I don’t want to, and don’t mean to, take away from the tragedy that happened in Lake Jackson on the 5th. A five year old girl was hit and killed by a truck. It was a freak accident. The girl was walking behind her father. She stopped and got down to look in a storm drain. She was too low to be seen by the driver.
I cannot image the pain that goes with having your child die. Especially in such a sudden way. Especially in a way that can lead to you blaming yourself.
Think about it: you turn your back for half a minute. You miss seeing that your child has gotten down on the ground. You don’t see that your child is in danger. It takes almost no time at all.
You will potentially feel that guilt for the rest of your life, I would imagine. I could only think that it’s nearly impossible to erase the feeling. Even though it isn’t your fault, even though it was just a momentary lapse – one that every parent has every day, multiple times, probably – it is the one lapse that will never go away. Never be forgotten.
This is a fear of so many parents and caregivers of those who love someone with autism.
It’s a real fear, a daily fear, a constant fear. A terrifying aspect of autism.
Children, and adults, can decide to run for no reason or for some unknown reason.
Simon is afraid of birds. Hearing birds, seeing birds, sensing birds…that can set him off. We have a handicapped tag to make sure that, on days that when the birds are converging, we can park close by and don’t have to worry about him making a break for it across the parking lot.
But not everyone can do that.
And not everyone can hold onto the person that wants to run. Or keep an eye on them 24/7. There are lapses. There are moments. And they are the scariest parts of the day.
I sit here in the cafeteria of my son’s old elementary school at 6:45 at night. There are three lunch tables set out by a very kind and helpful janitor. There are seats for 12 at each table. There is plenty of room for kids to run and play around the room – there’s even an empty stage. And there’s me.
Why am I here?
I’m in charge of the new parent-led support group. The group that’s meant for parents of children with special needs. The children don’t even need to be in the school district. They can be in any local district. Or a non-local district. Home schooled. Or even too young for school but wondering what will become of their child when that child is school age (which, in the world of disabilities is 3, the age when PPCD starts and ECI ends…and if those initials sounds wrong to you, you might live in a different area or state, but the age is probably the same: it’s when the early childhood intervention ends and the pre-school begins).
So we cast a pretty wide net.
Flyers for this meeting went home with parents about a week ago. I posted in a bunch of FB groups. I even sent a mass email to anyone who gave me that email address at the last meeting or at the school district’s “ability fair” back in October.
And yet…I’m here alone.
I guess I shouldn’t complain too much that no parents showed up.
Our speaker is also MIA. She’d contacted us a few months ago, asking to present to the group. We got her scheduled with the date. Then I gave her the time and the place. Never heard from her. I tried to reach her today for a last-minute confirmation. Nothing.
Which means that I’m sitting in the cafeteria, alone. No parents. No speaker.
If you ever wonder why districts/schools can get away with doing so many bad things, giving students sub-standard services, treating special needs kids so poorly…I can answer the question with my lonely presence here tonight.
People – parents – don’t put in (or can’t put in) the time and effort.
And on one hand, I get that. I really do. It sucks to not be able to find even a single hour to get to a meeting about your child’s future. But, on the other hand, it’s kind of like voting. How can you complain if you don’t show up?
Sadly, I’ve seen this happen before. Many, many years ago, before our school district’s special ed department was as fantastic as it is today, we had to fight with them (getting a lawyer and all) because they were trying to do something not in our son’s best interest. It really wasn’t in any child’s best interest, but it was the easiest thing for them to do. At the time, we tried to rally support in the fight, to get the other parents involved. None of them were interested.
Our effort made a different – our son got a better end result, and we got an absolutely fabulous new head of special programs.
But as I sit here tonight, I try to think good thoughts. Instead, I flash back on an accidental meeting I had with another mother about eight years ago. It still haunts my head.
We were both picking up our then four-year-olds from their afternoon pre-school. Her son seemed to be very high-functioning, so I asked what his diagnosis was – I thought maybe he was Asperger’s.
She looked at me, confused. Then said, “Oh, I dunno. ADD or something.”
Well, the class was only for kids on the autism spectrum, so while her son might have had ADD as well, I suspected that what she actually meant was PDD-NOS. Not that she knew that. I’m still face-palming over that afternoon.
Anyway, the point is: the evening was a bust. And a reminder – I hope – to parents and families to do all they can.
And now I’m at home, posting up this blog, and drowning my sorrows in hot chocolate and popcorn along with a really bad horror movie.
Once upon a time (about a week ago now), a “pissed off mother” wrote a letter that went Internet-crazy.
Obviously, this letter was just a wee bit upsetting to all of those who have children with autism or other developmental disabilities. It took me a while to form a response, but now that I’ve calmed down, I wanted to respond. It *needs* a response.
First, I can’t blame this mother for sending it anonymously. If I had written something with punctuation that was that bad, I wouldn’t want anyone to know I had written it either. (Joking. Humor helps, right?)
But to get to the serious part, I feel sorry for the mother who wrote this letter. Genuinely sorry. Sorry for her and the life she leads. The life she’s going to lead.
She needs to think about the lesson she’s teaching her children. She needs to remember that her children will be the ones picking her nursing home. And that’s not a joke. I’m not being facetious. The letter she wrote shows a distinct lack of caring for those who aren’t “normal” or behave oddly. According to one Alzheimer’s website, the risk of someone developing a form of dementia is one in 14. If she is that one in 14, her children will fear her and revile her, just the way she has taught them to. She shouldn’t be surprised if she finds herself in an inexpensive nursing home with no visitors and no one coming to her grave after she dies alone.
We reap what we sow. She has made it clear that those who are imperfect are not worthy of love or even simple human dignity. She will have that experience herself one day, and perhaps by then it will be far too late for her to change her mind or teach her children differently.
That’s why I feel sorry for her and the life she leads. I also feel sorry for her children. Perhaps none of them will ever learn to appreciate the simple things in life or even life itself. She won’t read this. And she wouldn’t care or understand even if she did. And for that, there is no cure. She will suffer forever.
My son may scare her, but he has empathy. He would feel bad about scaring her. She, on the other hand, scares me. She doesn’t feel bad about scaring people. And she doesn’t know why that’s wrong.
Autism can be coped with. What’s wrong with her, however, can’t be. She may be able to pretend she’s normal sometimes, but her letter makes it clear that she does not possess human emotions. And for that, I feel sorry for her. I have to hope that other parents of autistic children can find it in their hearts to feel sorry for her, too. Because while her letter might shock us and hurt us, we have the strength to move past it. And she never will.