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 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 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!