Children's Health

[Elaine1952]

My 6-year-old granddaughter has tremor ataxia, hyper reflexia and global developmental delay. Although she can now walk, she doesn't have much co-ordination, is always falling over, doesn't speak (though she does make noises), doesn't like to look at you when you speak to her, doesn't smile broadly (just a slight rise of the sides of the mouth), doesn't cuddle, doesn't understand right from wrong, takes a lot of pain before she cries (even glandular fever didn't make her cry) and it's worrying no knowing if anything will ever change.  The best Children's Hospital in Great Britain has done all tests but she goes to a mainstream school and I feel she will be better at a specialist school.  What do you think and will she improve as she gets older?

[ducky406]

One thing you might be able to do is volunteer for her class. The carer's may be on the best behavior but that way you can see at least some of what is going on during the day.

[Elaine1952]

I must say, I am quite concerned about what the carer actually does with my granddaughter all day.  I know she changes her (my granddaughter doesn't know what a potty or a toilet is, so she has to wear nappies) but other than that, I haven't the faintest idea.  My granddaughter always comes homes with letters to say she has fallen and hurt this part of her or that part of her, which makes me wonder exactly what do these carers do for her?  She really needs something to stimulate her brain and from what I gather, the school were going to build a sensory room, but never did, just gave my granddaughter some tiny sensory toy!!

I just wish I knew if she will improve, as there is no real name for what is wrong with my granddaughter, but will be ever know?

[ducky406]

Yeah I knew a someone who was like a "carer" at school- went to every class with a kid in high school who didn't know English. She didn't know Spanish and a fat load of good it did him. The teachers were at the front talking and teaching the rest of the class, ignoring him. The lady who was trying to help him couldn't tell him more than to stay on his homework packet. He barely graduated and it was only because he found bilingual classmates who helped him through school. So if she's being made to be in a regular classroom and being treated like Jose (just pushed around so no one has to deal with him), I'd seriously push for a special school. It's cruel to take a child with learning disabilities and expect them to do as well as they can with traditional learning methods when they obviously need more.

[Elaine1952]

Thanks for your good advice.  To be honest, the hospital said they would give my daughter all the relevant back-up she needs to try and get her daughter into a special needs school, so I think we should try and get her moved to one.  To be honest, in her present school, she is supposed to be having speech therapy, but we have yet to see any improvement.  She has a carer with her all the time she is in school but to be in a normal classroom environment that isn't aimed at her specific needs is not really suitable, as I feel she should be having speech therapy much more than a few hours.  My daughter was told my granddaughter does not need physiotherapy because she can walk, but because her balance is so bad and she has no real co-ordination, I feel she should be getting physiotherapy - to strengthen her legs and get her to use them more effectively.

[ducky406]

My nephew has asperger's and a special preschool made all the difference in the world as far as behavior goes. While he is currently in public school he has a special form filled out for his school that informs the teacher that he has certain issues and how to deal with them. So far so good- there are some gems in special education his schools and they've been really good at helping him figure out his strengths. (A week into his 2nd grade class his teacher realized he could read 2 grades higher and do pre-algebra so she gave him special homework and a special teacher.)  However his school is really ahead of the league as far as that goes and he wouldn't have been able to handle it without those in a special school specifically designed to handle with autism and other developmental issues.

Personally I'd push for a specialist school. People who know what they're doing can really make a huge difference. Definitely look into the school she's at, if her teachers are actively trying to work with her and she seems happy there then it should be fine to keep her at that school. But if you don't feel comfortable with the level of attention they're able to give your granddaughter- look into a different school. I don't know if anything will ever get better, but the best thing you can do is to make sure the people who are trying to teach her and trying to work with her have the ability and time to do so.