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.

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!

 

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!