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Why can't I come to terms with DS?!!

(14 Posts)
sleepyhorse Tue 20-Sep-11 21:22:00

DS1 is nearly 3.5 yrs old - he isn't talking yet and is displaying certain ASD traits. He is currently being assessed by a pediatrician and seeing SALT.

I keep telling myself, friends and all the professionals that I think he is just delayed as the thought of any long term problem is just too overwhelming.
SALT keep saying "he is still young hence it's difficult to tell if its a languange disorder or ASD"...and then I find myself adding "or it could be that he is just delayed". I generally get a polite smile following my silly comment, I guess they must be used to mums in denial like me.

I know I need to get a grip and start dealing with the situation and all the current talks of special needs, statements and Autism but Im so worried about what the future holds, I can't accept that my gorgeous little boy is different. I just can't come to terms with it. Never wanted much in life, just to have a healthy family. Im so down that its causing probs with DH as he doesn't seem that affected by whats going on and don't want to keep drinking wine to take away the pain. Should I seek councelling or will they think Im being pathetic when I don't even have a diagnosis yet?

unpa1dcar3r Tue 20-Sep-11 21:58:08

Aw bless ya darlin...you're just grieving is all. For the child you think you haven't got anymore.
It takes time and you will get there. Remember your gorgeous boy is a child first and may have a disability second, he'll have his own personality which will far out weigh any difficulties he may have.

You will cope believe me, just give it time, get things sorted and then deal with it daily. That's all any of us can do.

MangoMonster Tue 20-Sep-11 22:12:22

Have felt exactly the same. Pm me if you want to chat.

supercalafragalistic Tue 20-Sep-11 22:13:37

I completely understand what you are saying! My DS1(6) has recently been diagnosed with ASD (high functioning) but has had milestone delays (speech and motor) which became more obvious around the age of 3 when compared to peers. I have really struggled with the ongoing trauma of it all. Oh the sleepless nights worrying about my beautiful boy! The fights I have had with family and DH! I have to say though that having a diagnosis has been hugely helpful as it now means I can channel all that energy into fighting for him to get the help he needs to make progress. It is frightening as we just want someone to tell us it is going to be all ok but remember that he will always be your gorgeous boy whatever label he is given or disability he may have. Try to sit and talk about your fears with DH by going out for a meal (with wine?) so you have his undivided attention can help you come up with an action plan may help. Talk to friends you trust and network if you can. The pain does get better especially when you don't feel like you are doing battle on your own. Big Hugs!

chocjunkie Tue 20-Sep-11 22:17:16

oh sleepyhorse - I think you are going through the most difficult time. it will get better. believe me. I felt the same and was absolutely distressed & sad when it eventually dawned on me that DD (3.7, severe s&l disorder and autistic traits but still no dx) had a bit more that just some speech delay.
as unpaid said, your DS is still the same gorgeous boy. just give yourself some time.

WilsonFrickett Tue 20-Sep-11 23:50:07

Oh sweetheart. I have said on other threads that the dx process and time was the most stressful and upsetting thing I've ever gone through in my life. You are grieving for the child you thought you had, scared for the child you do have, worried if you say the words out loud they will become true...

Believe the Wilson. You will come to terms with this. But it will take time. And you are not On your own.

And I still say, brightly, every time, 'of course, it could just be a delay.'

Hugs and wine

lisad123 Wed 21-Sep-11 09:13:53

its normal, I sobbed for weeks after both girls autism dx, even though i knew both times it was coming.
Maybe you need to read a little bit about the signs of autism, just so you can get it straight in your head if you think it is or not.
Are they putting in much help?
I can reccomend hannen courses, sometimes called more than words, and if they dont run the course you can buy the book online.
I dont surpose you are in herts? theres a wonderful little preschool/nursery especially for children with communication disorders here, and one in bedfordshire too.

Spinkle Wed 21-Sep-11 09:46:01

When my DS started having issues I googled. A cold hand of fear wrapped round my heart when ASD came up.

I spent a long time trying to prove it was just a speech and language issue, development delays, you name it. The professionals were fine about me not wanting him 'labelled' (but could clearly see I was in denial, obv).

It became obvious when he hit school age. I got a dx very very quickly.

I am now in 'warrior' mode and I happily hit people over the head with his dx and difficulties. I also, however, talk up the stuff he CAN do. I am totally upfront about it and, for me, being so kinda helps me take it on board a little more every time.

