Girl on the outside

I sit here with tears streaming down my cheeks wondering whether you’ve noticed that the girls were mean to you today.

I suspect you have, as you’ve needed dark quiet since we got home, you were pale and withdrawn.  You went into shutdown.

I could see you desperately trying to be one of them.

I know you don’t know how to join in and I feel like I’ve failed you.

My heart breaks that you’ll never truly relax in social situations, it must be so exhausting for you.

I want to wrap you in my arms and make the world a kinder place.

 

I sit here with tears streaming down my cheeks, the mean girls excluding you ignites a flame of angry sadness within me.

I feel fiercely protective and want to rewind the week. I watch you try and I see their subtle rejection.  It’s sly, almost imperceptible and sophisticated beyond your years.

I pray you don’t notice and don’t feel that searing burn that rejection from a friend brings.  The betrayal, the apparent about turn.

But I see you notice something is off.  Your friend who you normally giggle with is cold shouldered and aloof.  She’s trying to impress an older girl and your sweet naivete isn’t cool enough.

Your confusion is encoded in your eyes and body; a language only I can read.

They are slightly taller and walk at a pace just faster than yours, their step in time, you a few feet away, trailing, rushing trying to keep up.

They whisper about secrets from their sleepover the night before, you know nothing about as you’ve only joined today.

They look to each other before deciding what to do next, your opinion irrelevant in their eyes.  They know you’ll fall in and do what they decide.

Their quiet confidence a stark contrast to your permanent internal questioning.  Their certainty that they belong, you the outsider, the visitor, the spare wheel.

I’m sorry my darling girl.  I feel I’ve failed you.  You don’t know how to join in, you don’t know how to be one of them.

We’ve tried to rehearse and practice but you avoid that sort of help from me just now.

I’m powerless to change the inevitable world you’ll face.

I’ve met them throughout my life too; the mean girls, the subtle exclusion that wields power over the one who doesn’t quite ‘get it’.

I wish I could make it easier, I wish I could make it fun.

Instead I say to you – “do ‘you’, be ‘you’ and be proud of who you are.”

Your intentions are pure, your heart is full and your soul is kind.

You are perfect and in the end you will find your tribe.

It won’t be easy and it won’t be quick but whilst you are waiting, be true to you.

Do what you love, be who you are and perfect the best version of you that you can.

It’s ok not to know what others can do naturally.  They don’t know what you can do excellently.

My promise to you is that I will never tire of trying to get people to be kind and compassionate.

I can’t promise to make people be different, as human nature is beyond my control, but if I can persuade people to behave differently then at least some good will have come from all of this.

In the meantime darling, I know you will continue to want to be friends with these people and I know they will confuse you.  I will try and enlighten that confusion but know I am always here to hug away your sadness or to give you quiet, dark space to decompress.

You are safe and I am the bubble around you that will keep you safe.

To the girls who were mean to my daughter I say;

Being a girl is hard and I know you are sweet inside.

I know you still play and giggle but I see you growing and changing.

You test the waters of growing up, dipping a toe into being a bit older

and playing older games that you make up as you go.

My daughter tried.  She can’t keep up, she’s wired differently.

Please be kind, please accept her as she is and please let her go gently when you inevitably move on.

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Why Funding Matters

As regular followers know Tiny Miss H suffers from hypermobility and hypotonia.  In real terms what this means is she isn’t as physically competent as her peers.

Technically, she has now incredibly reached her major milestones (after years of intense therapy) but she is neither confident nor consistent with her abilities and as a result mainstream activities are often not suitable for her.

We work hard on her physio exercises – we have equipment in the playroom and incorporate therapy into her play all the time.  We work hard, make it fun and get results but it doesn’t compare to being out and about taking part, socialising and having the variety of classes that most children access.  So we also have a blend of activities outside the home that we attend, to support her development as well as give her some fun.

She takes part in a mainstream ballet class and this works well.  At this age it’s fine because she is in a class with children younger than her who are at the same level.  As she grows older we will see whether the difference in her ability and stamina impact on her ability to keep up and attain the levels alongside her peers as they progress.

