Friday, June 14, 2013

The Truth About Being a "Special Needs" Parent

I never asked to be the parent of a special needs child. In fact, I despise that term. It brings to mind images of smiling Downs kids and relays for cures for Autism. Things people generally have warm fuzzy feelings about. 

There are so many things I hate about my role as Carter's mom. I hate that we have to travel 3.5 hours to Vandy so that he can receive the care that he needs. I hate that I nearly punched another mom in the face for not making her kids stop making fun of Carter's eye patch in Hobby Lobby a few days ago. I hate that we can't go anywhere where he has to walk very much without having to remember his ankle braces. I hate that his stubbornness and behavior infuriates me so much sometimes that I have to put myself in time out and remember that these are things that he can't control either. I hate that I sometimes feel that I can't give Jake and Natalie the attention that they deserve because I'm so wrapped up in Carter's therapy schedules. I hate that Carter is the kid in the grocery store that everyone stares at because he is throwing the tantrum in the floor. I hate that his infinite pain threshold makes nearly everything he does dangerous. I hate that he has more obstacles to overcome than "normal" kids and I fear for what that could do to his sweet spirit. I hate that I can't protect him from the world. 

Many special needs parents try to make the job sound glamorous, like it's all sunshine and rainbows and they wouldn't have it any other way. Many special needs parents are full of shit. You don't smile when you're getting kicked in the face trying to curb a tantrum. You don't smile when your child zones so far out into his own little world that he doesn't hear a word that you say. You don't smile when every single time you're at a doctor's office, they seem to find something else "not right" with your baby. 

All that being said, being Carter's mom is truly the most incredible and rewarding experience of my life. It just isn't one big Kodak moment. While he has a special gift of knowing just which buttons to push to make me slightly crazy, I've never seen anyone love as fiercely as that boy does. In fact, Carter bit one of Jake's friends just a couple weeks ago when they were play wrestling because he thought Jake was getting hurt. You don't mess with the people that Carter loves :)

One of Carter's quirks is that he's brilliant...insanely brilliant...he just doesn't often let people see that side of him. But, my God, when he does let you see how much he really knows, it takes your breath away. There is so much going on in that little mind that very few people get to witness. He'll write his name, alphabet, and a few other words when he thinks no one is looking, he is better than I am at puzzles. He's incredible.

There are days where I feel like going to work is easier than staying at home. My days off feel like I'm racing between destruction zones created by a tornado named Carter. Nothing he ever does is malicious though. He's really quite thoughtful. Bob and I were trying to decide if I should paint Natalie's room purple or yellow yesterday. Carter disappeared for a few minutes, then reappeared to announce that he had painted Natalie's room purple AND yellow!

One of the biggest lessons I've learned as Carter's mom: I can laugh at things that would send most moms right off the deep end :) I think he did a beautiful job. 

Most of the behavior problems that we have come from his inability to feel pain. He just doesn't understand the implications of some of his actions (ex: You can't throw your sister off the couch just because she's in your way). We have to be especially careful when he gets excited. When he's hyper, he'll jump off the stairs and stuff like that and it's obvious that he doesn't feel the impact. We made two ER trips last fall for stitches and a couple months ago, he dumped a coffee pot on himself and despite his chest being covered in blisters, he merely shrugged and said, "Sorry, Mom. I spilled your coffee." I'm terrified whenever I can't see him because there is no telling what he's doing. 

As far as his vision and his weakness, when the boys were making fun of his eye patch the other day, it was Carter who took my hand and said "It's okay, Mom." I was so ashamed of myself in that moment for finding myself being comforted by the little boy I'm supposed to be protecting. But, in a small way, it showed me that he is so much stronger than I ever will be. His vision doesn't affect him because he doesn't know what it's like to see clearly. What he lacks in physical strength, he makes up for with the most vibrant and energetic personality I've ever seen. 

When we first started finding all of these things, his opthamologist was under the impression that he may lose his vision completely (Thank God that isn't the case now). I cried every morning on the way to work because that was the only time I was alone. I was so tired of putting on my "strong mom" face. One morning, I hadn't quite finished crying it out in the car and a co-worker dragged me into the bathroom, literally shook me by the shoulders and said "Don't let his problems become handicaps." I need to text her or something when I'm done with this because I'm not sure if she knows just how much that statement impacted me. It's practically become my mantra for when I'm overwhelmed. And she was right. Absolutely right. Carter is Carter. There is nothing wrong with that. It's his environment that needs to adapt, not him. 

Anyway, I guess what I'm trying to say is that it's hard. Really hard. Every second of every day. I'm grateful that God gave him to me and not someone unable to provide him with everything that he needs.  At the end of the day, I have so much more gratification because I have to put 200% of myself into parenting and I'm succeeding. Carter really seems to be thriving. Sure, there are some nights when I crawl into bed feeling like we've all just survived a war, but the important thing is: we've survived.

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