Helping a child with anxiety.

My eldest child, Emma (nine-years-old), had her first anxiety attack when she was just four-years-old. At the time we didn’t know it was an anxiety attack but she’s had many more since then and we now know that that’s what it was. We had spent a lovely day at the park collecting conkers for an arts and crafts activity when she suddenly started feeling dizzy and complaining that she felt sick. She went very pale and started to shake so we took her home where she sat, subdued, on the sofa refusing to move, talk or eat. By that evening she was back to her old self again. The same thing happened again a few days later…and then again and again and again…

 

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A photo of Emma playing shortly after her first anxiety attack. Even though she’s smiling, you can see the exhaustion in her eyes.

 

Emma was very interested in me writing this blog and wanted to help out by explaining how she feels when she has an anxiety attack. She has told me in the past that it makes her brain feel “fizzy” and as if she has no control over it or her emotions. Today she told me that when she is at the start of an anxiety attack it “feels like my brain is laughing at me and calling me fat and ugly. It feels really horrible and bad; like I don’t know what’s happening. Sometimes it feels like my brain is big and screaming and swearing at me.”

Over the years, with the help of Emma herself, others who suffer from anxiety or help those who suffer from it and advice from doctors and other healthcare professionals we have devised a number of ways to help Emma deal with her anxiety and I’m going to write about a few of them in the hopes that it may help other families who are just learning about anxiety.

The most important step in helping Emma manage her anxiety was her recognising, for herself, when she was feeling anxious. This is no easy task for a child and it took her a long time to realise that when she felt sick it didn’t instantly mean “bug” or “food poisoning” but it could also mean “anxiety alert!”. Emma has emetophobia which means that an anxiety attack for her is a double whammy because it makes her feel sick, which makes her anxious, which makes her feel sick…it’s a rather depressing spiral.

Once we realised Emma had anxiety we bought her a book recommended by a parent on a Facebook page, the book is called Starving the Anxiety Gremlin and is a CBT workbook aimed at children to help them identify and overcome their anxiety. Emma has really enjoyed filling in her book and it’s helped her understand her anxiety a lot more. The book introduces the concept of an “anxiety gremlin”  to separate the anxiety from the child. This gremlin is “fed” by unhelpful behaviours such as self-harm but is starved when the anxious child seeks help from an adult or practices calming techniques when feeling anxious.  It’s a great book which explains the evolutionary purpose of anxiety and doesn’t encourage the child to suppress or hide their anxiety but to face and not allow it to assert dominance over their lives.  It helps the child feel in control of their own emotions and anxiety.

Now that Emma is better able to recognise an anxiety attack before it really begins she is able to tell us that she’s feeling anxious (she uses a codeword “Lobster” to tell us she’s feeling anxious because saying the word “anxiety” makes her feel anxious!) and then we can help her calm down or encourage her to calm herself. Once Emma says, “Lobster” to me, I ask her if she needs my help. Sometimes she will say no and take herself off with her ear-defenders and blanket to hide in her tent with her sensory box or to do some drawing.  Other times she will say yes and I’ll help her by giving her a tight cuddle, talking to her or just be sitting near her until she feels calm, whichever one she thinks will be most helpful.

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A selection of sensory items, fidget toys and music boxes from Emma’s Sensory Box.

Usually, after an anxiety attack, Emma feels exhausted and needs to be left alone to recharge her batteries. She often does this by drawing, she is a very talented artist and finds drawing very relaxing and soothing.

 

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Sharing some of Emma’s work here because she’s rightly very proud of her artwork!

Emma has attended relaxation classes aimed at children, we found a group called Relax Kids which ran the sessions and in these classes, she learned some wonderful coping mechanisms for when her anxiety is getting on top of her. They teach breathing techniques and other meditation exercises, as well as promoting good self-esteem and mental wellness. Emma’s favourite takeaway from these sessions is what she calls “cat breathing”. She arches her back and flexes her hands and feet like a cat and then relaxes as she takes a deep breath in and “purrs” as she breathes out. Sometimes while doing this she asks me to firmly stroke her head and back, sometimes she prefers to be left alone.

