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kirstie

SAD DAY

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Well as title suggests my 17 month old daughter was diagnosed with Autism today.

Totally gutted and thinking of all the things that might never be..... but i am trying to be positive and as hubby says she is who she is and she's still our little girl. the one we were so desperate for. Still stings a bit.

Dr wants to do an MRI of her and her 3 year old brother also dx Autism to see if there are any differences in their brains that are the same iykwim! They both have trouble with their left legs have tight achilles and need intervention from physio. Shall wait and see. Lewis (AS) was with an ex partner so it looks very much like if it is genetic then it's coming from me. Who knows.

Would love to get trolleyed right now but have a driving lesson tomorrow so shall leave it till tomorrow lol!!

Just thought i'd share.

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Hard for you, as you say, difficult day, there will be more :tearful: but lots of good ones as well :thumbs: It takes time to let it sink in, my advice for now? Get your head down, have your lesson and as you say, get trolleyed tomorrow night!!! keep posting and reading on here, it keeps you sane, especially on a rough evening, and lots of us on here have them! night >:D<<'> Enid

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>:D<<'> >:D<

 

We have two children on the spectrum so I understand a little of what you are feeling.

 

First and foremost she is your much-wanted and very special little girl.

 

Simon

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Hi Kirstie

 

I have two on the spectrum too so have some idea what you might be feeling.

 

My boys are older now (14 and a 11). The youngest one had more problems developmentally than the oldest one when he was younger (he didn't talk until he was nearly 4 and when was dx with a language disorder/delay when he was 6), but oddly he's now the least affected of the two... he is a rare case of a kid with a dx who is trully happy at school and in his life. I'm telling you this just to show that you can't make assumptions about their future.... everything is still a possibility for your little ones... the road might be rockier and certainly different.... but they can still fulfill their dreams (and yours).

 

Enjoy your session tonight, that sounds like a really good idea....

 

Flo' >:D<<'>

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>:D<<'> >:D<<'> >:D<<'>

We are awaiting a final decision re Dx Asperger's syndrome for Ben who is 10.I have been around on the Forum for a while now and have known for three years that AS was a strong possibility.However I am still feeling a bit all over the place.

So it is very normal to be feeling gutted.Karen.

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Hi, kirstie

 

My DS was diagnosed with autism about 18 months ago and, as the others have said, it takes a while to sink in.

 

In that time, though, we've come to realise that there are so many special things about him. We have good days and bad, and it really is a case of taking each day as it comes.

 

Look after yourself and hubby, too

 

Love to you all >:D<<'>

 

Nicky x

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its good they getting to autism at a early age now,it gives you a much better time to learn and support with extra needs of language and communication and the help when you get the statement to go into playgroup and nursery,it is a very hard thing to hear about your baby, but if you and your OH can learn as much as posssible about autism then it helps to understand the challenges your baby will face and expalin why they might or not have difficulites, if you can get in touch with NAS and find out about the Earlybird courses if you can get them, they are a valuable source of learning and support as you get to make friends with others that face the challenges as you do. also our consultant paedatrition said to us often the parent says to her understanding my childs challenges makes me more understanding of my Partners challenges and characteristics

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My son was diagnosed last week. It is still a shock even though i expected it. Feeling for you right now.

 

 

Just wanted to say thinking of you too dogfish. >:D<<'> Karen.

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It's such a topsy-turvy time, trying to reconcile your relief that your instinct was right, it's not something you've done to 'blame', help can now be sought,etc, etc, with the heart- stopping realisation that everything's different now.......your expectations and plans/hopes for the future are shattered but you must pick yourself up and soldier on regardless.

 

Funny thing is, as many have pointed out, those hopes and dreams don't get thrown away, they are reassembled into a new and interesting design, many of which are a pleasant surprise. And while the route may be a little different, sometimes longer, sometimes shorter (I never realised how quickly my son would grasp reading, and how far ahead of his peer group he would be, for instance!) you may well find that the destination your child arrives at is the same as you'd hoped for.

I've heard so many people talking about their hopes for their child's future, especially when listening to parents in the playground of my NT lad's school, and you often hear the platitude,

 

"I don't care what he ends up doing, as long as he's happy."

