Mom reading son bedtime story

To the Parents Whose Child With Autism Is Having Difficulty Sleeping

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Dear parents,

Does your child have difficulty trying to go to sleep?

When I speak with parent groups, sleep difficulties tend to be one of the top challenges that get mentioned.

When I was a kid, I had bed guards on my bed due to difficulties with my balance along with issues with tossing and turning for long periods of the night. Today, I know countless kids on the spectrum who have similar challenges to mine growing up.

Just like no two people with autism are the same, the reason for these challenges can vary. Sensory issues such as noises and lights can play a huge part in that challenge. This was especially true for me growing up in a big city where I was exposed to high beams from vehicles, horns and sirens.

One of the things that helped me, along with bed guards, were bed shades that would take away all external light so I could be in a pitch-black environment. As I got older, I had a night-light that was dim so it wouldn’t affect my sensory issues. Then, my parents helped me form a schedule for going to bed every night. For example, growing up, I used to be obsessed with “Wheel of Fortune” and Vanna White. So as a child, 15 minutes after “Wheel of Fortune” was over, that was my bedtime (we’d keep the brightness on the television dimmer, though, as bright lights can tend to keep children up longer). My parents found it important to have me go to sleep on a positive note due to my emotional challenges, and it did wonders.

This became part of my reward systems. Along the way, we would look at more reward systems for when I would fall asleep by myself. Later in my adolescence, and when it felt like I had more energy, we cut down caffeine and sugar in my diet, especially in the afternoons and evenings. As I started getting involved in more sports, a boost in my regular physical activity, I was also able to maintain going to sleep easier and staying asleep throughout the night.

For the parents out there who are reading this, I hope you know you aren’t alone in this journey. Sleep is one of the most important things our bodies need. Help your child by reading resources — like this
toolkit you can download, Sleep Strategies to Improve Sleep in Children With Autism Spectrum Disorders: A Parent’s Guide — to prepare them for that transition to bedtime.

Sleep well all!
Kerry

A version of this blog originally appeared on Kerrymagro.com.

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To Those Who Don’t Get Why I Don’t Kiss My Autistic Son

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I come from a family that is quite big on public displays of affection. The thing is, I was never really comfortable with that. I have been told on more than one occasion that I wasn’t a cuddly baby. When anyone tried to sit me on their knee, I would fight and say, “Down, down…” I remember feeling uncomfortable at being forced to kiss my aunt, and family parties filled me with dread. My grandad bucked the trend, too, and flatly refused to kiss anyone. He hated it!

It came as a huge surprise to unaffectionate me when my older son was born that I had this overwhelming need to smother his tiny face, arms and legs with kisses, smiling happily while listening to his squeals of delight.

We kept up the family traditions of kissing goodbye and goodnight to relatives, but my son always presented his head for kissing rather than his lips. He never clung onto me when I lifted him up. He would happily run off at playgroup without a second glance to where Mummy was. I always knew he loved me; he just didn’t have the need to grasp my leg or wrap his arms around my neck to show it.

My younger son was different. He clung to me like a baby monkey and curled up on my knee, seeking affection. He smothered me with kisses and sought closeness, staring into my soul with his huge brown eyes.

When my older son was diagnosed with autism, some things made more sense. His over-sensitivity to smell means he knows what you ate or drank an hour ago. His over-sensitivity to touch means the stubble on his uncle’s chin feels like sandpaper on his cheek. Close proximity makes him feel stressed instead of feel loved.

I know my eldest son loves me — he just shows it in a million tiny ways. I don’t feel sadness, regret or lacking in anything. It is simply who he is. I get it… But I also get how it can look to others.

I have been accused of showing favouritism to my youngest son. I have been told. “He likes cuddles too.” And not by strangers.

I want to set the record straight. I don’t kiss my son because I love him. I don’t kiss him because it doesn’t make him feel good. I go against every fiber of my being, every feeling that courses through my body when I look at him with immense pride, affection and love because he doesn’t want it.

Why force unwanted affection on him? To make yourself feel better?

I don’t confuse affection with love. But I do tell him a million times a day that I love him.

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Why I’m Proud My Child Won’t Be in This Year’s Christmas Play

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Maybe I am getting old, but it does seem like talk of Christmas starts earlier every year. We are only just over Halloween, and already the shops have festive music, selection boxes and wrapping paper in prominent places! But as a trained teacher, there is one place I totally understand preparing early for the holidays, and that is schools. There is a presumption that schools and churches will put on an annual play or concert of some sort, and the organization involved in these is tremendous. It can take months of preparation to teach children songs, practice words and prepare costumes. It is a highlight of the year for many parents and children.

This year, my daughter, who just turned 8, has asked not to be in the Christmas play.

At first I was disappointed, as Christmas is one of my favourite times of year, and both my church and her school put on wonderful shows. But when she told me why she didn’t want to be included, I actually cried.

“I don’t enjoy it at all,” she told me.

It is my duty as a parent to listen to my children and support them. She has a right to choose. My daughter has selective mutism, anxiety and autism. Being on a stage in front of others, remembering stage directions and song words, and wearing itchy costumes is something she finds stressful. She finds the change of routine difficult and the noise frightening. The thought that everyone is looking at her makes her feel physically sick.

I realized I wanted her to be part of it for all the wrong reasons. I wanted it for me, not for her. I didn’t want her feeling excluded or feeling like she was missing out. But in actual fact, I was putting her in a situation that made her uncomfortable and stressed.

This year, I will watch the church play and her school play. No doubt I will still cry at “Away in a Manger” and beam with pride at the children in the plays. Instead of watching my little girl perform, I will have the beauty of holding her hand as she sits next to me and cheers for her friends. She will sing the songs happily, and for the first time, I will manage to hear every word as her beautiful voice is right next to my ears. We will laugh together at the fun parts and share the experience in a way she finds relaxing and enjoyable. It will be magical, but in a different way than I imagined.

It took courage for her to be able to tell me something she knew I would find difficult to hear. She knows how much I love watching her do things, and she knows how proud I am of her. This year she knows I am extra proud at the fact she felt she could tell me she doesn’t enjoy being part of the Christmas play.

I will never forget her smile and the sparkle in her eyes the night I told her how proud I am of her for not being in the Christmas play this year.

It is OK to be different. It is OK to say no sometimes, too.

Follow this journey on Faithmummy.

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Learning to Say No Is the Best Gift I Could Give Myself

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People don’t understand my limits when I feel too overwhelmed at the end of a long work week to go out on a Friday. They take things personally when I decline their invitations.

I used to get caught up in upsetting them. One day, like a light bulb going on, I realized I was not responsible for their feelings.

Taking on too many things is not good for my health. Social activities, although enjoyable, are tiresome to me, especially if they take place in a busy environment.

I may choose to stay in, but that doesn’t mean I didn’t want to go out.

I’ve learned that limiting activities that drain my brain, especially during and around busy work weeks, is something I have to do. If I don’t conserve my energy at home, I won’t have the energy to do my job.

My job can be stressful but it’s actually a fun job, and I enjoy it.

I always want to be fresh and ready to do my best at work. That means taking care of myself — mentally and physically, eating healthy, and getting plenty of rest. I need to be sharp in order to work.

I have to say “no” to people. Some people get tired of hearing “no” over and over. I’ve lost friends over this. It sucks to lose friends, but my health has to come first.

I think “no” is a wonderfully empowering word. Learning to say “no” has set me free.

No — I won’t do it anymore, not if it’s not good for me.

This is me taking care of my mental health.

Follow this journey on Anonymously Autistic.

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