Diagnosis and falling apart

[faun]

My darling boy got his official diagnosis on monday as severly autistic non verbal, it wasn't a shock i knew it was coming but i am falling apart, his behaviour is so out of control he has epic meltdowns and i'm really struggling. I feel so run down, constantly on the verge of tears, angry, sad and i suppose grieving. I know it sounds so dramatic but it was horrific having to listen to a room full of experts say they feel he may never talk or be able to go to mainstream school i know in the grand scheme it could be so much worse but i feel robbed of the life he should of had. I think i'm depressed im not sleeping eating very little and arguing constantly with my hubby we love each other so much but we are falling apart and neither of us know whats wrong or how to fix it. I feel so alone and afraid of the future and dont know how to stop myself feeling so out of control its scaring me how not me i feel.
I know i should be taking things one day at a time but stupidly i thought once we had a diagnoisis they would offer more help support ect instead they told us then gave us a handful of leaflets and said bye. I have no idea what happens next no one explained anything just said a full report would be in the post. Does anyone know where i can find some support? I get a homestart lady once a week but thats it. Sorry for burdening you all with this i know you all have your own worries and problems but just needed to get it all out somewhere.

 

[Tiff]

Vent away! I was in the same boat, I thought a diagnosis would be good etc but was quite surprised when I was devastated that she got it.

I don't know about the programs in your area, but Googling perhaps could help? I'd also try and find a support group you can go to. I have one and have met some wonderful mothers who know what its like to have to deal with this sort of thing.

 

[RachA]

I assume you are talking about your 3yo?

I really feel for you and i know it is a lot to take in. My daughter was given a severe speech delay diagnosis back in Nov and OH and i were totally devastated as we felt like all of Esther's life choices have been taken away from her. I still have times i feel like that but most of the time i'm ok.

You really need to get some decent support. We are having amazing support from Esther's playschool and also the local Child Development Centre. Esther's playschool are getting funding from our local council for Esther to have 1to1 sessions. The lady that came round to organise this has said that in Oct/Nov when we need to look at schools for Esther she will come with us to make sure that the right questions are asked and the right school is found for Esther.
I'm really not sure who you need to contact but you need help with things like that.

 

[MUMOF5]

Hi, my son has severe autism too, he is 6 now and was diagnosed age 3. He is non verbal - although now tries to communicate, firstly using PEC cards, and now with some makaton signing and a few 'words'. He is still in nappies and life is very hard with him and extremely challenging at times.

He attends a specialist school and I get respite for six hours approx one Saturday a month and a bit more during school holidays when he goes to a club at his school.

Be strong, I know it is hard and the meltdowns can be awful. I still cry myself sometimes when he has a bad meltdown - actually yesterday .

There are usually support groups around and autistic charities and organisations locally that run things such as soft play sessions and swimming sessions just for ASD families and children.

If theres any advice I can give you are more than welcome to contact me

 

[sun]

I don't know if it is offered where you are, but where I live there are many workshops and classes parents can take that I found so so helpful. We took one on encouraging speech and communication in toddlers, one on behavioural issues, and one on eating issues (sensory issues around food, etc). They made a huge difference in our day to day lives and stress levels. Lots and lots of hugs

 

[AP]

Oh hun i thought it was weird that they did they same with me, they handed me a leaflet and told me I'd get a referral to a support team after summer holidays and that is it - i feel so bloody lost.
Its been a month for you all now - how are you coping now?

 

[hellbaby]

Hi, I see you're also in Norwich, my dd was diagnosed in December. Were you at Upton Road? Did they offer you the chance to do the Earlybird Course? We did it and it was amazing, so supportive and informative and a really positive experience in amongst the terrible pain we were feeling. If it wasn't mentioned then I would def find out about, I can give you a phone number if you need it.