Saturday, January 17, 2009

Society and Parents

After my own experience with Child Protective Services recently, as well as reading about the trials others are going through, equally unfairly, I feel like I need to get my 2 cents out there.

Back in the "good ole days" kids climbed trees. They played football, they rode their bikes. They didn't vegetate in front of a TV or video game, and their parents actually let them out to play in the neighborhood. I played outside during the summer from morning till night, and came in when it got dark. Sure, kids got hurt. Broken arms, scraped knees, bruises or bumps. When it happened, you went to the doctor or the ER, and they fixed the injury and that was that.

Nowadays, it seems that we as parents cannot be too careful. Long gone are the days when you could take a kid with a broken arm to the hospital and just have it fixed. Now, you'll have a social worker talk to you. She may or may not tell you that she's going to assume you did this to your child, and call CPS. We had this situation (well similar) with Sierra a few years ago. Jaymes knocked her off the couch, took her to the hospital... And we were talked to my a seemingly sweet social worker. I explained what had happened, and she said "oh ok, I can understand that. Autistic children can be unpredictable. Lesson learned, and I know you'll be more careful in the future." We were set up in a room with a few other kids with injuries for the night, assuming it was ok to now focus on our baby and her injury. At 2am, CPS agents started pulling parents one by one from their kids bedsides to interrogate them. The one I got actually had the nerve to bring my own childhood abuse into the questioning, which was both irrelevant to Sierra's injury, and incredibly offensive. Long story short, they looked at her Xrays, looked at the stellar references I'd gotten from Jaymes' doctor, therapists, etc... and apologized for wasting my time and putting us through so much stress.

We went through this horrific ordeal yet again, right before Christmas. Jaymes had, a few days prior, found a way to get up to the window latches and unlock them (I'm not sure if they were locked, the latches were very tricky) after a year of never showing any interest whatsoever in them. He did it while we slept- somehow climbed up there, opened the window, kicked out the screen... And hopped right on out. The window is a good 6-8 feet down, and goes into the pasture. He could have died in a million different ways, and yet miraculously not a scratch on him. He must have done it right before we woke up at 6 something, because when we went out to walk the dogs and he came bouncing right up to us from the side of the house.

We left immediately for Lowes, and bought pins to put in the windows. He didn't go back into the room until the window had been fixed. Now, ten years ago, it would have been no big deal. A shock for the parents, no doubt, but not a child abuse case. Accidents happen, you don't assume your child who has never shown the slightest interest in windows to just break one open and hop out.

Only a handful of people knew about this, because I kept it to us. I told 3 people who know me well, and one doctor. But on Christmas Eve, the CPS worker knocked on the door. Despite being absolutely terrified, I did very well. I answered all her questions politely, showed her around the house, and the kids were very good. Jaymes was very upset afterward, but that is to be expected unfortunately. What really bothers me is this: On the paperwork the CPS agent had to fill out, they have to check which category of abuse we're accused of. The anonymous report to CPS from whoever did it said that "She locks her kids in their rooms all day and is mentally ill". Despite the CPS agent agreeing that I was not behaving in a mentally ill manner, and that I was doing a damn good job considering all the stress in my life, she still checked that box on that abuse survey that says something like "parents action or inaction put the child's life in serious danger or caused serious bodily injury. Examples: locking child out of the house at night, burning child, killing child."

That is disgusting to me. How dare they put a freak accident in the same category as mutiliating or killing your child. You know, we should have thought about the windows. We should have, but we are not infallible. You, who have normal 5 year old children, don't have to worry about them waking up before you do and jumping out the window. You with normal children don't have to wonder what insane, dangerous thing your child will do next that will get YOU, the parent, in trouble.

The CPS agent pretty much told me that we were ngeligent because we weren't watching him when it happened. Apparently, we're not allowed to sleep. No one, NO ONE, can watch a child 24 hours a day. We all have to sleep at some point.