 

Many of these parents, I know they're not being entirely truthful. Some of them are, frankly, pushy and a bit overzealous in their wish to have their offspring outshine the rest.

But having Cal, and helping him to cope with his differences, I've realised that for me, and pretty much every other parent at his ESB school, that wish is the absolute truth. That's my highest wish, hope and dream for my boys- I've realised that all the rest are just Brucie Bonuses. I consider that to be a blessing, which I am grateful to have had my eyes opened to.

 

(Don't get me wrong, if either of them grows up to be a buisiness tycoon, I shall enjoy the benevolence they ( had better!! ) bestow upon me, and how!!)

 

I also look at my son and see that, yes, he is different to his peers, but many of those differences, I like....prefer, even.

The shock will wear off, you will adjust and hopefully, embrace the help that you find (I only wish it was more plentiful!!) and life goes on......

It won't be plain sailing, (but then I don't think parenthood ever is) but another blessing I've discovered during those darker times is that I know who my friends are, and the unfailing love and support my family has received from them is utterly champion. It warms my cockles whenever I think of it.... >:D<<'>

 

Think I've went a bit Hallmark!!

 

Dogfish, Kirstie, Karen and anyone else in this situation, my thoughts and positive vibes are with you (feel the Force!!), I hope things get a bit easier very quickly for you all.

 

Take care,

Esther x

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Thank you all for the support! Esther that was a lovely message hallmark or not it was really lovely. You put into words exactly how it is and it's the truth anything else your child achieves is a brucey bonus (lol!)

There are just moments you knw? like the other day my son kissing my daughter and saying this one is for the children you'll have and this one is for the husband you'll have and this one is for you....and i thought will she?????????? and it's those moments that choke you up or when i ahve 5 mins to actually think then something will pop in and i feel so sad for her. I truly have no expectations of my kids i really do just want them all to be happy too. But then i look at Lewis and how horrendous a time of it we had with him and look at him now he's an absoloute joy to be around, a really lovely boy so i am really hopeful that we can bring her on and she will be a little less detached....she is much better than she was as a 12 month old even so the future will be what it is and we will plod along!

Thanks again guys, and lots of love n hugs to all who are going through the same rollercoaster right now! xxxxxxxxxxxxxxx

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>:D<<'>

I can sort of understand how you are feeling, as had same thing earlier in the year when my almost 3 yr old was diagnosed with ASD (my eldest has PDA), and it threw me even more than with the eldest. My life has changed so much since then, I dont work now and am a full time carer, and am still getting used to it. I recently started the NAS earlybird course which I have found really useful and meeting and speaking to other parents online and in person is a real help.

Take care and best wishes

D

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I have three children with special needs. There is a lot of joy as well as the heartache. You may find this helpful. I found this passae and it helped me a lot.

Its well worth reding.

Welcome to Holland"

 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:

 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy.

 

All my life I've dreamed of going to Italy."

 

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

 

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

 

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pa

5 months ago

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

 

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

>:D<<'>

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Holland is where we are and i guess that's where we're staying....i love tulips!!!!

Thank you for that it really is like that!! xxxxxxxx >:D<<'> >:D<

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But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pa

5 months ago

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

 

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

>:D<<'>

 

Thank you for that, Cariad. My DH is Asperger; although not diagnosed, we've read enough about it for us both (thankfully, no longer just me) to recognise that he's AS. Sometimes it is incredibly hard, but I strive to remember to pick up the right guidebook and stop wishing I was on another holiday! The sense of bereavement for what I'll never have can return out of the blue with sudden intensity. But the dear man wouldn't be who he is if he wasn't on the spectrum - a lot to be grateful for.

 

All the best to you amazing mums, dads and carers .

 

Billabong

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And to you too Cariad, not easy for you either! >:D<<'>

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The sense of bereavement for what I'll never have can return out of the blue with sudden intensity. But the dear man wouldn't be who he is if he wasn't on the spectrum - a lot to be grateful for.

 

Well said, Billabong - that sums it up perfectly :thumbs:

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