Not My Story

If you’ve been reading me for a long time, you’ve probably noticed that I post a lot less about E. these days.

Partly this is because of lack of time. I post less about everything these days and my Google Doc file of “potential blog posts” keeps getting longer and longer.

Mostly it’s because I’ve decided that E.’s life is not mine to share.

When he was a baby, his life and my life were intertwined. Writing about learning how to be a mother meant writing about what he was doing.

He’s six now.

He’s a big little kid (or a little big kid depending on how you look at it).

He has his own thoughts, wishes, dreams, plans, questions, and opinions (this child is NEVER short of opinions).

Writing about him without his permission feels like a violation of his privacy, but he’s too young to be able to give me permission to tell a story- he wouldn’t truly understand what giving me permission means and what the ramifications are of something being published online (he’s desperate to be able to put “how-to” videos on YouTube when he makes, say, a conveyor belt out of toilet paper rolls and old linens, and can’t understand why I keep saying no).

The problem is, I desperately need someone to talk to about him, and (as I said recently) I don’t have the right kind of friend nearby.

E. is not easy to parent.

I know all kids have their challenges, but I also honestly believe that some kids are harder work than others.

Nothing drove this home more than chatting with one mum after school one day when she told me that the teacher had called her about her daughter. “That’s the first phone call I’ve had from the school about any one of my kids,” she said (she has three- the eldest is in grade four). “I guess one of them had to be the rebel.”

At the time, I was right in the middle of a months-long stretch where I touched base with E.’s teacher (bless her) every single day after school. We talked with E. about what went well, what hadn’t gone well, and what we could do to make things better the next day.

I went home after that conversation and cried.

I feel like most of this past school year has been spent trying to figure out what is going on in E’s head.

I’ve been to eight appointments (not counting follow up discussions with his regular doctor) with three different specialists.

His teacher and I have filled out questionnaire after questionnaire.

I have spent hours Googling, even when I know I should NOT be Googling.

The end result is that the developmental paediatrician thinks that E. probably does have something going on. It’s mild enough that for now we’ve avoided a formal diagnosis (because E. has made huge strides in the areas where we were concerned over this past school year), but we’ll revisit this in a year’s time as the demands of Grade One are going to be much heavier.

I don’t like labels.

I especially don’t like the label that the developmental paediatrician thinks probably applies to E. because it brings with it a lot of assumptions for a lot of people, assumptions which, for the most part, are not applicable to my son.

At the same time, if E. does need more support to be able to thrive in the school environment, and a label is required for him to become eligible for said support, then I will do whatever is necessary to make sure my child gets what he needs.

It’s hard though.

I’ve cried a lot in the last couple of weeks.

It is hard to think that my beautiful boy’s brain is likely to make it harder for him to cope with school (and with life) than it will be for his peers.

It is hard to realize that I have many, many more meetings with teachers ahead of me, that the school may not be able to look past the other stuff to see what he is capable of (and he is so incredibly bright, so capable, so curious).

It is hard to think of myself as a special needs mum, even as I recognize that I am his first and best advocate.

It is hard not to be scared of what the future will bring, especially if you start Googling.

It is hard to know that P. will be at a much higher risk for the same thing and to also know that it will likely be years before we will be able to tell whether her brain is wired like her brother’s or not.

It is hard not to think that this is somehow my fault, that I have done something wrong somewhere along the line to cause this (even as I read over and over again that it is not my fault).

It is hard not to feel guilty that he was five before we put in the paperwork to start asking questions, that we didn’t investigate earlier, that I kept telling my gut to be quiet when it whispered that something was going on, that I thought he would grow out of it or that he just needed more time to adjust.

In my heart, I know that E. is going to be fine in the long run.

Scratch that.

He’s going to be more than fine.

He’s going to be amazing.

P. too.

But the road to get there just got a lot rockier.

And I wish I had someone to talk to about it.

 

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4 Comments

Filed under Anxiety Overload, Brave New (School) World, E.- the seventh year, Grief

4 responses to “Not My Story

  1. I’m so sorry you’re dealing with all this. Long shot, but is there maybe a support group in your area? And yes, he will be amazing!

  2. I can relate on some level, as we’re just coming out of homeschooling kindergarten and we’re looking at putting Isaac into our local school for first grade…and it is very tricky. We’ve got diagnoses of Lyme, sensory regulation problems, fine motor delays, constructional and ideational apraxia, and possible PANDAS. We’re notifying the county of our need for an IEP (individualized education plan) but it takes months to develop, so in the meantime we’re continuing homeschooling and receiving all the therapies he needs on our own dime. It’s hard to see him not be able to handle certain situations or do other things that kids his age can do, and we do worry about his future. If you need to email me and chat, please do. It can be really isolating to parent a kid who isn’t “typical”. ((hugs))

  3. Jill

    I’m sorry that you are going through this, though E is lucky to have you in his corner! I, too, lack close friendships where I feel I can talk to someone about something like this. My youngest son had a hypospadius repair in the fall. It was surgery, but since it had to do with his penis, I felt it wasn’t my story to share with just anyone, so it meant I felt somewhat isolated in dealing with it all.
    Please know, on those tough days when you feel alone, that this Internet stranger is thinking of you

  4. I’m so sorry that you are feeling alone and unable to talk about what is going on with E with anyone. Maybe you can try searching for a Facebook group for whatever is going on? Is there a school support group for parents of special needs kids?

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