Our society has come to this point... This point that parents have to fear bringing their children to the doctor or hospital for injuries, to fear saying them feel overwhelmed by the gigantic task of raising a child like Jaymes, to fear asking for help. To ask for help seems to be an admission of being an unfit parent, and so we as parents sit back and suffer, wanting to ask for more help, but not being able to for fear the kids were suffer so long and so hard for will be taken from us. It's shameful. Parents are not the enemy. Yes, some parents DO abuse their kids and deserve to be arrested for it, and never see those kids again. But look at those of us raising special needs kids:

I have given up my life for the last 5 years. I have done it cheerfully, I have worked my ass off to help Jaymes. I spend hours listening to him scream his head off, I sit and hold him when he wants to beat his head against the floor or bite himself. I hold him hand crossing parking lots, even if it means being scratched bloody because he wants me off. I clean the poop off the walls, I do the daily lotion on his eczema. I take him to all these appointments, sit long hours in boring waiting rooms. I have not been to a movie in a long, long time. Maybe 3 movies in the last 5 years. I wait until he goes to sleep to eat, I spend my every waking minute caring for Jaymes. I put his blankets on just so, every night. I make sure he has his Elmo and his plastic dinosaur and the correct assortment of blankies. I make sure his blue light is on overhead, because he does not like the dark. I research for hours to find the best ways to help him, the best meds to try, the best therapies. I write out IEP goals for him, argue with the school, ALL for Jaymes. I swing him in his swing every night, to help him relax for bed. I do the sensory brushing, I do the joint compressions. I sit with him and help him eat his meals.

Why the hell would I do all this, give up my life as a person rather than a mom? Because I love him, and he is my life. I will never regret a second of any of this, because he is worth it. I will never throw this back on him when he is older, nor solicit pity from others. This is my life, and we take it one day at a time. Sometimes I'm down about it. Sometimes I'm overwhelmed. Sometimes I'm angry, even. Not at Jaymes, never at Jaymes. Just angry that god, or whoever's up there saw fit to give me such a huge task, to make me work so hard. But again, totally worth it.

But really, if I were abusing and neglecting Jaymes, locking him in his room all day and night, why the hell would I do all this? Do you know how easy it would be to pull him out of therapy, dump him with a babysitter, and have a life? If I didn't care, didn't love Jaymes, I would not put myself through this. I wouldn't spend those hours at therapy, I wouldn't pester the professionals with "how do I do this at home" type questions. I wouldn't DO any of this. I'm not perfect, I make mistakes. We all do. To some extent, with a special needs child, these things will happen. I (as a normal/neurotypical whatever) child fell off a bridge when I was 9, and split my head open. I fell and split my chin open numerous times. I got hurt all the time, and yet I didn't get taken away. But an autistic child does something totally unpredictable, WHILE WE WERE SLEEPING (he should have been too, the stinker) and I'm a negligent parent.

Whoever filed that report with CPS, I hope you rot in hell for it. We all get ours in the end, and i cannot think of a worse sin that trying to have a child who is desperately attached to his mother, taken away. Away from loving, exhausted parents who have made it their life, their heart, and their soul to care for Jaymes. It's disgusting, and shameful.

I feel for all of you with kids who don't wear bubblewrap suits, whose kids get hurt, who get interrogated and treated as I was by the system that should be here to help, and support us. We, who take on so much more than the average parent, deserve understanding and support- Not threats of taking our children away.

You know the funny thing... I have spent the last year trying to find some kind of childproofing that is intended for older kids or adults. I've asked the pediatrician, how can we lock the windows/doors/fridge/cabinets in a way that Jaymes can't undo? All the childproofing stuff out there is for babies. Jaymes still lacks any sense of self preservation, no impulse control at all... But he is 5, and he knows how to undo baby latches. I've asked therapists and doctors, and no one has any answers. Medicaid won't cover the costs of those safety things... But if something happens, no matter that you've asked time after time, it's because of the parent's negligence.

I disagree. Why don't we have someone making safety stuff for older kids and adults? Why doesn't medicaid cover it? For the same reason Medicaid no longer covers special car restraints. The program got axed. Funding was cut.

If only the Dept of Social Services would put money into preventative measures- safety locks and special car seats, rather than crucifying the parents when something happens.

They seem not to realize that Jaymes is a child who has no concept of self preservation. he would walk right into oncoming traffic if I let him. He would walk off a cliff probably. He would jump off a bridge, or go home with a stranger. He doesn't understand these things. the things that most kids just innately KNOW, Jaymes cannot comprehend. He will, hopefully, one day. He is smart, he can learn. But at this point in time, Jaymes is (safety-wise) like an infant.

So to all you parents out there of kids with special needs... Thank you for what you do. It truly is a higher calling, and though others do not understand, you are incredible. When accidents happen, I hope that you know it is not because you're a bad parent... it's because we are human. We can't predict every injury, every thought that might come into our kids minds. We can only do our best, make things safe as we can, and watch our kids. Accidents will happen, and we learn from them. Stay strong and remember that though others may not get it, other parents do.

1 comment:

Pasifik said...

Great article!

Happy blogging,

Toddler Safety