Over the past month, our entire family has been sick. Jaxson ended up with a double ear infection, Jeffrey with a stomach virus that lasted a week, Jayson caught the virus but managed to kick it in a couple of days, and I caught the virus and couldn't get rid of it, landing myself in the ER with a bleeding ulcer and dehydration. It took two full bags of IV fluids running over three hours to hydrate me, and I still wasn't 100%. Then I got a sty in my eye and Jeffrey brought home yet another cold, which Jax and I have been fighting for days. On top of that, Jayson started a new job two weeks ago that has him out the door by 7am. Normally that wouldn't matter, but since Jax is back to his old habits of not sleeping, it makes it difficult for me to get any rest. Jayson takes him on nights he doesn't have to work, but he is halfway through two weeks of working without a day off. I can't ask him to stay up with a cranky baby when he has to work so much, so the house has fallen apart. Laundry is at least a week behind, we are literally washing clothes to wear the next day, washing dishes as we need them (no dishwasher), and staring at our gross carpet because our vacuum broke and we haven't been able to get a new one yet. That's it hit me: this is my reality.
My reality includes little sleep, little food, bad personal hygiene, ulcers, stress, anxiety and massive amounts of frustration. I need to utilize my outlet of writing now more than ever, so I'm hoping to take time out every day to write something. Whether it's posted or not is yet to be determined. But this is my life, as is similar to many special needs moms. I think the hardest part to deal with is the frustration.
Frustration appears in my life on a regular basis and in a variety of ways. Frustration with doctors, with hospitals, with homecare providers, with the numerous appointments every week, with feeling like I'm not heard, with the constant amounts of paperwork and hoops to jump through to make sure Jaxson has the best care. Then there's the frustration of knowing he's behind, seeing how behind he is when he gets around other kids, and knowing that we're doing everything possible to help him and he's not catching up yet. Don't get me wrong, he's definitely progressing and doing AMAZING things that I never thought he would do, but that's what makes it frustrating. He's already worked so hard and come so far, and yet he still has so far to go. Our journey is not even close to over. Now add in the frustration of having another child who can't express himself properly, is defiant, angry and sensitive to everything and anything. Jeffrey is nearly six (next month!) and still throws himself on the floor and the furniture when he's mad. And it's mostly because he doesn't understand what's going on or how to express himself, plus he has no idea what questions to ask to get the answers that would help him.
Besides the medical stuff, most of that is normal frustration for any mom. So I want to focus on something that's not normal: Watching your child with special needs do something normal (play date, etc.) and having people give him (and me) looks of pity. We do not want pity. We do not need pity. We need support and understanding. We need awareness on all childhood diseases/syndromes so that people will understand what is being said to them and treat our kids like any other kid. That's what we do at home. Jax and Jeffrey run around and play, get into trouble, climb up and down the stairs, jump on beds, throw toys around and just act like boys. Jaxson is mostly non-verbal, we all know that, but he is in no way, shape or form delayed in his mental capacity, nor has he ever shown a sign of diminished cognitive ability. He understands everything you say to him, so when he's upset about something, I just calmly explain to him what the deal is and he usually calms right down. He knows what he's allowed to do and what will get him in trouble, but like any 2 year old, he forgets 10 seconds after you tell him or he just doesn't care. He has listening issues like any other toddler, and he wants constant attention like any other toddler. But he doesn't talk, and therefore people assume that he has some form of mental retardation. I use that term as a clinical description, not a derogatory one. But Jax doesn't have that problem. People just don't understand.
I also become frustrated when people look at Jaxson's face and see their reactions. Of course everyone thinks he is the cutest thing ever, or at least that's what they say. But you can tell by looking at Jax that he's different. His head shape isn't normal and probably never will be. He has large features (eyes, mouth, nose, ears, hands and feet)) but is undersized overall for his age. He wears hearing aids and soon he will wear glasses. He has scars on his head that are pretty well hidden when his hair is long, but it's not always long. He has very visible blue/green veins down the sides of his face and forehead. I thought taking him out in public with pins in his head was bad, at least I could explain to people it was temporary. Soon he will also be wearing SMOs to help correct his gait and balance issues. All of these things are visible and not aesthetically pleasing. Because of that, it's not only different, it's bad. Supposedly.
I know I was picked to be Jaxson's mom, and I am thankful every day that I get to spend with him. We've come dangerously close a few times to not having him home, but he's always fought through it and proved everyone wrong. And once people get to know him, it's impossible to ignore his happy disposition, ornery face and his desire to get a rise out of anyone he can. He's such a trouble-maker! Jeffrey was never like that, so it's a new experience for us, but he does it on purpose and will stop when he knows we're mad. He's constantly on the go!
So here's what I would like for Jaxson, for any child that doesn't look or act "normal": No more tight-lipped smiles or turning heads. No more judgmental eyes staring at moms and their kids. No more looks of pity or apologies for things not in someone else's control. I want the smiles you give to everyone else, the looks you give to everyone else and the comments you give to everyone else. All of these kids deserve to be treated with respect. So instead of assuming and judging, please say hi and ask questions if you feel it necessary. And when a deaf child signs "thank you", please don't assume he's blowing you a kiss. If you get to know these kids, and I can vouch especially for Jaxson, you will find that most of them are just as happy as "normal" kids, if not more so, and they're very willing to share that happiness and light with you. Most of these kids have fought hard their whole lives, don't you think you should be giving them hugs and praise instead of stares and judgments?
I do. And that's how I treat special needs kids and parents now. Maybe I wasn't the best about it before, no matter how hard I tried to not pass judgment, but that's how I do it now. And you know what? I've been inspired more in the last two years than in my entire life. Each one of the kids I come across and have the pleasure of interacting with not only makes me smile, but gives me a reason to keep fighting for my child and for what's right. If we all did the same, imagine the outcome.
