Supporting neurodivergent children with self care

Earlier this year MissG and I were to participate in the annual Autism Positivity Flashblog. The topic was Acceptance Love and Self-Care. I hoped to ask MissG some questions about how she looks after herself and submit her answers, but as you will see the discussion didn’t go as I thought it would. 

As I move articles over from the old blog I am looking at them with fresh eyes. As I read through this it struck me that it is important to acknowledge that the way we parent MissG is the way we parent all our children. She is Autistic, yes. The strategies we use in supporting her in her self care decisions work well for her. They also work well to support all our neurodivergent children (which I suspect is actually all our children!).

So, with that in mind, here is how my discussion with MissG played out.

 

Do you think it is important to look after yourself?  

Yes

Why?

I’m not answering

Can you tell me some ways you look after yourself? 

Ugh…. I’m not answering your questions. 

Are you feeling stressed right now? 

mmm hmmm

So, is not answering my questions a way of looking after yourself because you feel stressed?

mmmmmm

Is it ok if I just write down some things I know you do to look after yourself, and put that in the blog?

yeah
For the record, MissG had agreed to answer some questions for this article when I asked her yesterday, but when it came to doing it today didn’t want to. She is a bit out of sorts lately, we’ve had a really busy schedule for a few weeks, she is tired, overwhelmed and stressed.  I’m glad she agreed to let me share some things about how she looks after herself, though, because it is something we focus on a lot in our house and she has some great strategies! Everything I have written below I have her permission to share.

Caring for herself by not talking

MissG does speak to communicate. Most of the time. Sometimes she refuses, as you saw above. Sometimes she finds spoken language prohibitively difficult. She is learning to recognise when conversation, and the associated mental processing energy, is too much for her. Unless it is an issue of safety for some reason, we do not discourage her from retreating. As she gets older we will explore whether typing to communicate when speech is difficult is an alternative for her. Right now she finds writing very difficult, so sometimes we use the feelings book she made herself.

{below is a slide show of MissGs hand made feelings book. It is a series of coloured pages each with an exceptionally gorgeous face drawn by 7 yr old MissG. Each face has a different expression. There are handwritten words with each picture saying how the person feels. There is a title page that says MY FEELINGS,  “That was too LOUD“, “I wasn’t expecting that!”, “I’m feeling cross!!!”, “I’m so surprised”, “I am happy”, “I’m feeling a little disappointed”, ” I am sad”, “I am O.K.”.}

This slideshow requires JavaScript.

Caring for herself by stimming

MissG stims by licking her lips and the skin around her mouth when she is stressed. We have never discouraged her. Sometimes however her stimming can cause damage to her skin, so we have talked about looking after her skin. MissG initially chose to do that by applying a soothing barrier cream to her skin when it felt sore. More recently she expressed a desire not to lick all the time because people had started to comment on her skin looking dry and red. She had her own suggestion for a replacement behaviour. She said,”When I don’t lick I feel bitey. I know I can’t bite other people, so I can bite my finger. But that can hurt, so can you get me some gum to chew?” And a few days later, on the way to the hair dresser, “Can we get some mints? I will need to sit still, but it will be hard because she will touch my head. Some mints will help me feel better.” Gum and mints are now always in my bag, along with the cream she uses. MissG still stims by licking, but now there are alternatives that  she has chosen when she wants to use them.

Caring for herself by getting help with sleeping

MissG does not sleep well. She has a lot of trouble getting to sleep and usually wakes at least twice a night. Not sleeping well adds to stress. When I asked the Paediatrician about this, he called it “Sleep Initiation Disorder” (meh!) and said some Melatonin might help. MissG’s sleep disturbances are only really a problem when external things impose their routines on her, for example when she needs to be at swimming lessons earlier in the morning than she would usually wake, or if we have an appointment to keep, but because she is homeschooled she can usually keep her own sleep schedule. I have noticed though that after a few months of going to sleep “late” and waking “late” that MissG begins to feel stressed and overwhelmed more frequently. So, we have talked about it, and come up with a system that works well for her. Usually MissG chooses when to take Melatonin to help initiate sleep. She will usually choose to take it 2 or 3 nights a week. If she or I notice that she is going to sleep very late regularly, or if she is experiencing overwhelm more often than usual and we can’t see any other obvious reason for it, she will take Melatonin every night for a 2 to 3 month period to help her body reset its circadian rhythms. Generally about 2 weeks into this period of nightly use both she and I can see she is feeling better overall. After about 6 weeks I notice MissG begins to tell me she doesn’t want to take it anymore, because she feels she sleeps differently with the Melatonin and once she is not overtired all the time that feeling is not nice, so we negotiate how much longer she needs it to complete the reset period. She is never forced to take it.

Caring for herself by being in control of decisions about her body

This is the key. I hope you noticed it in all the above points.

“she refuses” “we do not discourage” “her own suggestion” “alternatives that  she has chosen” “come up with a system that works well for her” “is never forced”
MissG’s body is hers and hers alone. She makes the choices about her self care. She is in control. So, while this blog post has not turned out anywhere near the way I had planned, I am not concerned at all. My role as a parent is to present options for her consideration when her 7 years do not give her the experience to know what all the possibilities are. My role is not to impose my desires on her. I guide, I recommend, I support, but I do not choose. This is so important in helping MissG become her own best advocate.

Having control over the choices made in the care of her own body is the most important thing for MissG to become confident in as she grows up. She will be a disabled adult, and my advocating for acceptance, love and self-care, with her right to be in control and make her own choices, is one of the most powerful gifts I can give her.

Screen Shot 2015-12-09 at 3.29.06 PM

{image: An expanse of grass with large leafed plants in the background at the top of the image. In the top right corner is a fair skinned child wearing black pants and a dark pink shirt, who is running toward the camera and flapping their hands. There is a grey bar across the top containing the web address michellesuttonwrites.com. At the bottom of the image are the words “She will be a disabled adult, and my advocating for acceptance, love and self-care, with her right to be in control and make her own choices, is one of the most powerful gifts I can give her.  Michelle Sutton”}

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