I don’t even know what to write, where to start. Life has been so overwhelming this summer. The phone calls, the blatant discrimination, the prayers, the unshed tears. I couldn’t cry—crying just makes it real. The researching, the waiting, finally seeing doctors—the bills. All to start the cycle of phone calls again.
I’ve tried over and over to broach this subject and I haven’t been able to. But today my heart is so heavy, I just have to write my emotions out. So please humor me, as I step out of my creative/inspiration mode. Today I’m writing for me.
This journey started 6 months ago—really since my childhood. 6 months ago I was feeling so up-I had finally launched this blog (I had been working on it before that, I just hadn’t told anyone about it yet), I had kicked an unknown illness to the curb and I’d been consistently writing. I also had attended my first conference and found some good friends. After struggling through unemployment, grad school, and a mysterious chronic illness, I felt like we had arrived. We have a steady job and time to be creative—it felt great! Our kids were happy and healthy. What more could we want?
Within a few weeks of the conference, I noticed Sir Bounce-a-lot was, Sir Avoid-a-lot. No matter what I did, I couldn’t get him to look me in the eye. So me being—me—I googled, I read, I hyperventilated, and read some more. . . . This couldn’t be real—not my cuddly son. I clung to disbelief and the computer screen as it simultaneously comforted and crumbled my world. How could my little buddy, my sweet giggly son have anything wrong with him? I realized Sir Bounce-a-lot has most of the symptoms for. . .
I knew he was a little behind in speech but a lot of boys tend to be—at least that’s what the Dr. kept telling me. That hour at the computer I had to stare my excuses in the face, realize my denial and face the truth—our son needed help.
I wasn’t sure if he was truly autistic or just needing some speech therapy and social guidance. I struggle to give eye contact myself and the hubster had a stutter growing up. So I researched, looked, and asked. The first thing to do was get him diagnosed, simple right?
Wrong. Dead wrong.
I never knew how difficult dealing with the medical world could be. I ended up calling and calling, researching, emailing, calling—oh the calling! Then try to schedule, wade through mountainous piles of paperwork, all to be followed by anxiety and helplessness. So many dead ends resulting in, ‘no service’, why? Because my husband has a decent job. Yes, you read that correctly. I couldn’t get my son help because my husband has a decent job.
I called more than 20 places to get a diagnosis—each one refused to schedule without a Medicaid number. I couldn’t even foot the bill myself, they only accepted Medicaid. Talk about discrimination!
*This is a common problem in states where insurance companies aren’t required to cover Autism. Medicaid is the only consistent way for these companies to get paid.
**I’m not mad that those on Medicaid get help, I’m angry that I’m not allowed the same service even if I pay for it!
A few weeks ago we finally got his diagnosis—it only took 6 months! By now our little guy has started flapping and screaming—oh the screaming. Seriously, Peter Jackson, if you need more Nazgul sound effects, I have just the guy for you. We’re no longer in doubt of his condition, the only reason to get it official was to apply for waivers and such.
Through all this process I tail-spinned into my chronic fatigue again. I realized from all my research and interviews with specialists, that I was likely autistic as a child. Somehow my dear mother instinctively knew how to help me. Now it’s my turn, only I’m battling the after math of autism—anxiety. Especially my social anxiety, having to call and schedule things is really difficult for me. But I have to knuckle down and do it for my little guy.
This summer I’ve had to be strong in so many new ways and I’ve done pretty well—complained of course. Had to put my writing on hold as we figure out this new world, hey I may be many things—but a wife and mother first.
Today after being so strong—I finally broke down. My reserve erupted with two little words,
How did it come to this? He’s just a toddler! Why do I have to put my sweet little guy on a bus for school? Sunny’s never been on a bus, let alone had me crying over her leaving. Her first day of Kindergarten was yesterday, I smiled with a light heart as she skipped off to class.
Today is so different. My son can’t talk! He can’t tell me if something goes wrong. He won’t understand why Mommy’s putting him on this strange smelling seat, strapping him in, and letting a stranger take him away.
This really blindsides me.
The original plan was for him to start preschool next year and I’d be dropping him off. But here we are, starting a year earlier, and letting total strangers take charge of him for 30+ hours a week. Yes I’ve met his teacher and all that Jazz, but they’re still strangers.
Isn’t he my child? Shouldn’t I be raising him? Where did I go wrong? Why can’t I have my son home where he belongs? This is so counter intuitive, I have to let my son go because I love him. It’s one of the hardest things I’ve had to do.
Don’t get me wrong, I’m incredibly thankful we’re getting him some therapy, I’m grateful that the school district is sending a bus to help our one car family. We’re very blessed, I see that.
I’m just not ready. This wasn’t in my plan. I’m not mentally prepared.
And that’s okay.
Nobody’s perfect, including myself. If you’re like me, blubbering like a baby—gasping for breath, struggling to face a new reality pull up a chair and let’s share some ice cream.
We’ll refrain from cheering each other up-but instead we’ll mourn together. We live in a world that is addicted to happiness. One where the burden of grief is automatically coupled with the burden of guilt and social disdain for ‘airing dirty laundry’ or causing someone else to feel bad. So we typically choose to bear it in silence, when a kind word or a hug would make a world of difference. Today I want you to know that,
it’s okay to grieve over lost hopes and dreams.
I’m willing to grieve with you. We might embrace this adventure tomorrow, but that’s tomorrow. Today we get to cry and slowly enjoy our ice cream cones. Let’s leisurely slurp down the creamy goodness, allow it to waft over the roof of our mouths and help our breathing slow down in it’s luscious flavor. Some days you need to keep your chin up, and sometimes you just need ice cream.
What’s your favorite flavor of ice cream?
Note: The bulk of this post was written on the first day of school, but due to my awesome editing skills its taken a little while to get this up. Sir Bounce-a-lot enjoys school and runs to the bus now. We’re doing great, I just felt the need to share the raw emotion. I’m sure there are plenty of other mammas dealing with tough issues and need to hear its okay to grieve.