This can't be Holland!

amother

Mon, Feb 18 2013, 5:42 pm

"Welcome to Holland" they tell me.
But why does Holland smell
like the number two I keep washing off my child's face?
And how come in Holland children abuse their mothers?
And when my child tantrums in Holland, why do people in Italy hear?

They say Holland moves at a slower pace
so why do mothers have stress levels similar to soldiers in combat?
And if this is Holland,
where are the tulips?

sequoia

Mon, Feb 18 2013, 5:45 pm

So sorry, amother Sad

You're right, there are no pat answers or easy solutions. And I'm not surprised you find that "inspirational" piece unhelpful as you deal with the day-to-day realities of having a special needs child.
Hugs.

amother

Mon, Feb 18 2013, 7:05 pm

hey, I didnt take the train to Italy either, but instead of Holland sometimes I feel like I ended up in the Congo.

and I definitely relate to your Poem

imasinger

Mon, Feb 18 2013, 7:22 pm

I saw a piece once called "welcome to antarctica" along these lines.

I hope things get more bearable.

Hugs!

Mama Bear

Mon, Feb 18 2013, 7:30 pm

Welcome to Holland? Feh! More like, Welcome to Hell

Jeanette

Mon, Feb 18 2013, 7:53 pm

I think whether you feel like you're in Holland, Antarctica or Hell depends a lot on the nature of the disability.

The original author of the poem had a child with Down syndrome. Children with DS might have slower development but don't tend to have as many behavioral issues and generally are considered easy to raise.

amother

Mon, Feb 18 2013, 8:23 pm

well I HATE Holland!
I'm working really hard on getting back to italy so why do pple tell me to enjoy Holland ?!?!
It's no fun! everyone in holand is trying to be like Italy and I should I enjoy it here?!?!

This is one poem I never understood!

Sorry to hear I'm not alone.

Jeanette

Mon, Feb 18 2013, 8:36 pm

If "getting back to Italy" means trying to cure your child or make them stop having the disability, then yes, you will always hate being in Holland.

Of course if your child has an illness that can be cured, then I don't think the poem applies. It is for the birth of a child who is different, who will always be different, but still can grow and develop and have a good quality of life in his or her own way. I understand though that the day-to-day stress of dealing with a difficult child can make it very hard to ever come to that place of acceptance.

imasinger

Tue, Feb 19 2013, 4:57 am

Quote:

What if you went to Antarctica??

Everyone goes to Italy. We know that already. Emily Pearl Kingsley has informed us of that long ago. She also told us that some people end up in Holland instead of Italy. We know that too. They're confused, bewildered, and unhappy –but slowly they learn to enjoy Holland for what it has to offer. Holland isn't any worse than Italy; it's just different. And it is full of other people like you who also planned to go to Italy but ended up in Holland instead. Together they make up a lovely group of people who share a common goal – to settle in Holland, to learn the ropes, and to learn to like it there until they can almost forget that they had ever intended to go to Italy to begin with.

But what if your plane didn't make that kind of nearly-typical detour? What if you landed, not in Holland, but in – say – Antarctica? You exit the plane and try to make sense of it – but there is nothing there to make sense of. You want to buy new books and meet new people and find out about the history and beauty of this new place - - but there is none of that around. All you see around you is snow. Deep, freezing snow, as far as the eye can see.

You'd love to get used to it; to become acclimated to these new surroundings. But in this kind of place – letting go means freezing to death. You'd love to get to know the inhabitants, learn the language and join the community. But there is no one to join – you are there alone. Only you, and the cold, eerie blue snow.

And somehow, you've got to plod through. There is no one there who can teach you the ropes; no one who has paved the way for you – you have to break through the ice on your own. And not only that, you have to create the tools with which to do it too; and the materials with which to create them. No one will be there to lend a hand as you start; no one will be there to applaud you when you are finished. And yet you plod through anyway, because this is where that plane has landed you; you do what you've got to do.

There is no glamour, no ease, and no false pretenses of "we love it here". You don’t. You still wish you were on your way to Italy. But deep in your heart you know that this is where you are to stay; and so you make the best of it. You build trenches where only a blanket of snow existed before – create igloos to warm you, right out of that very frozen snow that posed the danger to begin with. You make a haven – as much as you possibly can – out of that dreary, endless landscape that had once met your eyes, way back then when you arrived.

And the years pass. You don't realize it, busy as you are with maintaining and fortifying your creation. In the days that pass you by, and the struggle to always stay ahead of the dangers, you barely have the chance to look back and view that masterpiece which has taken shape behind you – under your very own tireless hands. And yet it's there – waiting patiently, biding its time. Awaiting the day on which you will finally reap the fruits of your selfless labor. And then one day, when that time comes and the shofar will blow and the earth will cease from its endless circling, you will find yourself suddenly, almost with surprise, waving high atop the Highest Place on Earth.

