Reassurance and advice needed please!

Dear all,

I am new to this forum and in fact this is the first time I have ever used a forum so please bare with me!

Myself and my partner have a beautiful 3 year old who has had a number of issuea since birth. He was born early by 7 weeks and this seemed to impact on his general health and development. He spent his first 2 years in an out of hospital. He had feeding difficulties and as such had SALT involvement. She ended up referring him to the community peaditrician the reasons for this is because she felt there were some delays.

The paediatrician stated that he was delayed in some areas and referred him for portage. After his first birthday there seemed to be some improvement he walked at 16 months and started interacting more so by the time portage visited it was felt he would not need there support, however they kept him on the waiting list.

Aa his health started to improve we noticed other issues like his ability to remember things such as car logos and his fascination with television adverts and anything to do with BT Broadband would you believe! In addition he never really played with toys or other children and there were some differences. When portage visited the 2nd time it was decided to give him some extra support.

His behaviour currently is completely non consistent. Sometimes he appears to be completely "locked in" to his own world and is only concerned with his own agenda and will just run (he does not walk') to one thing to the next singing repeatedely the same line from a song or making noises. This is just an example of how he behaves. He is also terrified of certain noises and is completely hyperactive with a very small attention span for anything not of interest to him. He becomes completely obsessed with things and you cannot move him on from this. More recently he cannot even sit to eat his dinner which is really worrying me. In aedition he has hardly any sleep as he cannot settle or stay awake.

He haa beem diagnosed with "communication difficulties" and is having support. He will  Start a pre school in sept for children with additional needs.

I am do confused though because sometimea he can appear quite "normal" and interreacts in a "normal" way. He is so friendly and always says hello to people and his eye contact is good. He has just started to answer questions which he was not doing before and although some of his behaviour is consistent with ASD others are not. I am just so confused and struggling to know what if anything I need to push for or if I need to be saying "no he is fine" and see how we get on. He is constantly described as a "mixed picture" and I just do not know myself which I am finding hard. Is he just naughty in which case I need to come down hard on the behaviour.

His behaviour is very challenging particularly because he doea not sleep. he cannot be left alone for a minute because he is very accident prone and he cannot do much for himself. Do childrem with ASD have issues with hyperactivity?

I don't really know what I'm asking! I just need someone to relate to my situation of a "mixed picture" any support, advice or anything would be much appreciated.

Thanks for reading  

Parents
  • Sorry for the late reply, I think you need to remember that you havnt done anything wrong! Its all to easy to think of what "could have." As for what happens next I cant really give you much of a heads up as authorties seem to do things differantly depending on where you are, for us (back in Plymouth) the ball started rolling for us with our son being observed for a short while in nursery by his keyworker as well as being visited by Portage.

    After that I suppose you could say the official start was us being referred to a pediatrician who got us into a assesment group which ran for about 6 weeks (2 sessions per week, bout 2 - 3 hours each.) I think after that assesment a panel kinda decided on each case of the children present. Shortly after that we got a written offical diagnosis.

    I prob missed a few bits and pieces there so apologies (it was a MANIC year!) The truth is that you do have to really push for what you want to happen, there are groups like Portage that can provide assistance but sometimes you will need to keep at whatever person you need. I think the whole process for us dragged out to about a year, but we still havnt started the stateament of diability process yet which apparently could take a while (he will be in school before this :( )

    It is stressful as anyone else will tell you, but sometimes you need to let that out I think, it kind of worked for us. Also I think there are a few charities that provide councelling / support JUST for the parents / carers involved, I think I heard "Face to Face" mentioned but cant be sure.

    Sorry for the waffling, it prob all didnt make much sense =D Just be sure to look after yourselves as well!

    (Apologies for any spelling mistakes! :) )

Reply
  • Sorry for the late reply, I think you need to remember that you havnt done anything wrong! Its all to easy to think of what "could have." As for what happens next I cant really give you much of a heads up as authorties seem to do things differantly depending on where you are, for us (back in Plymouth) the ball started rolling for us with our son being observed for a short while in nursery by his keyworker as well as being visited by Portage.

    After that I suppose you could say the official start was us being referred to a pediatrician who got us into a assesment group which ran for about 6 weeks (2 sessions per week, bout 2 - 3 hours each.) I think after that assesment a panel kinda decided on each case of the children present. Shortly after that we got a written offical diagnosis.

    I prob missed a few bits and pieces there so apologies (it was a MANIC year!) The truth is that you do have to really push for what you want to happen, there are groups like Portage that can provide assistance but sometimes you will need to keep at whatever person you need. I think the whole process for us dragged out to about a year, but we still havnt started the stateament of diability process yet which apparently could take a while (he will be in school before this :( )

    It is stressful as anyone else will tell you, but sometimes you need to let that out I think, it kind of worked for us. Also I think there are a few charities that provide councelling / support JUST for the parents / carers involved, I think I heard "Face to Face" mentioned but cant be sure.

    Sorry for the waffling, it prob all didnt make much sense =D Just be sure to look after yourselves as well!

    (Apologies for any spelling mistakes! :) )

Children
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