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Emma’s Anxiety Gremlin is called Spaghetti Arms.

Without the stress of school, Emma’s anxiety has decreased greatly all by itself but the techniques described above have also gone a long way towards helping Emma and now, although she still feels anxious fairly regularly, she very rarely self-harms or feels suicidal because of it. She is much more in control of her anxiety instead of it being the other way around and is able to deal with her emotions in a very healthy and mature way. When I see Emma battling her “anxiety gremlin” I am incredibly proud of her, she handles her emotions better than many adults!

 

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Taking off the Mask.

Growing up, many autistics, particularly girls, quickly learn to mask their autistic behaviours in order to fit in with societal norms and to not stand out. This masking is usually detrimental to their mental health. Harmful therapies such as ABA teach masking and try to pass it off as a “cure” without any regard for the mental wellbeing of the autistic individual.

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I can’t credit this picture because it came from an unknown source. If you know the person who made it, please tag them in this post (and tell them to take out the extra apostrophe; it’s driving me mad!).

When I was a child I was lucky enough to never be subjected to the horrors of ABA, yet I still masked my autistic behaviours for fear of bullying from my peers or being sent to live in an institution (a fear I made up in my own head after watching Rain Man). I learned to only stim in the privacy of my own bedroom (my favourite way to stim was -and still is- to flick and twiddle my hair for hours); I could never bring myself to make eye contact, it induced far too much anxiety, but I did learn to carefully watch a person’s mouth and nose while they were talking in the hopes that it would give the appearance of eye-contact;  I was mostly mute at school unless I was alone with my friends because I always felt that my voice sounded “odd” compared to my peers so I was self-conscious of talking and besides, I wasn’t so stupid that I missed the rolled eyes and sniggers when I tried to talk about things that interested me, I decided that it was best to just keep quiet and pass myself off as shy.

As I grew up I masked more and more, trying my best to speak about subjects that seemed to interest other people and to appear as “normal” (read: neurotypical) as possible. When I started college I decided I wanted to try and increase my social circle so I stopped passing myself off as shy and tried to make friends with people. I found it surprisingly easy to slip into one role and then another, I had many large groups of friends but I was never truly myself when I was with them. I would hang around with one group of people at morning break, acting and talking like they did, then sit with an entirely different group at lunch, again taking on their values and social habits as my own, before walking home with a completely new bunch of people and imitating them as I went.

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Having such a mixed social life led to some interesting fashion choices. This is me aged 16, if you’d asked me back then I would have told you I was a “goth”! (I think it’s safe to say, I wasn’t!)

I’ve since found out that this social mimicry is called being a social chameleon and is relatively common amongst autistic teenagers. I don’t think I was fully aware that I was copying the people I spent my time with, I truly believed that each personality I tried on was really me. This had a massive knock-on effect on my mental health and today, at almost 30 years old, I am still struggling to figure out exactly who I am and whether or not the things I like are really things I like or if I just think I take pleasure in them because the people I spend time with enjoy them. It’s a very confusing thing to not really know yourself and causes me a great deal of upset and anxiety. I regularly feel like I really don’t belong in this world.

After having my daughter and realising that she was autistic I began to notice how much I masked and I could see how damaging to my health it was: I took stock of my anxiety, crippling depression and insomnia and realised that all of them, to an extent, could be credited to me constantly pretending to be somebody I wasn’t, just to make the people around me comfortable. I didn’t want my daughter growing up thinking that masking was the norm so I began slowly taking off the mask that I had spent my entire life perfecting. It’s been four years since I made a conscious effort to stop masking, and I still find myself doing it more often than not. It turns out being yourself after a lifetime of pretending to be somebody else is not easy!

 

Why ABA is harmful and nobody ever “recovers” from autism.

Despite increased understanding and acceptance of autism, there are still people (mostly neurotypical) who push for a “cure”. Most people on the spectrum do not want a cure; they are happy being who they are, those who do want a cure often do because of a lifetime of being made to feel inadequate by the neurotypical people in their lives who profess to love them.

