The wrong destination

Thanks for all of the kind comments about my prototype mouse - I think bigger ears and a pointier nose is the next thing to try out. I also wanted to say that if you fancy revisiting some of the fun songs from your childhood there is a great CD with lots of them on - Nellie the Elephant, The Runaway Train, The Ugly Duckling, The laughing Policeman... and many more although sadly not the Old Amsterdam song. It's called Hello Children Everywhere by EMI records.

Over the next week I need to take a wee blogging break and get some stuff sorted out for Toby. I need to read some stuff and write some stuff and get my head around some other stuff! A friend recently sent me this and I thought I'd share it here as it does sum up many of the feelings that you live with when your child has special needs...

WELCOME TO HOLLAND

by Emily Perl Kingsley

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.

c1987 by Emily Perl Kingsley. All rights reserved

I landed in 'Holland' four and a half years ago when we had a diagnosis of severe autism confirmed for our 2 year old son.

These days I have moments when I forget that I ever wanted to go to 'Italy' but most of the time I'm still struggling to get to grips with the language and different customs of 'Holland'. Sometimes it needs quite a lot of hard work and some new guide books and I'm at that point right now where I need to go find a quiet corner and read for a bit in the hope of better understanding where I find myself. I've also got lots of paperwork to fill in for his annual statement of educational needs review.

So I'm off for a little break from blogging (just a week or so) to give myself time to concentrate fully on the task in hand.

Gauw tot ziens! (see you soon in Dutch - I think!)

Hello to all of my Dutch friends (especially the lovely Martine)

 

Comments

[Martine]

Thanks Julie!!! I sit here at my desk in Holland and I cry...

This is exactly how I feel, but you know that;-) I mail you soon, struggling with my English;-) And you are very welcome over here!

[Cazzie]

That is a beautiful description - take care

[Marie]

I've had parents of special needs kids share that with me before - and I think it strikes a chord with all of them. Funny how sometimes people just manage to capture exactly how you're feeling in a way you wouldn't expect.

Hope your blog break allows you to accomplish everything you need to do.

love xMx

[Nicci ( maximac hats)]

Hi Julie the poem is wonderful glade you shared it with us. It got to my heart.
I have two very healthy boys which I know i am very lucky even when they are shouting and screaming at each other(or me!!!!)But still i understood the poem.
I believe that we are all faced with things and put in situations for a reason. And even with children.
I think that Toby was given to you because of the wonderful person that you are, the time that you can give to a boy with these problems and because you can love toby no matter what.
Nobody else could do it. Also its not a nice thought of him with someone who can not give all this.
So Toby is one luck little chap, and some where deep in there he knows that and you are both lucky parents which you know i bet ( some days ).
Well julie you take care over next week or so. Also make sure that along the way after doing everything for everyone else you have "Julie Time ". After all if there is one person that deserves it it is you Julie.
Must go know cant stop the tears.
Take care loads of love Nicci xxxxx
Sorry the comment is so long but like i said where all given things and ive been given the curse of talking to much!!!!!!!!

[Dragonfly]

Hi Julie
That is such a lovely piece of writing. I'm now working at my son's former special school and I will share it with my colleagues and parents I am in contact with there, if you don't mind.
I would give anything to be back in Holland, I haven't been there for nearly 2 years and as much as I love being in Italy, I liked having both. Sorry if's a bit cryptic, but it's really struck a chord with me.
Good luck with all your 'stuff', it's all consuming sometimes, I know.
T x

[Jennifer]

You know all of your readers want you to do exactly what you need for you and your precious family.
Take care.

[Ali]

That's a beautiful way of thinking about things.

Have a productive blog-break.

[dottycookie]

That's a wonderful piece - thank you. I hope you manage to achieve all you need to over the next week or so! Take care.

[Susan]

Julie, take all the time you need and remember that we're all here for you and Toby..and Amy. You juggle so much so well, if anyone deserves some time to regroup it's you. And when you've finished reading and thinking for the day take some time for Julie! We all love you

[mummynat]

Thank you for sharing that piece with us.
Take care in your time away.

[Zoe]

Lovely words Julie - I hope you achieve all your plans in your break and take some time for yourself also. Toby and Amy are very lucky to have such a thoughtful Mummy.

[kirsten]

good luck and happy thoughts while you sort out things with toby. we're kind of doing the same thing right now - NOT easy.

the holland thing is a very interesting way to describe having a special needs child. i esp. like the part about how it's still a cool place, just a different one.

