Home » What the Special Needs Family Really Needs
I wrote earlier this week, awarding this week’s Cause of the Week status to Ayn’s Freedom Fund. I’ve felt personally challenged to become involved in this campaign, even more so as I have had a chance to learn more about the situation and speak with Derek Hoare and other members of the Facebook Group he set up. I stand with a worldwide audience of parents, educators, autism specialists, and more, who are saddened, frustrated, outraged by the situation Derek is in.
But the fact is, I haven’t really shared why I feel so personally close to this cause. And I think it’s time I do. Bear with me, if you would, as I share with you a story of sorts. It’s a story of ‘the special needs family’ in the sense it has happened to so many before and since, but it is also part of my story, our story, the Moody family’s own slice of reality.
This story … it’s unique and yet similar to stories of other parents like ours–parents of special needs kids–parents who don’t make a lot of money, who can’t really concern ourselves with making a lot of money. We’re too busy taking care of our kids.
We can’t throw money at our kids’ diagnoses. Don’t get me wrong, we would if we could. But we can’t. We can’t afford to mortgage the house and cash in the retirement savings we don’t have.
Instead, we throw everything else we can at these diagnoses. We fight with insurance and for the additional benefits that will allow use to care for our kids.
We’re lucky if we have friends and family willing to help. But they have lives too. And all-too-soon it’s down to just us again.
So we throw ourselves, heart and soul, sanity-be-damned, into doing the best we can by our awesome and amazing kids, who happen to have special needs.
So if we’re a little nutty, I call it a sense of humor, and a coping mechanism.
If we’re depressed, I call it a normal reaction to the stresses we deal with daily, the stresses that wear and tear at our mental and physical defenses.
So of course we get overwhelmed and sometimes break, just a little, under the pressure.
But our hearts? They’re the spirited hearts of survivors, of fighters, because we’re fighting for the most valuable commodity in this world–our kids’ futures.
And our kids, they always come before ourselves. They get the best parts of us–our patience and dedication and spirit. Our love. Our hearts.
Seen through this lens, is it any wonder that we feel outrage and helplessness at those in authority who bypass the very lives we lead, who try to separate us, who threaten us with the very heart of “us” – our kids?
Rather than understanding, child protective services–worldwide–have shown a disturbing lack of awareness, of ignorance, even, of what it means to have special needs kids.
I promised a personal story, one that has lived on in my nightmares for years. Here it is:
Years ago, before we had Logan and after we realized the realities of two kids with special needs in Andy and Bobby, I faced one of the worst days of my life. At the time, we had over a dozen therapy appointments a week between both Bobby and Andy, and visited at least one or more specialists a week as well. Somewhere in between breathing and dreaming, I slipped.
We had visited the pediatrician and Andy was tested for anemia. I don’t remember all the details, just that the doctor said we could pick up drops and he would be fine, that it wasn’t that big of a deal. So, while I had therapies and appointments, it slipped my mind to pick up the iron drops from the drugstore. Three days, five therapies, and one specialist appointment later, I left home to go to work but was stopped at my car.
A CPS worker and a police officer stopped me and said we needed to talk. So I went inside to ‘talk’ with them, I along with my husband and mother-in-law. The kids were sleeping and the authorities wanted to see them. They wanted to see the house. And then they got down to business.
Did I know, said the case worker, that I was going to cause my son brain damage because I had neglected to pick up his iron drops?
Did I realize that my special needs child could get worse, by the day, because I had neglected to get those very important drops?
I tried to explain that, no, the doctor hadn’t said anything about brain damage. I would have remembered that. I was waiting until the weekend, when the therapies would have evened out and I could slip away more easily.
The case worker left me in tears, almost hysterical, about an hour later. My husband and mother-in-law were in shock. I? Was the worst parent ever. How could I have neglected something so dire? I researched everything! How had I missed this?
After a week of pure turmoil, a visit to the very Dr’s office that had called CPS on us to begin with, I was left a broken, destroyed wreck of myself. I was placed on antidepressants.
Then the “report” came. It deemed me an overwhelmed mother but said I had not neglected my child.
That report was–partially–the end of that chapter for us, but other families aren’t that lucky. We didn’t get any help after that week of hell. No apology–from CPS or the doctor’s office (we did switch the kids’ pediatrician as a result).
After all that, I asked for the results of Andy’s anemia test, the test that showed he was in dire condition. It was low, not dire. Another doctor was aghast to learn what I was told regarding the delay in getting the drops.
The problem is, we’re already called, as special needs parents, to be on the ball all the time. We’re never “off” duty. So when we slip, even if it is just in our heads, it haunts us. This episode haunts me to this day. Not just because of how I was treated and that it happened in the first place, but because I will forever question whether I am a good enough mother.
And that’s the point. Are we really supposed to be so much better than the rest of the population? Are we not allowed to be human?
In Derek’s case, Ayn disappeared in an instant, from a locked and fenced-in yard. How many parents have had their child wander off? But the authorities see it’s a special needs child, then see it’s a single father, and suddenly four days later he’s down one daughter and fighting for the basic right to see her, to have a say in her care. Because he’s human? Because being a single dad isn’t hard enough, and being a dad to special needs kids isn’t hard enough? He’s supposed to be beyond reproach, perfect?
Well, I and other parents say no! It’s not fair. It’s a show of ignorance and apathy toward families already stressed to the max. By those in a position to know better. Shame on them.
There you have it, long very long, and short, of it. My own sordid tale doesn’t take on the same tenor as Derek’s – no one drug my kid away from me while they were at school. But I think the stigma of being a special needs parent, of being expected to be better than other parents, somehow, because these children need us so–I think that blinds some people to the reality of what a special needs family really needs.
What’s that, you say?
How will you help a special needs family today?