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.

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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!

 

Today I Cried – 2nd June 2016

Today I cried.

Tiny Miss H took part in her first ever school sports day.

I cried with pride.  But I also cried out of sadness.  I’m naturally positive and see the wonder and majesty in all her achievements but today I felt a sadness.

She brought up the rear with style and panache. She looked like she was enjoying herself until about half way through her race when she looked slightly lost, confused, tired and sore, her left leg dragging, her gait unsteady.  But she did it, she ran the whole way from the start to the finish, straight into my arms.  She gave it her all as she always does.  I couldn’t have been prouder.

I cried with pride, I cried with joy and I cried with sadness.

Whilst she was at nursery her physical challenges were at times more of a hidden disability, at times subtle and partly camouflaged by age and stage differences.  Today they were on public display.  Today they were smack in the face, screamingly obvious.  I’m not sure I liked that.  It made her vulnerable and it made me fiercely protective of her.

Today our world changed.  I was no longer a warrior mum proving to others her challenges are real, advocating for her to protect her and fight for what she needed.  Today I needed to hug her, hold her, protect her and show her she is amazing.  Of course I’ll always be her warrior mum, advocating for her, fighting for her but the battle lines have changed.  Now I don’t need to prove what I am talking about.  Now I’ll be heard.  Now they can see it.  Now it’s real (until now a tiny part of me hoped it wasn’t – that’s denial for you).

Today our world shifted on its axis and today I saw the challenges she will face, the battles she’ll have to fight.  Until now I’ve been able to fight them all for her.  So far I have won.  Together we win.  Now in a small way I have to hand over the reins to her.   I know she can win.  I hope she knows that.  I hope she’s seen in me enough to guide her through the tough times.  It scares me, but I know she is brave and I know she’ll give it her all.

Her starting school marks the start of an independence that is too big for a small person to have to face and for children with differences that’s huge, for them and particularly their parents.

Today my world changed.

Today I cried.

Sports Day -2nd June 2016

Tricky, tricky week here at H2Au towers.  Today is sports day and the build-up causes such anxiety for Little Miss H.

Last night she couldn’t handle her emotions and she couldn’t sleep.  She finally fell into a disturbed sleep at 2am and was awake at 5am.

Her normal Thursday routine won’t apply and she can’t handle that.  The fact she doesn’t know EXACTLY what sports day entails (in spite of taking part last year, she can’t generalise her experiences).

Details that worry her include; what she’ll be doing, where she’ll need to be at any given moment, who will win, who will be there, who is in her team, what the weather will be, whether lunch will be affected, what snack they’ll be having and whether she’ll be able to have the snack given her allergies, when/where she’ll get changed, will she know how to do what she needs to do etc etc

These are all questions she has asked this week.

She is also excited because her team won last year and she likes winning so is fully expecting to win again.  If they don’t, the fall out will be disproportionate and will need careful management.  We have been working on expectation management and making plans just in case.

Adrenaline will get her through the day.  She will ‘cope’.  We will manage.

This regular stress on her little body coupled with the lack of sleep is unsustainable and causes fatigue which impacts on her hypermobility so she may not do as well today as she is hoping/expecting and she can’t make the link.

The fact that she’s been awake since 5am means so has Tiny Miss H who does not function with fatigue.  Tiny Miss H is to be at sports day as part of her school transition management and that fact is causing Little Miss H further anxiety as it’s another facet she needs to be aware of and in ‘control’ of.

In itself it’s a big day for Tiny Miss H as she prepares for her, soon to be, new school and has all the emotions and challenges associated with that.

For Tiny Miss H a school sports day is something we never dared to dream she may take part in when we received her initial diagnosis.  Hard work and determination have meant she now is able to be there and furthermore actually take part in the ‘new starters race’ – a challenge in itself for her emotionally as she is beginning to become aware of her differences in ability and in terms of it is daunting to be the tiniest at big school and most new starters will be feeling some anxiety.  A challenge also physically as she isn’t as able/stable/fast on her feet as her peers.  To do this on top of sleep deprivation impacts more than you can imagine.  It manifests in challenging behaviour and screaming.  Which further compounds everyone’s stress.  It also means she will be more prone to accidents and falling and she will require more physical support generally throughout the day. For example she fell on the stairs at nursery this morning due to tiredness.

The lack of sleep for me has its own issues regarding my pain levels and therefore my patience and ability to think on my feet, my ability to help Tiny Miss physically and my ability to employ the various different strategies each girl requires to support them to manage their own tricky days.

So a simple sports day becomes a gauntlet and I have to run it carrying two little misses, both metaphorically and literally and all on three hours sleep.

What could possibly go wrong?!!

Have a great day people.

#bringmecaffeine

Welcome to H2Au: the stuff of our life

This is the excerpt for your very first post.

Welcome to my first ever blog post and my first ever blog; H2Au: the stuff of our life.

This blog is a personal story of our family’s life with Autism, a rare chromosome disorder and auto immune disease.

With this blog we are doing our bit to raise awareness.  We may only be one drop in the ocean but we will never see the tide of change unless we first create a ripple. Wishing for acceptance of all invisible conditions/disabilities is fruitless without first making people aware and educating them, so here we are to share our story.

What is our story?  Our story is of our family and our journey through life.
We are a family coping with lots of stuff. We live in Scotland, UK.

Let me introduce us;

I’ll tell you more about us another time but for now a brief introduction of our ‘stuff’.
Mr H is diagnosed with High Functioning Autistic Spectrum Condition (dx as an adult in 2013), ADD and Dyslexia.
Mrs H (the author) is diagnosed with Hypothyroidism, Crohn’s Disease and Fibromyalgia.
Little Miss H is diagnosed with High Functioning Autistic Spectrum Condition, Sensory Processing Disorder, a rare chromosome deletion, hypermobility, Select Mutism and has traits of Pathological Demand Avoidance (PDA).
Tiny Miss H is diagnosed with a rare chromosome deletion, Global Developmental Delay, hypermobility, hypotonia and Sensory Processing Disorder.

The interplay of all these diagnoses is complex and as much is ‘hidden’ or invisible, the struggle can be subtle and lonely. The aim of this blog is to raise awareness and acceptance of the very real issues that we experience.

I can promise that the story is raw, real, funny, sometimes sad, informative and hopefully inspirational.

Dive on in!