oh my, What a mess. Any advice much appreciated

[rachaeljoules]

Hi,
Im Rachael mum to 3 beautifull children,
I have Jayden 6, Jessica 5, and James who is 3 in april.

James has a multitude of special needs and some severe communication delays (he is at this time completly nonverbal)
Its taken me a huge amount of time and energy to get them to listen and do anything to help him, and after fighing for an assesment he finally has had one, Having the multidisciplinary assesment meeting next thursdaay where i will officially be told what they have found, but after a lengthy discussion today with various professionals I have been left very confused, upset and angry and them as they have said they would diagnose with severe autistic disorder (low functioning) except he is very young and they dont like to make a diagnosis so early, which after all this effort feels like a kick in the teeth, Has anyone else had any experiance like this, This is what they say about James.
James is 34 months old, James has a sever developmental delay, and a severe communication delay, James is completly nonverbal advised to start PECS training with mum. James overall development is at the 8-12 month mark, with mobility at 18 months, James shows a lot of autistic characteristics, HE has been observed hand flapping and spinning wheels on cars, James does not follow pointing. he shows little awareness and is happy to play alone, no words were heard from james but repetitive sounds were. referall to PORTAGE service and assesment nursery, SALT will teach PECS with mum and James

This report just goes on and on makes a very depressing read and i have no idea how any of this is going to work,
Any of you have nonverbal child? how do you cope? how did u find pecs? (if used)
Thank you so much if u can reply to me im desperate and seem so alone,
RAchael

Hi Racheal

I too am a mum to 3 beautifull children, aged 11, 8, and 3.

My daughter who is 3 also has special needs and a severe communication delay being totally non verbal.

I do understand what you are going through and how difficult it is. My daughter will be 4 in June and we still have not got a diagnosis. We have had brain scans and other genetic test but nothing showed up. My child will be discussed at the next him, and after fighing for an assesment multidisciplinary assesment meeting and I like you hope that we will be nearer getting a diagnosis. It is very confussing and upsetting and there are days when I get angry.

I really do know what you are going through and we too have just started PECS training. My child also shows a lot of autistic characteristics and also does hand flapping. She shows little awareness and is happy to play alone.

It is difficult and there are days when I do struggle to cope. We have just started to do pecs?

If you want to stay in touch I will forward you my details and hopefully we can support each other.
RAchael

it does feel lonely when i first joined MN my ds was 2.3 and had communication problems lack of speech i thought then and was so alone then i got talking to some wonderful people on here who shared there experiences listened to my worries and fears and most of all understood where i was coming form so dont be afraid to write whatever is on your mind you will never be judged on this forum

my ds is now 4.9 we have gone through lots of changes some good some bad and its been great to share them on here and not feel so alone and i dont any more

also check to see if any SN groups in your area that you could take ds to you can meet other families in same situation as you and they offer activities and therapies for ds my ds was doing music therapy and we were able to go without a dx all this helped hugely for him just remember your doing a good job none of this could have been prevented by you parenting any differently i say that because myself and others all felt at one time it was something we had done or not done

x

hi.
Huge thanks all for your stories. if any of you use facebook and would like to add me its Rachael Joules and the one with pic of my son laughing as my profile pic.

This site seems to be a lifesaver for many and im very pleased i found this forum, i can see it being a gret resousce for me.

I started using the PECS the wqay they showed me aiming for about 40 exchanges per day and on day 4 he has started spontaniously passing me the card rather than needing physical prompt, not allways but a few times so thats a good start i think
Rachael

just sent you an add on facebook

chickensaresafehere

they though ds had hypermoblity in the jaw ,yes he does but also has verbal and oral dyspraxia also dvd so affecting the muscles took them over 3 years to dx

ds also took almost 18 months to sign back to me now has good range of signs but there sloppy due to controll issues but first time he signed back cheese i cried