Wednesday, June 4, 2014

When You Don't Fit Outside the Box

"He's clearly A-Typical in many ways.  Just not in the ways we are used to."

We've been hearing the same line for 3 years.

"There's something up, but it doesn't quite fit."

"We want to offer a diagnosis, but there's too much he doesn't do and too much he does."

"We know it's frustrating, but he just doesn't check all the right boxes."

Right now, my house looks a little like my heart.

Disheveled and a little grimy, the floor has a new throw rug of dog hair and if I'm starting to feel like the hygienic answer to using my bathroom at the moment would be to put down toilet paper over the seat before I sit down.

 Balancing work with my kids, especially when Dh is away, is a little precarious on the best day, but this week we are in the middle of long awaited psychologist assessments with my youngest and I've reached the point where the mental energy required is starting to effect my physical ability to not fall asleep in the 10 minutes between kids home time, dinner and out the door for Jiu Jitsu.

Naively, I was hoping for answers.

It seems like lately the number of people on my social media and daily life outside the Internet who have identified their child as Autistic is growing constantly.

And in what is possibly the most terribly short sighted and evil admission I will ever speak on my own parenting, I'm almost jealous of them.

Because we talk about Autism.

We don't talk about unusual, undiagnosed A-Typical behavior.

Monster has many autistic tendencies.  Chances are he may well end up with a diagnosis in that direction.

In most ways, though, he does things 'normally', whatever that means.  And so it's just not as clear as it should be.

Monster also struggles with compulsions around personal boundaries.  He acts out with inappropriate touch in the kind of way that will be significantly more concerning when he is a little older.  He doesn't seem to understand what isn't acceptable when it comes to ours and other's bodies.  And that has merited the attention of those around him enough that we have found ourselves here, with assessments and case workers and psychology appointments.

And I know, I KNOW, that I am dancing around the subject like I don't want to say the words and that's not like me.
If we were talking about me, I'd be fine with screaming from the rooftop 'look at the ways I'm effed up!  Check it out I wrote all about it!' because that's who I am.

But that's not who Monster is.  Or maybe it is.  But that's not up to me.

What is up to me is being honest for other mommies who might be like me.
If there are any mommies like me out there.

We don't talk about this.  We don't talk about going to the school to speak to the principal, not because you are concerned with another child, but because you need to warn her about your own.

Or when you find out the lack of response to invitations sent to kids is because some of the parents have shared with others and it seems your child may be on a black list for play dates.



When your child's diagnosis has no puzzle-shaped visual and is not necessarily wrapped in a purple ribbon, when it's not anxiety or depression and instead more taboo, there's still a shame attached to dealing with mental health in children.

As though the answer is for me to keep him from others.  Or to simply tell him that those behaviours are not OK.

As though I haven't tried asking, pleading, lecturing, screaming and crying already.

I have been desperate, hoping she would see something in him that would offer a glimpse as to what makes him special, if only so I could know how to parent him the best way I can.

But I was really saying something else to him -

If you step outside the box there's a place you are supposed to land.  You can only go there and nowhere else.

My son, he was beautifully and wonderfully made.  Knit together by his creator and he. is. loved.

I'm tired of pretending that it's easy to be the parent that frets about her child being alone with others.
I'm always confused and unsure about what is normal and what isn't.
I'm embarassed to still be secretly hoping there's a simpler answer.

I'm exhausted from crying in the car after I drop him off because when I buckled him in he asked 'why did God decide to make me this way? You know, this *weird* way?'

Oh, my love, we're all a little weird.

Some of us need help learning to adjust our behavior so that we can function in a world that includes people who aren't like us.

I used to think it was only Monster who needed that help.

But that would be short-sighted from the mom who has secretly hoped for the label that everyone would understand so that it would make my life easier. 

If anyone needs help learning to adjust for people who fit outside the box differently than I think they should, it's me.





7 comments:

  1. Oh you poor darling. That is so tough. I have no advice, not words of wisdom. Just lots of sympathy and ((((((hugs)))))) I wish I could give them in person and offer you a shoulder to cry on. You're doing an amazing job parenting little Monster. You're a wonderful mum.

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  2. Through my tears, I have to say just that we love you and we love Monster very, very, much.

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  3. He *IS* beautifully and wonderfully made. I rather enjoy being around him. And you are an incredible mom. One that I admire greatly.

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    1. Youare so wonderful, Jordin. Thank you

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  4. I feel your pain, my son has a diagnosis of autism but doesn't have all the signs that you usually see. We've started ABA therapy and that seems to help, maybe ask about that next time you see your doctor?

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    1. Thanks! In order to qualify for ABA here I need a diagnosis, so here's hoping :)

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