post

Untouchable Moments

February 8, 2014 By

1779326_10152063776257779_1542408341_n

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: , , , , , ,
post

Autism and Oddities

November 10, 2012 By

We are a third of the way into the National Health Blog Post Month Challenge, and I have actually managed to post every day! Today’s prompt: LOL post – write about something funny.

Me and George

My son George – the one with autism – has a thing about my hair. He buries his nose deep into my hair and then gives an almighty sniff. His enjoyment of this activity is directly proportional to my absolute dislike for being on the receiving end. I can just about tolerate one or two sniffs, but when it happens on and on ad nauseum, I end up feeling so agitated that I want to rip my scalp off my head.

This morning it went on from 3:30 until 5:30. And even then it didn’t stop – indeed, the hair-sniffing was accompanied by both boys and my husband bouncing off the ceiling, telling jokes, wrestling with each other and singing funny little songs, all while I was trying to sleep. At about 7:00 I reached the point of being too wound up to sleep in spite of being utterly exhausted. I had to deposit a cheque, so I got dressed and left. I was so tired that I drove to the wrong bank’s ATM. Not only that – I actually inserted my card into the machine, and it only when I was presented with an unfamiliar-looking PIN entry screen that I realized something was not quite right.

Kids with autism are known for having quirky little habits, like George’s hair-sniffing thing. While the hair-sniffing has been going on for some time, it has recently been paired with him blowing in my face. Sniff-blow. Sniff-blow. Sniff-sniff-blow.

Dear Lord, give me strength.

My friend Lesa’s son is another kid who has both autism and a strange habit. He is into elbows. He will grab the skin of someone’s elbow and twist it, and if the recipient is clued-in enough to stop him on time, he satisfies himself with a “drive-by lick”. It drives his parents crazy but at the same time makes them chuckle, just as George’s hair-sniffing thing tickles me just a tiny bit. Because as annoying as these habits may be, they are kind of funny.

Amy, another fellow autism mom, describes how her son watches movies. Instead of watching a DVD from beginning to end like most of us, he gets stuck on specific scenes, like a cat falling out of a tree, and replays them over and over. His family goes up the wall, thinking, “Just play the damn movie, already!” but the sound of his laughter makes them incredibly happy.

I can identify with that. George has a habit of repeatedly saying, “Daddy loves Albert!”, and sometimes it gets a bit much, but it is such a small price to pay for the laughter that follows. Just for the record, I have no idea who Albert is.

It is easy to believe that these little quirks are a result of autism, but is that really the case? Or do we all have our odd mannerisms? Granted, most people don’t go around sniffing hair or licking elbows, but perhaps we all have our “thing”. I mean, whenever I walk anywhere, the number of steps I take has to be a multiple of four. Whether I’m walking to the bathroom, down the street or around the block, I mentally count off my steps in fours. I have mastered the art of doing this while having a conversation. When I get to my destination, I will take one, two or three steps in place if necessary, just to get to my multiple of four.

Do you explain away your child’s odd habits with autism or some other condition? What quirks do you and members of your family have?

(Photo credit: Kirsten Doyle)

Filed Under: autism, Habits, Hair, National Health Blog Post Month, WEGO Health Tagged With: , , , ,
post

Things Are Getting Hairy

April 19, 2011 By

You know that your wedding planning is entering its final stages when you start using Flight Tracker to see where in their journeys your out-of-town guests are. As I type this, my Mom and my brother are en route from Johannesburg to New York (a brutal flight that keeps you cooped up in a plane for 18 hours – I do not envy them). I will see my Mom on Thursday; my brother will arrive in Toronto from New York next week.

Things are coming together. There is still a lot to be done – so much so that thinking about my to-do list puts a knot of anxiety in the pit of my stomach – but most of the little crises that have arisen have been resolved.

I have not had a nervous breakdown. I came close last week, though.

It was all about the hair. I had booked a hairdresser to come to my house and do hair for myself, my maid-of-honour, the bridesmaid and the flower girl. To be fair, the hairdresser had told me ahead of time that school commitments might get in the way and we might have to make other arrangements. That was a chance I took when I booked her. And sure enough, she called me a short time later and told me that she would not be able to help out.

I got in touch with another hairdresser, one whose rates seemed reasonable. The problem was that every time I spoke to the guy there, I was given a different quote. Each quote was progressively higher than the previous one. Eventually Gerard spoke to the guy, and he was given a much higher price than anything I had been told.

It was clear that we could not use this hairdresser. At this rate, we’d have to sell our house to pay him by the time the day of the wedding arrived. What this meant, though, was that with two weeks to go, I still had no hairdresser.

Any woman would agree that hair is kind of important on a wedding day.

I lost it. I started to have this weird little meltdown, ranting to anyone who would listen about how I was never going to find someone to do my hair, and how I would have to persuade my makeup artist to wing it and do it for me (this was before the makeup artist bailed on me with no warning).

Gerard was trying to calm me down but I was just so stressed. I was making these high-piched supersonic noises that only dogs can hear.

