Advocating For My Son- My Lesson

As a parent, one of the things I consider my job, is to raise my son so that when he grows up and goes off into the world, he’ll have life skills and capabilities to not only survive, but to thrive and grow, while seeking and fulfilling his life’s purpose.

Along the way, I have to figure out when to “kick him in the butt” and “let him learn to take his lumps”, and when to give him big, supportive hugs and help his disordered brain get re-regulated. That is for Detective Mom to figure out. And I make mistakes and learn along the way.

After hearing my son “whine” about having to take the school bus, and “whine about how hard school is, and that he hates it”… for a few years, Detective Mom finally got a clue this past late winter, with the help of some wonderful professionals that were indeed sent from higher powers, to help me.

I had been pushing my son to ride the school bus, pushing him to do vision therapy homework, and pushing him to do school homework. He complained and whined and fussed and cried. He grabbed his head and cried that he didn’t know why it wouldn’t work right. Part of me wanted to hold him and tell him that it’s just a stage, and it will get better- to just hang on. And part of me wanted for him to be able to push through his difficulties and soldier on, so he would see that he could actually do it. And I went through both things, at different times.

When my son reached a point where he was so stressed-out by the thought of having to go to school, that he cried every night and wouldn’t let himself fall asleep at night (because it would just make the next school day come faster); and as soon as he woke up in the morning he would cry and not get out of bed, Detective Mom jumped into action. After all, if my son was having this much trouble at seven and eight years old, how long would it be before he was so defeated that I wouldn’t be able to get him to go to school at all?

One of my favorite expressions that I learned from Oprah (a Maya Angelou quote), is “When you know better, you do better.” Well, it took a Neurotherapist and a Psychologist to give me more insight into my son, his behaviors, and his capabilities, for me to know better.

With the evaluation of a wonderful Neurotherapist, I learned that my son’s sensory system had more going on than I realized. Part of this was because I pretty much treat him just as I would treat any other child of mine (if I had any other). And he is very good at not standing out in the crowd learning to cope as best he can, with a system that needs help being regulated. Yes, I know that he is tactile defensive. I know that he is very ticklish. What I didn’t realize, is that with such a sensitive sense of touch, when other kids in his classroom walk behind him and brush up against him (with no warning), this is very stressful to his body. If a classmate uses my seated son’s shoulder and head to help get themselves up from sitting on the floor- without asking or forwarning my son- this is stressful to my son.

With my son’s visual system working overtime to do all that is asked of it at school, this is another stress on his system, pushing it to disregulation. That same neurological evaluation helped me see just how much this visual processing weakness affects him (even after going through months of vision therapy). More than I knew.

Finally, even though I know my son has always freaked out when he hears a loud, unexpected noise (auditory processing issue), I didn’t know that when several sounds are happening around him at once, it is difficult for him to tune in to one specific sound. So, if his teacher is talking and he has classmates near him whispering, he can’t get what the teacher is saying. Or if the classroom has a noisy heater, it will make listening to the teacher more than a challenge. And these are things that are beyond his control.

When trying to listen to the teacher, and copy words off the board at the front of the class, and deal with the kid who occassionally kicks his chair, gets too much- he shuts down. He daydreams. His system says, “That’s it. I’m done for now.”

With knowing better, I’m trying to do better for my son. My lesson is that my son has actually been struggling more than I realized, and he needs to be de-stressed with regards to school. A wonderful Psychologist help me to see that my inability to get him to do homework after a day at school, is not because I’m doing something wrong. It’s because of expecting too much from my son at this time.

The first thing I did, was to relieve his stress of having to take the bus to school- that was a biggie. I drive him to school every day. He is able to handle the ride home, so he takes the bus home. I also stopped requiring him to do homework after school. I would ask him if he could sit with me and work on a paper. If he couldn’t, I respected that and I’d try again in the morning before school. Sometimes he gets work done in the morning.

I am also working on setting up accommodations for him at school:  having him sit in a place where he’s not in an area of high traffic, so kids won’t walk behind him, brushing against him. He also needs to sit where there aren’t a bunch of heads between him and the teacher (too distracting). He sits on an exercise ball instead of a chair, to help him get input his body needs. And he needs to not be able to lose recess. So far, these accommodations look like a done deal.

But, after a school meeting that I was not invited to (still kind of miffed as to why the one person who understands this kid more than anyone, was not there), I have seen a preliminary copy of my son’s official proposed accommodations. There is nothing on it that addresses problems that can crop up due to auditory processing issues. And there are simple things a teacher can do- that I presented on paper, weeks ago, to the person drafting these accommodations. There is also nothing on it that addresses his in ability to do homework.