She also takes part in mainstream gymnastics – the exercises are adapted to suit her and she takes breaks in between to fully rest so she is not overdoing it.  Again there is a range of abilities and ages so at the moment she is not too conspicuous in her differences to the other children.  The classes are very taxing for her, loud, crowded, fast-paced and very hard for her.

However she is beginning to notice her differences and comment on them.  They are making her sad.  This obviously impacts on her self-esteem and confidence which is already very shaky.

The teachers worked so hard with her to achieve an assisted forward roll in class so she could get her first certificate.  She hasn’t been able to do a forward roll since so I think it’s a grey area!  The boost to her esteem of being awarded that certificate far outweighs the importance of whether she actually qualifies for it!  I think its lenience rather than cheating and I’m OK with that.  It works for entry level at age five.  But as she gets older and her peers progress at a rate unmatched by Tiny – what will happen to her self-esteem?  That’s why boosting it now is so important and I am so grateful to the teachers for their generosity.

Tiny has also been attending a motor co-ordination class which she was referred to by the physiotherapist. It is targeted for children with additional support needs and differing abilities.  She loves it.  She always goes in enthusiastically and works her hardest.  She’s relaxed and herself.  The activities vary each week and she can see her own progress.  It’s a smaller class than any mainstream classes and as a result Tiny gets the individual, personalised help she needs to complete each activity.  She also gets time to take things at her own pace.  And she is the same as all the other children who are importantly also her age.  She recognises their struggles in her own and she recognises their achievements as much as her own.  She’s with her tribe, she belongs. It’s a lovely atmosphere with kind, supportive staff who have been specially trained and who obviously care about all the children.

This is currently the only input we get from physiotherapy.  I manage her therapy at home and to be honest am not qualified to know how to progress each exercise or to adapt to target new areas safely.  To be quite frank I’m making it up as I go along.  I’ve learned loads from watching the professionals and implement it successfully at home but that is no substitute for the years of training and qualifications the experts have.  I’m not enough for my daughter to keep progressing.

Sadly until she falls behind significantly we won’t get outside help.  There just isn’t the funding.  She’s not ‘disabled enough’ I’ve been told.   I’ve shot myself in the foot, because I’ve done so much to help her she is now too able to get any help, yet she still needs help… we slip through the net.  We are in effect punished for our hard work and proactive early intervention.  The lack of external recognition for her hard work is disappointing. Her persistence at her therapy is to be applauded and she deserves recognition for her incredible achievements.  For me fire-fighting after we have hit rock bottom isn’t an option.  My whole philosophy of parenting is that of ‘early intervention is key’.  After she was diagnosed with ‘never likely being able to walk’, with the input and support we used to get we (I) taught her to walk – that didn’t come from nowhere.  Without the constant input she will fall behind and cease to thrive.  So there is no let up and I’m happy for that but I need support, I need help and I need guidance.

So I was desperately sad to find out today that the motor co-ordination programme is stopping due to lack of funding with immediate effect.  Tiny cried when she found out.  So did I.

It is not just about her physical development, it is about her emotional development and her mental health.  It’s about so much more than being able to stand on one leg with her eyes shut, it’s about being able to stand on her own two feet amongst her peers.  It’s about self-worth and it’s about giving these little people an equal chance at achieving their potential.

If you are in a decision making position with regard to funding of any sort please understand the full consequences of your tough decisions.  It really matters.

“A Very Bad Day”

“It’s been a very bad day Mummy” was the phrase repeated continually yesterday evening after I collected Little Miss H from school.

Standing in the playground I knew it had been.  I could tell by her gait, by her facial expression, by the purple bags under her eyes against her too pale skin, by the sadness of her aura.  As she slowly walked towards me, scuffing her boots along the salted concrete of the playground, her eyes downcast, her hand up to her mouth chewing her sleeve and her water bottle hanging forlornly from her other hand, I knew we were in for a tricky evening.

