• Replies 4 replies
  • Subscribers 25 subscribers
  • Views 1451 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Diagnosis limbo - what to do while I wait?!

frogger

Hi, my son is two in a couple of weeks - last week we were told by a paediatrician at the Child Development Centre that she thinks he may be on the autistic spectrum. She has referred him for a full autism assessment in 9 to 12 months time.  He has had some hearing problems due to glue ear, but got grommets 2 months ago - I had been hoping that it was the lack of hearing that has caused his speech problems, but his audiologist says that isn't the case.

My son has no speech at all - he makes some noises, but mainly a very loud 'dah' sound which is like a claxon going off!  The paediatrician says he has poor eye contact, impaired social interaction and that his language is well below what she would expect from a 1 year old.  A few months ago I started using basic sign language with him because he was getting so frustrated at not being able to tell us what he wanted, he was banging his head on the floor and walls and biting himself.  The sign language has helped his frustration and since he got grommets, he does seem to have 'woken up' to the world more.

He was babbling and had started to say 'birdie' at 12 months old, which dissappeared around 13 months and never came back.  He is also very poor at pointing to show us what he wants. 

I want to keep an open mind until the assessment but that could be a year away.  My concern is that it could be another 12 months until we get an answer and maybe I should be doing something to help my son in the meantime.

My son is really lovely (I know I'm biased!) and in many ways he's much less work than his older brother because he is so independant, but I don't want to let him down by missing something I could do with him at home. Also, he really hates the speech therapy group he goes to - he resorted to head banging the floor and hitting another parent the last time I took him.  The Paediatrician says he needs one to one, but when I said to the SALT's that I didn't want to bring him because it makes him distressed, they said they used the same techniques with kids on the spectrum and thought I should bring him.  I don't know what to do now.

Any advice would be so welcome - many thanks in advance.

 

Parents

  • Hi Frogger,

    i'm in a simlar situation to you, i have a 2 year old boy who will be 3 in march. i have known since he was young that something wasn't quite right with him. he does very stange things like rubs his noce up the tv, very specific to how he has things EG his bed has to be a certain way before he'll get in it, very fussy with food......and the lost goes on. He has no speech, he did used to say 2 words in a babish voice but then that all stopped around 19 months. He uses pointing and makes noises for things he wants. We have major issues with sleep also (i'm a very tired mommy ha)

     

    My son also has epilepsy, his eplielsy doctor agreed with me that things weren't 100% with him, we are due to have a full assessment in Febuary which we have waited 10 months for, we have to wait till feb for speech therapy.

    I have asked myself the same question what should i do while we've been waiting, i think just going about your day as you do maybe take him to play groups, we pay for my son to go to pre school for 2 days a week, which has helped him and the staff there are amaxing.

    Things will get sorted for you i know the wait is horrible it drives me mad, this website has loads of information. I'm currently looking for groups and people to talk to who know how i feel and my situation, even though i have great support from family it's sometimes hard for them to understand, and i ofeten feel like i am on my own (even though i'm not)

    This is my first post on here, not sure if i will have helped you much, if you want to know anymore about my situation feel free to ask, were new to all this and the journey is going to be a long one.

    Keep your chin up hun x

Reply

  • Hi Frogger,

    i'm in a simlar situation to you, i have a 2 year old boy who will be 3 in march. i have known since he was young that something wasn't quite right with him. he does very stange things like rubs his noce up the tv, very specific to how he has things EG his bed has to be a certain way before he'll get in it, very fussy with food......and the lost goes on. He has no speech, he did used to say 2 words in a babish voice but then that all stopped around 19 months. He uses pointing and makes noises for things he wants. We have major issues with sleep also (i'm a very tired mommy ha)

     

    My son also has epilepsy, his eplielsy doctor agreed with me that things weren't 100% with him, we are due to have a full assessment in Febuary which we have waited 10 months for, we have to wait till feb for speech therapy.

    I have asked myself the same question what should i do while we've been waiting, i think just going about your day as you do maybe take him to play groups, we pay for my son to go to pre school for 2 days a week, which has helped him and the staff there are amaxing.

    Things will get sorted for you i know the wait is horrible it drives me mad, this website has loads of information. I'm currently looking for groups and people to talk to who know how i feel and my situation, even though i have great support from family it's sometimes hard for them to understand, and i ofeten feel like i am on my own (even though i'm not)

    This is my first post on here, not sure if i will have helped you much, if you want to know anymore about my situation feel free to ask, were new to all this and the journey is going to be a long one.

    Keep your chin up hun x

Children
No Data