Thanks to everyone...It's nice to know I'm not alone with this! (long)

[Guest guest]

Hi everyone,

I'd just like to thank you all for your emails and reading your

stories. I didn't really understand about verbal apraxia as it is

only one of the many things not right with my son who is now

5, but after reading and digesting many of your thoughts and ideas I

have some serious questions now to put to my childrens' neurologist

at their annual visit in March. I feel that they (professionals)

and really overlooked Tom's verbal problems as their main concerns

have been due to his hypontia and cognitive delays. Apparently he

is running at about a 2.5yr old. He rarely says anything in his

school as it seems his surroundings are just too much for him, so I

have also read about sensory issues on this site which now make a

lot of sense to me and I admit I've become quite cross with the so

called 'professionals' here in the UK who I do not think have really

listenend to me or read all what I have written when describing my

little boy. I feel you are very lucky in the states to have a good

interevention programme. Tom gets physio and speech therapy, but

not specialised speech therapy, I feel he should be seeing someone

with far more knowledge and expertise in apraxia after reading all

this lovely information! One of the things that makes soooo much

sense now is the feeding issue. Due to his low tone, Tom normally

needs help with feeding, but especially when tired finds chewing

hard going, and we were always wondering why he tries to

continually 'stuff' his mouth to overfull - well I don't have to

wonder now! Also, the issue of putting practically 'everything' in

his mouth now makes sense too - we have now toys in our home that he

could possibly choke on as he's always putting them or anything else

he can get his hands on in his mouth. Also on the sensory issue, my

little girl 7, also has hypotonia and other issues and

is very 'sensitive' to noise, although over the years this has got

better, but going back to putting things in her mouth, I could not

get her night time dummies off her until she was 6 and her nightime

bottle til she was 5 - she just needed to have something in her

mouth when going to sleep, so that makes sense now too. I have not

got a 'proper diagnosis' for my children yet, although we have seen

a genetisist and have now finally ruled out the dystrophies (much

cause for celebrations in this house!!!) They (professionsals)

still feel it may be some neuromuscular syndrome or disorder, but as

of yet nothing has come to light! We are going to try Tom back on

EYE Q at half term (due to the bowel problems it caused last time)he

needs to be at home!!! so will report back if it makes a difference -

we are hoping so! The whole outside world just seems to confuse

both our kids, (we couldn't get to take EYE Q in any form of

disguise!!!) so I hope it will make some difference at least for Tom

who needs it most.

Well, I've woffled on here for ages, so a HAPPY NEW YEAR to you all

and your blessings, and here's hoping that this year is better than

ever!

Thanks again everyone.

Sharon from cold, foggy, North Devon, England.