What is ABA?
ABA (or Applied Behaviour Analysis) uses positive reinforcement (and sometimes punishment) to reinforce what it sees as “good” behaviours, whilst eliminating “bad” behaviours. Advocates of it tote it as an autism “cure” or “treatment”.  They claim its use can bring “meaningful and positive change in behaviour.”

It is a very intensive “therapy” and often requires the “patient” (read “victim”) to undergo a gruelling 40-hours per week of “therapy” in order for it to work. For many people, alarm bells should be ringing loudly right now that any child should be expected to spend 40-hours per week going through intensive behaviour modification but, unfortunately, many parents believe the lies spread by advocates of ABA and certain “autism charities” and truly believe that they’re doing the right thing and that putting  their child through ABA is done out of pure love, in the hopes of transforming their poor, lost autistic child into a “real person”.

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I won’t name names, but ten points to the clever person who guesses which “charity” most advocates ABA?!

So, what’s the problem?

The largest problem is that these sessions do not cure autism at all, what they do, in fact, is teach the child to mask their autistic behaviour so that, to a neurotypical outsider, they appear to be magically cured of their “evil” autism. But these children are not “cured” or “doing fine”, they, like the proverbial swan, may appear to be gliding through life but beneath the surface they are paddling furiously, internally chanting horrible mantras such as, “calm hands!” to remind themselves not to stim lest the unseemly sight of hand-flapping upsets the delicate sensibilities of any unfortunate neurotypical people lingering nearby.

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The proverbial swan…maybe.

Hopefully you can hear the sarcasm dripping off many of the words used in the above text by my use of inverted commas but, if not, please let me clarify: autism is not evil, it is not some beast which snatches children away from their families in the middle of the night and it is certainly not a disease to be cured. Autism, like all neurodiversities, is merely a difference in the way an individual thinks and experiences the world. People with autism are not puzzles to be solved or burdens to their families; they are people who have every right to live as themselves without being forced to act differently just to avoid offending some person who can’t see the world from the perspective of anybody but neurotypical people.

Many autistic adults who were forced to go through ABA or other “behavioural therapies” as children have grown up with conditions such as PTSD as a direct result of ABA and being forced to mask.

I’ve been lucky enough to have very accepting, loving parents, so I was never subjected to the horrors of ABA. I’ve read about it though and have friends who have had their lives destroyed by it. In order to write this article, I have read through many articles, both by parents who think they can “cure” their child and by autistic adults who were put through ABA as children. Below I would like to address some of the issues raised in the things I have read.

But, autism is “bad”!

Seriously, I’ve seen this postulation posted in one way or another on many different forums and groups when I’ve tried to explain that autism just is what it is and, just like being neurotypical, it is neither good nor bad. The trouble is that people often confuse autism with the comorbid conditions that can go hand-in-hand with it (anxiety, depression, OCD and a plethora of sleep conditions, to name a few). The issue here is that many of these problems are a direct result of desperately trying to fit into a neurotypical world which is not friendly towards neurodiversity. Other comorbid conditions (sensory issues, gender dysphoria and so-called “learning difficulties”) wouldn’t seem so prominent if the world were more autism-friendly. Just as a deaf person need not feel disabled if only everybody could use sign-language, an autistic person need not have a hard time if the world was willing to make small compromises for them. To address sensory issues alone and how hard a place the world can be for autistic individuals, I will recount a story of a recent experience in our local bowling alley:

I had decided to take my children bowling, all three were very excited at the prospect of a fun day out.

