Living with a Child with Hidden Disabilities

I have a five year old daughter who is disabled.

You wouldn’t know she was disabled, unless you see her having a ‘meltdown’. I know she has disabilities; her Occupational Therapist knows she has disabilities; her Paediatrician knows she has disabilities; her Teacher now knows she has disabilities but refuses to accept their extent. No one else knows.

Obstetric history

When my daughter was born she was premature (and had a whole host of other problems associated with premature birth as well as non associated conditions.) She was slow to suckle, crawl, walk etc. Along with ongoing feeding problems she also started to develop likes and dislikes of textures and colours of food. She’s never been steady on her feet, is always covered in bruises and is completely unaware of her own safety – such as walking off the end of a climbing frame, letting go when holding onto a swing. Jumping and hopping – well, you may as well just forget it!

Parental suspicions

I always knew there were problems in her development; I can’t tell you how I knew. I just knew. Any parent who spends time with their child knows when there is a problem. You may not be able to identify exactly what the problem is, but you know it’s there, long before any professional may even detect a potential difficulty.

The closer she got to starting school, the more concerned I grew about her and her behaviour, in particular her food issues. I started to read up through the internet about certain conditions that these behaviours can be linked to. From my research I concluded that she demonstrated some common traits for a child with dyspraxia.

Support from Professionals

Coincidentally had an appointment with the Paediatrician (NHS) and spoke to her about the concerns I had; she said that she would make a referral to the NHS OT (Occupational Therapy) Department. I went away rather unsatisfied as I’d had no confirmation one way or another, as if I was barking up the wrong tree and being a neurotic mother.

I did what most other concerned parents would do, I got on the phone after finding the Dyspraxia Foundation website and called my local branch, who were so very supportive and they listened to me and let me talk through the concerns I had and the behaviour I was seeing from my daughter. They then mentioned that if I was looking for a very good private OT to assess my daughter they could provide me with the name and contact details of one. I am in a very fortunate position that my daughter and I are fully supported by my mother, and she agreed to pay for the assessment.

The lights go on

The assessment was carried out in December 2010. I was told immediately that I was right. There was a problem, she did have dyspraxia and a whole host of other issues related to dyspraxia and some non-related issues. I cried.

I was right. I knew I was!  A report was compiled and I was shocked that my daughter was functioning so well as part of a normal school class and socially, given the findings of the ten-page report. Eight pages of the report dealt with her problems and two pages were suggestions about how to help her cope with the world.

We are currently working with the OT to enable my daughter to manage her surroundings better. Her schooling remains an ongoing concern (more to do with the school and their reluctance to treat this as a serious concern, despite having been provided with the same report).

Meanwhile, I received a letter last week from the NHS to tell me that they’ve received the referral from the Paediatrician and she’s now on a waiting list for OT assessment so possibly in another year or so she will be seen by someone from that organisation, when she is almost ready to move onto a much more demanding education system. My message to all parents who suspect that there may be problems with their child’s development is:

If you suspect there is a problem with your child PLEASE push for assessments to be done. NHS assessments are hard to come by and very long to wait for. Do it sooner rather than later!

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