Gradually, the pitch of my voice lowered enough for my noises to loosely resemble speech. I was tearfully saying stuff like, “My hair is very important, you know.”

Gerard, in a kindly and patient tone, said, “Of course it is.”

I think he was doing that thing where you agree with everything a hysterical person is saying, no matter what. I could have said that mulberry trees were falling out of the sky, and he would have agreed with me.

In the end, Gerard told me not to worry about it. He said he had a plan to make it all better.

Sometimes, when Gerard tells me not to worry, I have the sense to trust him. This was one of those occasions. And true to his word, by the time I got home from work the following day, he had found and spoken to a hairdresser. The day was saved. Relative peace could reign once more.

Despite earlier threats to shave my head and put a tattoo of a butterfly on my scalp, I will be able to walk down the aisle with beautifully styled hair.

It’s a good thing. That tattoo would have hurt.

(Photo credit: http://www.flickr.com/photos/25559122@N06/3811393733/)

Filed Under: family, Hair, Wedding Tagged With: , , , , , , , , , , , , ,
post

Hat Boy

February 22, 2011 By

Me and my Hat Boy

George has a thing about hats. He wears them all the time, even when he goes to bed. We have succeeded in getting him to take it off at bathtime, and both the school and the therapy centre have him remove it for his periods of instruction. But when he is at home, the hat is always on his head.

It’s not just any old hat, either. George is very picky about his hats – he will only wear his hat, and if his hat is not available, things in my household get very noisy and fraught as we struggle to keep him from banging his head in frustration. From time to time we have to switch out the old hat for a new one, because – well, you know – George is seven, and seven-year-olds have this habit of growing really fast.

The “new hat days” are traumatic for the entire family, so we tend to hold on to the current hat until the seams start to pop.

However, with age comes wisdom, and we have learned that whenever it’s time for a new hat, we have to get two that are the same. That way, when one starts smelling a bit ripe, we can throw it into the washing machine and let George wear the other one.

We suspect that George wears the hat to gain that slight feeling of pressure around his head. Kids with autism are frequently big on physical pressure, and George definitely falls into that category. He climbs onto the back of the couch and jumps from there onto the floor, because he craves the deep pressure input to his feet and legs. It would make sense for him to want pressure around his head as well.

In addition, though, I think George wears the hat in order to protect his head from being touched. He really, really, REALLY does not like people touching his head. He allows me to remove his hat and stroke his head, or run my fingers through his hair, but after just a few seconds he gets antsy and squirms away.

This is a problem.

For a start, there’s the practical problem of hair-washing. I don’t wash George’s hair as often as I should, because it is just so stressful for him. Hair-washing is a joint effort between me and Gerard, and it has to be planned with military precision, right down to getting my mother-in-law to whisk James away for the duration. Basically, what happens is that I wait until George isn’t watching, and then I fill a plastic basin with water and lay a shower curtain on the kitchen floor. Then Gerard uses his arms and legs to immobilize a screaming George, and I wash his hair as quickly as humanly possible.

It sounds barbaric, and I always feel so bad that I end up in floods of tears, but it is the only way we can wash his hair.

When people hear of the difficulties, they say to me, “Just keep his hair short”. If only it were that simple. This kid won’t let us wash his hair normally – why would anyone assume that he will let us anywhere near him with a pair of scissors or any other haircutting device?

Cutting his hair is as traumatic as washing it. So what I have to do is creep around my own house in the dark like a burglar, gingerly remove George’ s hat from his head, and then tentatively cut whatever bits of it that I can reach while he is sleeping. Sometimes it takes up to two weeks to complete a haircut because George tends to lie down the same way every night.

We may be making progress, though, thanks to the wonderful folks at the therapy centre that George spends four mornings a week at.

The therapists had me complete a sensitivity questionaire, describing the issues with washing and cutting his hair, and two weeks ago they started a desensitization program. This morning George’s therapy supervisor called me to give me an update.

“We combed his hair,” she said.

“What, ALL of it?” I asked, incredulously. Usually my hair-combing attempts have to be aborted, so each day I start on a different side of his head, just to ensure full coverage every two days.

“All of it,” said the supervisor. She went on to tell me that she had put ear-muffs on George, and that this seemed to help with the sensitivity around his ears.

“He kept on ear-muffs?” I asked. Not sounding very intelligent at this point. Think Village Idiot.

“AND,” continued the supervisor, “We have sprayed his entire head with leave-in conditioner.”

Holy bat, Crapman! Who is this short person and what has he done with my son?

So, it would appear that the desensitization program is working like a charm. It will still be a long time before we can actually wash his hair normally, or cut it while he is awake, but with baby-steps, we will get there.

The staff at the therapy centre are absolutely incredible. Thanks to them, George will be ready for discharge into full-time school (with special ed support) by September.

He might be ready.

Me, not so much.

Filed Under: autism, Hair, Sensory Issues Tagged With: , , , , , , , , , ,