Advice regarding my daughter

xxSpringyxx

Hi
I have an 11 year old daughter who could be called "Disabled" as she has a slight physical disability. A little info about her condition -

She has hypermobility that effects her hips and ankles mainly, this causes issues with her mobility but nothing to severe - she can walk, run etc and leads a relatively normal life and for that we are grateful. One of the issues with her condition is that she tires easily and doing things that she normally doesn't do can really through her body, yesterday she did a competition (disability gymnastics) and it involved travelling 3 hours there and 2 hours back, today she is on the sofa and has slept on and off most of the day and hasn't eaten (I am not after any medical advice - just given you a heads up on her condition and effects). My daughter used a buggy until she was 8 years old as she couldn't walk very far, this has now improved since joing gymnastics and having regular exercise (acts like physio). My daughters walking limit is around a mile but this cannot be done every day.

My daughter is also very short, she is the height of a 5 year old (she turns 12 this year). My daughter's life is very restricted compared to her peers, she cannot just pop out with her friends due to her small size because of the dangers if cars etc as she is so small, she cannot walk herself to school for the same reasons even though it is a 10 min walk away, I still help bath her as she cannot get in the bath by herself. I still do her hair as she struggles.

My daughter is due to go to high school in September - it is around a mile away or just over, I want to apply for school transport on medical grounds as walking to and from school every day as well as trying to walk around a huge school negotiating stairs (she can struggle on stairs) with a heavy back pack (these are large for her size and the high school doesn't have lockers).

Has anyone got any advice or experience with school transport, what to do etc. I don't claim any benefits for her except child benefit as I never thought she was bad enough for it.

kingfisherblue

Have you asked your GP why your daughter is so small? I think I would be concerned about her lack of growth.


Regarding her hypermobility and tiredness, my son is the same, although he has other disabilities as well. He cannot walk anywhere near a mile, though. I find that my son needs a lot more sleep than others of the same age. He is almost 17 and is in bed between 9 and 9.30, and gets up at 7.30 most days. He still has spells where he 'catches up' by going to sleep earlier, but this is partly down to his medical problems. My son has hypothyroidism, treated by daily medication. This can contribute to poor growth as well as intense tiredness. You might want to ask your GP if this is a possibility.


Regarding school transport - my experience is that SEN transport departments don't usually understand how hypermobility can be such a problem. Again, it is worth contacting your GP, as you may need back up when contacting the transport team. He/she may be able to provide a written report confirming that your daughter will not be able to walk to and from school every day due to a medical condition.

xxSpringyxx

kingfisherblue wrote: »

Have you asked your GP why your daughter is so small? I think I would be concerned about her lack of growth.


Regarding her hypermobility and tiredness, my son is the same, although he has other disabilities as well. He cannot walk anywhere near a mile, though. I find that my son needs a lot more sleep than others of the same age. He is almost 17 and is in bed between 9 and 9.30, and gets up at 7.30 most days. He still has spells where he 'catches up' by going to sleep earlier, but this is partly down to his medical problems. My son has hypothyroidism, treated by daily medication. This can contribute to poor growth as well as intense tiredness. You might want to ask your GP if this is a possibility.


Regarding school transport - my experience is that SEN transport departments don't usually understand how hypermobility can be such a problem. Again, it is worth contacting your GP, as you may need back up when contacting the transport team. He/she may be able to provide a written report confirming that your daughter will not be able to walk to and from school every day due to a medical condition.

Thanks for your reply.
My daughter has been monitered for her height since she was born as she was 5lb 3oz at birth (full term), she didn't really grow that quickly and started reception class wearing clothes for a 12 month old and infant size 2 feet, she now wears 5-6years clothes and is size 11 feet.
She has been in plotted on the growth and weight charts and has followed her own line on both, I am only 4ft 11 (husband is around 5ft 3) and so is my mum and sister, I have another daughter (same father) who is 3 years younger and is taller than her older sister and is not to short compared to her peers (short, but not the shortest in her class). We have had genetic testing and blood tests, full skeletal x Rays and nothing has been mentioned to say why she is tiny, we were discharged from paediatrician a couple of years ago as she grew 8 cm in one year (good for her) but this hasn't continued as she being monitored by the doctors again every 6 months with a view to being referred again if needed.

My daughter is happy and intelligent with no shortage of friends so I have no worries at the moment about her mental & emotional health but that might change when she goes to high school in September.

Indie_Kid

I have no idea how practical this would be:
If backpacks are a problem, have you considered the trolleys that are similar to laptop bags?

kingfisherblue

A good idea IK. My friend's daughter (admittedly at a special school) has one of these to transport her things each day.

pmlindyloo

I think it is vitally important that you make an appointment with your daughter's new school so that they are aware of your daughter and her needs and can make any adjustments necessary.

xxSpringyxx

I will have a look for one of those trolly bags, sounds like great invention. My daughters future school is aware of her, we haven't met anyone from SEN yet but I will make an appointment to speak to them soon. My daughter has been included in a transistional group to help the get ready for high school, she has already been to the ones held at the primary school and has now got to wait until June for the ones to be held at the high school. Uniform is going to be a bit of a problem as you can only order the uniform from their suppliers and they don't make the Blazers to fil my daughter, I want to get her a plain black blazer from BHS (it will be cheaper) and ask the school for a patch, the p.e kit will be a challenge, the trousers and shirts will be ok as you can buy them from wherever you like. The Blazer, Tie, and PE kit has to come from their suppliers.

