special needs

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.

Parenting Expert

It’s been my experience that many people who consider themselves ‘parenting experts’ are those who have managed to raise one or or more perfectly normal little children.

It’s rare to hear a parent of a special needs child refer to themselves as an expert in anything.

We quickly learn that what works for ‘most kids’, rarely, if ever, works for ours.

And so we’re left slogging through trying to come up with something, anything that will work.

Because what works today, probably isn’t going to work tomorrow, or an hour from now.

I can’t even begin to communicate the level of frustration that brings.

And yet for the solutions we do find that we manage to make work we are look down on and called out by parenting experts and even other parents.

YES MY CHILD WEARS A BACKPACK LEASH SOMETIMES WHEN WE GO OUT.

According to one of the parenting experts on twitter, this means I’m treating my child like an animal.

*insert tears of frustration here*

Never mind the fact that Vista actually LIKES to wear her backpack.  She often brings it to me and asks to wear it around the house.

Never mind the fact it’s an easy, no fight, solution to walking around busy places with lots of people.

It was suggested I use a ring-sling as a harness.  That would be great for 5, 10, maybe even 15 minutes.  But for a 1 or 2 hour walk with a 45lb Amazon 3yr old? With a child who often can’t bare to hold hands because of the feel of it? A child to whom a gentle guiding hand could cause a complete meltdown because I touched her?  A child who will wonder off and not even consider where mom and dad are?  A child who would walk off with a stranger without a second thought?  Uhhh….yeah….

But I’m treating her like an animal because I put her backpack leash on her.

Well parenting experts, you come spend a day with me.

You go through the 2 – 3 hour battle of the meds in the morning.  These meds are not optional.  She must have them.  Not taking them could result in seizures that could kill her.

You take a child with sensory issues, epilepsy, and other brain issues, for a lovely walk in a crowded place with just a ring sling.  Don’t forget the behind-the-head headphones to help her block out the sounds.  And a package of wipes just in case she accidentally touches something and starts screaming about her fingers being dirty.

Then come home and start battle #2 of the meds.

Now it’s time to fix dinner.  Don’t forget the bowl you serve it in cannot be warm or it’s considered hot and no food will be eaten.

Oh, no, you don’t get to eat dinner too.  No, this is where you sit and help the child with their spoon or fork, because at 3 years old they still aren’t able to manage it.

Now it’s time for battle #3 of the meds.

Tired yet?

Oh well, you still have to give the kid a bath and put her to bed.   Don’t forget that no water can get anywhere near the face or it’ll be an epic meltdown.  Oh, and brushing her teeth will require a specific tooth brush (her choice, it changes daily.  But don’t use the wrong one or…yeah, epic melt down).  Oh, and if you pick the wrong toothpaste?  Then you’ve just extended bedtime by half an hour while you calm her down.

Yeah, good luck with that.

If you make it through the day without ending up in tears yourself, then maybe I’ll consider your advice.

But only maybe.

Preschool, School, Homeschool… *headdesk*

150x106 Preschool, School, Homeschool... *headdesk*
Image by Getty Images via @daylife

I’m pretty sure Vista’s therapists think I’m a complete flake.

We’re having to make the dreaded preschool decision for this fall.

And when you have a special needs kid, it’s not as easy as just picking one and going.

First there’s finding a place that will take ‘early entry’ (take them when they’re three instead of four).

Then we have to find a place that takes kids who aren’t potty trained yet. And that little criteria pretty much eliminates every preschool in our area unless Vista has an aide. Which at this point isn’t a given.

So at this point we’ve put her name in at both school boards (public and catholic) in the off chance she does get an aide.

But now I’m sort of backpedaling. I’m not convinced that putting her in preschool this fall is the right thing for her after all. She’s going strictly for the socialization aspect, but are there better arenas for that?

This past week of seizures has really made me reconsider. How are other kids going to react to a child who acts one way for a month then has a few seizures and has a complete personality change? Aide or not, other kids don’t react well to that sort of lashing out.

And Vista’s birthday party on the weekend was another event that made me rethink this whole preschool decision.

There were about 10 kids there (ranging in age from 2 – 10). These were good kids. Well behaved kids. Kids who weren’t wild and screaming and acting like idiots. Kids with LOTS of parental supervision. Ten kids is a VERY small preschool class. Only one school, in a small town south of us offers a class of that size.

And Vista lasted one hour with 10 kids before the meltdowns started. Before the pouting defiance started. Before she was miserable and overwhelmed. To the point where we didn’t open presents at the party because it would have been too much for her.
To the point where she didn’t even eat a piece of the special no-cheese pizza we ordered for her or her birthday cupcake because she was so stressed.

She latched on to her BFF, Gracie, as soon as she arrived and wouldn’t let her out of her sight. But Gracie isn’t going to preschool next year. So who would be Vista’s anchor in the sea of toddler chaos?

As much as Vista needs the socialization and to learn how other kids her age play, how much is she really going to get out of it if she’s completely overwhelmed with the situation?

So maybe we’ll keep her at home for another year and let her be a kid for a bit longer.

And maybe we’ll throw schooling right out the window.

More and more people out here are moving to homeschooling, sick of the bullying that goes on, sick of the substandard education that’s provided as a result of over-worked and under-paid teachers.

And Vista with her follower copy-cat mentality, poor coordination, but bright mind would be a prime target for bullies. I know. I was too. It ruined my early school years. I don’t want my child going through that.

What a choice. Schooling, socialization, bullying, questionable education vs homeschooling, butting heads, and losing my sanity.

Which would you choose?

 Preschool, School, Homeschool... *headdesk*

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