I suppressed the urge to say “stop scuffing your boots” (do you know the damage the salt does to the leather?), or “stop chewing your sleeve” and instead just held my arms open for her.  She doesn’t usually like public displays of affection especially at school (“It’s against the rules to hug and kiss at school”) but I could see she needed some overt love.

She didn’t come into my arms for a cuddle but she was demure and allowed me to touch her arm.

Her water bottle had been broken that day and she was frightened she’d be in trouble.  Mostly though she was just sad.  Disproportionately heartbroken actually.  You see change is hard for her.  Saying good bye to things is really hard.  Her stuff is her portable safe space that she attaches so much love and importance to, it keeps her grounded so to have a piece of it broken is like someone throwing a brick through your window.  It is devastating for her.

Of course I reassured her that the broken water bottle could be replaced.  [No it won’t be the same one, it’ll be a new one but you can choose it.  No I can’t fix the old one.  Yes I know X person gave it to you for your birthday and yes I know it’s the fourth one that’s broken in however long. Yes I know it matched your pencil case and yes I know it was a ‘Frozen’ one].

With an unexpected burst of energy she was suddenly confrontational.  These shifts come out of the blue.

We were due to take Tiny Miss H to Rainbows and this was suddenly proving too much for her.

She was shouting at me that she didn’t want to take her to “stupid rainbows” and it wasn’t “fair”, that she’d “be bored” and why should she have to go with us just because Tiny had an activity…. And so it went on.  The real issue is she wanted her safe space, she wanted to hunker down after an exhausting day.

The challenge is enabling Tiny to maintain an ‘ordinary’ life, which includes after school activities, at the same time as supporting Little’s needs.  If anyone has the answer on how to get the balance right please let me know.

There isn’t an option, she is eight years old, she was coming with us, so with my arm wrapped tightly around her shoulders we walked towards the car.  The deep pressure, once she’s ready to let me touch her, is very reassuring for her and being hypo-sensitive she needs a very tight squeeze. So it was that I held her as firmly as I could with one arm whilst holding Tiny’s hand with my other hand and walking clumsily as if in a sort of three legged race, bags bashing against my shins, all of out of sync, we somehow managed to get to the car!

That’s when she said it “it’s been a very bad day mummy”

Chats in the car are usually the most successful; no expected eye contact, the crowd and melee of the playground has dispersed and we are away from the source of stress.

It turned out that she had been “mobbed” and crowded around at lunchtime in the playground and she didn’t have the ability to extract herself.  She didn’t know what to do, what to say, who to go to for help.  So stuck in the mob, she drowned.  She’s carried that with her all afternoon.

The physical toll it had taken on her was visible to see.  She was anxious, stressed and absolutely exhausted.

This on top of the broken water bottle made it “a very bad day”.

Within the 7 minute journey home she had told me it was “a very bad day” about twelve times.

This is echolalia, repeating herself is a form of stimming.  It helps her cope with anxiety.

When she has bad days we have a ritual which helps her get from the car to the house and that is a “Mummy squeeze” once in the kitchen – a prolonged super tight cuddle.  It physically hurts me she is so strong, but it is what she needs so squeeze away we do.  I feel like a tube of toothpaste being squeezed, I can barely breathe, she feels like I’m lightly holding her yet I’m using as much force as I can muster!  “It was a very bad day” she mumbles into my chest.

This helps her calm and from there I was able to persuade her that whilst Tiny was at her Rainbow’s Pyjama party we would go and choose her a new water bottle.

Meanwhile she’d also clocked the box of books in the hallway that we inherited a while back from cousins and I’d been storing in the garage.  Luckily they proved a timely distraction!  “It was a very bad day mummy” she muttered to the books as she rifled through the box.

We successfully deposited Tiny at her pyjama party but with all the distraction I had forgotten her cuddly toy and blanket…cue a mini tantrum from Tiny!