My biggest issue is getting her to school, I cannot take her (don't drive) as I have a younger child in primary school and the schools are no where near each other. There is public transport but that would be too expensive and I wouldn't let her get on the bus on her own as she would be at risk due to her tiny size and she would barely be able to reach the pay tray on the bus anyway. I do not drive so cannot drive her there, she cannot ride a bike and even if she did the only one she would be able to ride would be a toddlers bike with stabblizers, it would also be too dangerous for someone that small to bike on her own.

Indie_Kid

You need to discuss the transport issue with the LEA. Do you know any of her friends who are going whose parents could help you out? Alhough at that age, most children were either (from experience) travelling by bus or walking by themselves.

rogerblack

xxSpringyxx wrote: »

My daughter is also very short, she is the height of a 5 year old (she turns 12 this year). My daughter's life is very restricted compared to her peers, she cannot just pop out with her friends due to her small size because of the dangers if cars etc as she is so small, she cannot walk herself to school for the same reasons even though it is a 10 min walk away, I still help bath her as she cannot get in the bath by herself. I still do her hair as she struggles.

My daughter is due to go to high school in September - it is around a mile away or just over, I want to apply for school transport on medical grounds as walking to and from school every day as well as trying to walk around a huge school negotiating stairs (she can struggle on stairs) with a heavy back pack (these are large for her size and the high school doesn't have lockers).

Has anyone got any advice or experience with school transport, what to do etc. I don't claim any benefits for her except child benefit as I never thought she was bad enough for it.

How you are describing her condition is very mixed, and some deep thinking may be useful.

One needs to be signifcantly disabled in day-day life in order to qualify for DLA.
From the perspective of DLA only:

If she has no mental issues, even though relatively physically unable, at 12, she would normally be expected to be able to be able to judge if she can in fact cross the road safely, for example - even though very short.

Questions will also be raised as to how much is you doing more than is reasonably required, and refusing to let her do things she can do for herself - or not adapting things to let her do it for herself.

For example - if someone is unable to get into a normal bath due to being short - that does not make them disabled - it makes them short.

They might be quite capable if - for example there was a bath gate, or a shower with suitably lowered controls.

This is one side.
The other view that would tend to make them entitled is if they can't do day-day tasks even if reasonable adjustments are made.
For example - does she not fully understand all the time that she is not as capable as her friends, and put herself in danger?
Does she get tired enough due to her stature and health that she is unable to care for herself as well as a child of her age would be expected to, and require significantly more care?

If so - she might reasonably be entitled to DLA.
Exactly what rate is unclear without a lot more thought - but it could certainly help a lot with extra costs.

This is separate from the 'reasonable adjustment' issues raised above that the local authority and all companies are required to do.
For example - it is clearly not reasonable to require a very small child to carry around effectively three or four times the weight of books of their counterparts.
Adaptions such as providing her books in an electronic format - perhaps on an ipad mini or similar platform may be reasonable.
Similarly - are there lifts for disabled children?

Even with the best will in the world - a child the same size as a 5 year-old on stairs with sleepy/... teenagers on their phones is a serious risk that the school needs to work out some means of catering to.

Similarly - there may be adaptions the bus company could offer.

cattermole

Has she seen an endriconologist regarding her growth? A paediatrician is a general children's doctor. Someone more specialist may be able to offer more specialist advice and possibly treatment it might be worth asking the GP for a referral to a paediadric endriconologist. Also x rays do not show bone density.

With the school uniform the supplier should be able to meet her needs as per the school uniform codes of practice and it should not involve any additional costs as a results. Schools should not contract with one supplier without catering for all.

Special needs transport is a very hot potato and is an area that many parents with children with SEN have a lot of problems with. With stretched resources it is becoming increasingly an area LA's are looking to make cut backs in. I would speak to the LA and school as soon as possible to discuss her needs.

Do hope you manage to get her settled into big school.

Middlestitch

xxSpringyxx wrote: »

I wouldn't let her get on the bus on her own as she would be at risk due to her tiny size and she would barely be able to reach the pay tray on the bus anyway. I do not drive so cannot drive her there, she cannot ride a bike and even if she did the only one she would be able to ride would be a toddlers bike with stabblizers, it would also be too dangerous for someone that small to bike on her own.

It's entirely understandable that you are protective of your daughter, but sooner or later she will need to start doing more things for herself and on her own. Adults with restricted growth (dwarfism) manage to take the bus and pay! Have you had a look at http://www.restrictedgrowth.co.uk/

Gymnastics seems to have helped her physically and in other ways - perhaps learning to ride a bike would, too? Perhaps worth talking to your GP/asking for an appropriate referral if you've not yet done so.