I got the message loud and clear from the person who is writing the accommodations, that they are not willing to write in any more at this time. More than what was written, actually requires extra work from the teacher. As the plan is currently written, the teacher has no additional workload put on them. I, of course, can opt to not sign the paperwork.

Here I sit, trying to decide whether to write yet another letter requesting to add another simple accommodation that addresses my son’s difficulty with hearing and remembering directions, caused by his auditory issues. Or do I wait until September, and have a sit down meeting with his teacher, educating her about my son (which, I’ll most likely do in any case)? Letting her know that she will need to check in with him about directions, frequently. Letting her know that if he’s drifting off and daydreaming, that means he is shutting down (and will not be subjected to punishment). And letting her know that if she sees him bouncing up and down on the ball that he sits on, he’s trying to give his system needed input. I will also let her know that when it comes to homework, if he can to any, it will be done. But as long he’s overloaded and overwhelmed by his school day, homework won’t be happening.

One way or another, I will advocate for my son. Yes, I will dare to demand more of his teacher, the person who already has to deal with a large class, and has more and more responsibilities dumped on her each year. I will ask her to put a little bit more effort into working with my son. He needs it and deserves it. What people at school don’t appreciate is the work outside of school that is happening with him (a variety of therapies), that is helping him to change for the better. Work that will help make the difference so he won’t need these accommodations forever. He’ll show them!

Advertisements

About mariner2mother

I'm a mother of a very spirited 15 year old son, and a former merchant ship's deck officer. To feed my creative side I take photos. I am also Reiki attuned and am a student of Energy Healing, having used several healing modalities to work on myself and my family. Our most recent adventure has me homeschooling my teenager.
This entry was posted in Sensory Processing Disorder and tagged , , . Bookmark the permalink.

5 Responses to Advocating For My Son- My Lesson

  1. Lenore Diane says:

    M2M, I’m not sure what to say. My heart goes out to you – not because I think you need it, rather because I am humbled by your determination. Parents need to act as an advocate for their child/ren for various reasons and in various situations. But, not all parents step up. Well done for stepping up.

    Go ahead – write that second letter, if only because it is the only thing you can do at this point. (I don’t mean that negatively.) Just let them know you are there – you have a voice – and you’ll use it, because you are your son’s advocate.

    Good for you, M2M. ~ Lenore

  2. I have to say that I originally wrote this when I was in Momma Bear mode. As I let it sit while I mellowed a tiny bit, I did write a letter requesting one more accommodation that my son currently has, that I don’t want him to lose- to be able to use a fidget. Come September, when his stress ramps up, I want him to have this option.

    I also might have mentioned something to the effect of being surprised that I wasn’t invited to participate in any sort of team meeting. At this point, my feelings are that what is most important is to have a great summer, and then educate the heck out of my little man’s teacher in the fall.

  3. That would frustrate me to no end. Why weren’t you invited to the team meeting? That’s good you wrote another letter. Hopefully they’ll know to inform you of any upcoming meetings. I’ve never been a teacher, but I used to be a special ed tech and it’s commons sense that if there are any techniques that would help a student learn and be successful, there is no reason not to try them. You’d think that would be the main goal in any student’s academic life!

    Interesting about the bus ride. As you know my son has issues with sound. So we resorted to driving him to school each and every day. Not something I will be able to do this fall with both of us working. Sigh. When he is overwhelmed by sound he actually starts to shut down and withdraw and even cry. He used to come home off the bus crying and with horrible migraines as well.

    • Why wasn’t I invited to the team meeting? Hmm. Good question. I don’t know. I was told that the counsellor and little man’s teachers for this and for next year would get together and have a “Child Study” meeting. That is where parent’s are not invited. This school did this to me for his IEP as well. I might have been ok if there had been an OT at the meeting, or little man’s Neurotherapist. Don’t get me started.

      Part of the bus issue is that our stop in the morning is about the last stop before the bus gets to school, so it’s pretty full. Trying to find a seat when you think the bus driver is going to step on the gas any second (she’s a good driver, but a bit of a lead foot, and yells back to tell the kids to sit down), and there are so many kids already on the bus, was too much for my son. When I talked to her about saving him the front seat, she said yes. Well that lasted about a week until the kindergarteners started school. Then, the front seat would already have one little kid in it (or sometimes two). That was it. If the driver for this route ever changes, I may revisit having the front seat held for him and seeing if he’s game to try riding the bus again. We are very lucky that we live about 1/2 mile from the school. He’s ok with the ride home because they board the bus class by class (first graders first, etc.); and the engine is off when they board. And he’s the second stop coming home.

      If they had the front seat for your little man and he wore ear plugs or an iPod (oops! almost said Walkman- LOL!), do you think that would help him?

  4. Pingback: Happy 4th Blogiversary to Me! | Life Is A Journey… Not A Guided Tour

Share your thoughts.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s