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And It’s Time For Another Reality Check

I was on my friend @Psychmama’s Facebook page the other day and saw that someone had commented on her sharing of the What I Would Tell You post (if you haven’t read it, you really should. Well worth it).

This is the long comment I saw.  And of course, I couldn’t help but respond, because, well… I’m me.  (click to see it full size)

britta 217x750 And Its Time For Another Reality Check

Britta,
Caring and ‘getting it’ are two vastly different things.

You can SYMPATHIZE but you cannot EMPATHIZE if you have never been a special needs parent. And there is a deep and wide chasm between sympathy and empathy in the special needs world.

That would be like me telling a doctor that I care so I should be allowed to do surgeries. I guarantee that doctor would be taken aback and insulted.

See… the big difference between special needs parents and someone who hasn’t walked in our shoes is that we see our kids as normal. They are normal to us. They are our children and we live every day with their disability. That is OUR normal. When people come up and try to do the ‘I’m pretending I’m treating your kid like they’re normal’, it pisses us off. Because the first thing you noticed was not their smile or how much they love to laugh. It was that they can’t walk/talk/eat/fill-in-the-disability. So we slap on the fake smile until we can escape and shake our heads about the people who think they understand, but really don’t.

We don’t want pity for our children. We want our children to be accepted for exactly who and what they are; to be treated like any other child. Not to be marked by their challenges. Unfortunately, yes, we are a ways off, as a society, from being there.

And the old ‘God will never give you more than you can handle’ IS bullshit. Because there are days when we are totally overwhelmed with it all. After your child hasn’t slept for weeks, or months, or in many cases, YEARS, you wake up and think ‘I cannot do this today. I just can’t’. And you dream of normalcy. And you have yourself a good cry in the shower before you go on with your day. Because being a special needs parent isn’t easy.

I won’t lie. There are the good parts. I’ve met lots of wonderful people because my daughter is special needs. But those friendships are not like normal friendships. Dawn and I have spent the last month supporting one of our friends who’s daughter has been close to death in the hospital. Every day we are there to listen, to research, to offer advice, and just to be there while she cries. And then we go back to our lives and cry ourselves because that could be our child in the hospital and part of us is so glad it’s not. But we understand on a level that most people can’t. And that is why, in crisis, we turn to parents who have been through what we’ve been through. Parents who can speak in medical terminology and acronyms, for that is the secret language of special needs.

And being friends with special needs parents brings other challenges. If anyone has so much as a sniffle, playdates are cancelled. They’re also cancelled because their kids or mine are feeling too overwhelmed/tired/anxious/overloaded/overstimulated on that particular day. Parents of normal kids get frustrated when we cancel last minute because of these things. Special needs parents just say ‘Oh, no worries. I totally understand,’ and you know they do, because the next time it will be their turn to cancel.

Special needs kids are wonderful and unique and challenging. As much as I love my daughter, I would never wish a special needs child on anyone. Not because I think they are ‘less than’, but because there is so much that goes on day-to-day that cannot be shown on some TV show. I’m talking about the doctors appointments, meeting with therapists, documenting of medicines, organizing of supports, purchasing of special support equipment, dosing meds, special exercises and the list goes on and on. So much of our days are consumed living with special needs rather than living with a child.

Therapists don’t parent our children. They are not nannies. They give us the resources to help our children reach their milestones. But much of the actual work, still falls to us, the parents. Where you would sit and play with your child, we consider what developmental area we’d like to work on and pick toys or activities appropriate to that.

When you leave the house, what’s the first thing you pack? Diapers? Oh your child is potty trained? Yeah, my almost 5yr old isn’t. Special needs, you know. How about meds? Oh you don’t need to carry a med case? Ours goes everywhere with us. Inhalers, spacer, anticonvulsant, oral steroids, fever meds, allergy meds, pulse-ox, stethoscope, thermometer, and of course My Little Pony bandaids…can’t forget those for when her balance goes and she does a faceplant in the gravel. And then we have to make sure we’re home in time to give her the evening doses of meds (unless we make a special point to pack those and bring those with us). This is all part of normal life for us. Not the glamorized medical docu-drama you see on TV.

