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I'm new to all of this, any help would be great.

evrensmummy

Hi my son is almost 4 years old and has recently been diagnosed with having Aspergers Syndrome.

I am reading up a great deal re Autism but feel so let down and alone by the health profession and his peadiatrician.

Since my son has been diagnosed I have not recieved any information from the peadiatrician in regards to further assistance, what help to expect and what happens next. I feel like he has been diagnosed and we've kind of been left alone to deal with it.

I've been told I can have my home assessed (as my son has no sense of danger) by social services and that I could be entitled to respite. My son is also frequently refusing to walk when we go out, he'll walk a few steps then cry until he's picked up even chucking himself to the floor. Can i get any help with his physical needs?

 

And also how long does it take for DLA to be rewarded as I am desperate for a blue badge due to his lack of mobility which is having a strain on my back due to having scoliosis (a bent spine).

 

Any help would be greatly appreciated as I feel so alone and depressed at times.

 

Many thanks

  • Thanks again Crystal. I find its not so much of a routine problem as he's ok wherever we go I just tell him in advance. Its more of whatever he wants to do he will do it and if not he will kick up a fuss until he does get his own way.

     

    I've tried going for little walks with him and his siblings but it doesn't matter where we go he acts the same and is becoming so clingy. Its got to the point even in the kitchen whilst doing houswork or cooking he's at my feet wanting to be picked up and I know I really need to just be firm which I try.

     

    But I totally agree with u, i really need to contact his peadiatricians office and get some form of advice and will do so 1st thing in the morning.

     

    Thank u for being so kind and supportive. x

  • hi again - then you've got to pester the paediatrician's secretary!  Sounds like your son is objecting to going to places he doesn't want to go to.  I never realised we had developed a "route" when we were in town until 1 day I decided to go somewhere else 1st.  Massive upset in the street.  Really upset, because going the same places was so important to him. If you have the time I'd take him on the route he likes to go on....walking.  He'll get a enjoyment out of it.  Even now my son wd be upset if he missed out on his fav places in town + he's an adult.  Sounds like he's literally dragging his feet in protest.  

  • Thank u so much for that bit of info. I did have a look at the 'after diagnosis' section but didn't get the exact answers I am seeking. We have no social worker involved however his nursery are in the process of doing his CAF but other than that nothing.

     

    I tried to get through to social services myself and they told me I need to get in touch with the local childrens services which I did and they said that I have to wait for our peadiatrician to refer us first.

     

    My son can physically walk, he just refuses to. He will walk a couple of steps and give up. Even if I leave him and walk off he will not move or will head staright for the main road and has almost been hit by a car a few times to the point where I have had to run in front of him to protect him. Its so draining. Not that everyday is like that, he's just so unpredictable. He does have a normal maclaren buggy but at almost 4 yrs old he is getting big for it. He sometimes drags his feet underneath especially when I refuse to go a way he wants to go or into a shop he likes. Thankfully I drive so this does not happen all day long.

     

  • hi - I don't know if you've seen the "After Diagnosis" section which you can access via the nas homepage?  There's always the nas helpline if you want to speak to someone about it.  It can be a long wait to see if you've been awarded DLA or not.   Organisations such as CAB, Welfare Rights Depts at local councils, can be helpful.  It's unacceptable that you've been left hanging in mid-air since the diagnosis.  If you haven't already it might be an idea to get back in touch with them to complain etc.  It's important that your child gets a statement of educational needs so he can get the level of support he needs when he starts school.  Have you been allocated a social worker?  If you have then s/he shd be contacting you to see what you need from social services.  Do you know why he's refusing to walk, or does he just prefer his buggy?  I'm presuming from your post that he hasn't got any physical problems with walking.  Others will be along with advice soon.  I hope things get sorted out for you soon.  It must be difficult.  Posters on this site understand + there are many who've felt alone + depressed at times, inc me.  Just chip in with whatever you want to ask.   bw