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When we arrived at the alley, disaster struck. I had forgotten just how awful those places can be for a person who is sensory-avoidant as my eldest child and I are. Bright, flashing lights; nasty-sounding, flickering fluorescent lights; booming music; loud noises; strange smells: the place was awful! My eldest child had one go at bowling and couldn’t take any more. Her younger brother and sister were having a grand time though so leaving wasn’t really fair on them. I bought my daughter a drink from the bar and suggested she sat on the balcony, away from the lights and noise (or so we thought) while the younger children and I finished our game as quickly as we could. As we stepped onto the balcony my poor daughter who usually tries to mask in public (despite me reinforcing that she should always be herself and honest about her feelings) was on the verge of a very large meltdown, we stepped outside expecting relief from the sensory onslaught but, no, outside there were still flashing lights and booming music. I re-entered the alley and asked a member of staff if she would mind turning the music down outside, I explained my daughter’s situation and thought she would be happy to oblige as it was mid-week during term-time, we were the only family using the bowling alley at the time and my daughter was the only person sat outside. Unfortunately, the staff member was not so accommodating as I’d hoped and refused to turn the music off or down. I tried to argue but it was futile so I went to apologise to my other children and to tell them we would have to leave as by this point Emma had started to shutdown in order to avoid a meltdown and I knew that the short-term psychological damage from a shutdown could last a week or more. At this point, the staff member sauntered over and informed me that she would turn the music off, but only for a little while. The way she said it made me feel as though she was deeply put-out by turning off the music and was doing me a huge favour. I wondered if I should get on my hands and knees and kiss her toes(!)

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If the alley had simply turned off the music and lights for one session, my daughter need not have felt disabled that day. A shutdown could have been avoided and she would have been able to enjoy bowling with her family. Imagine a facility refusing to be wheelchair accessible, people would be up in arms! But because this is “just” autism, people assume the autistic individual should be able to “get over it” and cannot see how they are not being inclusive by having such a busy environment.

When I got home I wrote to the alley explaining what had occurred that day (I left out the staff member’s attitude as I didn’t want to get her in trouble) and asked them if they would please consider running autism-friendly sessions during their least busy period so that children like my daughter could enjoy their facilities. They failed to respond despite me sending another message a few weeks later. Please feel free to spam their Facebook page with pleas to change their mind. index

“No person has been cured of autism and regrets it!”

Hmmm…well, the lady who posted this (I won’t link her blog) is half right I suppose: no person has ever been cured of autism! Those who were forced to go through behaviour modification therapy have been left with myriad mental health issues, but, hey! At least they don’t make their non-autistic counterparts uncomfortable by stimming and at least they can talk without using echolalia, who cares if they’ve attempted suicide multiple times because of what they’ve been put through, they can look you in the eye and talk about the weather(!)

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“ABA is hard for me too! I hate seeing my child go through it but am doing it for their own good!”

This one is heartbreaking, these parents clearly love and care for their children very much, the suggestion that ABA is abusive is abhorrent to them, why would doctors suggest something harmful?! The problem is that many of the people who suggest ABA are not autistic and have never been subjected to it. ABA is taught in colleges and universities as a miracle cure and why should a doctor not believe what they are taught by their professor and why should a parent not believe what they are told by their doctor? This creates a vicious cycle of endless autistic people being put through harmful therapies under the name of progress with nobody really understanding what they’re doing wrong. ABA was first developed in the 1970s by Ivar Lovaas and Robert Koegel at UCLA, it was adapted from methods used by Dr Sidney W. Bijou in the 1960’s which he had formed using Skinner’s theories of operant conditioning. The reason I’m giving you this little history lesson is to point out that Skinner himself, who developed operant conditioning, eventually conceded that “punishment, unlike reinforcement, works to the disadvantage of both the punished organism and the punishing agency”.

Long story short, ABA does not work to “cure” anybody but can ultimately lead to the psychological destruction of the autistic individual. If you are a parent or carer, considering ABA for your loved one, I implore you to explore other options. Speak to autistic adults: both those who were put through ABA and those who were not; strive to understand your child more so you can see where behaviours you’re struggling with come from; look at other ways to help your child, including helping them to overcome any comorbid conditions (such as anxiety and depression) that may be affecting their behaviour and, above all, love them and empower them to be themselves and to be happy being themselves, don’t suppress their personality or coping mechanisms just to make other people comfortable.

 

We don’t need behaviour modification; we’re awesome!

 

Living with hypersensitivity and hyposensitivity.

“No two autistic people are alike…” just as no two any people are alike. In my household of five, there are at least three autistic people: myself, my eldest daughter and my son but our needs as people on the spectrum are very different, most notably in that my son is hyposenitive, whilst my daughter and I are hypersenitive. My youngest daughter is also hyposensitive. This makes for an “interesting” living situation to say the least!

