I’m not an Anxious Parent…. normally

Regular followers know that Little Miss H is autistic.  She is a master masker and the way her autism affects her is not always readily visible to others.  She internalises.  So a child who flaps externalises their anxiety or over-stimulation, Little Miss H has the same reaction to various stimuli but instead of flapping her hand/arm, her stomach muscles do the action instead so her innards clench and squirm, she gets extreme butterflies in her tummy and her heart beats faster, her reaction is private, hidden but no less there and no less real.

I can read her signs and can see the stress usually, but I am her mother and I know her well.  Others generally can’t.

She’s a master masker and it can take years to see the real her especially if you only see her occasionally.

We go to appointments and the moment the practitioner appears, her personality changes.  Her mood shifts and her behaviour alters.  She’s Selective Mute as well, so often she folds in on herself both physically and vocally – her head shrinks down in between her shoulders like a turtle’s neck retracting, her head tilts down and she barely looks up, she positions herself behind me or into my side and goes quiet, her voice changes, both tone and timbre.  Sometimes timid, sometimes gruff.  She becomes I child I don’t recognise.  I’m beginning to get familiar with some aspects of these sides of her and learning ways to interact with her when she is like this but it’s not something we get to practice as it only happens in certain situations which we can’t replicate so it’s not something I am familiar with enough to be the experienced confident mother.  I’m practicing on the job if you like!  Sometimes she’s compliant but shy, sometimes she’s aggressively resistant, sometimes she’s silent, sometimes she answers questions, sometimes she doesn’t tell the truth as she just says what she thinks they want to hear, sometimes she shouts, sometimes she whispers.  Sometimes she’s scared, sometimes she’s angry, sometimes (though rarely) she’s fine!

I never know which way it is going to go, it all depends on so many variables; who else is in the waiting room, time of day of appointment, whether she’s hot, hungry, thirsty, how her day has gone so far, whether the practitioner is a male or female, whether they are warm and welcoming or cool and professional, how they greet us, and so on…..  She can sense when someone is analytical rather than open and she feels on edge by that.

It’s not like she shifts into one single other persona that I recognise and am familiar with – her reaction is unpredictable and erratic and as a result I’m working it out as I go, whilst also trying to achieve whatever the appointment is about.  I’m testing the waters with my daughter as I go, walking on egg shells trying to prevent a meltdown, trying to focus on getting the important information across, trying to maximise the preciously short appointment time as any future appointments or help depend on this one achieving its aim….

I therefore can appear surprised, distracted and anxious – but that’s because I’m in the room with a stranger and as a mother to that stranger I’m having to make it up as I go along.  I’m thrown and I don’t know what is right.  If my ‘parenting’ in that moment is unsuccessful it’s because it’s all new to me and I’m feeling around trying to find what works.  It doesn’t mean I am a bad parent.  If I contradict my daughter it’s because I’m telling the truth and am not being dismissive or neurotic.

So to the practitioner I say;

If I speak to my daughter in a certain way, say certain words, try a certain strategy it’s because it HAS worked before – that’s why I look surprised and flounder when it doesn’t work in front of you.

I feel the full weight of your judgement on me.  I’ve been blamed too often for my daughter’s hidden disability so yes I am anxious when familiar territory abandons and fails me.

So please understand that if I appear anxious it’s as a RESULT of my daughter’s erratic behaviour and not as you so readily presume, the cause.

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A darker side of Autism

** trigger warning**

Below is a post from my personal Facebook timeline from two years ago.  I posted it not long after we’d moved up here to Scotland.

Those of you who have read past posts may be aware that we have had a struggle getting support since our move to Scotland.  That despite a firm diagnosis of Autism some ‘professionals’ doubted Little Miss H’s diagnosis.  They even accused me of making it all up.  We have been accused of bad parenting and emotional abuse; it was claimed by some that getting her diagnosed was emotionally abusive! (I’ll just leave that there for the moment but I have a separate post in mind about that for another day).

The fact that those accusations happened at all is beyond belief but when I look back at behaviours and manifestations that Little Miss H has endured and suffered through (and still does) it makes my blood boil that there is so little compassion (and support) for such a little girl who deserves to be acknowledged for who she is, specifically as an Autistic little girl.

