Thursday, August 15, 2013

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.

Wednesday, June 19, 2013

Excited... about a tonsil/adenoid removal?

Tonight as I was tucking little miss into bed, I asked her about her surgery coming up this Friday.

"I'm kind of excited." was her reply.

When I asked why, I got this... "Because I don't usually get a lot of attention... my brother does. And I'm going to get attention."


That was like a knife in the heart.

She followed with, "I know he has autism, and he needs things, but I'm excited to get attention, too."

Twist the knife...

It was an opportunity for a long talk.

If she ever needs us, she can ask us for a Sunday. Sundays, her dad is off work, and we can split the kids and go 1:1. If she ever feels like she needs us before then, let us know, and we'll figure something out. Just let us know. We're not perfect, we're just doing the best we can. We need her help, too. Anytime.

She cried. I cried.

It hurt to hear that she feels like she doesn't get what she needs.

But hopefully she understands that in the future, she can let us know, and we will make sure it's okay.


Tuesday, June 18, 2013

The "R" Word.

"You're so retarded."

Every time I hear that word, it makes me flinch.

The other students, fifth graders, I was working with, noticed my reaction to one of their classmates using the word.

One was angry, he knew it wasn't okay to use that word.

The others wanted to know why. They honestly didn't know why it was wrong to use the "R" word. People use it so freely, so unabashedly, that they didn't understand.

It was an opportunity to show them why the word is hurtful, and why we shouldn't use it.

But it's not easy to explain.

"So, you guys know that technically, 'retarded' means slow, right?"

They did.

"And slow doesn't mean you never get something, right? Just that it may take you longer to get something."

I got some nods.

"So, say you're talking about a kid who is technically 'retarded' by medical terms - let's say the kid is 10. But maybe he's slower at developing than typical kids... so he gets what maybe a 5 year old would get. Did you understand when people were making fun of you at 5?"

I could see they were getting it by the looks on their faces.

"And by calling people 'retarded' when they do stupid things... you're basically saying that people that are slower at learning are just plain stupid. And they're not. They are just slower at picking up new stuff than an average person. And like I was saying, they get that they're being made fun of. And it hurts them."

It wasn't perfect. I feel like I could have done a better job. But for a small group of 5th graders, I think I actually made a difference.

Spread the Word to End the Word.  They explain it WAY better than I did - watch the video:

Monday, June 17, 2013

One of those days... or weeks...

Summer vacation has a way of waking me up.

I get to see the real 'dis' in disability.

I see the struggles that his awesome school deals with, that I am blissfully unaware of.

However well I think he is doing (and geez, let me be clear, we are SO far ahead of where I EVER dreamed of being!), summer, the 24-7 autism, feeding off each others' moods (we do that to an extreme)... it is difficult.

I happened upon this video (actually, I have it bookmarked, and watch it occasionally...). I absolutely adore it. 'Extreme Parenting' sums it all up nicely. It's just a reminder...

Friday, January 11, 2013

What he is.

There has been a lot going on in the autism community since the Newtown tragedy.

The best response I have seen is Autism Shines. If you have a chance, go scroll through the pictures and read about these wonderful kiddos (and some adults!). They are truly amazing.

It has me thinking... I know my son ISN'T a monster like the Sandy Hook shooter.

What is he?

He is an amazing brother. He loves his sister with all his heart, and if she gets upset, he gives anything to make her happy. Yes, they fight, but when push comes to shove he gives up his position to stop her from being upset.

He is the best son ever. He will ask me what's wrong if I look anything but happy. He cries when he gets in the least bit of trouble (and he is RARELY in trouble, he tries SO hard to be good). He is the first to apologize when he does wrong, and wants reassurance that 'Is okay?'

He is a good friend. When his best friend comes over, he only eats a snack if he can have 3 - one for him, one for his sister, and one for the guest. He gets excited when this makes him happy.

He loves his cat. They sleep together every night. He gives up his pillow for his kitty every single night and goes without.

He loves math, and is good without being able to explain his answers. He just knows.

He unapologetically loves pink. And unicorns. And poodles. (By the way, I've been learning some awesome things about autism since my rather depressing post here. I have more updates about that, but let's just say this is my favorite thing about autism right now :) ).

He is obsessed with beanie baby boos and Sonic the Hedgehog.

He loves the xBox.

He loves going places.

He misses his grandparents terribly, and gets excited about their next visit.

He is him. He says he likes his autism. And for that reason, *I* like it. Because it is him.

Lastly, he makes me a better person. I'm sure he has that effect on many people, but he has changed my life immensely. He has shown me what I want to be, who I want to be, and refocused my priorities just by being himself.

He is ours. Mine. He is him. He is my soul.