Finally extricating myself from the clutches of the Tiny tirade – I escape outside frazzled and on tenterhooks to persuade Little to walk with me to the butchers before going on to buy her bottle.  Reluctant to walk anywhere normally I was braced for the fall out but in response all I got was “It was a really bad day Mummy”.  She was so well behaved in the butcher’s that they gave her a fudge.  She decided it had been worth walking!  “Still a bad day?” with an eyebrow raised, “Mmm” she shrugged, “it’s getting better”.

h2au-fudge

On to the supermarket to buy her bottle, I managed to persuade her to make a practical and useful choice that would withstand at least some playground action without too much argument.  We’d been playful and chatty walking round the supermarket.  Things had turned around.  I was still on edge keeping it light, keeping her happy.  Then we bumped into Tiny’s class teacher who stopped to chat.  The transformation from playful and chatty was marked.  Little Miss went quiet and couldn’t make eye contact.  Out of the context of school, her confidence had melted away and her anxiety kicked in.  To a stranger this would appear as ‘shyness’ but it’s different.

Selective mutism is an extreme social anxiety that results in an inability to speak.  It is involuntary and more than simple shyness.  I’m proud though as she did manage to squeak something to me as the teacher was walking away.  Then straight back to being chatty with me once we were safely alone again.

At the till, the cashier told us the amount and Little Miss repeated it in various voices, over and over and over again.  Anxiety making her repeat the words.  Again, her echolalia.  The opposite if you like from selective mutism.  Still anxiety driven and not necessarily ‘appropriate interaction’.  I could see the anxiety ramping up so a quick distraction technique was needed.  Her forte is maths so I made it her job to tell me how much I still owed each time I produced a coin and that busied her brain but in between each amount she still repeated the total amount in a strange voice.  The cashier was so patient, smiling and friendly and put absolutely no pressure on her, instead only complimenting her on the maths.  The fact there was no queue and no one else around at that moment helped all of us enormously.  I didn’t feel stressed or self-conscious, and Little Miss just did her thing.

h2au-supermarket-sm-to-echolalia

Once back in the car she asked for water and I didn’t have any.  I, almost flippantly, suggested she run back in to buy some.  My genuine intention was to buy time whilst I was finishing putting something away in my bag before going back in myself but to my utter astonishment she said “OK”!

So…We talked about what she would do, where she would go, how to choose what she wanted, where she would pay.  We talked about the change she’d wait for, the route back to the car and the fact I would not move from the spot I was in.  We land marked where I had parked for her to reference it.  It was a HUGE amount of information we covered.

She hesitated. She took the coin.  She ran.  She went round the corner…… I watched and watched and watched, heart hammering and holding my breath until finally there she was running back with a bottle of water in her hand, a smile on her beautiful face, pride in her eyes and flushed cheeks to show for it.

She had gone round the corner to the door of the shop, walked in, turned right to the fridge, chosen still water (not flavoured, not fizzy, just plain , it’s all she drinks), she stood in the queue with two people in front of her and waited calmly (“feeling very nervous mummy” she told me), and when it was her turn the same lady recognised her and helped her through, I’m still not clear whether she actually spoke, but she waited for her change, and ran back to the door, turned left, round the corner and sprinted back to the car “7 spaces down” she told me.  Climbed in out of breath, heart hammering (or was that mine?), asked me to open her water and drank it.  “I’m so proud of you darling” I told her,  “I’m really proud of myself” she said.

SHE DID IT.  I smiled with tears streaming down my face as we drove to collect Tiny.

“It was a very bad day mummy” she told me at bedtime, “but it ended well” we said in unison.

Anxiety vs Avoidance – As a parent how do I know I’ve got the balance right?

The burning question I always have as a mum is how do I know I’ve got it right?  How do I know my decision is the right one?

My daughter’s autism manifests in many ways but one of the main ways is anxiety.  She has enormous trouble decoding the world, processing the information and coping with change.

She can’t explain herself and self advocate when she is experiencing stress and it’s always with hindsight that the facts come out.  While she is experiencing stress she is in survival mode and doesn’t even recognise she is stressed until the stress stops.