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There are three children in this photo: bonus points if you can spot the hypersensitive child!

What does hyposensitive mean?

When I say that my son is hyposensitive, I mean that his sensitivity is greatly reduced compared to the experience of a person who is typically sensitive.

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Playing in the snow without a coat or hat because he can’t feel the cold.

He likes life to be fast and loud and he doesn’t seem to feel pain much, this combination means that he is often running into things or jumping/falling off things.

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Dylan showing off one of many injuries.

In six short years, we’ve had so many trips to A&E to have bones looked at and cuts glued up that I’ve actually lost count of the exact number of times he’s been.

In Dylan’s daily life he needs a lot of noise, touch and other sensations to help him feel grounded. His little sister (Heather, three years old) is the same and constantly wants to be in my arms or on my back. She needs lots of tight cuddles and is always making a racket.

 

What does hypersensitive mean?

As you can likely imagine, hypersensitivity is the exact opposite of hyposensitivity. My daughter and I experience noise and touch to such a degree that it is almost too agonising to bear. We are not huge fans of cuddling (in fact, my daughter despises cuddles!) and clothing labels, fabric running through our fingers and loud noise can cause us pain. A trip to the supermarket can be overwhelming with all the bright lights, noise, smells, colours, people and other sensations. It takes my daughter and I a while to recover from such a trip. We usually need time to alone, away from anybody or anything after being out in public for a while to recharge our proverbial batteries.

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This is how we cope with trains.

Our chaotic household.

Having two hypersensitive and two hyposensitive people living in the same house is not always easy. My younger children always want the TV on full-blast, my eldest daughter and I like it on quiet; my two younger children enjoy being loud and moving about at the dinner table, my eldest daughter and I would sooner eat in virtual silence, away from other people; my younger children want the lights on full, my eldest daughter and I would sooner have low lights…you get the idea! While the little two want everything to be loud, bright and busy, my eldest and I want things to be quiet, muted and understated.

We try to counter this by giving my eldest daughter a room to herself while the little two children share (we only have a three bedroom house). That means that the younger children can have toys scattered everywhere, bright lights and lots of colourful decoration in their room while my daughter can have a more sparsely decorated space with an empty tent to decompress in after a long day of people and sensory input. This also means that the little two can be as loud as they like, climbing, running and jumping in their bedroom as they feel a need to do while my eldest can sit quietly in her room reading or drawing as she feels the need to do.

 

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Part of my daughter’s room is full of sensory input but she also has an empty tent to retreat into when things get too much.

 

Mealtimes can be tricky to navigate in our house, the smaller children bounce up and down and talk loudly and gleefully as they eat while my eldest sits quietly, shooting daggers at the smaller children and telling them to “shut up”. We get around this by arranging the seating very carefully, the little two children sit next to each other while Emma (my big one) sits away from them. Sometimes if we go out for dinner she will even find a little single seater table close to us and sit there instead of at the table with the rest of us, this draws some funny looks from strangers who probably think we’ve banished her from the family table! It’s what she needs though and the judgement of strangers doesn’t worry her or me; when you live in a neurodiverse household you learn to grow a thick skin and ignore the people who want to pass judgement.

Just to complicate matters.

Of course, life never likes to make itself too easy for us and a person who is one day hypersensitive can be hyposensitive the next. Humans, by their very nature, are fickle beings so it stands to reason that our sensory needs would fluctuate from time to time. My older daughter and I do have occasions where we become sensory-seekers and my younger children also have occasions where they become sensory-avoidant. I suppose this is positive in that it gives us a chance to see life from the other perspective, thus making us more empathetic towards each other’s needs. We muddle through in our household of varying needs, trying our best to accommodate each other where we can, even when we need very different things.

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The usually hypersensitive Emma showing us that sometimes even sensory-avoidant children make a lot of noise!

 

 

Understanding Behaviours.

