For me, I just sort of fell into special needs parenting as I'm guessing most of us do. That's not to say we didn't know beforehand. I did not know about Seamus, nor was there any way of knowing. But still, you are get genetic testing done while you're pregnant, you aren't expecting that test to fail. You aren't prepared for that phone call from the doctors telling you something is "abnormal" with one thing or another. It takes you by a landslide. All at once. What do I do? How am I going to handle this? What does this mean for my family's future? Honestly, no one can blame you either. Immense, vast, unending. These don't even start to come close to the amount of stress and strain and struggle you'll go through as a special needs parent. Once you choose to weather the storm, you'll find that it isn't all doctor appointments and blood works and therapies; some times this is going to take your breath away. Why It's A Big DealI've met plenty of people who don't understand why being a special needs parent is a big deal. They don't understand what we do, or why my children must be given special accommodations for their disabilities. "Leave them at home if they can't handle the circus." "Why does he get a stroller; he's five years old!" "If my child yelled like that, I'd beat them so they'd have something to cry about." Yes, while all these comments are easy given, they aren't so easily received. Because not only does it show that conformity is the only point of existence, it derails our children's humanity. My sons are humans, so if they want to go to the zoo but get exhausted and overwhelmed, I'll bring a stroller so we can all enjoy it better. Sometimes Hilo likes to go to the park, and needs to take little breaks by himself. That's okay. He isn't smacking the other kids, or yelling profanities. So why does it matter what he is doing? I'm making his life happy. He is my child. For the naysayers who give me nasty looks when my son has a meltdown (a severe tantrum) about not getting to buy another action figure we have at home, I say "Please show a little understanding." As parents of children who are demanding, we stand for just more than a provider of love. We are a provider of everything. At some point or another, our children are entirely dependent upon us to function. Typical children outgrow this stage as their abilities mature, leaving their parents momentarily exhausted but realizing one day, they're children will grow up and move away. I do not have such luxury. In my mantra each day, I'm not able to say "one day, it'll be over and I'll miss it." because it won't be over. My child will never leave my care. His special needs hinder him from being able to live independently. I have no doubt that Hilo will be able to live and function on his own in the world. His autism is not so severe that we need behavioral plans in place, or skills training. But Seamus will most likely not mature mentally past the age of ten or so. TEN. He's ten, forever. There will no college, or wife of his own. No job to support himself. Empty nest will most likely never be an option for me. Not saying he isn't a blessing, he isn't amazing and I love him to pieces, but all those daily needs are exhausting. Every parent is exhausted. It takes a lot to care for tiny beings! Luckily for them, as their children get bigger, they'll learn skills to do themselves. My son will be a grown adult man, and depending on his size, could probably overpower me at some point. But he'll be ten. He'll need help being reminded on things, or need just need help doing things in general. Life will hand him struggles he won't understand, and I'll have to be there for that, too. So it isn't all, handicapped parking tags, hospital visits and vents on Facebook groups. It's stress. Loads of unending stress. It's late nights, and early mornings for some. It is heavy and physical for others. We know all the lingo. We've read the books. The bags under our eyes are permanent. Yes, those stains on our shirts have been there for years. But there is one part of us that isn't going to be tired. It's our eyes. No matter what kind of mood we'll be in, once we see our special children express joy (each in their own way, too) it all becomes worth it. Running over our toes with the wheelchairs, more than once, and spilling our coffee (along with almost crying about said coffee), the dirty stare in public, the criticisms we take from our own family and friends, and whatever else we put ourselves through just so that we can give our children a quality of life that isn't so terrible. One Thing You Don't realizeBesides all the other things we do for our special needs child, we also take on a different role when we become their parent. An important job, too. One that no one else will do, in the truest form of loving devotion. We become advocates.
Advocate. It's become such a dirty word lately with all the political nonsense going around but, it is the most important part of our lives that we cannot ignore. Even the most shy and gentle mothers take on the appearance of a dragon when it comes to their children getting the help they need whether it be medical or therapeutic, or mental. We take on a role much more severe than any other roles. Our other children who are "typical" in development grow up and get minds of their own where they can stand their ground pretty well. In their own way, of course. Their ability to fend for themselves comes with practice. A disabled child isn't so lucky. They cannot stand up from themselves. More often than not, our special children are taken advantage of the most. By anyone! That is why the parents have to take on the roles of being the big, bad parents. Personal truth: I have become that total B-word who calls doctor offices. #NOSHAME. Right when Seamus came home from the hospital, I learned quite quickly that there are people who do not give a crap about what you're saying. They just know how to do their job, that's it. When I didn't know how to play it. I tried being the nice concerned mother who'd call and try to make the appointment just as my doctor instructed me to do. Never worked. And I waited. I waited on their wait list and waited. No one ever called me back. No one cared how much my son needed this appointment and how much my doctor said, he needed to see this specialist for this to get done. They simply did not care. So out rose the fire-breathing monster in me, and so came the mother who wouldn't stop. I called, and called and called. I think I called every day one entire week to see if they had an open appointment. Never did. So eventually I contacted our referring doctor in defeat saying that I had no luck. That day they called the specialist's office and found me a spot that same week. Never give up. Don't accept no as an answer. Your child needs you. They need a person making sure they are getting everything they need to cope with their disabilities and improve the abilities they do have. I no longer feel bad about standing up for my child's needs. I do not accept anything less either. Guess what? No one tries to pretend otherwise either. They know what kind of parent I am, and if I think they are not holding up their end of what she be done, I will say something. Seamus needs a person like that in his life, because he can't do it himself. I can imagine the horror that some moms have reading this too. Parts of it may sound horrible but really, I am not a mean mom. I haven't even had to yell at anyone (yet anyway). What I've done is lay down the law about knowing my sons needs, knowing his condition like the back of my hand, and showing the professionals that nothing is going to get past me. Truly though I have an amazing network of doctors, support staff, therapists and many others who give us the best compassion and understanding ever. I cannot complain about any of them. But that isn't to say that I haven't met my share of bad apples and doctors, who can't be in the room for more than ten seconds and never even acknowledge their patient i.e. Seamus. The biggest blessing I've had is creating an amazing world of people in Seamus' (and even Hilo's) life that I can fully place my trust in their abilities and intentions. Our lives have been made better by those people whom I will never forget to credit in Seamus' success in life. Thank you.
0 Comments
Leave a Reply. |
AuthorGabrielle Rae is a special needs, stay at home mommy of two boys. She enjoys reading and writing novels in her spare time. @onbothfrontsArchives
August 2018
Tell me. |