This goes some way to explain how she holds it together at school and appears ‘fine’ and sometimes appears better than fine, she’ll be laughing and engaging but still comes home to fall apart.

This week has been so hard for her with staff illness and absence meaning unexpected substitute teachers.  Her week is not going to plan, it’s unfamiliar and the level of stress it causes impacts on everything.  She came home from school last night subdued and tense.  She was pale and clammy and being winter I suspected a bug, I took her temperature and it was normal.  She was not unwell, she is just exhausted and drained from the emotional toll of all the changes.  The evening was erratic, she was vacillating between tearful and angry, she was refusing school the next day and  refused to go to ballet that evening.

I decided to allow her not to go to ballet this time.  I usually push her outside of her comfort zones and insist she sticks to her commitments.  It was her choice to take up ballet and she’s really good at it, she has just achieved a high merit in her exam and was really (rightly) proud of herself. This term every week she’s tried to get out of going to class and I’ve not caved once.  It’s exhausting always battling and cajoling but it’s the right thing to do and furthermore we’ve paid for it, so she’s going!  She can never explain why she doesn’t want to go and I can’t get to the bottom of it so, commit she must.

After all the school changes this week however I felt that rather than fight that battle I’d keep her home and let her rest and hopefully increase the chance of her managing school the next day.

All evening her stomach was churning with anxiety about the following day at school.  A totally new teacher she has never met is taking them and this is all too new.  There are too many unknowns that haven’t been planned, prepared and practised.  It’s overwhelming for her.

She woke up this morning claiming illness.  It’s really avoidance.

My main aim is to get her to

  1. Correctly identify what she is feeling
  2. Correctly describe/label what she is feeling/experiencing

We have spent a lot of time talking about ‘the little boy who cried wolf’ over the years, we’ve read the book more times than I can count.  On an academic level she understands the concept but she is not equipped to manage putting it into practice.  So every time she experiences anxiety she claims illness.

She is eight years old.  Now is my time to teach her to recognise what her body is telling her.  To teach her how to self advocate for that.  To teach her that she will be believed when she says she is  feeling anxious and that it’s nothing to be ‘embarrassed’ about [her words].  It’s our chance to prove to her that she will be respected for the recognising her feelings and limits.  It’s our chance to nurture her, to build her into a strong person who can identify and manage her body’s signals.

We also have to be careful not to be manipulated every time she wants to get out of doing something for any reason other than her crippling anxiety.  She’s very bright, she’d make the connection and employ the tactic if she felt it would work.

So, as a mum, how do I know when to push her and when to nurture her?

Mental ill health in young people is on the rise.  The amount of pressure our children are under is at an all-time high and is in some cases damaging their psyches.  The amount of help available is minimal as the NHS mental health service is at crisis point.  Prevention is better than cure, especially when ‘cure’ relies on patchy service availability.

Autistic girls are a particularly vulnerable group and I’m very conscious of that.

Am I harming her or helping her by pushing her out of her comfort zone, by making her go to school?

What is the right answer?

I’m so proud of her, that today, with my and the school’s help she managed to go in.  I managed to tread the fine line of ‘coaxing without demanding’ well enough to get her to school and then with their help through the door, they are managing her transition into and through this tricky day.

Are they doing it right? None of us truly know.  Are they doing their best? Absolutely.

Am I worried that my daughter is suppressing her anxiety to meet expectations? Yes, very.

Do I feel conflicted about this? Yes, incredibly so.

Suppressing her anxiety is different from coping with it.  Suppressing it is quashing it, ignoring it and denying it which leaves it simmering deep down causing damage and delayed presentation.  Coping means addressing it, solving it, learning from it and leaving it behind.  It’s a fine line to find the balance.  How do I know I’m getting it right?

Whatever Works!

‘Whatever works’ is my parenting philosophy.  In fact I’d say it’s largely my philosophy to life… now!

Parenting Little Miss H has taught me that.

