Learning How To Raise a Special Needs Child

13 Comments

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I learned how to run last year.

I lined up with 30 or so other people and listened to experts talk about running (only since I am deaf, I couldn’t hear them so I looked at shoes). Then I practiced. I ran around the track. I ran down paths. I ran down sidewalks, walkways, the beach and I kept on running.

It was excruciating in the beginning. Besides being in the first trimester of pregnancy, I was out of shape, overweight and my lungs had the full pleasure of having known at least a pack of cigarettes every day for twenty years!

It was really frickin’ hard and I’m not going to pretend it wasn’t.

I think having a child with a disability is similar to learning how to run.

We line up and listen to a whole lot of people tell us what we should do. Sometimes we hear them. Often we don’t. They are usually talking from their own experience anyway and only slivers of what they say will have real applicable value to ourselves.

Then we run: we try and try and try and try.

We advocate for our kid, we learn all this new disability language, we talk, blog, preach, bitch, cry and yell. We cry again, especially when the old lady at Safeway calls our little peach ’a mongoloid retard’.

We poke around in our own heads, every uncool, non-pc thing we ever did comes back to haunt us (did I really say I’m having a “special” day…? Did I laugh at the retard jokes on South Park? Did I think it hilarious when someone asked if Downieville California was the Down syndrome capital of the US ?).

We just want to cry and stop because this is NO FUN, dammit, and we don’t want to be the pc police and we don’t want to feel like calling  the audiologist on her shit because she was calling our precious peach “a Down’s kid” in a snide tone.

But no. Feel like it or not, we keep on at it, keep trying and trying and trying and we do it only because we love our kid, love all of our kids and if we don’t do this, who the hell is going to?

Then it gets easier.

We are stronger. We understand more. We have mastered the acronyms and have our friends in the field. We are not alone and we know it.

We can breathe while we race. We can pace ourselves.

We go to meetings and see new parents, new runners and we are overcome with feelings of gratitude that we are not there anymore, we know how to run now! But waves of memory may very wash over us, just remembering how it felt to feel the burn in our lungs while we struggled to pump our legs forward just one more freaking block.

The memory turns into reality as we come up against something new, untried, and we fall splat! on our face in a cesspool of prejudice and discrimination. The lady at the IEP meeting thinks my precious peach is stupid, rolls her eyes at me. I get to hear one more therapist tell me my kid is “doing great; Down’s kids are always delayed so don’t worry” because that’s what I want for my precious peach, for her to be judged, tested, assessed and held to some litmus of normalcy, right?

Oh fuck that. Fuck you and this can be so fucking hard.

We hit the ‘brick wall’ of running, want to come to a dead stop.

We can’t go any more. It’s too much. We’re sick of this shit.

But then, well, a deep breath comes up from within us. We get some sleep, wake up and take a swig of our coffee, wipe our mouth with the back of our hand, narrow our eyes, move forward and  somehow just by doing that, it gets easier again.

It really does.

Our breathing gets easier and easier and we find we can help others run too. We can encourage them. Love them. Tell them they are not alone. Remember that for them it’s hard and new and the words are still unfamiliar, the acronyms unknown and the raw feeling of being birthed into a community that was not their choice, fresh.

Then the day comes when someone says we are a poster child for acceptance, and we laugh.

We laugh long and hard, so hard and so long the tears slip out the corners of our eyes in silent tribute to the hours spent in self-purgatory over every uncool, hurtful thing we have ever uttered, thought about, laughed over.

None of us – not one -  is a poster child for acceptance and yet we all are.

Because we are all trying.

We care.

We love.

It’s not a race; it’s a relay. Of one generation of parents to the next.

We are in this together, learning as we go.

Because we love our kids.

Comments

  1. 3

    Brit says

    Thank you so much for posting this. I read it with tears in my eyes because my son was diagnosed with autism a few months ago and I am so lost. I don’t know how to do this and it is really freaking hard. Several people have told me that I am an amazing mom and am doing really well with him but they don’t know. They just don’t know. I have NO IDEA what I am doing. I am a MESS. They don’t see the mess and the pain and the tears and the literal blood because my son claws at my face and bites me. It is really comforting to know that someday I WILL figure this out and it will get at least a little easier.

    • 4

      Nicolette Melidones says

      Britt..I read this with tears rolling down my face. I will pray for you. You pray too. He hears. He never gives us more than we can handle. He must know you can handle hard things. God Bless you!

  2. 8

    Sherry DuPont says

    As a special needs mommy of 16 years this definitely touched me, I had my daughter when I was only 18 and every part of this was some point in our adventure together. My daughter is amazing and stronger then she will ever know, I am blessed to be her Mom and be taught so much by her.

  3. 11

    sarah b says

    This is beautifully written. I have 2 children with additional needs and it is how I feel day to day, today I am running fast! And it is my children that give me the strength and inspiration to design intervention for families like mine as part of my phd. Could I read this quote to the families I work with please? I think whatever stage of their journey they are at, it will be comforting to them x

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