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If He Didn’t Have Autism…

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The boy plops down beside me on the couch and puts his hand on top of my head. He is preoccupied with my hair, to the extent that my lengthy locks have to spend most of the time living in a scrunched-up knot. Today, however, my hair is down, and the boy is making the most of the opportunities this provides.

As he runs his fingers through my hair, sometimes twirling, sometimes tugging a little, a thought runs unbidden through my mind.

If he didn’t have autism, who would he be? What would he like to do? Who would he play with? What summer activities would he ask to be signed up for?

Almost instantly, the thought is gone. I realize that it doesn’t matter. He is who he is. He is himself. He likes to play on his computer, assemble endless Mr. Potato Heads, and read his Biff and Chip books. He loves his family and enjoys playing with his little brother until the party gets rough. When he needs downtime, he’ll take a blanket and pillow outside and lie down on the back lawn. He likes junk food as much as the next kid, and he can go through endless quantities of milk. He’s not big on watching TV, but he loves going to the water park. He plots world domination with his brother and doesn’t always listen to me.

In other words, he is a kid with likes and dislikes, odd little quirks, and attachments to the people he loves. Just like anyone else.

Autism is a part of who he is, but it does not define him. If he didn’t have autism, he would be himself, just the way he is now. Maybe he would be a more social, verbal version of himself. Maybe he would play with other kids and be in a sports team. Or maybe he wouldn’t. It doesn’t matter. Asking myself what he would be like if he didn’t have autism is as pointless as asking what his brother would be like if he did have autism.

As he sits on the couch playing with my hair, I look over at him. He has a dreamy look in his eyes and a winning smile on his face.

He is himself. He is happy.

He is mine.

(Photo credit: Kirsten Doyle. This is an original post by Kirsten Doyle.)

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Things Are Getting Hairy

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/)

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Wedding Planning Worries

I have discovered an odd parallel between wedding planning and parenting. With both, you always have something to worry about, but the particular worries change and evolve depending on what stage you are in.

For instance, I look back on the day I first brought George home from the hospital. There I was, a new Mom with this ridiculously small human being who looked so fragile. I was terrified that I’d break him, that something bad would happen just because I didn’t have a clue what I was doing.

When it became apparent that I actually had the ability to keep him alive, I started worrying about different things. Was he sleeping enough? Was I feeding him the right stuff? What did that rash on his face mean? How did I know whether or not to worry about a fever?

Then James came along and brought with him a whole new set of worries. Now, I worry about stuff like sibling relationships, whether the boys are happy at school, and how to keep up with the fact that they seem to outgrow their shoes within the first ten minutes of owning them.

A year from now, I will no doubt be stressing about something else.

It’s been much the same with my wedding planning.

Right in the beginning, I was focused on getting the reception hall booked. I figured that as long as we had a place to party, nothing else would really matter. It took us a long time to commit to a hall, and throughout the whole selection process I was stressed to the hilt and being pulled in different directions by different people who wanted different things.

The moment we paid the deposit on the hall, a weight lifted from my mind. But soon another one settled there: the weight regarding my dress. A long story, the dress was. It involved a promise from my soon-to-be mother-in-law to make it, a retraction of said promise, and an argument before the promise was reinstated. There were discussions about whether or not I would wear a veil, and these discussions were more heated than one might expect.  Eventually, my wishes prevailed (and why shouldn’t they?) and it is now known by all concerned that I will not be wearing a veil.

Then I started to panic about the shoes. I had to go on several shoe-shopping trips, and I hated every one of them, because – well, I hate shoe-shopping. Just as I was starting to think that I would have to wear my battered running shoes to my wedding, I found a pair of shoes that I love.

Okay. Deep, soothing breaths.

When the shoes were sorted, it was time to worry about the guest list and the invitations. This caused me no end of stress. Initially I was going to keep it simple. I got plain but elegant stationery to print the invitations on, I had the invitations designed and I was just about to print them when…

…the hub-to-be announced that we should have a theme for the wedding.

It’s a great theme, I have to confess. I’m glad we’re going with it. But it meant that we had to change what we were doing with the invitations, and as a result they went out ten days later than I would have liked. But they went out, and all credit to Gerard, they are really nice.

We have a makeup person.

We have a DJ.

Everyone’s clothing has been sorted out.

Now, I guess because I actually have the time to worry about it, I have a new worry.

Who is going to do my hair?

I already know what my next worry after this one will be, but for now, I’m going to focus on the hair.

I can only worry about one wedding-related thing at a time, otherwise my head might just implode.

(Photo credit: http://www.flickr.com/photos/saffy_suppi/4958417528)

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Eight Weeks To Go? Really???

When Gerard and I first got engaged, everything wedding-related seemed a little abstract. It was more real than it had been before, obviously, since it was something that was actually going to happen. But it was happening far enough in the future for me have a somewhat lackadaisical attitude about it all. There was no rush and no stress. We were talking about something that was happening seventeen months away.

I watched those wedding planning shows on TV, shows like Rich Bride, Poor Bride and Wedding SOS, and I smugly thought about how my wedding planning would never be as fraught with stress as the wedding featured in those shows.

Now, with precisely eight weeks to go until my wedding, my smugness is sticking in my craw, threatening to choke me.

