Monday, April 9, 2012

Harness

Our older son refuses to plant his rear end on the seat of his bus.

"Do you have a problem on the bus?" His speech therapist asked him one day during their regular session. She is often our best person to figuring out what he is thinking. She would ask him a series of "yes" or "no" questions, holding up picture symbols for him to point to for his answer. As with their conversation regarding the bus, I find out what he is thinking by reading a transcript provided for me in his notebook at the end of the day.

"No," he answered by pointing to a picture symbol she held in her hand.

"Do other people have a problem with you and the bus?" She then asked him.

"Yes," he answered.

Why that little so-and-so!!

"Do you really think it is other people who have the problem?" She asked.

"Yes," he answered by pointing to a card.

"Is sitting that way all that important to you?" She asked.

"No," he said.

Gasp!

"Does it bother you that people are upset with you?" She pressed.

"No," he replied.

"Do you plan to change what you are doing?" She probed further.

"No," he answered.


I couldn't believe what I was reading. On one hand, the level of communication our son had with this woman was so delicious, and so NORMAL that I wanted to cry! Yet, his defiance was so maddening at the same time. I didn't know whether to scold him or hug him.

Either way, it was clear, he was getting his jollies by trying to lie on his belly on the seat of the bus. Seemingly, he enjoyed our stress level, and he didn't give a hoot about any token system put in place to curb the behavior.

It was HIS behavior, and he was owning it.

Silently, I was celebrating his spirit. Quietly, I was applauding his pre-teen expression. Typical behavior is a rarity around here.

However, I was careful to not share my delight with him.

"YOU GET ON THAT BUS AND SIT DOWN ON YOUR BUM, YOUNG MAN!" I strongly urged him every morning.

After much coaxing, he'd be in place. I'd back off the bus, hold my breath and say a quick prayer. Then, I'd turn around and head to the house, ready to make the first of several phone calls to fight for what rights my son does have to act like a jerk.

Some rights he doesn't have. And, here is where I am struggling.

The lines are blurry, and administrators don't want to draw them where parents want them to be drawn. Often, the battles are a question of who is willing to step up to the plate first or offer a concession in order to meet the needs of all involved.

Money. Ugh. My son always costs people money. They don't like that.

But, money, safety and dignity are all things with which we struggle in these battles. This morning, I feel as though I lost that battle as I watched our son being placed into a harness before the "happy" little school bus backed out of the driveway and drove away on its "happy" little route.

I didn't feel so happy.

I cried. I felt as though I'd sold our son's dignity for the opponent's unwillingness to properly staff that bus. Doing so would cost more money. So, why not restrain him, right? Putting him in a harness so that he can't move around freely eliminates the problem, right?

I felt as though I had failed our son.

And while, yes, children must learn consequences of their behavior, particularly blatant defiant behavior such as our son's disorderly conduct, our level of consequences--those in the special needs world--don't include those used in mainstream society.

Instead of grounding him or taking away his cell phone, we're talking about things such as restraint.

My heart is broken.

I can appreciate the use of restraints with different children under different circumstances. I stand in judgment of no parent other than myself for allowing my own child to ride away today.

I'm sorry, buddy. I promise I won't do that to you again.



This entry was written in response to the letter prompt "H" in the A to Z Challenge April 2012.

27 comments:

  1. Harness, what kind of harness? My only thought is: why can't all the people on that bus make an agreement on NOT paying any attention on him lying on his belly? I mean, is it so awful? Would he lose interest in it if no one commented? And: Isn't it possible to let one person travel that way, on his belly? If I was a bus driver, I'd WANT TO come up with a creative idea. I just can't figure out why this is such a big deal. I mean, he is a boy with special needs, and one of those needs at the moment is travelling on his belly. Surely the other kids won't want to do that, too, so it shouldn't be that big of a problem. Or does his special urge to be on his belly 'cause bullying from the other kids?

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  2. Hanna, the harness is like a vest that fastens to the back of the seat in a way that he can't reach/unhook it himself. I had a picture of him in it from that morning, but I couldn't bring myself to post it. Some kids need these. For my child and in this circumstance, it was not the right decision. In answer to your question, I guess leaving him on his stomach is a safety issue as he would not be in a seat belt. He's on a small bus with only a couple other special needs kids. He wouldn't get teased. I think it is strictly a safety issue. Sigh.

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  3. Great post! I identify well with all your conflicting emotions.

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    1. Mostly just sad. Then I got mad. Then I made more phone calls than I can count to be sure that this child would NOT again have a harness placed on him. lol. Mommy wrath.

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  4. You description of your life at the top was just to mind boggling I had to read on. I so sympathise it is heartbreaking to watch out children being forced (sometimes, as you found, physically) to conform to behaviour norms imposed by others. You can't help but feel there has to be a different solution if people could be more creative.
    thanks for sharing
    martine

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    1. So well said. We as parents beg for creative thinkers. But resources are scarce. Children like mine also cost money. Resources are scarce. Advocacy is a constant effort.