[French Knots]

What a lovely and insightful way of describing it, I'm sure the things you need to know and make decisions about change as time passes and living in 'Holland' throws up new challenges. x

[Bumpkin Bears]

what a truly thoughtful way of explaining these emotions you go through. I now actually live in Belgium with my belgian fiance and am learning Dutch, a language I never thought I would need to learn and I know how bewildering it really is. So I can hardly imagine having to learn the 'language' you are struggling to get to grips with, but there are so many wonderful pleasures and delights these new directions can take us. Sending you hugs and strength xxCatherine

[Alison]

What a moving post. Thank you for sharing this with us all.
Enjoy your time away.
Love Alison x

[Caroline B]

Well Julie, been visiting Holland for 20 years this week and it is indeed a wonderful place and worth the struggles! I've read that piece before and it really does bring some comfort and perspective to life. Good luck with getting the statement organised - always a worry and you do need the time to think. Just remember that you the parent always have the final say when it comes to a statement - don't accept any nonsense (I've been on both sides of annual reviews). I'm sure it will be fine.
Caroline x

[Sonja]

Dear Julie,
thank you for sharing this with us - we will all miss you while you do all that other stuff but these things just need doing. Who else will sort them but you.... Take care and see you soon

Sonja
xx

[clare]

Thinking of you xx
I have had that poem stuck on my kitchen noticeboard for 15 months now since Tomos was born and it still makes me cry, but it helps me to keep thinking of the beautiful tulips when it is all getting too much.
I hope you manage to get things sorted x

[Lucy Locket-Pocket]

Take care Julie - hope you manage to get all the things done that you need to do. That description of what it is like to have a special needs child is very poignant. Lucy xxx

[April Pardoe]

That is such a beautiful, poignant description. You are an amazingly strong brave woman and Toby is lucky to have you as his Mum.

I thank God every single day for my healthy daughter, because I know how lucky I am. My mum works with autistic children and I know she finds stressful yet rewarding.

Enjoy your time out, I hope you get all you need to do done.

Thinking of you

April xx

[Florence]

Take care - I hope your blog-break is productive.x

[Shawn Mary]

I'll be thinking of you and hoping that you take enough time to clear your head, get things in order and breathe.

Spring is just around the corner too. Toby will once again discover how wonderful being outside in the sunshine feels not to mention all that bouncing on the trampoline!

We will all be here when you are ready to return to blog land.

Big Hugs,

Shawn Mary

[Charlie P]

Wow, thank you so much for that text. It's such a simple but effective way to help people who are not in your position to better understand what it feels like. It has certainly made me think.

Tot ziens Julie! Een goede dag verder x

[Suse the slow knitta]

Thank you for sharing that poem with us,it explains so much,in such a wonderful way.

I hope your blogbreak is useful and productive for you, Toby, the little cotton rabbits and the rest of your family,
hugs

ps, I loved the song "a windmill in old Amsterdam" too. Its running through my head as I type.

[Lucy]

What an inspiring post and a really lovely poem. I live next door to an autistic boy and I think that poem really sums up how his parents feel. It is such an eloquent way of decribing the tangle of emotion and upheaval. I hope you will find the annual assessment a positive experience and look forward to hearing your neews when you get back.

P.S. We have just received some LCR stamps. They are fabulous. I am trying to restrain myself from giving them to Isabel before Christmas but Ifear they are so cute I may not hang on that long!

[Kitty]

For what it's worth, I think you 'do' Holland remarkably well - and knit and blog and do lots of other stuff as well.

Take care. :-) x

[Rachael Rabbit]

Hi Julie, I'm really scared about becoming a mother and my husband would really like to have babies soon (agh!) Your such an inspiration in both your craft and your approach to being a wonderful mother. Your post really gave me inspiration. x

[Donna]

Thank you for sharing this lovely post. I think I will hug my kids just a bit tighter tonight. Enjoy your break. I'll keep checking back for your future posts. Cheers Donna

[Monkee Maker]

Good luck with all the "stuff", Julie, and thanks for sharing that lovely poem.

:)

[Jenny]

I cannot put myself in your shoes. I could never do justice in my mind to the lifetime of challenges you and your family face...I know you didn't plan to land in Holland...but I think that Toby definately landed in the right place...where he would and will be loved, cherished and nurtured. I wish you well with your time to yourself. I will miss you. See you soon..Jen

[Maddy]

Many times I have meant to send you that very poem, I was given it when Bailey was diagnosed. It really does say it all.

Have a good few weeks getting things sorted, see you on the flip side.

[Rebecca]

Thank you for sharing this inspiring text - it has really helped give some perspective to recent events in my own life.

Hope your blog break is not too stressful and looking forward to your return.

[Thimbleanna]

Thanks for sharing that wonderful description. I hope you have a good, productive break!

[Annelies]

Hi Julie,

You know I have two boys with a "minor" form of autism. They have Asperger and are both on a normal school. Still it means a lot of helping, reading about the subject, explaining to teachers and others.
It gives a lot of extra work, but it is worth it. I am very proud of my two boys. Just as you are also proud of your children.

Tot spoedig,

Annelies
who actually lives in Holland

[Deb]

Julie, I too am the parent of a special needs child, now 21. The essay is so true. You need to fully grieve for the dream lost before you can fully accept and embrace the dream given. You are wise to take time to deal with life and "stuff." I feel I've been blessed to have my daughter. She's taught me so much and how to look at the world in an entirely different way! I'm a better person...and so honestly is everyone whose life my daughter touches. We walk a different path but oh, what a journey! I think both of your children are very lucky to have a mother like you. Take care of yourself this week.