It breaks my heart that a child would feel such anxiety that she’d pick her skin to the point it bleeds.  She has done it since she was very young but it had just dawned on me that what we were dealing with had a name.  That name is ‘self-harm’.  Obvious with hindsight I know.   At the time though it hit me like a sledge hammer, she’d been doing it since she was 2 or 3 and at the time of the post she was 6.  The impact this had on me was huge.  The realisation that this was a very real aspect of her autism felt overwhelmingly suffocating.

The fact that she felt anything strongly enough to drive her to the point of hurting herself made me feel like I’d let her down.  The panic I felt that I hadn’t previously done more to fix it or support her through this behaviour left me feeling substandard.  The fact I had ‘allowed’ her to feel so bad broke me inside.

Obviously we had tried many things to help her not pick her skin.  I thought it was partly sensory seeking behaviour and we tried many distractions and redirections.  I did notice it got worse with anxiety and we tried to deal with the anxiety itself rather than the behaviour.  It’s not like we had ignored it, been blind to it or not been pro-active about trying to help her.  It’s natural that I felt sad but why did I feel so bad, so guilty?

Part of my reaction was to force myself to acknowledge it out loud.  Part of my reaction was to share in case it helped anyone else and part of me wanted to educate others about the generality of this, so often unspoken, part of autism.  Part of me though just wanted to say ‘my poor baby is struggling, I find that hard and life isn’t perfect’.

So I shared on my personal time line.

I got so much support from many friends but was criticised by some too for talking about it so publicly.  How very British, to suggest I keep it behind closed doors.  I felt ashamed that I had posted about it when I was criticised.

I also realised then that Facebook served as more that a social media outlet, it was part of my support network.  I had moved to a new place where I didn’t really know anyone, was struggling to get professional support in place for all our needs.  Facebook was a world where people ‘got it’, so I resolved not to feel shame and to embrace the reality of our life.  I need the support network my ‘invisible’ friends give me.  (That’s you lot by the way – thank you!)

More though, telling our story may help someone and if we can make a difference in one person’s life, make one person feel less alone, then it’s all been for something.

So to those that find it triggering I’m truly sorry, please don’t read anymore and come back for the fun stuff elsewhere on my FB page later – hugs and strength to you.

To those who just don’t want to know scroll on by.

For those of you who want to learn, understand and support – the original post is below.

“So Little Miss H is a self harmer.  A horrible statement to make as a mother – I feel like I have failed her.  Her Autism causes her such anxiety that she hurts herself and makes herself bleed.  She is 6.  This in itself is sad enough but what breaks my heart is she now seems to realise that it’s not “normal” behaviour so she is now hiding it and lying about it. This further masks the problem that causes her to do this in the first place making it even harder to identify the cause and help her.
It’s no wonder that the average age for diagnosis of Autism in girls is 12, the professionals involved with Little Miss H still can’t always readily see her Autism manifesting itself and if she’s now hiding some of the most overt tell-tale signs how on earth am I going to get her the help she needs?
I feel like I am at the bottom of a hill….every time I try climbing the hill it turns out to be a volcano, erupts, pushes me back down and just grows into a bigger hill….. sometimes life is a bit of struggle here”

I’m thrilled to say that we are managing this aspect really well at the moment – she still picks when anxious but her self-awareness as she matures is helping us find other, healthier coping mechanisms/management strategies and her scars are fading.

We still don’t have support up here but I have learned that I am enough.  She needs me, I am here and I always have and will do my best for her.

To my brave, strong, amazing Little Miss, you are safe and I love you.  You will never have to walk through life alone.  I am so proud of you, every single incy wincy bit of you.  Thank you for being you, Mummy xox

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.

An Open Letter

We relocated from England to Scotland two years ago and arrived with formal diagnoses in place.  Our transfer of support should have gone smoothly yet we have found ourselves in the position of having to justify those diagnoses and fighting for acceptance.

It wasn’t easy to get Little Miss H diagnosed, everything took time, it was a slow process with long waiting lists but after presenting enough evidence and after assessment over a prolonged period the professionals found that she met the criteria for an ASD diagnosis.  Our family are in no doubt that it is the right diagnosis given her father is also diagnosed and we received it as a welcome relief.  It enabled us to access supports for her that otherwise wouldn’t have been available to us and goodness knows I was on my last legs doing it all myself – I needed help.  More than that I needed recognition of our reality.  I needed someone to ‘see’ us.  This was all at the same time that Tiny Miss H was under investigation with ultimately being diagnosed with a very rare chromosome deletion.