Isramom8

Tue, Feb 19 2013, 5:08 am

Jeanette wrote:

Yes. Holland is where the sweet five year olds with Down syndrome live. Kids with ADHD, etc. etc. etc. live...somewhere else.

But you can still find Italy in your heart.

amother

Tue, Feb 19 2013, 5:13 am

Those of us living with severe disabilities, changed Holland to Helland. And it sure is.

amother

Tue, Feb 19 2013, 5:31 am

Jeanette wrote:

I'm the op, but I'm not asking ds to be normal. I accept him for what he is, a child with PDD. All I'm asking for a good night sleep where I'm not woken up by a tantruming kid who is beating me up while covered in the contents of his dirty diaper.

imasinger

Tue, Feb 19 2013, 6:12 am

OP, how often does that happen, and do you have some resources to help?

Mama Bear

Tue, Feb 19 2013, 6:31 am

amother wrote:

Jeanette wrote:

Amother, I've been dealing with severe autism for 2 years now. Please do me a favor and read my blog, especially my newest post - ACCEPTANCE - it changed my life.

The two things that worked for me to stop the scenario you described are:

the Ready set bloom tent - www.myreadysetbloom.com
and the Little Sleeper keepers - www.littlesleeperkeeper.com - it's a pj they cant take off. or you can just put on a one piece pajama turned backwards.

There are definitely ways to help you and I'll be glad to walk you through any of it. Feel free to PM me.

((HUGS))

amother

Tue, Feb 19 2013, 7:44 am

Jeanette wrote:

In defense of the author, I don't know how long ago she wrote this. Lots fewer resources then. And some DS kids have other issues too. I have a friend who has a daughter with DS and mild autism.

Jeanette

Tue, Feb 19 2013, 9:16 am

amother wrote:

Jeanette wrote:

In defense of the author, I don't know how long ago she wrote this. Lots fewer resources then. And some DS kids have other issues too. I have a friend who has a daughter with DS and mild autism.

Well, if you want to generalize:

Holland = mild to moderate disability, relatively common, good social support
Antarctica = uncommon or rare disability, little social support
Hell: Severe disability, little social support, severe disruption of everyday life

amother

Tue, Feb 19 2013, 9:31 am

Mama Bear- you actually inspired me to write this poem. In the middle of the night, I was thinking about your blog about it not being Holland. Does Mendy like going in the sleep tent? I can't get ds into one piece pajamas. I have a hard enough time getting him into any pajamas.
imasinger- The fingerpainting his bms all over himself happens at least once a day, but not always at night. He's trained during the day but isn't allowed to sit on the toilet in school because of his fingerpainting and attempts at eating his stool, so he has to wait until he's home to do it. The violent wake up calls happen every night and the temper tantrums are a relatively recent thing, probably due to lack of sleep now that ds is using the potty at night. Ds is in special ed and is getting tons of therapy. I applied for a medicaid waiver so that ds can get reshab but its taking forever.

imasinger

Tue, Feb 19 2013, 9:49 am

Quote:

How to Manage Fecal Smearing

It is not unusual for children with autism to smear their feces on themselves, on the walls, on their clothes. Dr. Kroeger has some specific advice for parents finding themselves in this unpleasant situation. "Children do what they do for one of only four reasons," she explains: to get attention, to get something they want, to escape from something unpleasant, or to have or avoid a particular sensory experience. So why are they smearing feces? What happens when they do it? Are they getting attention? Are they being allowed to escape a situation they don't like? Are they getting something they want? If they're not getting any of these outcomes, they're probably enjoying the sensory input they're getting.
Once you know why your child is smearing feces, you can fill their need in another way. For example, you can give them attention and praise when they go to the bathroom without touching their feces.

Source: http://autism.about.com/od/chi.....rain_ 9.htm

Given that this is happening at night, and that your DS is attacking you in an enraged fashion, I would guess that there is a big attention getting component to your situation.

Try noting every particular that you can. You say it can happen at any time, but can you chart it for a week or 2, and see if there are any times that are more likely? Write down exactly what DS does. Then, bring the info to both an ABA and an OT, and see if they can offer you any help.

Are you getting any home support? Even before medicaid kicks in, do you have health insurance that would cover home ABA visits?

amother

Tue, Feb 19 2013, 10:02 am

My PDD son went through a period of smearing his feces on the bathroom wall. He was about 4 or 5. Luckily he only did it for a month or 2 and then never did it again. I hope your child also stops soon. It's hard, I know. I also don't appreciate the Holland poem. Helland really is a better name.

StrongIma

Tue, Feb 19 2013, 10:32 am

wow! to each his own tailor-made peckele. all I can say is: hats off to all you high and mighty moms dealing with such disabilities. I'm going to be able to count my blessings better now iyh.

[I wonder what my country could be??]