Autistic DS - I'm so desperate

[helplessandworried]

I have already posted this on AIBU for traffic, now posting here again looking for any kind of help...

DS is 19 months old and has been more or less diagnosed as autistic. The red flags have been there all along, but I happily ignored them until it was no longer possible: just fleeting eye contact, no words, no imaginative play, no interest in other children, no imitation whatsoever.
I'm extremely scared of the future, of the life he might lead and the impact it might have on dd and my husband who is already struggling with depression. There are so many questions noone can answer: Will ds ever learn to talk? Will he ever have friends, use the toilet, hug us, have a job? Will he have any feelings for us at all? Will we be able to cope? Will he have violent outbursts and hurt his sister? Will he decline and stop smiling at us which he does sometimes? Will he be happy? Will we ever be happy again? I'm so sad.

Please tell me everything will work out somehow... Please....

(hugs)

all children with autism are different. They will progress at different rates, and achieve different things.

You can be happy, though it may take a while to adjust to the diagnosis. remember that no-oone knows what their child will achieve, nor whether they will escape childhood unscathed from illness or accident, even though one could assume that a NT child has it all laid out in front of them. Take one day at a time and make plans as best as you can based on the information that you have now.

Hi Helpless

What you're going through now is probably the hardest part of the whole process but it IS good that you've spotted it so early in your ds.

No-one can tell you the future, some children make remarkable progress, some might get worse and others will make progress through good early intervention therapy.

I don't think you should feel helpless though as there is so much out there that you can do for your ds, good OT input (If he needs it), ABA, private SALT and MumsnetSN :)

Books I found very valuable are More Than Words by Hanen, The Verbal Behaviour Approach by Mary Barbera.

You should also speak with Moondog from this site, she is a very good SALT with ABA experience.

When I first suspected my Ds had asd, I read everything I could about it.

I made a list of his difficulties and then worked out what I could do to help.

It does seem overwhelming at first, however I found having something to focus on helped me and my Ds.

Be kind to yourself, everything will be ok xx

Diagnosis is tough. Your expectations for the future have been put in the shredder and there is no new document in its place. When my legs stopped working, I didn't like looking back when everything seemed peachy, I didn't like looking forward to the unknown and I didn't like where I was.

But you and dh and dc are all still on the planet, and you all love each other, and with that, you will be able to do happy things together.

Bit by bit, I found things that I could do and enjoy. I could still go along the promenade, and still laugh at comedy, and enjoy a film. I slowly got used to my new normality, and got back to enjoying life as much as the next mum.

Actually, I think I enjoy life more. There is nothing like going through a tough time and coming out the other side together to see life differently.

As I post here from time to time "We are not a typical UK family, but I sometimes wonder if families who have not been through a tough adjustment can ever appreciate life the way we do. The rose tinted glasses are off, but after an initial blur, the colours are somehow brighter, and sharper"

I hope this helps

This is the worst bit. You'll go through all the stages of grieving for the LO you thought you had, but eventually you'll appreciate the LO you do have.

I went through the same thing when both of mine were diagnosed in quick succession (not helped by the fairly callous way I was told - DS2's diagnosis was given to me in a routine meeting at school where everyone else already knew). They've made huge strides forward and I couldn't be prouder of them (although they can still be hard work!).

It won't be easy for a while, but it will get better and one day you'll find you've hardly thought about it for ages.

In the meantime, be kind to yourself, and take it one day at the time.

And there's some daft thing somewhere about Paris and Holland you could read - you never know, it might help! Does anyone have the link?

...or you may not want to use ABA. Like all therapies, it's only as good as the person delivering it. Some are very good. Some aren't. And the cost can in some cases be astronomical. Waiting for more thorough research showing whether it works in the long term.

We used no therapies at all. Result - one DS who went from non-verbal human dynamo of unstoppable energy and danger, to confident national rugby player working as a member of teaching staff.

All a matter of individual choice. Meantime, as the others say, relax, enjoy your fab young person, and ask the lovely people here anything.

The moment you are going through is really hard....you may not see it now, but it does get better. Everyone is different and copes differently. My own personal way was to make sure I had a plan, lots of things to do with my DS. What I feel empowered me the most was good quality ABA, taught me how to be the mother I wanted to be (meaning how to interact with DS). Again my own personal opinion. There are lots of things out there that are available; don't be afraid to try and make your own personal opinion of it, see how it works for you and your family.

Thank you so much for your kind words which I appreciate very much. I'm still in shock and can't imagine ever feeling better again, having cried all day, but I know we will get along somehow eventually.

The boards are always here for you.

For the stressful stage I found the following helped

1. displacement activity - I have used sudoku, reading, crosswords, etc to ease the stress
2. get rid of pity - I found saying to people that I was fine and enjoying life woud get the conversation back to something normal. I did this even if I was having a lousy day.
3. I sorted my friends into ones who were great at distractions eg telling me funny incidents etc, and those who I could share how I really felt and feel supported.
4. I realised self pity is also unproductive, - as my friend said "there are poeple all over the world who would swap places with you for a roof and the certainty of a meal" so that was me told!. Counting my blessings became a good habit.
5. anti-depressants

Good Luck
We are all willing you on

I felt physically sick when I knew my son had all the red flags and sort of grieved for the child I felt I'd 'lost'.

DH was slow to accept and get on board which made me feel quite lonely for a while, but we eventually ended up on the same page.

That was a year ago. Our sons disability is now just a part of our lives and we are in a good place where we are enjoying the little improvements he makes and have accepted that it boils down to the fact that ds is a positive in our lives regardless of his disability. We love him and he loves us. [smiles]

I have a 4 year old awaiting an autism diagnosis - it's not been a quick process.

There were warning signs when he was younger but i guess as a first mum that I didn't pick up on them and only realise now when I look back.

At 19 months, my son sounded very much like your little boy - although my son has never struggled with affection as he is very cuddly.

And it has got better for my son. He saying 'odd words' at 3 and a half. Now at 4 he says most single words and has started putting some two word phrases together which is amazing as he was still non verbal just over 6 months ago. He is potty trained day and night which happened a few months before he turned 4 and he is starting to show some interest in playing with others.

He still struggles a lot but he is improving so much as time goes on.

I understand how you are feeling but I'm sure it will get better for you. Some days are amazing and he does me proud and others he stresses me out so much I'm nearly in tears but it's just the way he is, so I try and stay positive. Good luck in the future :)