So tired and so down

Hi my names sharon i have a little boy that i belive has hfa and sensory difficulties,hes been under the pead since around the age of 2 for what i belived was tummy troubles,it wasnt he was self stimulating,he was also reffered to salt.

I feel tired of battling to try and get him a diagnoses,the first pead we had was utterly useless,we would be in and out within 5 mins,not being taken seriously.

When he was a baby he hated being picked up and cied a lot,soon as he could stand he would jump up and down and flap his hands,he still does this now.

All the way round supermarkets as a baby he would have a high pitched scream,people would move far away to get away from us.

When he was walking (toddlerish) he would throw himself on the floo outside certain shops and refuse to move,or throw himself on the ground in the middle of a road.

He has no sense of danger,hes run out into the roads a few times,we have to have tight grip of his hands now.

His speech was really repetitive,even if you fed it back to him he would ask the same question time and time again.

For years we have had to avoid toilets outside hes petrified of hand dryers and was of the hoover but hes not so bad now.

In nursery they got ed pych in she said to put him on school action plus immediately and form a caf,the nursery is attached to the school he wouldnt go in the hall and missed out on graduation cermony because they felt it wouldnt be good for him,he missed out on a few things because of the noise.

Anyway he started school they got another ed pych in and he pushed for an ados test, he had the test and nothing came from it apart from my son spoke in a monotone voice.

In year one they gave my son a visual timetable,but then took it off him again because he got obbsessed with it,they also given him a list of who was on playground duty and sent it home with him.

He always asked if it was going to rain on a schoolday as he hated wet play and absolutely every thursday without a shadow of a doubt felt ill because it was pe.

He takes most things very literally, dad said  "dont run on ahead" son says "im not running on anyones head".

He is blunt to the point it is often cringeworthy! ive had many times where i have wanted the ground to open up and swallow me.

The there is the agression and the huge meltdowns which we have had all the way through.

We now have a new pead and have been to cahms and they put me on a course for parents of children who have asd/traits.

I always doubt myself i always think is it us? are we bad parents? is there nothing wrong? are we making too much of it? is it? isnt it?

Today i feel drained,this week i finished the course for parents of children with asd/traits and i cried my heart out, i think through sheer tiredness.

Does my son sound like he could be on the spectum? am i making too much of it?

Parents
  • You are definately not making too much of it!  You are perhaps doubting yourself simply because you are exhausted.  Don't stop until you think everything that should be done, has been done. 

    I too have a 7 yr old who sounds very very similar to yours.  We too were fobbed off for a number of years, given all sorts of diagnosis except for the correct one.  I knew he had ASD from a very young ageand I fought to get it recognised.  Nursery, school, they all agreed with me.  In the end, we saw a leading professional in the field who was shocked my son had not received a diagnosis of ASD years ago.

    My advice to you is this - don't let the lack of a diagnosis prevent you from accessing any help and support that is available.  As I already said, a lot of the issues you are experiencing, we have too.  For example, public toilets with hand dryers - a complete nightmare.  I would suggest you purhase a RADAR key for use in disabled toilets.  You can then use a toilet without the fear of people using the dryer.  It took a while for my son to believe it, but it worked and we can now go out and about a little easier.  For those cringe-worthy moments with strangers in public, I use the NAS autism cards which you can hand out and have information regarding ASD.  I have found them useful on a number of occassions where people think I have raised a rude little boy which couldn't be further from the truth.  I wish I'd had them for those 'screaming in the shopping trolley' days when I was told he was nothing more than an attention seeker.  We do it all online now Wink

    Please remember, you're not on your own but it can really feel that way.  I found many of my old friends didn't really 'get it' and you end up being isolated.  If you can find a support group, join it - regardless of not having a diagnosis.  Best wishes Smile

Reply
  • You are definately not making too much of it!  You are perhaps doubting yourself simply because you are exhausted.  Don't stop until you think everything that should be done, has been done. 

    I too have a 7 yr old who sounds very very similar to yours.  We too were fobbed off for a number of years, given all sorts of diagnosis except for the correct one.  I knew he had ASD from a very young ageand I fought to get it recognised.  Nursery, school, they all agreed with me.  In the end, we saw a leading professional in the field who was shocked my son had not received a diagnosis of ASD years ago.

    My advice to you is this - don't let the lack of a diagnosis prevent you from accessing any help and support that is available.  As I already said, a lot of the issues you are experiencing, we have too.  For example, public toilets with hand dryers - a complete nightmare.  I would suggest you purhase a RADAR key for use in disabled toilets.  You can then use a toilet without the fear of people using the dryer.  It took a while for my son to believe it, but it worked and we can now go out and about a little easier.  For those cringe-worthy moments with strangers in public, I use the NAS autism cards which you can hand out and have information regarding ASD.  I have found them useful on a number of occassions where people think I have raised a rude little boy which couldn't be further from the truth.  I wish I'd had them for those 'screaming in the shopping trolley' days when I was told he was nothing more than an attention seeker.  We do it all online now Wink

    Please remember, you're not on your own but it can really feel that way.  I found many of my old friends didn't really 'get it' and you end up being isolated.  If you can find a support group, join it - regardless of not having a diagnosis.  Best wishes Smile

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