You seem to have romanticized being a special needs parent. For that reason I hope you never are, because your world would come crashing down. Being a special needs parent is being vomited on every day (sometimes several times a day) for years. Being a special need parent is wiping feces off walls from kids who should be old enough to know better. Being a special need parent is cleaning up tube feeds that have spilled the entire contents of the feed bag over the floor. That is being a special needs parent. It’s the furthest thing from glamorous.

Is it rewarding, though? Yes, in the way that parenting any child is rewarding. You celebrate the milestones and the successes. They just don’t always come where and when you expect them.

But when you come up to a special needs parent and tell them you would love to have a special needs child, don’t be surprised if the reaction is less than favorable.

A New Freedom

The past couple weeks have flown by.  We’ve been immersed in a flurry of assessments and activities for Vista.

She started preschool this week, with her aide, Lynda.  It went better than everyone thought it would.  Lynda has been a huge help in managing her tantrums and heading them off before they begin.  She’s been able to very quickly pick up Vista’s cues that she’s getting overwhelmed.

And for the first time, yesterday, Vista was able to tell another kid at her therapy group “No. Stop.  I’m playing with that toy,” rather than dissolving into an instant puddle of hysterics. It’s something so small, but such a huge thing in V’s world for her to be able to do that.

I’ve also discovered that when you’re trying to dress a kicking, screaming, squirming, crying child who is refusing to leave an activity, it’s MUCH easier with another set of hands.

Having Vista’s aide has been such a huge stress release, I can’t even begin to describe it. Even the ability to go out and do things with V in the community has been huge.  It’s a freedom we’ve never experienced before.

We also received Vista’s IPP (Individual Program Plan) today.  This is a document where each of her therapists lay out the specific, measurable goals for Vista over the next few months and how we’re going to achieve them.  It also gives her aide a framework of things to be working on with Vista in the classroom and out in the community.

In addition to her aide, V will be working with a physical therapist, an occupational therapist,  a behavior consultant, and a learning support teacher.  They’re also going to be adding a speech therapist into that mix, as well.

It means our days are booked solid.

But?

It’s so worth it.  We’re already starting to see small improvements in her behavior.

The fact that I’m not so stressed and butting heads with her all the time, also means the quality of my relationship with my daughter has improved dramatically.

And that makes us both happy.

Making A Big World A Little Smaller

This morning I tweeted out the words  “I love how Twitter takes a great big world and makes it so much smaller.”

Some of you knew what I was talking about.  But for those who don’t…

Last night my BlogHer roomie, Karen (agentninenty9), lost her mom.  It was expected, as much as these things ever can be, but so much more sudden than they thought.  They were told they would have several more months with her mom, after she was diagnosed with cancer.  It turned out to be weeks.

I DM’d a few people on Twitter, who I knew talked to Karen, and started a fund so we can get her something.  Right now we’re looking at a gift basket, some flowers, and a donation to the Cancer Society in Karen’s name.

This is all going to be delivered to Karen by acraftymom‘s parents, who just happen to live in the same town as Karen and actually know her.  See what I mean by Twitter making a big world much smaller?  Amazing.

The reason for this post is I wanted to reach out to others who know Karen and might want to contribute.  I didn’t want to tweet it out, on the chance Karen saw it (which is why I’m not linking to her name or website in this post).  But I’m banking on the fact that she’s not going to be reading blogs right now.

So…  I know it’s right after Christmas and money is tight, but if you would like to and are able to contribute to this, you can click on the paypal button below (this goes to my paypal account and I will send those who donate an email with exactly what was sent to Karen, once the money is in.  Anything above and beyond the cost of a gift basket and flowers will be donated to the Cancer Society in Karen’s name).  People always ask ‘how much should I donate?’, ‘what’s everyone else donating?’.  I’ve had everything from $5 to $50.  So base it on what you personally can afford.  And if you can’t afford to contribute, that’s OK.  Send Karen a tweet of encouragement instead.  She really needs those right now.

If you have any questions, you know where to find me.

Thanks to all.




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