Doesn't mean I'm not incredibly sad about it though, esp. when I don't get to enjoy the normal 'mum' stuff.

I found '10 Things Every Autistic Child Wishes You Knew' incredibly useful.

Unmumsnetty hugs (())

suburbandream Wed 21-Sep-11 09:58:12

I know how you feel, sleepyhorse, it's such a hard thing to go through. DS2 has Aspergers and we had years of wondering if he did/hoping he didn't/trying to pretend nothing was wrong etc etc. By the time we got a diagnosis we had kind of come to terms with it and although it wasn't a surprise there was still a part of me and DH that hoped that the doc would say "oh no, he's fine, everythings normal". BUT, your DS IS still young, and as he grows he may well make great progress in some areas or others. Just try to enjoy every day with him, and enjoy who he is now - regardless of any label or diagnosis he is still your gorgeous little boy and that won't change.

I would really recommend counselling - of course they won't think you are pathetic! I used to be a real "pull yourself together" person until it happened to me, but I saw a lovely psychiatric nurse at my GP's surgery once a week for about six months and she was amazing. She didn't really do much except sit and listen to me (and provide tissues!), but it was just such a relief to be able to have a place to let it all out and not be judged. Sometimes it is easier to speak to a "stranger" than friends or family. I also had antidepressants for a while (again something I never thought I'd do) and it really helped me get over a tough time - and I figured it was better for me than self medicating with wine smile

squidworth Wed 21-Sep-11 10:07:01

My DS was dx at three with autism, he had some very visible traits, he is still non verbal at 5, I now have two sides the part of me that dealt with provision and still does and then the other side the forever optimist who believes that he will catch up. In the early years it is hard as this is when you have to fight for the limited provision I do not believe I reached the grief stage until his school and statement was sorted. I even like you believed it may be delays (even though me eldest has autism at the high function end) but I knew he would receive more help and if it was delays they extra help he received would not be detrimental.

MangoMonster Wed 21-Sep-11 10:12:21

Have to say I agree with the others, i'll keep hoping its just a delay until proved completely wrong... However, I'm still working towards helping ds as if he has asd. Confusing I know, confuses me sometimes but point is he is getting extra help he needs now and I can still dream that he will catch up, until that is shown not to be the case.

cozzie Wed 21-Sep-11 12:56:07

I bawled my eyes out when I finally accepted that DS1 had Asperger's and now and again, I still feel a little sad. But like Spinkle I needed to go through that in order to get into "Warrior Mode" and I try to focus on his abilities rather than disabilities. Acceptance is hard so be gentle with yourself.

And to be honest I wouldn't change him for the world - though I would like talk about something other than the London Underground once in a while!

Spinkle Wed 21-Sep-11 13:40:28

Cozzie - I'm with you on that grin. A convo about something other than Cars 2 would be nice.

MangoMonster - he WILL make progress, regardless of ASD or not. They will be in his own time. I find my little monkey makes staggering leaps of developments which leave me in awe at times.

unpa1dcar3r Wed 21-Sep-11 17:18:02

I remember our lovely geneticist saying 'in lay mans terms DS will never grow up' and I remember thinking rather randomly 'oh well, typical bloke then!'
It was an awful time; getting first son diagnosed with FXS, then them telling me i had to get younger DS tested and waiting so long for the results, and then that was positive too, and then having to get my older DDs tested for carrier status (took 6 months b4 results came through) so not knowing if they would have children like their brothers or decide not to have children just
in case...(they were clear, thank goodness) So about 2 yrs of tests and waiting and not knowing if i was punched bored or countersunk the whole time and coping with the boys etc...
But this was all years ago now and when i look back and remember how scared i was, I laugh.
Of course I'm still scared in some ways (like what will happen when I'm gone) but they have proved to me their capabilities know no bounds. OK so they may be different to other boys their age but hey, they're not going out nicking cars, drinking up the park, demanding £100 trainers and all the latest computer games...my 13 yr old still sits on my lap every night after this bath for a cuddle. My older boy got highest achiever award at his SLD school before summer!
Anyway the point is I'm trying to reiterate what I said earlier and what others have said since; he is still the same boy, his disabilities are just incidental as his personality will far outweigh them. you will find strength and courage you didn't know you had and that'll all be thanks to your darling DS.
My boys give and teach me more than i could ever hope to give or teach them.

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