  The biggest problem a lot of parents of neurodiverse children have isn’t truly their child, but that they can’t understand their child’s behaviours or where they come from because they simply cannot see the world from their point of view. (Ironic really that so many autistic people are accused of having “mindblindness” when often their neurotypical caregivers experience that same mindblindness regarding their autistic children.)  I have three children, my eldest daughter is nine and is diagnosed with Asperger’s. She is essentially a little me, I can easily empathise with her and see where all her behaviours are coming from, why she is displaying those behaviours and how, if necessary, to help her navigate her emotions and behaviours. My seven-year-old son (under assessment for PDA and ADHD) is a different kettle of fish altogether, I often find myself looking at him and thinking, “Wow! Where did that come from?!”

Recently I was speaking to an autistic (naturally!) expert in autism and he gave me some wonderful tips for helping me understand my son’s more baffling (to me anyway!) behaviours. I will share those tips in this blog in the hopes that they will help other parents who are left scratching their heads over their children’s behaviours.

Understanding the child’s point of view:

The most important tool in any parenting toolkit is probably empathy. Empathy is what helps us soothe a screaming baby at 3am, even when we’re exhausted ourselves; it’s what makes us cuddle a teething toddler instead of getting cross with their endless noise-making; it makes us run to our children when they fall and helps us to understand how a teenager is feeling when they have their heart broken for the first time. It is undeniably a very important part of human bonding, but what happens when a child and parent have very different worldviews? This upsets empathy and makes it very hard for parents to see where the child’s behaviour is coming from and so, a behaviour borne of anxiety will be called “naughty” or “stubborn” and parent and child end up locking horns, seemingly trapped in what the parent sees as an endless “power struggle” and the child sees as “unfair”.

In order to understand your children’s behaviour, you need to see the world from their perspective. An example from my own life of what I found baffling behaviour is my son ignoring me and then screaming at me, hitting himself and kicking furniture when I tell him to come and get his dinner.  To help me understand what was causing this behaviour I drew an iceberg with the observable behaviour written in the tip of the iceberg, above the water. Below the water, in the body of the iceberg, I wrote all the thoughts and feelings that might be occurring “below the surface” of my son and around the edge of the iceberg, in the water, I wrote ways that I could help him navigate these feelings to make dinnertime a little less stressful for him (and us!). Dylan's iceberg profile

Using this model has really helped me see why my son gets so upset when I ask him to come for dinner and has made it possible for me to change our routine in order to make life easier for our entire family. I have used this model several times to understand a whole host of behaviours that my son displays which I previously had trouble understanding and have found it incredibly useful at gaining deeper insight into what is going on in his mind.

Giving the child the tools to understand and regulate their own emotions:

It goes without saying that the role of the parent in helping children regulate their emotions is incredibly important but it is also essential that children learn to identify their own emotions and know how to react to these feelings in an effective way by themselves. For neurodiverse children, this self-awareness and control can be a little harder to attain than for neurotypical children so it is vital that the parent provides the child with all the necessary tools to do this.

I have spoken about emotions and effective ways to deal with them with my children from the moment they were born, I have always told them how I am feeling and how I am managing those emotions as most children learn best by mimicking what they observe.

My eldest daughter is very good at recognising how she is feeling and always has been. In her bedroom, she has a tent with nothing at all in it so she can go and sit in there when she is feeling overwhelmed by too much sensory input. She also has a “Sensory Basket” which contains lots of things to feel, chew, smell, listen to and look at, including fidget toys etc. so that when she is in a sensory seeking mood she can use those toys to fulfil her needs.

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A selection of sensory items, fidget toys and music boxes from Emma’s Sensory Basket.

She has another box in her bedroom called the Happiness Box, which contains laminated (so they can’t be destroyed when she’s angry or upset) photographs of her favourite things, people, places and biggest achievements; drawings; certificates; a few small souvenirs from special trips and holidays; a music box which plays her favourite tune and other small items to remind her that she is loved and important when her depressed or anxious brain is telling her otherwise.

She also has ear defenders and drawing/art supplies dotted around the house as she finds hiding away with ear defenders on creating pictures and books a great way to handle anxiety attacks.

My son finds recognising and dealing with his emotions a little harder than my daughter does and needs a fair amount of support to identify what he is feeling, why he is feeling it and what he can do to change it.