There is a lot to be done. A scary amount of stuff. The dress is almost complete, the bridesmaids dresses have been ordered, and the church and the reception hall have been booked. Apart from a couple of other minor details like my shoes and my makeup person, that’s pretty much all that’s actually under control.

We finished the guest list last night. Invitations are being printed this weekend and will go out on Monday.

Starting this week, we will be attending mandatory pre-marriage counseling.

Gerard and his groomsmen have to figure out what they’re wearing.

I have to send photos to the person who’s making our cake so she can give me a quote.

Flowers, decor, and guest favours have to be arranged.

I need to confirm a hairdresser.

Transportation has to be sorted out.

The DJ and photographer has to be booked.

We need to decide who the Master of Ceremonies will be.

The rehearsal dinner has to be planned.

And more.

It’s an awful lot of activity to fit into eight weeks.

And so, this weekend, wedding planning has suddenly kicked into full-gear. Out of the blue, Gerard has started voicing opinions about the wedding, and he’s coming up with really great ideas. We have most of the wedding party coming over tomorrow to help us with tasks and ideas. Task lists are being made, ones that have actual deadline dates on them. Our first song has been decided.

Things are happening and a bride-to-be is stressing out.

Somehow, it will happen.

Somehow, we will create a wedding that will, for all the right reasons, be a day to remember.

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Hat Boy

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.

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Things that go snip-snip in the night

I felt very weird last night, sneaking around my in my own house in the dark, hiding not one, but two pairs of scissors behind my back. I was dressed like a burglar: black shirt, black pants – both tight-fitting to avoid the tell-tale sound of rustling clothing.  In the interests of being as quiet as possible, I was in my stockinged feet.  I could not risk turning the lights on: I had to rely solely on the moonlight coming in through the open window.  I would have worn a balaclava, but since all I was doing was cutting my son’s hair, that probably would have been overkill.

Like most children with autism, George has sensory issues.  He cannot tolerate wearing shirts with collars. He will not eat something if he doesn’t know how it will feel in his mouth.  He stims by running around manically and jumping, jumping, jumping, to send as much deep pressure as possible through his body.  When he’s upset he tries to calm himself by banging his head (not something we allow, for obvious reasons).  He wore pull-ups for about a year after he was toilet-trained because he liked the way they felt.

And he wears a hat.  I suspect that the hat serves a dual purpose.  It creates a slight feeling of pressure around his head that gives him a sense of security, and it discourages people from touching his head.  Now, George doesn’t mind being touched.  He enjoys exchanging hugs with people he trusts, and he seeks the kind of games where you chase him, wrestle him to the floor, and tickle him.  He is always asking me or his Dad to scratch his back.  But he hates having his head touched.  His reaction to being touched on the head ranges from quiet but unmistakable discomfort (for light fleeting pats on the head) to out-and-out screaming, kicking panic (for hair-washing and haircuts).

I have a confession to make: I don’t brush my son’s hair.  I have so many other battles to contend with where his hair is concerned, and frankly, I don’t want him to start every day on such a negative note.  I know that the day will come when I will have to revise this policy, but for now my focus has to be on helping him overcome this issue he has. I cannot just go in with hairbrush a-blazin’ and expect him to be OK with it.  Fortunately, his hair has lost much of its toddlerhood curl and tendency to tangle, so he can get away with it not being brushed.  Besides, the ever-present hat tends to flatten the hair into submission.

However, George’s hair is still somewhat unruly.  The unruliness combined with the fact that I cannot give him proper deep, scalp-massaging hair-washes (hairwashing – a regular event that is fraught with trauma for the entire family) means that George’s hair has to be cut fairly frequently.  But since the sight of scissors coming anywhere near his head would send him into a state that he wouldn’t recover from for weeks, I have to cut his hair at night, when he is asleep.

Hence the dramatic sneaking-around-with-scissors behaviour.  When George goes to bed, I have to wait until he is in a deep sleep.  I have to make myself as invisible as possible, so he doesn’t hear, see or feel my presence.  I sneak silently up to his bed and reassure myself that yes, he is asleep, and that no, he probably won’t wake up anytime soon.  I swoop in – silently, of course – and cut whichever bits of hair I have easy access to.  Between cuts, the scissors are hidden.  I cannot take a chance on George waking up and seeing me there with scissors.  It sometimes takes up to a week to complete a haircut, because what I can do is completely dependant on how George is lying.  So the poor kid invariably spends a few days with his hair looking a bit patchy.

If the haircutting for the night has gone well, I don’t stop there.  I put down the haircutting scissors and pick up the second pair of scissors that I have brought along for the excursion.  I pick up one of George’s hands and experimentally run my finger along his nails.  If he stirs, I leave well enough alone – it is a sign that his sleep is not deep enough for me to proceed.  If he doesn’t react, I pick the longest nails and cut them – another task that George will not tolerate during his waking hours (I suspect that this stems from a babyhood incident in which I accidentally nicked one of his fingers).  Like the haircutting, it can take several days to cut George’s full set of fingernails.  Fortunately, I never have to bother with the toenails – George has the same brittle toenails that I do; they break off during regular day-to-day activity.

Someday all of George’s personal grooming tasks will be done during daylight hours, without any subterfuge on my part.  Getting there will take time, though.  It will require gentle desensitization, social stories, a regimen of reinforcements and rewards.  And lots of patience.

And love.  Never forget the love.