Friday, July 26, 2013

Parenting a child with a disability.

Or at least my child with a disability (they're all different). (And, hey, fun fact, little miss has anxiety, SPD and OCD, which technically means she has 'special needs', too, although luckily they seem to flare less often... for now).

What's it like?

A lot of people say, "I could never do what you do." "I don't know how you do it."

But, hey, what parent could have imagined waking up at all those ungodly hours with a newborn, right? And the insane bodily fluid messes... no one expected that! The tantrums, the injuries, the rough times... well, no parent *really* knows what they're signing up for. Rewarding? Absolutely, beyond your wildest dreams. Difficult? You. Cannot. Imagine.

That's parenting, right?

Parenting a child with a disability isn't different in the parenting aspect.

Just like you, I love my baby. I would do anything to help calm him, keep him from losing it, have a good day. It just happens more often for me, and probably more dramatically.

Beyond the basics is where it gets... complicated. 

I have to know a lot about... a lot. Occupational therapy. Speech therapy. Behavioral therapy. Development. All the appropriate levels. His level. What we need to work on, so I can try to sneak in 'work' at home (because doing work after school/work is SO. FUN. Yes?!).

I have to know the right thing to say to calm him down (Batman 2, 2 player is a favorite. Along with 'sure, buddy, let's go work on that right now'). I have to respond, because in three seconds is far too long and he's already upset and there goes 15 or more minutes of my day and my daughter can't handle noise and has now locked herself in her room while he's screaming about wanting to die and hating me. Because a single 1" squinkie is misplaced. Or I didn't respond fast enough. Awesome?

I have to know what motivates him, what will help him want to work at school, at home, anywhere. So I can use that as 'positive reinforcement' so that he will eventually be able to be self-motivated to behave in those places without those external motivators.

It's about knowing limitations, and occasionally being a crazy person and forgetting them just to see if your kiddo will do something spectacular (it happens!!!) and blow your mind, like getting in the pool up to their neck or actually engaging properly in a social situation. Forgetting your own fears, and letting go, because your child surprises you more than you can imagine.

It's about hearing what your child CAN'T do, and seeing what they CAN. It's about blowing expectations out of water, and realizing what a miracle life is, and what a miracle your child is.

It's about making decisions for a child who is not yet old enough to understand the words 'diploma', 'college', 'job', or even 'disability'. Life-changing decisions, because the educational system throws that crap at you when your child is in third grade. Because apparently that's a good time to determined whether your child should be on 'general curriculum' and get a diploma, or 'adapted curriculum', and well.. NOT.

It's about trying to hide the tears when things go great. When you are so proud that it feels like your heart will explode and your eyes are burning because you don't want him to see you cry, because he thinks crying = sad, and you are so far from sad it's ridiculous. It's sneaking in to see your baby, who you were so worried about everyone being mean to him, being led by a group of kiddos, all giggling with him and wanting to do whatever to make him happy. It's about being so choked up from the kindness of others - children, adults, strangers, teachers, professionals - that you seriously don't know when the next breath will come.

You go to bed crying many nights. Some from happiness, some from confusion, some from sadness... and waking up the next day with a hope and a prayer that it will be a good one.

You learn to trust certain people. To ignore certain people. To forget what anyone thinks when you are having a good time, or a bad time, and just focus on your family. Your child. Tantrums become less embarrassing, and you learn to care less about what anyone says about your parenting. Because, really, no one knows. They couldn't. You learn to forgive them (at least I do) for their ignorance, 'by the grace of God' they don't/can't understand, and let it go.

You learn a happy kid is more important than what you think entails a successful childhood. I never, ever, want to hear my son say he wants to kill himself again. A child who is suicidal is the worst possible scenario. If your child is happy, you can work from there. That's all that matters.

I learned a lot of my own struggles and weaknesses, and became a better person. I think our whole family has a little of his struggles in us. We grew. We learned to stick together.

What I do is simple, but not easy. I just love my kid. That's all. He just needs a little more help, and more patience than some.

Nothing worth anything comes easy, though.

And let me tell you, this kid (well, both my 'different' kids!) is going to be spectacular. Because loving them, and parenting them is simple... but never easy.

Reminds me of this video. Love. It. And it is so true... every one of them. 

I especially like, "Enjoy him, you're both STRONG!" He certainly inherited his stubborn nature from me.

But when I'm having a bad day, I come back to this. Beautiful. Seriously. Watch it.

Tuesday, July 16, 2013


I've been terrible about posting...

Little Miss survived the tonsillectomy. We found out she's allergic to hydrocodone (so is mommy - VERY glad they heeded my warning on the morphine that almost killed me!). Other than that, her recovery was amazing. She had no pain until 7 days out, when the scabs 'slough' (ick). But after that one day, perfection. She was ecstatic to get the all-clear for popcorn :) Turns out, kids CAN get sick of ice cream!

We did get lots of snuggles and mommy-daughter time, so, as it turns out, it was good for us both ;) . Little man learned that he wasn't the end-all-be-all all the time, and it's carried over nicely, so she doesn't feel shoved to the side. All in all, I am impressed with the entire thing. 

Little Man is doing great. Language (as always over summer...) he's making huge gains. He's reading some more, we work on it... He is SO. CLOSE. He knows sounds. He can draw them out long. I just cannot get the blending to work! Keep on keepin' on... We're working on place value, just started on that. Not sure where we stand yet, but he gets math, so I expect it to go better than reading (haha, remind me of that later...). Mostly, though, I've been enjoying the conversations. He likes to know what we're doing. What we're thinking. At bedtime, he'll call one of us into his room, "Mom/Dad, I wanna talk to you about somethin'." So. Precious. I cannot explain how cool it is to hear how he feels about things, his opinions, his perceptions, his reality. It is too cool to finally get the 'why'.

Small example: he had been chewing on shirts. So I asked him why. He simply responded, "I need something to chew on." I asked him if he wanted me to buy him a necklace to chew on, or another chewy. He said "necklace". He sat down and helped me pick out a chewy necklace. Now he will go get his necklace if he needs it, or one of the flexible headbands (just the rubber Goody ones) that he likes to chew, or ask me to find it, if he needs it. He will tell me, "I need to chew", and he will use the necklace or headband. It amazes me that he knows he needs it, knows what is appropriate to use, and wants to use the appropriate tool (rather than get his shirt wet, which he says 'people will make fun of me' - he's embarrassed!). It's all pretty remarkable to me... He is definitely an amazing kid.