In the iceberg diagram above I mention the “I feel; I choose” board, this is a tool which has really helped my son to understand himself and regulate his own emotional response to situations. He usually needs reminding that it is there when he starts to feel intense emotions but once he’s been reminded of it, he finds it fairly easy to change the labels to the appropriate emotion and action.

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Each card made for the board is laminated with a Velcro sticker on the back so it can be added to or removed from the board as often as Dylan needs and all the emotion cards have a simple picture and single word to describe different feelings while the action cards mostly have pictures of real things from his life (picture of his favourite teddy, his trampoline etc.) to help him quickly identify what may help him.

My youngest daughter is only three, pictured below is the most useful tool she has for recognising and regulating emotions:

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Daniel Tiger.

 

Happier home:

With good emotional understanding from both the parent and child, a happier home can be created and obstacles overcome. It is taking me a long time to recognise why my son behaves the way he does but I like to think that we are getting there slowly and hopefully one day I will be able to have the calm and happy home I dream of!

What it’s really like to be an (honestly, I am so sorry for typing these words) “autism mom” *vomits*.

(This post is one from my Facebook posted in May 2018.)
Aaaaaaaaaaaargh! So this questionnaire popped up on my timeline as a “suggested post” this morning. The puzzle pieces and use of the word “Autism Mom” instantly triggered me. I clicked the link and was greeted by the following message: “Autism is a diagnosis no mom wants to hear, but strength emerges to help us overcome the obstacles for the sake of our child. Sharing your story is a tribute to you and all autism moms around the world.” By this point, I was swallowing bile and shaking with anger so I went away for a while to calm down. After I put the kids to bed tonight I typed up the following in response to their patronising questionnaire. Probably not the answers they were hoping for.

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What is it like being an autism mom? The ups, the downs, and the emotional struggle.

My children are wonderful, creative, intelligent people. My daughter is the most empathetic person I’ve ever met; kind even to those who (in my opinion) do not deserve it. Thanks to a lack of understanding regarding autism, kids (and some adults) can be evil. Being neurodiverse in a neurotypical world isn’t easy for my children. They face prejudice and cruelty on a near-daily basis. My daughter got bullied daily at school yet she still sent Christmas cards to and invited the very kids who bullied her to her birthday parties. Why? Because, she explained to me, we don’t know what is going on in those kids’ lives and minds, we don’t know why they act the way they do and excluding them and being nasty to them makes her just as bad as them. My son is less understanding towards the people who make his life hell but he’s still a caring, loving person with a hilarious and unique view of the world. His understanding of history is astounding and he’s always teaching me fascinating new facts. Being a parent to autistic children isn’t hard or a “struggle”. What is hard is trying to raise autistic kids to be happy adults in a world dominated by neurotypicals, in a world where difference is frowned upon and penalised. What is hard is feeling as though I’m screaming, unanswered, into a void for my children to be treated like humans and for them to receive the support they need from school and other services. I home educate my children now because they were losing themselves in the school system. I hated watching my daughter’s vibrant personality dull and disappear thanks to the constant grind of bullying and being subject to punishment for being autistic at school. I despised watching my funny son become depressed and withdrawn thanks to teachers who couldn’t see what the sensory onslaught of the classroom was doing to him. Being a parent to autistic kids has its ups and downs, just like being a parent to neurotypical kids. We have good days and bad days but the good outweigh the bad because I am understanding of my children’s needs: I know that forcing my daughter to eat white food will cause her immense distress so I don’t serve her white food. I know that my son needs visual reminders to plan his day, so I make him visual reminders and help him use them. I know that the bright lights, crowds and noise in the supermarket is too much for my children to handle, so I don’t make them come to the supermarket (or, if I absolutely have to, I make it easier on them with ear defenders, dark glasses and stim toys). My children and I have fun together, we love reading stories, trips to the forest and caring for animals. My daughter adores drawing and is a fantastic artist. My son is very interested in history and loves taking trips to museums.

What fears do you face as you raise your child?

