Autism Parenting: The End Of An Era

2012-09-24 23.02.15

Three nights ago, I made the excruciating decision to kick my children out of bed. My bed, that is.

To give a bit of background, my kids have always had full and free access to me, at any time of the day or night. When they have woken up in the middle of the night having had a bad dream, or feeling sick or lonely, they have been allowed to get into bed with me and snuggle up. It’s not always comfortable, being squished on both sides by children, but I have always loved it. Because what is better than hugs from your children?

As much as I love it, though, there are downsides. For one thing, my children take up an inordinate amount of space in the bed for such small people. It’s like they morph into starfish at night, and there are arms and legs everywhere, squashing my face and poking into my spine. For another thing, these little people are getting less little. George, who is ten, has reached the same height as my mother-in-law (OK, so she’s a little old lady, but still), and eight-year-old James is getting there as well.

What this means is that these nocturnal cuddles are costing me an enormous amount of sleep, and that makes it difficult for me to both function and be a human being that other people want to be around. In addition to that, George has started showing signs of puberty, and my husband and I have been feeling the need to carve out more time with each other.

We have reluctantly agreed that it is time for the kids to stay in their own beds at night.

James has accepted this with ease, but for George it is a massive change. Kids with autism do not appreciate it when the boat is rocked, and this particular change represents a tidal wave for him. It has been difficult for him, and by extension, difficult for us.

For the first two nights, James was the only person who got any sleep. My husband and I would lie helplessly in our bed, listening to George’s plaintive pleadings. He kept wandering into our room, and I kept taking him back to his own bed. I would get him settled, tuck him in and give him a kiss, and then go back to bed. And then I would do it again. And again, and again, and again.

While all of this was going on, George was whimpering, “I want Mommy. Lie down with Mommy in the bed.” And then, as he got sadder and sadder, he was simply calling my name.

I so badly wanted to cave. I so badly wanted to go to him, lie down with him and wrap my arms around him. But I knew that I couldn’t. In order to make this change, we would have to be persistent and patient, gentle and firm. We would have to just lie in bed and listen to our child being sad.


Last night – the third night – we caught a break. George went to sleep in his own bed, and he stayed there for the whole night. There was not so much as a whimper, not the slightest bit of movement. As much as I like to think that this represented an acceptance of the changes, I am realistic enough to know that the poor child was probably just too exhausted to protest. We may be in for another few nights of sleeplessness, and we will deal with it for as long as we need to.

As parents, it is our responsibility to guide our children towards independence, and this is an important step in that direction, even if, at the end of the day, it is harder for me than it is for them.

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



Back To School Musings Of An Autism Mom

George writing words

A week from now, the kids will be going back to school, and I’m not sure whether to jump for joy or quiver with worry.

On the one hand, the kids being back in school will mean more time for me. Being home with them for the summer was a circumstance that I found myself in due to my unexpected unemployment, and it’s been quite a revelation. I have enjoyed it, but I do have new respect for stay-at-home moms – especially those who homeschool their kids. I am looking forward to being able to spend time by myself to focus on my job search efforts.

On the other hand, back-to-school time is always a bit of an ordeal for my older son George. After two months at home, his school routine has gone completely out the window. He has to relearn the whole process of getting up at a certain time, getting onto a school bus and being expected to spend each day in the classroom. For most kids – like my younger son – this represents a resumption of an already known routine. But for kids with autism, it’s like starting a whole new routine all over again.

Autism and new routines go together about as well as tuna and chocolate syrup. In addition to the daytime disruptions, George goes through insomnia while he’s adjusting to the transition. Which means we’re in for about six weeks of not sleeping.

With George going into 5th grade, this is old hat to us. We do whatever preparation we can. We use social stories, drive through the school parking lot from time to time throughout the month of August, and start easing into school-like morning routines during the last two weeks of the holidays. And then, when school resumes, we just brace ourselves and deal with it as best we can.

We go through the transition with the attitude that “this too shall pass”. Because it always does. We won’t necessarily see things get easier from one day to the next, but one morning George will wake up and be completely OK with going to school. He will get dressed and stay in his clothes instead of changing back into his pyjamas at the last minute. He will calmly get onto the bus and fasten his own seatbelt. When he comes home in the afternoon, he will be happy. That night, he will sleep. For the whole night.

Once George gets over the bump of going back to school each year, he does quite well. His brain is like a sponge, and although progress on his speech and social skills is oh-so-slow, it is definitely there.

I am nervous about the start of the school year, but I am excited to see what the year will bring for George.

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


The Gift Of Summertime Chaos

The kids enjoying summer fun

The kids enjoying summer fun

Since entering the ranks of the unemployed two weeks ago, my daily routine has changed dramatically. The idea of abandoning routine altogether is tempting but dangerous. I am forcing myself to wake up at the same time, get dressed in respectable clothes, and do productive stuff. I am keeping more or less the same working hours that I did before, only without the long commute. Being unemployed is surprisingly hard work.

