Sometimes the waves of good things and bad things can seem so overwhelming. Had you asked me 10 years ago, where I would be, the answer was simple. But here I am, a million miles off that projected path. It’s funny, so often, I feel as if my life is like a GPS unit, constantly trying to update to reroute me so I eventually get to my original destination. However, after years of fighting with the reroutes, I feel it’s time to plot a new course. Not only for myself, but for the son that I love so dearly.
Since we have moved here, I have met with a lot of people. All of which have some function of dealing with autistic children. I can’t even tell you how many times I see looks of pity on their faces when they realize, I, a college educated woman with military service, barely makes ends meat to get by. They are further surprised to learn that I have utterly no connection, what-so-ever to the world around me, because at the end of the day my life consists of three things: my child, my job and my son’s autism. There’s little time left over for anything really. I’m lucky if I get to enjoy a new book or heck, even a bubble bath. But it’s the cards I’ve been dealt and honestly, there’s no point in trying to fight the life you are meant to live. My purpose in life is to help Cameron and I accept that responsibility with little to no regrets. I wish I could be strong enough to say no regrets entirely, but I think it’s natural to have regrets and in my case, my biggest regret is that there just isn’t enough of me to be there for both of my boys equally. Despite everyone’s assumptions that I have a preference for one child over the other, I don’t. I love my boys equally. Unfortunately, they weren’t not given equal opportunities in life and for that, I’m sorry.
The more I try to find services, ways to help Cameron, the more overwhelmed I feel. That’s the thing with autism, much like the diagnosis, the means of finding help for it is just as mystical and sometimes impossible to reach as your child can be. The difference being, my son is trapped in his own world, while I am trapped on the outside, trying to build a bridge to connect his world with ours.
My frustrations come with the constant “Contact this person or service. They should be able to help.” Nobody truly knows who to point me to for help and all of those services I keep being told to contact, 9 times out of 10, they can’t help me or my son. So I wind up wasting more time and energy, meanwhile becoming increasingly more frustrated at the system or from what I can see, the lack of care for this issue. And though big organizations like Autism Speak seem to have a wonderful wealth of knowledge, their websites are not user friendly for a parent who doesn’t have the extra time to dedicate to hours of constant research around their site. Heck, I’ve been in this area 6 months and I can point out 5 major things wrong with their site, after only a two minute look. There seems to be a huge disconnect within the community, government and everyone who has dedicated their lives to helping out children and adults with this disorder. Now, before anyone thinks I’m saying something negative about any of these, I’m not. I’m merely pointing out the three sections don’t always meet, let alone overlap.
For example: now that we have accepted the Autism Scholarship for Cameron, he, no longer qualifies for the speech and occupational therapy he needs. The school district said it is not their responsibility, the Autism Scholarship does not cover these programs and Medicaid says the school has to be the one to provide it. See, three different sources, none of which overlap. So I am left with the prospect of needing to do one of two things myself: a) pay for the services myself or b) do it myself. Which, honestly, seems to be the solution to about 99% of the problems we face now.
I am looking for a second job. Not because I don’t love my current job. On the contrary, actually. I love my current job. But we barely make ends meat each month. But my struggle to find a second job is going to be difficult. No one wants to hire someone who can only work for 4-5 hours a day (during the morning/early afternoon) and can only work Monday through Thursday. To many, that make it look like I am being lazy and don’t really want a job. But when you have a child who cannot attend daycare and only has school Monday through Thursday from 9-2, you don’t have a lot of job opportunities you can take. No matter how much you may need them.
Hopefully, I will find something that will work with my schedule. Hopefully, it’ll be enough to cover his medical bills and the services that Medicaid continues to deny coverage for. And hopefully, one day, I’ll be able to help him build a strong enough bridge between the world he lives in and this one, so that things can be easier for him and on him. Meanwhile, I will continue to treasure my time with my son and if my only rewards come in the quiet moments of a good book or a relaxing bubble bath, so be it.
And if I ever find my way to a place where we no longer have to wade through a constant onslaught of bad waves and we find our way to getting Cameron the help he needs, I vow to find some way to develop an easier way for parents of Autistic children to find the help they need. Being a parent is hard enough. Trying to be a good parent and get your child the help they need shouldn’t be this difficult. And if the system set into place makes it so difficult that even merely surviving becomes impossible, then the system has failed the parents and the children.