Devastated by meeting with CP

[Bluesunbeam]

I had a meeting with CP today and received dx. Not completely unexpected but I feel devastated.

Autism, Moderate/severe learning disability (IQ 54), sensory processing disorder (think that's what he called it). Ds(6) already has dx of GDD, speech and language delay and possible epilepsy.

Absolute hardest part was being told ds would never be independent, that's what is so, so hard to come to terms with.

On the plus Ds has just been awarded DLA middle rate and statement has been applied for.

How did we miss all the signs and why didn't we do something years ago? Feel so bad about it, know we need to move forward and find the best routes to help Ds but he has been so difficult since school hols (change of routine) that we are just getting through each day at a time.

I think I was hoping to be told I was a neurotic mum and making it all up but CP was so nice and reassured us that we are doing the right things and more support will be put in place regarding behaviour/violence/control issues.

Positive meeting but just so

Hi Bluesunbeam - I'm not sure what to say but please don't be too hard on yourself. It's easy to now think - what if? - but life is not like that. We make our decisions and choices at the time and just have to hope for the best.
It sounds like you are in the process of getting good help and support for your son.

Thankyou Eveibaby.

I know we'll come through it and we are lucky to have some really good help and support.

First contact with CAMHS was in March so everything has moved so fast, we really are very lucky compared to some.

Just in a bad place at the moment.

I'm very sorry, even if you expect a DX (and in some respects need it to get better help), it's still very upsetting to have it all confirmed by the professionals. be gentle with yourself, get through the next days/weeks as best you can.

Not nice for you.

Don't beat yourself up. We weren't experts before our children were diagnosed....

I'm absolutely sure you've alwasy done everything you could for your DS - and always will.

Thanks for your replies, makes me feel less alone.

Going to continue one day at a time and hoping Ds settles into holiday routine soon.

So sorry you're feeling down. I remember talking to a charity worker when our DD was a first diagnosed with ASD and I was very down. She said that this would be the worst possible time and that over time it would get better,which has proved to be very true. Also, remember that nobody can predict the future, you don't know what help and good stuff might be down the road for your DS. You sound like a very caring mum

Bluesunbeam, large cup of tea for you.

If it's any consolation, I'm not able to live independently (range of disabilities inc ASC), but it hasn't stopped me from having a good life. Often IQ tests for autistic people come out with results that aren't useful, because they test for the wrong things in the wrong ways. You may well find that your lovely ds finds amazing ways round each of life's challenges. Those triumphs are worth every bit as much as to most of us as some other child's First from Cambridge. I'm a mum of a SN ds myself so have been through all the same thoughts you're going through right now.

But these are early days. Be gentle on yourself. Get all the help you can...take all the breaks you can...offload all you like...

Agree with Amber IQ tests for ASD notoriously inaccurate and underestimate ability because they are based on language and ability to show what you know. My DS score went up 20 points after doing 6 months ABA. Its not that he got cleverer he just understood the expectation to give an answer verbally. If ABA is not something you have looked at have a look at PEACH, Autism Partnership and Treehouse websites. Not every child will have a fantastic outcome but it can help every child be the most independent they can be.