I’m adaptable, can fly by the seat of my pants and I make it up as I go along!

I’m instinctive and I am intuitive.

I’m dynamic and a do-er.  I’m more action than talk and I am not a ‘worrier’.  That is not to say I don’t care, I just don’t waste my precious little energy on ‘worrying’.  I act on what needs action and deal with facts rather than what-ifs.

Again that is not to say I don’t address future possible scenarios. Of course I do, I just don’t dwell on them.

I try to listen to my inner voice.

Drowning out all the external ‘noise’ can be jolly hard. Especially in this modern age of parenting where there is a book for everything, an expert on everything and too many people who feel entitled to an opinion about everything and everyone else’s lives.  I feel listening to our instinct is being culturally drilled out of us, parenting is prescriptive now and in Scotland at least, if the current government had its way, it would be state led too.

On the whole though I succeed on hearing my inner voice even if there is the odd occasion when I don’t act on it.

These traits have led me to be quite creative in my approach to parenting.  I’ve had to be.  Autism has made me react rather than prescribe.

Don’t get me wrong I am very traditional in many ways and please don’t mistake creative for airy fairy and wishy washy.  Little Miss H needs firm boundaries and assurances, there is no room for vagary in my parenting of her.

Little Miss H says I’m strict, I think her friends may think I am too.  I have high expectations of myself and of my girls.  Realistic but high.  After all, as the saying goes, if you aim for the moon and miss, you are still amongst the stars.

I stretch them and I support them stepping out of their comfort zones.  We have a hard work ethic.  We have needed it with all the therapy we have had to incorporate into our lives.  We are results driven and ambitious.  That, I believe is why Tiny Miss H can walk despite her prognosis.

Mr H would say to me “you’re Scottish, you’re feisty”, I say that’s no bad thing!

Parenting Little Miss H has taught me that traditional parenting or what’s called ‘parenting as normal’ (rewards/sanctions) is often not suitable for children on the autistic spectrum.  Their impaired social imagination means that they can’t envisage the day ahead for example the way a neuro typical (NT) brain automatically does.  This means that a feeling of being lost and confused drives their behaviour in pursuit of predictability – safety.

Autistic children have to be explicitly taught many things that are just picked up naturally by an NT developing brain, one example is personal space, an unwritten social rule that NTs ‘just get’.

This explicit translating the world and teaching of unspoken rules not only takes more parenting  and takes more out of you, it takes more out of them as a child.  Every minute of every day, autistic children have to work at understanding the world around them.  They can’t just ‘be’.   Little Miss can’t just be an 8 year old girl, she has to work at being an 8 year old girl, consciously thinking about what to do next, translating each scene she is in to figure out what she is expected to do next. Like acting a part, playing a role but without a script or screenplay.

Autism is context blind which means that she can’t generalise her experiences so each situation is a new situation for her.  She is building a bank of experiences like a library to call upon next time, but each one is only useful in the future if everything in the new situation is the same as that in the banked experience.  An NT child could pull up a mental picture and expectation of what the day would entail from that bank if we said we are going to a park, whether they had been to that specific park or not.  The reality would be close enough to the mental picture they imagine in that it would have play equipment, some grass etc.  Little Miss H can’t pull up that mental image as a generality.  She needs the exact input of what that park looks like.  What play equipment, what the slide looks like (colour, number of steps etc), how many swings there are, the layout etc etc.  Without this exact information the anticipation of the event is very stressful for her.  The reality once you get there is often more successful as she feels safe again.  This is the crux of the issue with transitions in autistic children.

Imagine being told you are going somewhere.  No details.  You just have to follow blindly and have faith with zero information about what awaits you.  Imagine then arriving somewhere you’d never been before and you didn’t know what you were supposed to do or how long you were going to be there.  You’d feel pretty uneasy too.

Well that uncertainty is what drives much of the behaviour in autistic children.   Add in the sensory element and you can see where problems arise.

This is why often the promise of a reward falls on deaf ears as they can’t generally visualise it anyway – even something positive causes anxiety so it isn’t a motivator.

