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SN children

Here are some suggested organisations that offer expert advice on special needs.

Not sure now if I am looking for things that are just not there...

7 replies

teamtwilight · 24/01/2012 12:01

...or I have come accross some of the worst proffs ever!! Sorry this is going to be long!!

Ds is 5, in yr 1 at school. He was first seen by senior nurse who works with the paed as a team Feb 2011. (Have tried to see the paed but no luck) Nurse puts us on ASD pathway. He doesn't interact with ds. He observed him while we talked but no toys in the room just a bed and chairs, so ds constantly asking to leave.
We wait untill Oct 2011 for ed psych to visit son in school. School hd says ds is fine, no trouble. Ed psych disagrees with ASD, says purely behavioural and puts us on list for some parenting strategy support.

We see nurse again Jan 2012, he does a full u turn and says behavioural, nothing we can do, wait for the parenting support.

Yes I have behavioural issues with him. They come in peaks and troughs (few months manageable, few months hell). But why is nobody listening to me. I am not the best mum in the world but I do impose rules, ty to keep to a routine.

Ds has tioleting issues. Still soils himself most days and wets bed every night.

He has hearing issues although passed a test a few months ago appears not to hear what I say most of the time. Occasionally he gets stressed by other sounds like the washing machine, turning pages of a book or baby crying but this is not all the time.

He is very touchy feely, constantly flopping all over me or needing to touch.

Hoards things/hides things in his bedroom, paticularly shiny things. Went in the other day and found a spanner, tape measure, bottle opener and my hair brush.

Doesn't and has never slept well. Nightmares, sleepwalking and screaming etc.

Has always been very boisterous. Has a mouthfull of his dinner then does a lap of the room etc.

His teacher now says he costantly fidgets, needs to touch etc

Not sure what to think anymore. He appears very normal, good eye contact, knows when your happy or sad. Can adapt to change. Seems to be liked by his friends.

My gut feeling says somethings up, but now doubt myself. If I go for second opinion and they too thinks it's purely behavioural where does this leave us? I have done a parenting course already. I really don't feel like i'm a bad mother and don't see what else I could do to help my ds......totally lost!

OP posts:
whatkungfuthat · 24/01/2012 13:04

Please don't feel like you are a bad mother, you have done everything you can to ask for help and are being given the run around. This happened to me with DS1 who is now 13. The thing that really jumped out at me from what you said was about his hearing, it could be severe glue ear which is seasonal. My DS's hearing is really reduced in the winter due to glue and when he was small he couldn't hear in the high ranges at all and this affected his behaviour. Your DS may or may not have other needs but don't underestimate the frustration and effect on behaviour that hearing loss can cause (my Dsis is totally deaf and has been all her life) DS1 also has asd but this is a separate issue.

Try and get a referral to ENT to get him checked properly if you suspect he can't hear very well as long term glue can cause infections and scarring that may mean reduced hearing later. FWIW no one listened to me at first about DS's hearing as he was often tested on a 'good day' when the glue wasn't too bad.

StarlightMcKenzie · 24/01/2012 13:11

Take that list ti GP and ask fir referral to develo

StarlightMcKenzie · 24/01/2012 13:21

Develo

StarlightMcKenzie · 24/01/2012 13:21

Developmental paediatrician

shazian · 24/01/2012 13:49

Teamtwilight, you are a good mUM, otherwise you would not be that bothered about trying to help your ds. Please try for second opinion. IMO all these professionals only see our dc for the time of appointment approx half hour and dont know them. Usually when i go, its typically on a good day so ds is great. You know your ds, go with your gut instinct. Good luck

teamtwilight · 24/01/2012 16:25

I will take the list of concerns to my GP. To be fair he is really good.
I wish we could start afresh but I just know I will get to see the same people.
The proffs always have an answer to every concern I have...oh he's young, oh that's every child, oh it's behavoural.....sooo frustrating!

OP posts:
Justabouthadenough · 25/01/2012 22:14

The peaks and troughs in behaviour suggests glue ear to me. I'd want another referral to audiology, describe the behaviour to them.

The touchy touchy links to hearing as well. (or at least it does with my dd) I think it's the need to reassure herself that I am there as she can't hear me or get reassurance that way. the world doesn't make sence if you can't hear properly, so a lot of behaviours are learnt as coping mechanisms, to try to make sence of the world.
Chase to see the pead again (i got dds referral to pead from audiology) and refuse to see the nurse.

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