That being said, I am enjoying some flexibility that I didn’t have before. I can go running without getting up at an ungodly hour of the morning. I can wear sweats every day. They’re nice sweats that I’m perfectly comfortable being seen in public in, but they’re clothes that wouldn’t be allowed at my previous place of work. I can turn on the TV when I want to take a break.

Above all, I am making the most of getting time to myself, without coworkers, kids and the husband. Don’t get me wrong, I liked my coworkers, and I love my kids and my husband. But I kind of like myself too, and I’m finally getting to spend more time with myself.

That will be changing very soon, of course. The kids only have two and a half weeks before school lets out for the summer, and at that point, my period of blissful solitude is going to come to an end. I will still keep my working hours as best I can, but I anticipate frequent breaks – both voluntary and involuntary.

The kids generally never have a problem with the transition from school to summer. I try to keep the semblance of a routine in place for them. They get up at more or less the same time each day, they are expected to get dressed instead of lounging around in their PJ’s, and things like mealtimes, snacks and bedtimes remain unchanged. We do plan some activities for them over the summer, but for the most part, their time is their own.

The bigger challenge comes when it’s time to go back to school in the fall. At least, it’s a challenge for George. James takes to the new school year just fine. He is excited about seeing friends who have been away for the summer, and he likes the thrill of being in a new grade.

For George, though, it is very difficult. He doesn’t mind school too much, and going from this school year to the next, he will be in the same room with the same teacher and for the most part, the same kids. But the summer break is long, and by the time it’s over, George has to be reacquainted with the whole school routine. It’s hard for a child with autism who likes to have things just so.

One of our most important summer activities is therefore the back-to-school social story: a personalized book that tells the story of George getting onto a bus and going to school. We read the book with George over and over during the last weeks of the summer break, with the hope that the new school routine won’t come as a complete surprise to him.

And what does the summer mean to me, now that I will have to spend time focusing on the next steps in my professional life? It means additional chaos, for sure. It means that I will have to repeatedly stop what I’m doing to wipe up a spill, mediate a dispute or set up a game in the back yard.

It means that I will be here, with my children. It will be the best summer ever, and I cannot wait.



7 Hotel-Stay Survival Tips For Autism Families


There used to be a time when the idea of a “relaxing weekend away” would give me the horrors. I tended to be vehemently opposed to going anywhere, because for me, these trips were anything but relaxing. Humans in general are creatures of habit. Humans with autism are gods of habit. I used to dread taking my son George out of his regular habitat. There were always so many logistics to worry about, like safety, making sure I brought enough stuff to maintain a semblance of familiarity, and dealing with the inevitable disruptions to routine. I was more exhausted after the “relaxing weekend away” than I had been to begin with.

Now I am immensely grateful for those stressful weekends and vacations of days gone by. I have, through the process of living and learning, reached a point where weekends away with the family can be truly enjoyable for everyone, even for the child with autism. Even for me.

Here are a few pearls of wisdom that I have picked up over the years:

1. Book your hotel as far ahead of time as you can, just so you will know where you are staying. Then print off pictures of the hotel and make a social story for your child. Most hotels have an abundance of pictures online, and many will gladly email you pictures if you tell then what you need them for.

2. Pack things that are familiar to your child. Toys and books that your child likes are essential, but consider other items as well. Maybe he likes to go to sleep with the same pillow every night, or perhaps he has a cup or a plate that he is attached to. If your child has DVD’s that he likes to watch, bring them along, but also bring a device that you can play them on.

3. When you get to the hotel, tell the manager about your child’s disability. If the hotel staff are aware, most of them will go out of their way to take extra special care of your family during your stay. During our recent stay in Niagara Falls, the hotel manager arranged to have a special lock installed high up on the door to ensure that our son would not wander out into the hallways.

4. Many kids with autism are computer geeks. Find out about Internet access in your hotel room. A surprising number of hotels charge extra per device per day, and the charges can rack up really quickly. If you ask, you might be able to get complimentary Internet access, and your child will be able to access the online videos and games that he is used to.

5. Allow your child to explore the hotel room. Yes, it can be annoying to have a kid walking around turning the lights on and off, fiddling with the curtains and running water into the bathtub. But your child is in a new environment, and he needs the exploration to create some familiarity.

6. Realistically, you will be doing many things differently to the way you do them at home, but maintain whatever semblance of routine that is possible. If you do at least some of the same things at the same times, your child will feel more secure.

