A message for and about Mums

 

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Image courtesy of http://www.pexels.com

 

Most Mums know their children better than anyone else. (I apologise for this generalisation—I am fully aware this is not the case in every situation, but I’m a Mum so am writing from the Mum’s perspective.)

We interpret the cries of our babies; we know when they’re hungry, tired, grumpy, happy; we know what they want; we understand toddler babble-speak.

For many Mums, this need to decode everything ends to a certain extent when their child becomes more articulate and verbal (at least until the teenage years, when it’s a whole new ballgame).

However, for me as a Mum with a 12-year old high-functioning, verbal, articulate child who also happens to have Asperger’s, it is yet to end. I’m still wading through a daily sea of interpretation, misinterpretation, guessing, second-guessing and problem-solving.

If a job required expert skills in ‘code decryption’, I reckon I’d be a shoe-in candidate.

While Geordie is very articulate in other ways, he often struggles to identify and find words for how he is feeling; or, he knows how he is feeling but can not work out why. This is common in Autism/Asperger’s, but not necessarily definitive, and can be the cause of what many people see as ‘anti-social behaviour’ or meltdowns.

Sometimes, working out the cause of Geordie’s anxiety or distress is simple; it may only take a couple of minutes. At other times, it may take half an hour, or longer — sometimes several days and very, very occasionally I am unable to work it out and we just have to move on.

The process involves a lot of questioning, a lot of guessing, a lot of elimination technique and an ability to decode expressions and read ‘between the lines’ of Geordie’s responses.

No matter how long it takes, or what the outcome is, you can be sure of one thing —

I know my child!

So, when I have other parents, family members, teachers, school psychologists or medical professionals telling me that what I am seeing and hearing and knowing must be in my imagination or the result of helicopter parenting it really makes me cranky. (**understatement)

I have weathered this storm of disbelief for nearly nine years now. On and off.

 

It all began when I asked Geordie’s paediatrician for a referral to Therapy ACT to get him assessed for Asperger’s/Autism.

He didn’t think it was necessary. I did.

If my natural personality weren’t that of a pig-headed, stubborn mule — I would not have taken it further, and we would not have a diagnosis! Our life today would be VERY DIFFERENT.

Since that first run-in, I have dealt with another paediatrician who thought Geordie’s refusal to eat and subsequent weight loss was because I didn’t understand nutrition, so she tried to send me to a dietician to learn how to feed my son. (She met the pig-headed stubborn mule.)

I have come across strangers in the street who’ve suggested I learn how to discipline my child. (They met the ranting tyrant.)

I’ve also known of several teachers (some of them Geordie’s, but not all) who’ve refused to acknowledge the need for ‘downtime’ among other things — I don’t have space here to list them all. (When they were Geordie’s teachers, they met the ‘parent from hell’ eventually.)

On the flip side, I should acknowledge that I have come across equal numbers of people, if not more, who are supportive, wonderful, understanding, flexible …

 

Over the years, my openness about Geordie’s diagnosis and its associated behaviours has increased — in parallel with my lack of tolerance for the non-believers.

Top of my list of people I’m gunning for at the moment is those who listen with false sympathy to a mother’s description of her child’s behaviour. They nod when the mother wonders if the behaviour might be a sign or symptom of Autism/Asperger’s — and then they blow it by turning around and saying something like:

Oh, I’m sure he’s just being a boy.

It’s just a phase — he’ll grow out of it.

Don’t you think you’re just being overprotective?

Really? My child does that too — everyone does.

Or my current personal favourite for its insinuation that it is the mother’s parenting skills that are at fault:

I don’t think it’s Autism — I think it’s behavioural.

I have heard each and every one of these ‘opinions’ multiple times — both directed at me personally, and at other parents.

They achieve nothing positive.

All comments like these ones achieve are to make the recipient (usually the mother) feel like she’s not doing a good enough job, or that she has failed her child.

The other thing they do, I’ve decided just recently, is paint the deliverer of the comment as someone who does not respect the opinions and observations and knowledge of others. In other words — a total tool who is not worth listening to.

A mother knows her child.

We need to respect this knowledge.

We need to acknowledge it — not belittle it.

To all mothers out there who are, or have been, struggling with the negative perceptions of other people:

Do not listen to them!

Listen to yourself! Believe in yourself! 

Do what you know is right for your child — even if you have to fight, even if you shun people along the way, even if it becomes difficult.

Your child is more important than anyone else!

It will hurt. It will be stressful. IT WILL BE WORTH IT!

 

 

A stimming timeline

STIMMING

In May last year, I wrote a post about stimming. I commented on some of Geordie’s past stimming, observing that his movements had changed and become less obvious (and less ‘weird’ in the eyes of society) as he was getting older. At the time of writing that post, I wondered if he’d stopped stimming — although I was under no illusions he’d ‘grown out of it’.

He hasn’t stopped, by the way. You just need to know what to look for.

Stimming – or stims – are a wide variety of self-stimulating behaviours that people with ASD may exhibit when experiencing sensory overload or high levels of anxiety. Stimming can be a repetitive motion such as hand flapping or rocking, repetition of words or phrases, vocalizations, or even the repetitive movement of objects. Stimming still puzzles many neurotypicals, who often want to eradicate or control stims. While stimming may seem alarming or strange to the rest of us, these behaviours do serve a purpose for those on the spectrum.

Maureen Bennie 

If you google stimming or stims you will discover a multitude of definitions, articles and blogs on this subject. Mother of two children on the autism spectrum, Maureen Bennie, provided one of the more clear and accurate ones I could find in a quick 5-minute search. I particularly like her last two sentences.

