Jimjams??? HELP!!!!!!!!

[Chandra]

I would like to apologise first for the abrupt method of contact.... sorry, I just thought that you were the person I could ask these questions and my e-mail is not working very well lately.

My sister's DS (2yrs3m old) has been exhibiting some symptoms of autism, finally after a year of asking diferent doctors the pediatrician refered him to a neurologist. The problem is that my sister is not very sure of what to expect, or what questions to ask, I think she is very shocked with the news mainly because autism is rarely diagnosed in my country (my guess, not because there's none but because there's very little information available).

I have been trying to find more information in the internet but the very few pages I can find in Spanish... well, let say that the information provided doesn't seem very reliable or I haven't find the good ones, so, I thought of asking the following:

If you could recommend the best websites you have find (in terms of diagnose, what to expect, early education and specially what questions to ask), which would they be? If you have to had them tranlated which would be the favourite ones?

Sorry to botter you in this way, but thank you very very very very much in advance.

Chandra & Pikis

PS Of course, if you are not Jimjams but you feel you can help, please be asured we would really apreciate your postings.

Where do taht happy face came from? well, I might do with one anyway...

PS. Jimjams, MIL could be a good help but I'm wondering who is going to take care of her... she must be at least 65.

Thanks Dino, I will have a good look to see if I can find more people. thanks

Chandra:

Could you find on this thread and then send to your sister the "going to Amsterdam" article? I don't remember the exact name, but I thought it was a beautifully written analogy about what it means to have a SN child (the author has a down's child, I believe). The gist of the article is that you might prepare all your life and expectations to go on a wonderful trip to one city (Rome, I think) but end up in another one (Amsterdam) with different maps, languages and also wonderful things to discover. I found it quite moving and a very helpful perspective. It might help galvinize your sister.

TArtegnin, Thanks! I'm going to search for it, did you see it in the Special Needs topic? do you remember aprox how long ago?

Can't find it... anybody remember any details from this article that can help me to find it? (for example if you have posted in that thread or if you have seen it, how long ago it was?

Here Chandra (incase you haven't found it already.

My Mum gave it to me when my dd was first diagnosed. I cried absolute buckets but it did help in a strange way.

Welcome To Holland
by
Emily Perl Kingsley (following the birth of her son who has Down Syndrome.)
c1987 by Emily Perl Kingsley. All rights reserved.

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 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.

Another one crying buckets here... Thanks Heartinthecountry, it has been an incredible coincidence that you were around today at this time. Thanks

Although some mums hate "welcome to Holland" (me for starters. Welcome to Beiruit is more realistic but perhaps not the best reading material for someone newly diagnosed.

However Jim Sinclair's Don't Mourn For Us is an uplifting and I think realistic piece specifically about autism. I found it helpful when I first came across it.

I've got quite a lot of these poems on the website of the support group I run. I find them quite upsetting and sometimes a bit disturbing but others find them very uplifting and helpful. So I created a special section for them with a warning! I can have a look at what I've got if anyone needs something different (but that will mean I'll have to read them again...). I've got them all on Word if anyone wants the lot!

Ooops! I liked a lot and have already sent it, hope she likes it.

Now I'm worried .

What do you dislike about 'Welcome to Holland' Jimjams? Not disagreeing, just interested.

I really did like Welcome to Beiruit though Davros (although maybe not for newly diagnosed). Is that in your section?

Don't worrry Chandra- most people like Welcome to Holland- especially in the early days. I think I used to like it. I'm just an old cynic these days (and I suspect Davros is too ) It's just after 2 - 3 years of living with autism welcome to Beiruit is more realistic (for me anyway). Am I spelling beiuit right??

No, it's Beirut (here the patron saint of spelling errors -me- giving advice )

Mainly HITC it's just not real for me. My son isn't somewhere different he is somewhere much worse. I see him struggling to communicate
every day and he can't. He wants to communicate as well (had a chat with his SALT about this today) but for some reason the language part of his brain has gone AWOL. It's incredibly frustrating for him. Not different- awful.

I will contact you about welcome to Beirut in due course (if she does not shoot me if I got it wrong) I really like it, it's beautiful [thinking emoticon]

I'll tell you what I don't like about it (although not at first, found it heartening then so don't worry Chandra). It makes it sound like having a child with a disability is just different, interesting and mind-broadening. A lot of the time its shite and people who don't have kids with SN/disability shouldn't think that Welcome to Holland is what its like. I'm sure it is like that for some people but I haven't met one yet! Of course there are lots of great things that come out of it, true friends, real bonding, having to take on a huge responsibility and get on with it and lots of laughs but, given the choice, I would forego those pros as the cons for me far outweigh them. Not that I'm going round desperate all the time, its our way of life and we love our DS but its not something you can explain away as being only positive but different. Sorry, bit of a rant!

Ah knew I was spelling it wrong. It's somewhere in SN- but I wouldn't send it to your sister yet. For me though it is much more realistic. I think that's what I liked so much about the George and Sam book - Charlotte Moore didn't try to cozy up the autism at all- it was a very realistic description of how it is. She was very accepting of it- but accepting of its reality iyswim. For me Welcome to Holland just isn't real - so that's why I don't like it.

ooh, posts crossed! Yes, I've got Holland and Beiruit in there plus lots of "Before I Go To Sleep", "Sometimes I Just Wonder", "The More You Give", "Heaven's Very Special Child" etc etc, you get the idea. But, as I say, a lot of people like these poems and find them uplifting so anyone who wants them is welcome, there's about 25 of them.

Ah Davros said it so much better than me- that's exactly why I don't like it. Autism has become our reality and I love DS1 to Mars and back (and every bit as much as I love ds2) but ds2 is so much easier and doing things with him is such fun (we went to a pony farm yesterday- and he wanted to see the ponies, to stroke then to talk to them and he was interested - ds1 found a glimpse of a washing line- got stuck looking at it and screamed when we tried to move him away- in between running round like a maniac. Dh and I took it in turns to run after him (and boy is he fast). That's a bland example but its not different but better/the same. it;s worse- and we had to leave about 2 hours before we would have if we had just had ds2 as it was all becoming too much for ds1 (too many people).

"heaven's very special child"????? oh yuck! VOMIT!!!!! That must be American?

Oh yes, many of these poems are from the USA (via the ME-List), another reason I find a lot of them so pukey. Sorry to any Americans, "cultural difference" (sung like Sybil Fawlty ha ha)!

Jimjams, I really don't know what to say, it's difficult to understand what people can be going through and even when people are sharing the same problem the thoughts and feelings about the same subject are so different that it is very difficult to say something without the fear of offending the other person.

FWIW I'm sorry that you are going through this but I'm confident you will find a way around it, your experience with your child has make you a teacher. After a year in Mumsnet I think that you are an authority here, everybody feels a lot of respect for your opinions, you have helped your child and while doing that you have helped many other mums.

I do need a course on fast typing... It took me ages to write that and now is totally out of the converation...