Regarding my Tiny Miss and her diagnosis I was told by various professionals at the time; “Good catch Mum”, “Wow, they always say the Mother knows”, “your instinct was spot on”, “she’s very lucky to have been diagnosed so young, it’s a chance to make a positive impact on her prognosis”, “not many would have caught this so young, well done” and so on.

I even have a hand written letter from one of our most significant professionals involved with us, who on hearing we were moving to Scotland wrote to tell me what a pleasure it had been to work with us, to have been part of Tiny Miss H’s progress and she wrote about me “you are the PERFECT therapy mummy”.

We had very positive relationships with mutual respect and I was reluctant about losing that when we moved.  I was reassured by many that I had established good relationships once and I’d do it again with great referrals up to their counterparts and it would be much easier this time round.

Imagine then soon after moving up here to be falsely accused by social work of emotionally abusing my children by having them diagnosed, of ‘heightening’ their needs and making up their conditions.

To be accused in essence of Munchausen syndrome by proxy – they didn’t say as much in those words but the implication was clear.

It has been 18 months of hell.

It’s been a hard fight to clear my name but we are now gradually coming through the other side with the accusations now withdrawn, vague apologies given for our distress but a general lack of support to help us recover.  The shock, hurt, damage to my self-esteem and erosion of my trust is still an ongoing issue as a result.

We have the advantage of living on the border of two healthcare areas and we were accessing services for the children in area A, since the debacle of the accusations we have now transferred over to area B to have a clean slate and a fresh start. A second ‘move’ (even though physically we remain in the same place) means tens more appointments and the whole rigmarole of meeting even more new professionals.  Exhausting but worth it for the clean slate.

At one of these appointments yesterday I was made aware of a report that I knew nothing about stating that a consultant who had met us for an hour, hadn’t seen much to support [Little Miss H’s] diagnosis.

This undermined the fresh start and all it did was cause confusion and raise questions from the new consultant which then led me to having to justify and explain and relive the nightmare.

Below is an open letter to the consultant who wrote that report, which I have written as a reaction to the above.

Dear Professional

I come to you with trust and an assumption that you will use your power wisely.

I trust that you will listen and that you will hear us.

I trust that you will respect us and appreciate our story.

I trust that you have experience in the subject we are speaking to you about and that you have faith in your colleagues.

I trust that you will afford me mutual respect and trust.

I understand that you spent a long time learning and training to become a doctor, I respect that fact.

I expect you to respect my intelligence, my experience, my intuition and my intent.

I expect to work with you, to be a team, to work together.

To behave one way to us and then write something else in a report to your colleagues that I have no knowledge or sight of is a betrayal of that trust. .

Your casual dismissal of your NHS colleagues’ diagnosis of my daughter is astonishing and quite frankly worrying.  You discredit them without taking time to question or investigate.  That by extension, in my eyes at least, discredits you.

My mind boggles at the arrogance of your reaction.  To immediately assume you are right rather than resolving to learn from this diagnosis, from us, from her.  Where is your enquiring mind, that is presumably needed for continual growth as a doctor?

It is not fair to put my child at risk of lesser service and treatment by casting doubt and confusion over what was an unambiguous diagnosis.  By casting a shadow of doubt you also serve to undermine me and my credibility in my role as her main advocate.

What makes you think that after an hour long appointment with me and my daughter you know her better than the team who diagnosed her over a period of two years?

That hour with you was not an in depth assessment, it was a surface level chat with me whilst my daughter tugged on my arm to leave until she was persuaded to sit, draw and colour in ‘nicely’.

You didn’t express any doubts to me or give me any opportunity to explain how her autism affects her.  Not once did you ask how the diagnosis was reached, if you couldn’t see it, not once did you give any indication that you disbelieved us, not once did you give me the opportunity to clarify for you the manifestations of her autism – you never asked.  This shows your lack of respect for me and for my daughter’s diagnosis.

Your callous disregard for my opinion, my experience and my expertise is insulting.

As a mother I KNOW MY CHILD.  That is all I should need to say, but if I need to justify myself my degree (Bsc(hons) in Psychology with child development being my area of specific interest) and my life experience which includes nannying and teaching children supplements my parental experience.

I have lived with autism, ADD and dyslexia in my husband for 11 years and I have experience of parenting an autistic child for 8 years.

I’d say in terms of both intensity and time this is at least equivalent to specialist training that you undergo to become a consultant.

I’m certainly not saying I could be a consultant but I am saying that I am an EXPERT in my child and my child’s condition.  Where your experience is broad, mine is specific.  But make no mistake it is no less valuable.