Geordie’s stimming appears to be most prevalent when he is anxious about something, but it also appears occasionally when he’s bored. Along with the changes in his stimming behaviour, there has also been an increased awareness of what he is doing.

I thought it may be interesting to make a little timeline of the changes in his stimming, if only for my own reflections:

     ♦ 2 years old (approx) – 4ish:

Geordie was obsessed with HotWheels Cars. He would spend endless amounts of time lining them all up, then moving them all forward one space, and back one space. (I am not 100% sure if this is stimming or not, but when he was doing it, he wasn’t aware of anything that was going on around him at all which was characteristic of later stimming movements.)

3 years old – 4 years old:

Hand flapping, quick jerky movements which sometimes extended to his whole arm and occasionally, but increasingly ended in a jump. These would sometimes be repeated several times.

5 years old – 10 years old

The hand flapping and jump evolved into pacing forwards and backwards with hand/arm flapping and punctuated by the occasional jump. This movement would go on for anywhere from about 30 seconds up to 10 minutes or more.

♦ 9 years old – 11 years old

Although the pacing/hand flapping movement was still a major stim, it started being replaced by ball-bouncing. Geordie would go into the backyard and pace up and down the grass, bouncing a tennis ball. Again, he would do this for varying lengths of time and ahead of various activities (but always, every day without fail, before he went to school).

♦ 7 years old – right now

Geordie has been known to pull at his fingernails (and also his toenails) until they bleed. He picks at them with his fingers, but never chews them. I suspect he does this a lot while at school, but he also does it while he’s watching TV. The sound is very rhythmic.

♦ 11 years old – 12 years old

One day, Geordie came home from school with a Yo-yo. It became his stimming activity for about 8 months. The yo-yo lived on the kitchen bench, and Geordie would intermittently appear in the kitchen and start using it — again, always before school.

♦ 9(ish) years old – sometimes still now

Pacing and talking to himself is particularly prevalent when Geordie is angry, frustrated, stressed or very anxious. I am not sure if he is aware of this, though suspect he is at some level because if we ask him what he said he can get very annoyed and always denies doing it.

♦ right now

Geordie taught himself how to juggle during the Christmas holidays. First two balls with one hand, then three balls with two hands. He’s very good. He ‘practises’ quite a bit because it’s his current stim.

The most obvious and prolonged stim was the arm flapping and jumping one. 

This movement, above any of his other stimming behaviours, was the one that happened anywhere — at home, at relatives’ houses, at the shopping centre, at restaurants and at school.

It was the movement that was frequently commented on and referred to by one of his Year 1 teachers as ‘flapping around’ and ‘deliberately disruptive behaviour’.

It was the action I was initially embarrassed about and tried to get him to stop — and because of this (or rather, my inability to get him to stop), it also signifies the time I first learned what stimming was.

He was doing this a lot when we were referred to his psychologist for his eating anxiety. She taught us that this movement was like having an itchy spot and, like an itch, if it wasn’t dealt with it could be agonising. She worked with Geordie on this too and got him to recognise it and name it. She taught him to tell us, “I need to jump,” so we could take him somewhere private, where he wouldn’t be stared at.

This was the turning point.

Recognise stimming for what it is.

Name it.

Deal with it.

The thing is — everybody stims, autism or not. Think about your repetitive pen-clicking, toe-tapping, neck cracking, finger drumming. They are all stims. They’re just less noticeable and more socially acceptable.

One wish I have is that stimming would be talked about more openly, rather than hiding it. It is not something to be ashamed of.

I would love to know of other people’s experiences if you want to share.

 

 

What has a stuffed dog got to do with Asperger’s?

Introducing Fifi

IMG_0500This is Fifi – my son’s well-loved, but ever suffering, stuffed dog. Fifi was given to my son on his second birthday – two years before he was diagnosed with Asperger’s Syndrome.

Over the last eight years, Fifi has become more than the favourite toy; more than the only ‘family member’ who can bring my son out of a meltdown. Fifi has his own ‘world’, and it has become both a sanctuary for a little boy and a place of learning for me.

More about Fifi’s World

I have heard people describe children on the autism spectrum as ‘being in their own world’; I have also heard people say that it is wrong to use that terminology. In my son’s case, I would have to agree with the latter – he is firmly ensconced in our world, but he sees many things differently.

Through Fifi’s very own world, aptly named Fifi’s World, this floppy, grimy dog has become my son’s voice. It has taken me a while, but I have eventually come to realise that what is happening in Fifi’s World is my son’s interpretation of the things that are going on around him.

Essentially, Fifi’s World is how my son deals with the daily happenings in the confusing and confronting world in which he lives.

What is the ‘amaranthine’ journey I refer to in my tagline?

I will admit to doing a Google search to find this word. I wanted a word that suggested ‘continuous’ or ‘never-ending’ but with a less negative connotation and amaranthine popped up.

The stem of the word is ‘amaranth’ which comes from old Greek and refers to a mythical unfading flower. The adjective, amaranthine, describes something which is ongoing, yet not unpleasant. It can also allude to a purplish-red colour which, interestingly, is a colour my son was drawn to as a toddler.  So – I had to use it.

Why am I writing this blog?

To be honest, this blog would not be in existence if it wasn’t a requirement in my Professional Writing and Editing course. However, writing about my family’s Asperger’s journey is something I’ve been doing for a while and I am excited that I have been given (or should I say, forced into) this opportunity to relay our journey to other like-minded people.

Fifi’s World has given me a deeper understanding of my son – and this enlightenment is what I hope to share with you.