The threat of a sanction eg confiscating screen time again isn’t something they are projecting forward to and imagining being without so behaviour modification is not achieved.

Every day I have to modify my interaction and parenting accordingly and this takes conscious effort and I can’t just react, I can’t just ‘be’.   I have to consciously think about everything we as NTs, normally take for granted.  I have to work at every day – translating it and explaining it, planning for it, pre-empting it and teaching it.

This process (of learning that many traditional aspects of ‘parenting as normal’ aren’t suitable) has resulted in us doing things our way and that’s OK.  We’ve had to make it up as we went along.  Each situation presenting a new set of criteria to figure out.  Trying to adapt the environment or situation sometimes is more successful than trying to address the behaviour itself.  Creative approaches to managing behaviour and redirections often take place instead of rationalising and using the behaviour as a lesson.  It might look like we are doing it ‘wrong’ but for us it’s right.

We might not reprimand when someone looking in feels we should.  We might not manage behaviour in a way that people think we should.  We might seem to let her get away with stuff.  We might do our thing, our way.  We might appear unnecessarily strict.  We might appear to be a kill joy by stopping an activity seemingly prematurely, we might not let her join in stuff that she seems (at that moment) desperate to do.  We might seem to be forcing her to do stuff that she seemingly doesn’t want to do.  We might appear to contradict ourselves.  We might appear to be ‘over rewarding’.  We might appear to be oblivious to stuff.

There are reasons behind everything we do.  A lot of work has gone into the way we do things.  There are days of trying every other way.  There are nights of sleeplessness from where we have got it very wrong, there are bruises from making a mess of it and there are bruises from doing it right.  There are oceans of tears from unsuccessfully doing it other ways.  There are rays of sunshine from the days it all works.

We do whatever works and that’s OK.

Tiny Miss H: Hypermobility + Hypotonia = Fatigue

As part of advocating for a child with special needs, one of the main roles is to make any adults working with them aware of their issues.

This becomes very difficult when they have a nameless condition that no one understands.

We relocated from England to Scotland when Tiny Miss is H was 2 years and 6 months old.  Not having the benefit of being aware of her from birth, the new professionals in her life needed coaching.  Much of her medical paperwork took over a year to be transferred and it seems that much went ‘missing’.

When she started nursery it then fell to me to brief them.

Below is an extract of the information we had to provide and I hope it goes someway to explaining what the issues are that she faces as well as highlighting how even something as routine as starting nursery is actually pretty complicated for a special needs parent.

“Tiny Miss H (TMH)

Diagnosis – Rare Chromosome Disorder

causing; Global Developmental Delay, Hypermobility, Hypotonia, Mild Dysmorphia, and Sensory Processing Disorder.

Background – TMH was very delayed in her development and was diagnosed just before her first birthday (after extensive testing) as having a rare chromosome disorder.  We were told then by her neuro-disability consultant that she may never walk or talk.  At the time she had trouble feeding, only had open vowel sounds, didn’t babble, couldn’t weight bear on her legs at all, was not mobile and had only just learnt to sit at 11 months after intense physiotherapy since 6 months of age.

She has achieved independent mobility and speech through early intervention, years of intense therapies, the use of Makaton, a lot of hard work and having a persistent attitude and a sunny outlook.  She is at risk of other issues potentially developing as part of her condition eg seizures.  We have no guarantees about what her future holds and we take her development one step at a time.

Hypermobility

Hypermobility is excessive movement of the joints which leads to instability.  This results from changes to connective tissue, particularly collagen which results in laxity of the supporting structures such as ligaments and tendons.

What this means is that her joints are not stable.  In order for her to hold her joints stable her muscles compensate for the weakness in her ligaments and tendons which means they do more work that they should.  This causes fatigue, both of the muscle itself and for TMH.  As she tires, her ability to hold her joints steady decreases and she becomes unstable (wobbly, clumsy, less intelligible etc). This can also cause her pain.