I fear that my children will lose sight of who they really are if they become too affected by the criticism and hate thrown at them by the neurotypical world.
I fear that “masking” and trying to fit in just to make neurotypical people more comfortable will hurt my children’s mental and emotional health and will lead to lifelong psychological problems.
I fear that a lack of autism understanding means they’ll have difficulty finding employment, even though they’re capable and intelligent people.
I fear that the one track mind of many neurotypicals regarding communication means that when my son communicates his needs and wants in any way other than verbal, he will go unheard.
I fear that my children and I have to justify their behaviour with the words, “They’re autistic” instead of people just accepting that not everybody is going to react to the world the same way.
I fear that some “autism charities” are still searching for a “cure” that nobody on the spectrum wants.
I fear that the stigma attached to autism is so great that even a site which claims to be there to raise acceptance of autism uses the sentence, “Autism is a diagnosis no mom wants to hear…” I fear that parents are being told it’s natural to enter a “mourning period” upon hearing their child is autistic as if autism is some terrible beast which snatches children away from their families. I have a lot of fears as I’m raising my children but none of them are because my children are autistic, they are because my children are autistic in a world which fears autism.

What do you wish other moms knew about what you go through?

I wish other people knew that my children are amazing, funny, compassionate people. I wish that instead of looking at me with pity when I tell them that my children are autistic, they just accept it as another facet of my children’s personalities.
I wish I didn’t have to say, “They’re autistic” just to stop other people staring and tutting and making snide remarks when they see my children dealing with difficult situations in their own way. I wish that acceptance was truly acceptance and people just accepted that the world is made up of many different types and we shouldn’t have to explain ourselves just to make you stop judging us.
I wish that other parents of newly diagnosed children knew that a “mourning period” is not expected or normal, your child is still the same child they were yesterday: love them, accept them, empower them to be themselves and they will show you how strong, capable and wonderful they really are.

Do you have other autism mommies who have inspired you?

Absolutely not! “Autism mom” is a term that turns my stomach. As if autism is some personal attack on the mother.
The people who have inspired me are people who are actually autistic. If you’re reading this and have a recently diagnosed child, I implore you to speak to people on the spectrum, learn what their world is like, learn what they dislike about the neurotypical community and how it treats neurodiversity and strive to make a difference. Educate others and empower your children. Don’t make them think they have to hide who they are to make other people comfortable.

A bit more of an introduction.

(I have spoken to my children about this blog -and any articles or books they’re featured in- and they are happy for me to include their pictures, names and stories. If at any point they change their minds, I will edit the blog appropriately.)

On this day, some time ago, I was lying in a hospital bed, holding this wriggly red thing and wondering, “Why does it have no eyelashes?”

Nine years later that wriggly red thing is an amazing, funny, compassionate child called Emma who has taught me a massive amount about life, autism, myself and many other things. I’ve also added two more wriggly red things to my brood: seven-year-old Dylan and three-year-old Heather.

In our crazy, neurodiverse home no two days are the same and no moment is predictable. Our home is loud, funny and full of love and chaos.

This time last year Emma was desperately unhappy, she was anxious, self-harming daily and not speaking or engaging with her family at all. We could see that it was the pressure of masking at school which was causing her anxiety so made the decision to pull her out of school to home-educate her. Since then her emotional, social and academic progress has been exponential. In December 2017, seeing how well home ed’ had worked for Emma, I decided to pull her brother out of school too as he was also not coping in mainstream school; he was spending his days hiding under a table shouting, “LEGO! LEGO! LEGO!” and making no social or academic headway what-so-ever.

Planning Dylan’s school day requires some cunning as his PDA (pathological demand avoidance) makes him anxious if I tell him what to do. To get around this I usually offer him a choice of two tasks to complete so he has some control over his education. We also spend a lot of time learning in the community and by taking lots of trips. The children love visiting farms, zoos and museums. They also really enjoy trips to the beach and forest with our dog (Daisy). Home education gives us the freedom to visit lots of wonderful places on days when they’re quiet, which, for a family who can’t cope with too much sensory input, is marvellous!

I will look forward to sharing details of our journey on here over the coming years.

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