7. Accept that some things may not go as planned. Even in familiar settings, life with a child with autism can be unpredictable. There could well be difficult moments during your vacation, no matter how much you prepare yourself and your child. Instead of planning out a detailed itinerary for your trip, try a day-to-day approach to give yourself the flexibility to change direction if you need to.

Do you have any tips for staying in hotels with special needs children? Please add them in the comments!

(Photo credit: LVLights. This picture has a creative commons attribution license.)


George And The Silent-E Machine


It’s been more than a few days since I last posted here. I could give you all kinds of reasons for this, like lack of sleep, lack of energy and lack of time. Ultimately, the reason for my mini-hiatus can be traced back to one thing: the silent-E machine. Known to most people as the dishwasher.

My son George is the one who started referring to our dishwasher as the silent-E machine. He is a big fan of the Leapfrog movies. If you have young kids and you don’t know about Leapfrog, Google it. The movies are fun and educational, and entirely appropriate for youngsters learning how to read or count. Anyway, one of the movies features the Leapfrog characters in the Letter Factory learning about how silent E’s can change the way a word sounds. The silent E’s are manufactured by a machine called – you guessed it – a silent-E machine.

After George watched this movie several dozen times, he decided that he wanted a silent-E machine of his own. He grabbed one of his fridge magnet E’s and placed it on the dishwasher, and hey presto! We had a silent-E machine.

George is very particular about routine, and part of the essential routine is that the silent-E machine be turned on right around bedtime. Usually, he will quite happily go to bed and drift off to sleep with the silent-E machine running in the background. And this is fine. If he wanders out of bed from time to time to check on the progress of the cycle, I’m OK with that. He likes to make sure that all is well in the world as he knows it.

About a week ago, the silent-E machine started to act up. I started running it only at times when I could keep a constant watch on it. Which meant running it outside of George’s regular schedule. Most autism parents will bear witness to the fact that this is a recipe for disaster. The entire household applecart was severely disrupted, and all of us started getting a lot less sleep.

Then, on Mother’s Day, we reached a point of not being able to use the silent-E machine at all. We had to start lugging dishes up and down the stairs so we could borrow my mother-in-law’s dishwasher, and this meant that her dishwasher was being run at the wrong times.


It got ugly. Now George was staying awake more or less through the night, crying about his beloved silent-E machine, and running up and down the stairs at odd times of the night to inspect my mother-in-law’s dishwasher.

I am hoping that it will all be fixed tomorrow. The problem seems to be nothing more serious than a clogged pipe, and I have acquired some chemicals to pour down it.

Wish me luck, friends. It’s been a rough ride.

What happens when normal routines are disrupted in your house? Is there chaos or does everyone go with the flow?

(Photo credit: kevin dooley. This picture has a creative commons attribution license.)


Autism And The Art Of Conversation

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Every night, I give my older son George a piggy-back ride to bed. These days are numbered, of course. George is almost nine and he’s all arms and legs. Someday soon, he will too tall and heavy for me to cart around on my back. For now, though, I treasure these last days of being able to pick up my son.

We get to his room, where I dump him unceremoniously on his bed. He tucks himself in while I turn off the light, and then I lie down beside him. For the next few minutes, it’s just him and me, alone in the entire world.

We talk. I ask him questions. He answers them.

Who does Mommy love? She loves George.
Who does George love? He loves Mommy.
How do you feel? Happy.
Did you have a nice day? Yes.
Where did you go? School.
What did you do there? Math.

Always the same questions. Always the same answers.

I follow this ritual for the sense of closeness between me and my son, because it’s a comforting part of our time together. I also do it to help him practice the art of conversation. His verbal communication skills are worlds behind those of typical kids his age. He knows how to talk, how to make requests and the occasional joke. He is starting to make the odd remark for social purposes, and not just when he needs something.

But he does not know how to have a conversation. So I am teaching him.

When George was first diagnosed with autism, he did not know how to point. Over a period of eleven painstaking months, during which I followed the same routine every single night, no matter how futile it seemed, I taught him how to point. I still cry when I think of the first time I was rewarded with him pointing independently.

If I could teach him how to point, surely I can teach him how to have a conversation. After all, they are both forms of communication, right?

From time to time, I switch up the questions during our nightly routine, and ask him something else. When I do that, he never answers the question I ask. He gives an answer to the question he was expecting. I don’t mind. It just shows that he’s not yet ready to move to the next level. There’s no rush. I can wait. It will happen when he’s ready for it to happen.

It’s OK that he has memorized the sequence of questions and answers. Children learn to read in much the same way, rote-repeating sentences that they have heard many times, before making the connection with the printed text. There is every reason to believe that George’s relationship with conversation could evolve in much the same way.

While I’m helping him learn a skill that will be of value to him for his whole life, I am treasuring those nightly moments we spend together.

(Photo credit: Kirsten Doyle)