette table. Maybe your kid will be gifted, or kind, or creative, or an asshole. Maybe your kid will be born with or develop a disability. Does it mean you were meant to have a child with those challenges or that the child somehow deserves them?

Of course not, that’s ridiculous. And yet, the sentiment persists.

When my eldest wanted to do cartwheels, she would do these awful looking things on the lawn. I can’t even describe them, but to her credit, she kept doing them. One day, as I watched she caught my eye and said, “I suck. I can’t do cartwheels.” she was right: she sucked at them and couldn’t do them. But then, she wasn’t supposed to — she had never learned how to do a cartwheel.

Sure, she saw others doing them on the playground, in gymnastics, on t.v., but she had not gone up to someone and said, “hey, nice cartwheel. Can you tell me how you do it? Can you help me learn?” In response, I said, “Oh, did you expect to just know how to do it? You walk now, but did you walk when you first started walking? You learned to walk. No one is born knowing how to do a cartwheel. You’re getting the learning part down perfectly.” She did eventually master the cartwheel, in case you’re curious.


A Lesson At A Time

When our youngest daughter, Téa, was two, she used to scream like a pterodactyl. I suffered long term hearing loss in one ear as a result…but I digress. In the car one day, in response to my comment about how it was alright that she was screaming her head off in the car, our eldest daughter, Naya, who was 5 yrs old at the time said “she’s not special, she’s just a regular kid!” and it stunned me into silence. As I looked at her, I felt hundreds of responses come to mind and yet each time I tried to respond, the words stuck in my mouth, my mind going blank just as my lips opened and after a pause, I answered: “you’re right.”

Later the same day I sought Naya out to tell her that she was right in the rules needing to apply equally but explained that how they were applied was going to need to be different. I made sure to create the space for her to speak her mind without fearing my judgment or recrimination. Through her frustrated expression of feeling like the rules of not screaming like a maniac in the car weren’t being applied equally, I learned a little more about being a special needs parent.


And that’s how it happens.

An experience at a time, a lesson at a time, an insight at a time. There is no bonus pack of parental insight that accompanies the sack of shit that is a diagnosis we’re handed as parents. No happy-meal gift that gives us a key or a clue for what comes next, and this is true for both how we care for, educate, and raise a child with needs as much as it’s true for how we raise their siblings, manage our marriages and significant relationships, adjust to changing friendships and face the tsunami of work stress that we somehow need to be able to get through as well.

We don’t suddenly assimilate the grief and guilt; our own ideas about what disability is and all the stigma, misconceptions and misinformation that has shaped us as individuals until that point in life when everything changes.

I learned that the family becomes a special needs family. Siblings need different interactions and conversations. They learn very different lessons in life than the siblings of typical kids (mostly for the far better). Spouses, for that matter, do to…that part is harder, so let’s leave it for another conversation. Parents will have either just the child with a disability and stop there or they will have more than two kids — meaning there are older/younger siblings in the mix.

For the older kids, their life is never going to be what it was, both because they are no longer enjoying the spotlight of their parents’ attention but also because everything changes in crisis or with a diagnosis. For the younger kids, it may be confusing when they notice that they have lapsed an older sibling with a milestone. How we guide, counsel and discipline our kids will be something we learn to do differently and how we speak needs to change too, which is why I want to reassure you that you will learn how to raise a child with special needs. You are not expected to have mastery or even a clue as to what to do next, but you are expected to learn the lessons, work for the insight. That, I say as an experienced peer in this journey. You have to do the work of learning and applying what you learn.

If you don’t, you’re just a jerk and your kid(s) deserve better.

Being a special needs parent is something we learn to do. Likely, you’re not doing this wrong, or poorly (unless you fall into the category of the last sentence of the previous paragraph). You will learn to do better. You will advocate better. You will ask better and better questions. You will create schedules and routines and guidelines for your family that suit you best. All of these things will be fluid — and yes, that’s a kick in the gut if you are someone who relies on steady unwavering routines — but it’s also the fluidity that allows your life to flow that little bit better.

You will learn as a parent that you have the strength you need within you. You will learn where to find strength if you run out. You will find that you have the right thing to say to your children, even if what you say is only “I hear you, this is hard right now” or “Let me think on that, I don’t know”. You will seek out the ideas of many who have experiences, wisdom, and compassion to share. Mostly, the best pearls of wisdom come from other parents in the special needs community. You will learn to talk and listen to others who share similar life paths without judgment or shame, you’ll discover hacks for doing just about everything, and you’ll get very good at selecting from the things you learn what to keep and what to do away with.

You’re not going to cartwheel yourself into perfect parenthood, but then, you’re not supposed to know what to do, you’re supposed to learn it (even slow learners get there).


What’s with the Red Boots?

So, why boots?

Why red?

Why hunter boots?


Such an interesting visual, isn’t it?

When we first got the diagnoses that one of our kids had a challenging set of a neurological/neurogenetic disorders, well, these boots were absolutely made for walking because I couldn’t.

A few years ago I started wearing fire-engine red hunter wellies. They made me feel like I could handle things.

They did the walking for me when I felt that I couldn’t take. another. step.

For me, curiously, knowing exactly where that first step would lead is precisely what often trips me up. It’s as though seeing where I’m heading and what will be needed of me is what I am hesitant of. When you have a child whose everyday life requires indefatigable energy from you and whose medical needs are so vast that they require we take some of the hardest steps to take as a parent, what happens when you simply don’t want to take that step?

Maybe it’s like that for you too.

So how, when you feel you can’t take that first step, do you actually take it? How, when you feel you can’t face another moment or another task, or another decision do you generate that which you need to just take it?

I wore out those hunter boots taking plenty of first steps. So much so that a dear friend of mine actually contacted the Hunter Boots company and told them my story. A few weeks later, to my surprise, a brand new pair of Red Hunter Boots were delivered to my door complements of Hunter Boot Limited.

Those boots helped me walk, run and go through plenty of mud ever since.

Today, I do not need to wear the boots as much. Instead, I have been known to lend them to those who require a help in taking that next step.

So, that’s the story of our Red Hunter Boots and why they use to call me the redboot warrior.