How arrogant of you to dismiss my daughter without even endeavouring to understand her diagnosis.  Every case of autism is unique and therefore an opportunity to learn.  How many girls on the spectrum have you dealt with in your career?  Regardless of the answer to that your level of expertise will not be more than mine in the case of my daughter, so at the very least the wealth of my experience is a valuable resource to be used rather than ignored.  We could have worked together for her benefit.  Instead my energy available to her is diluted by having to spend my time justifying myself and her diagnosis unnecessarily.

I can rationalise and justify why I know you are wrong, you cannot reasonably explain why you believe your colleagues who diagnosed my daughter and me to be wrong.

The average age for ASD diagnosis in girls is twelve.  The reason that early diagnosis is so hard in girls is that some, often in the high functioning section of the spectrum, mask, mimic and hide behind coping strategies.  They are chameleons in society.  They are masters at pulling the wool over your eyes.  They will only show you what they want you to see.  One often can’t tell that someone is autistic just by meeting them briefly.  IT IS A HIDDEN DISABILITY.  So from a medical stance the problems aren’t recognised but it doesn’t mean they aren’t there.   We come to you for help.

My daughter’s behaviour in appointments is often unrecognisable to me. She often behaves like a different person to the little girl we live with – she can be a Jekyll and Hyde.  She performs a role – the part is that of a little girl behaving how she thinks strangers expect her to.  She’s not relaxed at all.  It’s exhausting for her.  We spend a long time preparing her for appointments and it pays off.  She usually is distractable enough for me to focus all my attention on imparting a huge amount of information in a very short space of time.

She also behaves differently at school.  My husband (also diagnosed ASD) behaves differently at work than at home.  This is not unusual and is a very key part of high functioning ASD.  Having said that it is also a matter of interpretation.  My daughter’s manifestation of ASD is often visible if you understand what to look for.

Just because on meeting my daughter you can’t see her autism doesn’t mean it isn’t there.  It doesn’t mean she doesn’t need support.  It doesn’t mean I am making it up and it doesn’t mean you should discredit and dismiss us.

The very fact that my daughter was diagnosed at age five means firstly that medical professionals, trained in and with experience in the field of autism found her to be meeting the criteria for a diagnosis and secondly it’s meant that we have been able to access support.

This diagnosis has enabled EARLY INTERVENTION which in turn has meant that we have helped my daughter with coping strategies, we have worked on social skills and we have in place support, interventions and strategies that make her life easier for her to manage.

Add this support to a predisposition to mask and mimic means that meeting my daughter briefly probably means you won’t be able to tell she’s autistic and that’s OK.  It means it’s working.  It means our hard work to support her is paying off and her hard work is all worthwhile and it means that early intervention is the key.

If it is hard to tell that my high functioning daughter is on the spectrum then I take that as a compliment as a lot of blood, bruises (literal and metaphorical), sweat, tears and hard work goes in to that outcome.

It can take as long as eighteen months for my daughter to ‘let you in’ if ever, in terms of showing her true self to you.  Many people, even some of our own extended family haven’t seen some of the true issues that we as a family have to deal with due to my daughter’s autism.

Now she is eight she can vocalise that she behaves in a certain way at home because it is her ‘safe space’ and she ‘relaxes’.  This states to me that life for her outside home doesn’t feel safe for her and that it is hard work and not relaxing for her.  We all have a duty to understand that and respect that.

Being diagnosed at five is unusual and significantly younger than the average age of diagnosis.

The fact it is unusual must therefore mean that there cannot be that many doctors out there with extensive experience of such young girls on the spectrum.

Rather than suggesting ‘you haven’t seen much to support her diagnosis’ – how about resolving to learn from her?  I would suggest a better phrase would be “I don’t have enough experience to recognise it in her” then add it to your bank of experience.  Act with some humility and learn from it.  YOU DO NOT KNOW IT ALL.  After all if you’ve met one person with autism, you’ve met one person with autism.

If she had blood tests showing something you’d accept them without question.  Why not accept behaviours, traits and struggles as equally telling.

It is your duty to let the evidence guide you – but if you don’t listen to the evidence it can’t.

As a (loving, kind, resourceful, credible, rational, intelligent, eloquent, instinctive and intuitive) parent I know my children.  Life with them can be tough.  Please do not make it harder.

Thank you.

From a disappointed Mummy.

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.

***

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!