[Deanne]

I love that writing, so true, I really love it. It actually made me stop and think for a moment about life in general and where its taking me.
Thank you so much for sharing that with everybody.
Have a good blogging break and see you soon
Hugs :)

[Gina]

Thank you so much for sharing that Julie. My son has Asperger's syndrom - and in the past couple of weeks has also been diagnosed as being diabetic. That beautiful piece of writing describes how it feels so eloquently.
Hope you have a productive break.
Gina

[Lydia]

Awww..that's such a lovely way to describe it x
I 'went to Holland' almost 18 years ago! Although it has often been quite a challenging 18 years, it has given me sight and some understanding of life in another parallel.
Take care and have a good break x

[Simmy]

What a lovely way of putting it. Thanks for sharing those words with us.

Good luck sorting things out next week.

[Kerry]

What a moving piece to read...
It has opened my eyes...
My love to you, I hope your blog break helps.

[Sally Furniss]

Hi Julie,
Still reading your blog regularly and loving it! This poem is wonderful and I was in my local library today and they had a sale of books - one of them was called A Wild Ride Up The Cupboards by Ann Bauer - it's about a family with a youngster who develops autism - so obviously thought of you and bought it! Can you email me your address so I can mail it to you - hope it's one you haven't read - just thought it may be interesting and may be a nice break from all the paperwork you have at the moment.
hope to hear from you soon - smile the daffodils are here so spring is not far!!
Sally x

[monica]

hope you get everything done that you wanted too. We'll be here when you decide to come back.

And what a beautiful perspective to have.

[holly]

Hi Julie Just wanted to say thank you for a wonderful post. I love your rabbits (and one day I WILL be fast enough and one will be mine) but your poem today was the best. I am not the mother of a special needs child but it was still very inspiring to read. I can only imagine how different your preconceptions and subsequent experience of motherhood and child rearing are when you have a child with special needs but even with a "regular"(what word do you use?) child I know that sometimes I am overwhelmed and disappointed in my ability to better cope with the challenges. That poem really does help put things into perspective.

Brilliant blog, thanks, Holly

[Molly]

Julie--I am sorry to do this at such a busy time for you, but I have been such a fan of your work that I can't help but TAG you in the hopes that you might share some juicy tid-bits about yourself.(I was recently tagged, so I am just going along with the "rules").

Here are the rules:
1. Link to your tagger and post these rules on your blog.
2. Share 7 facts about yourself on your blog, some random, some weird.
3. Tag 7 people at the end of your post by leaving their names as well as links to their blogs.
4. Let them know they are tagged by leaving a comment on their blog.

[Michelle]

I am getting used to Holland. But it is so hard right now. Thank you-you are awesome.

[Denise]

I found myself in Holland too, - in fact I remember reading this many years ago recognised my own journey. I have to say, having arrived at the "wrong" destination in life's journey, I've actually found that despite all the challenges it presented, it may well have proved to be a much nicer place to be than where I thought I was going. A big milestone for me recently was when my son wanted to go to a party with friends from college. I almost cried, this silent baby who grew up into a talkative (but somewhat unusual) young man, finally going to social events. They do have thrilling rides, even in Holland!

If the "stuff" you are dealing with relates to Toby's statement or educational review, I wish you much luck. It's a tough process and I felt quite let down my the system. I can only hope that your local educational authority has much better provision and more importantly, a better attitude to the issue of autism, than mine.

Big hugs
Denise

[Kim]

I know what you mean about forgetting that you even wanted to go to Italy. I at one point was going to Italy too, but ended up in Holland :) Though it has been difficult at times, I don't think I would know what to do in Italy. I do not know who, what, why, or how I ended up in Holland, but I now feel very blessed to have arrived. Maybe we could meet-up someday to have a visit :) Many prayers for your family.

Big Tulip hugz...
Kim and Miss T :)

[dottyspots]

I remember very clearly the first time I read that poem, I was in flood of tears.

Two of my children are on the autistic spectrum, my eldest with Aspergers (and at 13 we are at the point where we are hitting blanks provision-wise and the LA are now pursuing an 'out-of-authority' placement for him, which will mean him boarding out, having home-educated and tried school we just cannot find something that will offer him the support he needs).

I hope the Statement Review went well.

[shawna]

Hi I think your bunnies are great. Really cute I wish you'd sell your pattern! Please enter me in the contest I know my 2 year old would just love one of your toys!

[misheru]

I stumbled upon your blog while browsing from cupcakes. I was just thinking to myself, "What adorable knitted oodles of yum!" and then I saw your writings... and I know that the knitting is just the least of the wonderfuln things this site has to offer.

This is a beautiful beautiful piece and you have a wonderful family, and this is seen from the fact that you have a warm and loving heart.

All the best, fellow mum. No matter the kid's abilities, all we have are love for our children and this is universal.