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Untouchable Moments

February 8, 2014 By

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My son George has a thing about hair – specifically, my hair or, if I’m not available, hair that is similar to mine. For a while, whenever we went anywhere, we would have to deal with the problem of him going up to random strangers with long dark hair, and stroking them on the head. We saw the need to nip this in the bud as quickly as possible: it was cute when he was seven or eight, if it was still happening by the time he got to twelve or thirteen, it would be downright creepy.

We have more or less gotten that impulse under control. When we are out, George leaves strangers and their hair alone. But it is still a big problem at home. He obsessively touches my hair, kisses it, and nuzzles his face into it so he can smell it. And it’s – you know – quite a heavy-duty invasion of my personal space.

It’s a tricky problem to solve. My kids love physical contact, and my husband and I are happy to oblige them. We are generous with hugs and snuggles, we chase the kids and play wrestling games with them, and when the weather is nice we go into the back yard and play games like tag. And lately, because George seems to be incapable of touching me without touching my hair, I have caught myself avoiding physical contact with him, either by retreating to places where he cannot get me, or by gently pushing him away.

For a mom like me who’s always been into the hugs and cuddles, it’s a terrible feeling, not wanting my child to touch me. I feel guilty and sad. I want to hug my boy, but I don’t want the accompanying hair-stroking and sniffing that goes with it. Today I’m feeling particularly rough, because George was awake all night, and he was at my hair. All night long. And today, every nerve ending in my body feels on edge. I feel like I will scream if George or anyone else touches me. And I feel like a truly awful mother for declining hugs and insisting on doing things by myself.

I recognise that my hair fulfills some sensory need in George – some complex need that I don’t understand and that he, with his autism, finds it impossible to explain. I sometimes snap at him for being all over my hair all the time, and then I feel bad, because it’s not his fault. It’s not something he can help, and until we can figure out some other way for him to satisfy that sensory need, it’s not really something I can help either.

The obvious solution – one that has been suggested to me several times – would be for me to simply cut my hair. But I am loath to do that, for a number of reasons. Long hair is easy to maintain. Short hair requires styling, and I don’t have the money or the inclination to keep going to the hairdresser in order to look respectable. In addition, when it’s time for me to go running, it’s really easy for me to tie it all back in a ponytail. But all of this is beside the point: I just don’t know that cutting my hair would solve the problem.

I’m sure – or I hope – that this is one of those problems that we will solve, that we will look back on as a memory at some point in the future. For now, I seem to be stuck with my permanently aching scalp and what I hope is a reversible aversion to physical contact. I am hopeful that sooner rather than later, I will be able to fully enjoy hugging my beautiful boy again.

This is an original post by Kirsten Doyle. Photo credit to the author.

Filed Under: autism, Hair, Physical Contact, Sensory Issues Tagged With: , , , , , ,
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Autism: The Good, The Bad And The Ugly

November 28, 2012 By

When my firstborn son was first diagnosed with autism five years ago, the force of it all was like a kick in the head. I honestly did not know how I was going to live the rest of my life as an autism parent, especially with the doom-and-gloom picture that was presented to us by the diagnosing doctor.

But life has an uncanny way of continuing, no matter what. We adapt and survive, and sometimes we even manage to see the positives in a situation that is, by most people’s standards, less than ideal.

The Good

* Every moment of accomplishment is a cause for celebration. I have a true appreciation for what most people think are “the little things”.

* My son can problem-solve rings around the rest of us. His thinking is at times very effective while also being wayyyyy out of the box. It offers a whole new perspective on life.

* My two boys have a healthy amount of sibling rivalry going on, but they also have a great deal of love for each other. My younger son’s empathy and kindness toward his brother that has to be seen to be believed. It makes me well up with tears every time.

* Let’s face it, many kids with autism are computer geeks. And it’s very handy having a built-in computer geek.

* I believe that having a child with autism makes me a better and more patient parent.

* Kids with autism can have funny, quirky senses of humour that take you where you least expect to go.

* Hugs from kids with autism can be the absolute best.

The Bad

* When my child is trying with all his might to express something and doesn’t know how to, the look of frustration and desperation in his eyes is heartbreaking.

* Sometimes my younger son tells me that he wishes his brother didn’t have autism. There are no words to describe how that feels.

* Autism is unbelievably, phenomenally exhausting, and that’s just for me. I cannot imagine what it must sometimes be like for my son.

* There is a lot of frustration involved in advocating for my child in the school system. The vast majority of teachers are genuinely good and caring people who mean well, but a lot of them just don’t get it.

* I worry about my son’s future every single day. Will he ever be able to brush his teeth and take a shower independently? Will he ever learn to look both ways before crossing the street? Will he be bullied in high school? Will he be given the same opportunities as other kids? Will he be OK when, someday, I am no longer here?

The Ugly

* There are holes in the drywall from all the headbanging incidents. They are not pretty.

* We are frequently the targets of people who stare and say rude things. They are not pretty either.

* As much as I think that autism has made me a better parent, I am only human, and sometimes I lose it. Big-time. I slam things and scream like a banshee.

* Sometimes, I have to battle my son’s autism and my depression at the same time, and it’s such a battle. I teeter on the edge of these big black pits of despair, and it is absolutely terrifying.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Brothers, Children, family, National Health Blog Post Month, parenting, WEGO Health Tagged With: , , , , , , , , ,
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Ramblings From The Heart

July 8, 2012 By

It is a lazy Sunday morning and I am trying to keep things low-key. My husband, who almost never drinks alcohol, was out with friends last night, and he has a bit of a hangover that he is sleeping off. My younger son is watching TV and my older son is playing on his computer beside me. I am sipping coffee and seeing if anything interesting has been happening on Facebook while I’ve been sleeping.

It’s pleasantly peaceful. I feel as if all of the pieces of my life are in harmony.

My older son abandons his computer game and comes to stand beside me. He is tall for his age, one of those long lanky kids whose pants never seem to be long enough. I regard this child of mine, this beautiful boy with autism who some higher power has deemed me worthy to parent.

In his sweet, lyrical voice and odd way of speaking, he says, “Go give Mommy a hug.”

I hold out my arms and he clambers into my lap – something that I am going to treasure while he is still just not-too-big to do so. He wraps his arms around my neck, kisses me lightly on my hair, and rests his head on my shoulder. Although neither of us is saying a word, the communication between us is profound and special. Our world of two feels complete.

I am intensely aware of the weight of responsibility. As I hold my child in my arms, I feel as if I am holding his future. Everything I do counts: every word, every gesture, every action. All of the mistakes I make – and in parenting, there are bound to be some – can cause some erosion, some little breakdown somewhere in my child’s character. But all of the things I do right can build him up. I visualize this moment that I am sharing with him right now. I imagine it adding another layer to his confidence and sense of emotional well-being.

Although this beautiful moment will soon be over – already, I am starting to sense my son getting ready to move on to the next part of his day – its effects will last forever.

Sometimes, as I think about the immense role that I have in creating positive, productive and happy lives for my children, a part of me – the part ruled by self-doubt – asks, “Can I really do this? Am I worthy of having such responsibility for two human beings?”

And at moments like this, as my son gets off my lap and goes off in pursuit of some adventure that only he knows about, I can hear the Universe whisper back to me.

“Yes, you can do this. And yes, you are worthy.”

(Photo credit: Kirsten Doyle)

Filed Under: autism, Childhood, parenting Tagged With: , , , , , ,