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  5. I was thinking the same thing as Hanna..... Let him be. .....

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  6. The image of restraint is a difficult one to wrap our heads around (When my mild mannered mother was restrained after a brain injury - teh staff said for her own safety - it was incredibly distressing.We worked out a way that she didn't need to be finally.) Lying on his stomach - that is a safety issue. Having to restrain him instead of having the proper number of aides on the bus - that is an issue that can be fought. However, with so many battles you have to fight every day as you've said, it may become one that heads towards the bottom of the list. My heart goes out to you on this one.

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    1. Your experience with your mother can give you some idea of what I was feeling. Awful.

      And, btw, not at the bottom of my list. It's right there at the top. :)

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  7. i sympathize greatly with you---i have gone through many of the issues you have---my oldest daughter, who was severely handicapped had to travel on the school bus in a wheelchair--a chair that even the doctors said was not conducive for her situation---but it wasn't for long--because i started homeschooling her---much encouragement is sent you way :)

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    1. Thank you! I will gladly take the encouragement! I homeschooled our younger son last year. Our older son, however, needs more experienced people in his life to teach him. He's beyond me. I would homeschool our younger son again if needed.

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  8. I remember a friend of mine had a toddler who would occasionally bite. She would always put him down when he bit, so as not to reinforce the behavior with attention. That backfired on her one day, when she was in line at DMV and he wanted to get down, and no way was she letting him. So, he bit her.

    You know your child much better than any of us. But is it possible to present it to him as a choice?: You're going to be on the bus, and you're going to be riding with your butt on the seat. That's the rule for everybody. You can do it with this kind of seat belt, or with the yucky harness. You choose.

    It seems like, if he gets extra attention/persuasion to try to coax him off his tummy, or an aide to ride with him, or the option of staying off the bus altogether, he is perhaps getting too much power over an issue that he himself has indicated really isn't that important to him, except as it pushes everybody's buttons. How does his therapist suggest the situation be handled?

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    1. Thanks for your reply as I think it is helpful for others to understand the process of thought involved in this issue. Yes. This is how I was thinking when I let him walk out the door in that harness. But, then I realized my error. It was an error FOR THIS CHILD. Not for all.

      The standard applied when considering a setting for a special education student is that they are able to be successful with the least amount of restriction. Applied to the current situation, it did not make sense to go from a lap belt (least restrictive but unsuccessful) to a harness (most restrictive) without exploring what better supports could be put into place for him. I content that our son could be successful with a lap belt and the proper aide/prompts.

      After all, any parent in our shoes would want her child to be successful free of as many restrictions as possible.

      Thanks again for helping me explain that standard.

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  9. The last school bus I was on had no seat belts at all, that is equally as disturbing to me, as one that has restraints.

    I can see that laying on his stomach on the bus would seem to be a very low ranking annoyance; however, if it causes the other kids to get rambunctious, then it also becomes the root of a driver who might be distracted enough to risk the safety of all children on board (all people for that matter).

    Sometimes it is the way in which things are dealt with that are more important. The harness itself might well be a safety feature that can be accepted, and understood, how they implement the use of it is more important to me. If the rest of the children mock, laugh, taunt, or tease him because they "won" and now he has to be restrained, that is a sad state of affairs. If on the other hand, he is okay with it (not upset about getting on the bus) then perhaps it is a solution that will work.

    You could also transport him yourself (if time allows) and eliminate their input what-so-ever.

    "Special needs" covers a lot of ground, and it most certainly does not comply to the inherent rules of societies norms. Why they even expect it to is beyond me, but they do in some instances. The whole structure seems to be about moving them into a "normal" space. WHY? Is it possible that their differences are something we could learn from, grow with, adapt to...

    Okay... rant over, before I get too far down a path I cannot return from.

    I hope you have a better day.

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    1. Currently, I have another child at home who has developed a phobia of his school. I am trying to keep his home life calm and stable. Throwing him in the car to take his brother to school isn't working well with that. If that younger son visits his school, it usually conflicts with when I'd have to pick up older brother. So, darn it all, right now I'm having a bit of trouble being in two places at once.

      I also don't think that I should have to drive him given the right supports on the bus. Sigh. Back to meeting with the school district to iron this one out.

      I loved your last paragraph. Thanks for always commenting.

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  10. Oh my gosh, Amy. Thanks for sharing your feelings on this. On the one hand, I love your reaction to what the Speech Therapist was telling you! Your son has very definite ideas! Love it. And like you say about compromise, sometimes the compromise comes at a cost. My son wore a harness because the next step was not being able to safely transport him to school. And school is pretty important to what our kids know. We may not even KNOW what they know -- but you are making a difficult compromise in order to serve a larger issue (your son's education). Easy to say logically, but harder to know in your heart. You are doing great navigating territory that is uncharted. Try to always keep that in mind.

