 Dyspraxia
Amanda Lane's son Joshua (6) suffers from dyspraxia. She tells
babyworld how the family live with such a difficult condition.
I knew something was wrong
Joshua was born with congenital dislocated hips and, as a result, needed
several operations to correct his left hip. (Fortunately, the right hip
resolved with a Pavlic Harness.) Consequently, Joshua was very slow to
reach his motor milestones such as crawling and walking but we always
assumed it was his hip problems. Joshua began to walk around the age of
2 and was very unstable but again we assumed this was normal given his
hip problems.
The unsteadiness and wide gait continued and, on one of our routine follow-up
appointments with the orthopaedic surgeon, I said I wasn't happy with
his walking and there was clearly something wrong, if not with his hip
then there was something else. He confirmed that the hip was fine and
there was no reason for the walking difficulties.
He then referred us to a neurologist for assessment and consultation.
The neurologist ordered an MRI scan of Joshua's brain and spine. In addition,
it was noticed that Joshua had lax ligaments, meaning he is very double-jointed
and all limbs are overly flexible. We got the appointment for the scan
but unfortunately they were unable to sedate him for the scan, it just
didn't have an effect on Joshua. So the scan had to be abandoned.
It was the worst case of mobility dyspraxia she had
seen
In the meantime, Joshua started school and, at his first parents' evening,
his teacher expressed concerns over Joshua's behaviour. His writing ability
was extremely poor for a child of his age, his behaviour was also very
immature and he seemed to be having trouble settling into the whole school
routine. In the playground, he loved running round but was constantly
bumping into other children and had no awareness of people near to him.
As you can imagine we were devastated. Joshua is our only child and,
as a result, we had nothing to compare him to. We had noticed his mobility
problems but not his behaviour. We went back to see the neurologist to
find out what was the outcome of the failed MRI and told him what the
teacher had said. The neurologist thought there was no point in pursuing
the MRI scan and told us that Joshua had dyspraxia.
We were then referred to another paediatrician with a special interest
in dyspraxia and began a long round of occupational therapy and physiotherapy
assessments. Again, the diagnosis of dyspraxia was confirmed. The consultant
did say that it was the worse case of mobility dyspraxia she has seen.
His unsteady gait continues to be a major problem.
Joshua gets extremely frustrated with himself
Because of his condition, Joshua walks with an extremely unstable gait.
He struggles with a knife and fork and needs help with his feeding at
times. He is also unable to ride a bike and to do activities that require
co-ordination, such as hopping, skipping, jumping and running. He has
problems processing information, such as making a decision and following
simple requests. He also needs help with getting dressed and undressed.
His lax ligaments have led to severe constipation and, as a result, he
takes laxatives. He is also not able to go to the loo properly, which
leads to frequent soiling and many 'accidents' when out and about.
He struggles with writing and colouring and other tasks, which require
manual dexterity. Stairs and steps are a struggle for Joshua and he needs
to have supervision when around them as he is prone to falls. As a result,
Joshua gets tired and extremely frustrated with himself for his inability
to perform tasks that other children in his class can do quite easily.
This, in turn, leads to behavioural problems, as Joshua is unable at such
an early age to express his frustration appropriately.
In some ways, it is like having a toddler
Joshua has no awareness of danger and so needs to be watched constantly.
It is hard to leave him with anyone, as his behaviour can be a problem.
He gets overexcited and can be a handful. His grandparents are unable
to look after him alone as they can't manage him all that well, especially
with his bowel problems. Although Joshua is almost six, in some ways it
is like having a toddler with the amount of supervision and input he requires.
Joshua is only aware that he has a problem with his walking. We have
not explained to him why it is as he wouldn't understand at the moment.
Perhaps when he is older we can explain in a little more depth. In addition,
children with dyspraxia are prone to low self-esteem as a result of their
difficulties and I don't want Joshua to realise this is going to be a
problem all his life (not yet anyway).
Despite all his difficulties, Joshua is very self-confident and extremely
independent. He doesn't like asking for help.
Even if they fail, it is vital they keep trying
I would urge any parents of children with special needs to not be afraid
to seek help. If support groups are available then use them, as they are
a valuable source of information and tips from other parents who have
'been there' already. The temptation to do everything for your child is
overwhelming, as it is a parent's instinct to protect their child. However,
it is important to allow your child to try to do things for themselves.
Even if they do fail, it is vital they keep trying. Take whatever help
is offered, in the form of occupational therapy and physiotherapy, and
continue with these for as long as possible.
Obtaining special needs input within a school is a minefield. Again,
access a parent user-group to help you to get the best for your child.
Above all only settle for what you are entitled to. After all, it's your
child and their future you are shaping.
Where to next?
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