I Have A 2 Year Old Born With Vacter Syndrome And Huge Developmental Delay And Desperately Need Advice

[DanaG]

Hi, my name is Dana and I live in Australia. I am a single mum and I have a little boy James who is 2 years old. James was born with Vacter Syndrome and has 6 months or more in developmental delay.

James is unable to talk and becomes very frustrated when he can't tell you what he wants. James is always banging his head on floors, glass doors, his bed rail or the cement. I have spoken with his dr but he says that this is normal behaviour. I am very concerned about him hurting himself and no matter what i do, James still is banging his head. James is doing this a lot and he could be playing and then next minute he would be banging his head for no reason.

I would really appreciate some advice on how to deal with this and still gain the control back. So if there is any parent out there who can help me, I beg you please help me to help James to stop hurting himself.

Thank You.
Dana

Dana, that you are not getting any help from your gp!

I have no SN experience, but have you ever heard of a programme called The Baby Whisperer? Can't remember the name of the woman but she was well-known for sorting out problems with children (though NT afaik). I remembered about her because one programme she did was with a little boy who was always headbanging in frustration. IIRC she put padding on the bars of the cot and big beanbags in each room, and got the mum to lie the boy on a beanbag each time he started headbanging. There was a lot more to it than that though ... sorry, hope this is of some help.

Welcome to mumsnet btw. Bear in mind that it is almost midnight here so you won't get many replies just now - try bumping it in a few hours (ie post a . on this thread or something so it comes back into Active Conversations) and you might get some more helpful responses!

Hi and welcome
My dd has cp so can't really help. but can you not get a hat to protect his head. dd has one as she is liable to tumble on the floor. at least this would help while finding long term ways to deal with the concerns.
we also have paddin on dd's bed as she was getting her legs stuck.

hello DanaGmy ds is 5 and is ASD,he has little speach and uses PECS (Picture Exchange Comunication System (i think??))

just woundering if anything like that would be suitable for your son?

here is a PECS site hope it helps

and before i forget welcome to mumsnet

Hi Dana. No speech at 2 isn't that unusual, although frustrating for the child. Are you using any signing with him?

Hi Dana

Am very sorry also to read that you are not getting any help from your GP. He should be referring you to specialists who understand this syndrome at more length and you certainly should not be left without any form of medical support.

Have put up details of this website for you so hopefully this will help a bit with regards to James's medical conditions. Apologies if you've already come across it:-

www.vaterconnection.org

I wish both you and James well

Dana - I am also in Aus - whereabouts are you. Welcome to mumsnet first of all?!?!

Perhaps you can bypass your GP and contact Disability Services here - they will send someone out to see you and do an assessment and hopefully be able to provide therapy support. I was able to contact them straight without a referral from my GP. I have a daughter who is soon to be 4 and she has down syndrome.

When my daughter was non verbal ( and still is somewhat) I use Makaton with her. It is a form of signing - very easy to pic up - it took her a little while to recognise what was happen but that she was able to communicate and get something.

aussie reference site for makaton

Secondly is there something you can do about protecting his head?!?!

sorry to ask so many questions.

Anyway Hiya from another mumsnetter down under!!