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    1. I know, those opinions were something, weren't they? lol! I do have faith that this child CAN ride the bus in a regular belt with the right support. I believe in him. However, I also recognize that it is a process. If we cross a bridge and something changes, perhaps I would have to pick different battles. This one, as I still maintain, is case and child specific. Harnesses serve a purpose for different kids in different situations. I hope I've said that enough so that it is clear that I am judging nobody.

      Thanks for sharing your experience. I really believe that people who visit here gain value from it.

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  11. Fish are fed.(faf from now on)
    Okay, this is crazy, just crazy to me. Safety first, yes, I agree with that. Now, how do we get him to WANT to sit with the seat belt on so that he can be safely transported. Someone must have the answer and I am thinking it is him. With the aid of this wonderful communications woman, maybe HE could come up with a good answer?
    No other options seem to exist outside of wear the seat belt and stay on your bum or wear the harness. Maybe he has another idea, excluding the belly riding, unless that seat belt can be around him while he belly rides. Safety issue resolved? Probably not.
    You just do what feels right for him because I believe you always have good instincts as to what will and will not be tolerated and in fact embraced by your very head strong and intelligent son. I can't help but think he has the answer or needs to be responsible for the final decision. ♥

    and lots of (((((hugs))))) because you need 'em and you totally deserve 'em.

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  12. Two things: First of all, oh yes, mama says there are options. That's why mamas advocate, right? I definitely think a one-to-one aide that is suited to him and proper prompts would work. However, brilliant idea about asking the speech therapist to get HIS input on deciding the proper prompts! Wonderful, and thank you!! Thank you, thank you, thank you!

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  13. I was wondering how he does in the family car? (Back to the "C.") We know he loves the car- car-car! If he does well there, can that situation be replicated for him on the bus? For example, quiet music or an IPad game that he is allowed to play only in the car? We allow our child to bring a favorite book on the bus and that has helped. Could the speech therapist write a social story for him about the bus? Perhaps he gets to read one special book but only on the bus - and he gets his "bus book" after he puts his selt belt on? AND, the social story can state that if the selt belt goes off, the book has to go away until the belt comes back on. How sad it is to see your son in a harness. Perhaps there is a creative solution. I hope your CSE committee works with you to come up with some strategies so this harness business doesn't have to continue. Regarding the bus aid, do you have input into who this person is? Can the speech person ride the bus to help access the situation? Has your transportation department been open to suggestions? It takes a village....Please keep us posted!

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    1. Hey, Anonymous: what is your name? You've posted here enough that you need an identity! And, yes, we've tried the books, fidget toys, etc. In the end, our son is doing it "just because".

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    2. Those bus seats look pretty inviting to lounge on, "just because" they look like a couch...We're all anonymous!!!

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  14. Oh dear, I think I would feel awful like you do..but like you I would almost smile at that little rebellious streak. I suppose you taking him to school yourself is completely out of the question. Although you could fight this treatment, they would surely have the safety issue on their side. I can't imagine what harm laying on his stomach would cause. Seems to me laying on his stomach is getting him loads of attention and he likes it. If it was only possible for the behavior to be ignored maybe he wouldn't find it so fun. I don't have any answers but I feel your frustration and your heartache. Many hugs to you. He is learning the consequences the hard way, and my heart aches for him and you.


    Kathy
    http://gigglingtruckerswife.blogspot.com/

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  15. If he were allowed to choose from a list of options (or add to the list himself), do you think he might agree to something that would sit well with the powers that be? Just a thought.

    Oh, and please don't be too hard on yourself. You, like all of us, make the best decisions you can make at every opportunity. This day, you choose this. Another day, you might choose something else. You can only do what you can do in each moment, truly.

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  16. I'm just going to send you a big cyber hug right now. And keep fighting, never stop fighting. You are a wonderful Mom, he is lucky to have you.

    And a big cheer for the few moments of normal despite the circumstances;)

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  17. I think my heart just sunk. Oh Amy, I'm in tears--I can't imagine how that must have felt--and at the same time--I can imagine it somewhat.

    I get the safety issue--but what about the saying "People first, disability second"? I'm so with you on the issue of dignity. I can't believe that they didn't offer a transportation service (around here there are several companies that have cars and mini-vans with the big ole "SCHOOL TRANSPORTATION" down both sides of the vehicle) that would help you get him there without such drastic measures. Our neighbor has one pick up her older son because he has issues on the bus --either the noise or the height of the bus bothers him. They've never been able to decipher. Anyway, in the transportation vehicle he is calm and rides like any normal passenger.

    Keep us posted. I'll keep saying a prayer. Sending virtual hugs your way. Keep fighting. It is what us Mom's do best!!

    Cheers, Jenn
    http://www.wine-n-chat.com

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