Hypotonia

Hypotonia is a state of low muscle tone (which is the amount of tension or resistance to stretch in a muscle) and reduced muscle strength.

Normal muscles are never fully relaxed and always have some degree of tension or resistance, TMH’s are weak and relaxed.  For her to use her muscles then requires extra effort which in turn takes more out of her.

Add this to the hypermobility and it means for TMH to achieve the physical tasks you or I do with ease, her body has to work disproportionately hard.

This extra effort means she is prone to tire more easily and much faster than her peers.  It also means she is at risk of injury.

Hypermobility and hypotonia combined caused her to be very delayed in her physical development. For example her walking, she took her first steps at age 2 years and 2 months after 20 months of intense therapy.

Aids to help her include her Piedro boots, Fox-Denton chair and buggy.

Whilst TMH is technically capable of sitting in a normal chair, doing so uses a disproportionate amount of energy for her – this in turn means her body is so busy working at balancing and holding her joints still, that she doesn’t have the resources spare to access the full learning opportunity of the activity she is partaking in.  However when she sits in her Fox-Denton chair, she is supported which frees up her energy to focus fully on the task in hand.

Likewise walking somewhere eg to an activity puts a lot of strain on TMH’s body which causes her muscles and joints to get tired which then means she is less able to fully achieve her potential during the activity at the destination, she is then at increased risk of accidents and mentally less able to engage in the learning.  Excess physical activity can also result in pain for TMH and regular breaks are required.  Having a finite amount of energy means it needs to be saved to be used appropriately eg in the activities rather than getting to and from the activities.

Fatigue will impact on multiple things including (but not limited to); her attention span, processing speed, her speech clarity, her ability to chew and swallow her food, her sleep quality (eg if in pain or if she hasn’t eaten enough as was too tired to chew), her risk of injury, her mood.

It is not unusual for TMH’s abilities to fluctuate throughout the day dependent on how fresh she is eg after sleep, how much energy she has eg after eating and drinking and many other variables which have an impact.

Her sensory processing issues mean that she cannot read her body’s signals, so she cannot identify when her muscles are tired or when she needs a break from physical activity.

Other sensory issues include (but are not limited to) identifying when she is thirsty, has had enough to eat, when she needs a nappy or what is in her nappy, noise sensitivity.

She needs a lot of prompting to identify how she is feeling and reminders to act on those feelings eg thirst, hunger, tiredness, toileting etc

TMH has also ‘unlearned’ things in the past so we are never complacent about her progression, she requires constant input to maintain her level of achievement.

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This description is to aid understanding of some of the issues faced by TMH and are examples and guides and are not complete or concrete instructions.  Many specific issues will evolve and change over time but her core physical challenges remain a constant thread throughout everything she does.

As TMH develops, her strength and stamina will too (we hope!) and we are always challenging her to build on both of those through therapy, play and appropriate supports.

If you have any queries or would like further information please just ask!

Likewise any ideas/contributions re support for her are equally appreciated!”

(some details have been removed to protect privacy)

Hopefully this shows how far reaching but also how subtle some of her challenges are and therefore how difficult they are to advocate for.  Some are disguised in an environment like a nursery as ‘age/stage’ differences which means sometimes tailored support can be overlooked and the constant battle to ensure she has the supports she needs is ongoing and something all special needs parents are familiar with.    We have been lucky with a good nursery.

The huge change for TMH comes from the consistent and constant input we have given her since 6 months of age, even pre diagnosis.  With hard work and early intervention we have changed her prognosis and parts of the house looking like the OT’s therapy room is a small price to pay.

I’ll post separately another time about how these challenges impact on my physical condition, as physically supporting a child when I myself am physically impaired is difficult, sometimes dangerous (i have nearly dropped her) and quite frankly at times rather comical.  We have had to be quite creative with our solutions, think ‘bumping up the stairs backwards on my bottom with her on my knee whilst singing to make it fun’ – but boy does everything take so much longer when you have to adapt in such ways!