Saturday, December 12, 2009

No one goes to Italy, and it has nothing to do with autism


I'm sure most of you have read or heard about "Welcome to Holland" It's a nicely written piece about having a child with a disability. It is about looking at what that child has to offer instead of what they are lacking. I can't tell you how many people have sent it to me over the years. They can stop now. Really they can.

It is not that I have a problem with the piece. I have a problem with the parents who plan on going to Italy. With the parents who have this preconceived notion of what having a child is going to be. As if it is going to be this wondrous journey where nothing in your life changes, only gets enhanced by the birth of a perfect baby.That it is easy. Well, I've got news for those parents to be...Turn in your passports, because you're not going to Italy. That is not what having a child is like. I'm not saying there is no joy, that there is no adventure. I'm just saying that the fantasy and the reality are two very different things. Me, I wound up in Paramus, New Jersey, and it has nothing to do with autism. Instead it has everything to do with giving birth to a person, an individual, a bundle of need. It is about going from selfish to selfless in one last push. It is not an easy trip. Not for the faint of heart. As for personal plans and dreams? Ha ha! They go on the back burner for a while. That is just the way it is. You are not number one anymore. That needs to be understood.

It is all about the baby and what they need, not about you. Parenting is not a cruise through Venice, but rather a backwards roller coaster ride with twists and turns. It is hard, it is scary, and it can be a hell of a lot of fun. I think though, that the most important thing to remember when planning to have a baby, is that it's not your trip , it's your child's. And surprise surprise, it is their itinerary-not yours.

Today, AoA ran their usual type of "Woe is me-this isn't what I had planned on, I hate my life, but I'm a warrior and must suck it up, and maybe one day I'll look back and see what I did piece" today. It is all about sacrificing pride, relationships, sleep, dreams of having other children, financial difficulties, giving up jobs, losing years,..and my personal favorite-the author discusses giving up her dignity because she had to catch her sons poop in her bare hands. Oh my goodness. Is that all?

I'd like to go over there and say "so this makes your struggle more special-simply because you have kids with autism?" but we know it wouldn't get past moderation. I'd like to say" You think that because your child has autism, you somehow gave up more than a person who doesn't?" But what I really want to say is "WELCOME TO PARENTHOOD..fasten your seat belts it's going to be a bumpy ride."

Once again, we have a piece about how autism affects a parent. There is nothing about the child. Nothing about how hard their kids work, nothing about their struggles, their dignity. (imagine your mother trying to catch your poop in her bare hands as it was coming out.) Nothing. No, these parents didn't birth children, they birthed autism...their "real kids" are over in Italy, and maybe one day after all their "sacrifice" they will be able to go over and claim them.
At the end of the piece, the author asks..

"So where do we go from here? I suppose we continue the battle. After all, I believe God gave us these special jobs for a reason. We may never know why, but I believe that with faith, hope, and love, one day we'll look back and say. "Oh the places we went.""

I hope that one day she does look back. Sooner rather than later. I hope that she realizes that the special reason she got her child wasn't about being in a battle-but rather about being a mother. That much of the time, being a mother-to ANY child, is about sacrifice.That no matter who your child is-there are always rewards. That yes, having a child with a disability is hard, but it is not the end of the world-rather, the beginning of a new one. I hope that she doesn't one day look back and think-"oh the places I should have gone."

As for me, I was thinking that maybe I went to Holland after all. But then I looked up to see Zoe drawing on the dog, Lily and Oscar fighting about what to watch on t.v. an Sammy spilling juice all over the floor. sigh...Nope, still in Paramus, but I have to say, I've got one hell of a view.


Kim Wombles said...

You are awesome! And Parasmus is a fine, loud, messy and delightful place to be. :-)

Clay said...

I used to "catch poop" on a regular basis, for a bed-bound autistic client, 360+ lbs, 3 yrs my senior. I'd have to lift him, turn him on his side, hold him up there and wait, talk to him to "encourage" him, watch it come out, (yuck), and wipe him when he was finished.

Of course, they gave us vinyl gloves, and I made sure to have a paper towel behind him there to catch it, but the best thing I did was to act like it was no big deal. 'Cause it really wasn't, it's something everybody has to do, and he was no longer able to crawl from one room to another, pull himself up onto the stool, and so it was just something that had to be done.

They don't give badges for that, and there's no reason why they should. It's just a normal, everyday sort of thing.

kathleen said...

Thanks kim. :)
Clay, I couldn't agree more! We all do what we have to do-that is life. There are days when I would love a badge for getting up on time AND getting the kids ready and out the door for school :) Dignity and respect-why are these ideas so hard for some people?

Nostrum said...

Do you think nurses/midwives/OBs have lost all their dignity? I'm pretty sure at least one of them has caught some poop. Birthin' women tend to do that, you know, as they spread their legs wide and expose their naked girly bits to a room full of strangers.

Really, dignity went out the window when we became parents.

kathleen said...

Nostum :) I agree, I left all dignity behind when I gave birth..especially to my second-he was almost born in the car..
It just seems that people get this pretty, perfect picture of what having a child is like-forgetting that it is indeed hard work..and heaven forbid they have a child with a disability! They take it as some kind of personal affront..sigh

Squillo said...

Great piece, Kathleen. I've always said that deciding to have a child is like taking a deep breath and jumping off a cliff. You don't have much control over where you end up, but sometimes it's best just to relax and enjoy the ride of your life.

Squillo said...

BTW--I've caught way more poop (and pee, and vomit) from my NT daughter than I ever did with my son.

kathleen said...

Hi Squillo, thanks :)
It is like jumping off a cliff! I'd rather enjoy the ride instead of complaining about it..What parent hasn't been covered with poop, pee, vomit, mud..old cereal..milk, juice..It is just part of the adventure..not so much fun-but an adventure indeed..:-0

Laura said...

Interesting! I don't have a child with autism, so I wouldn't feel right saying I agree or disagree, but! Your children are their own people. You won't always like them, and it will never be what you thought it was. So I totally agree that no matter what, you ain't going to Italy!

kathleen said...

Hi Laura..I think that in our culture-especially American culture-we are bombarded with celebrities having babies, shows like "a baby story" etc. We are always shown this picture perfect image of what having a baby is like. I was blown away when I had my first baby-(before we knew anything about autism) I had this little bundle of just needs-and I felt so very overwhelmed. You don't hear about leaky diapers and spitting up and ear infections..I was raised on "Pampers" ads with beautiful sleeping babies and "Gerber" babies who sat and ate without getting covered in strained peas..All of my kids have made me want to run away from home from time to time! Just by being kids. It is a grand roller coaster ride-Either you hang on and enjoy it-or you wind up bitter, complaining about what you don't have, and not seeing what you do.

denise said...

You know, I have seen many many links to the 'Welcome to Holland ' piece over the years, but I have never clicked on and read it once. The title didn't appeal to me. I figured it had something to do with 'my child's so strange he or she is like those ridiculous people who wear wooden shoes' :)

Thank's for filling me in. This was as enjoyable as Christopher Moore's review of the first New Moon movie!

kathleen said...

"my child's so strange he or she is like those ridiculous people who wear wooden shoes"

Denise! You crack me up! :) That is a riot. thank you

jazzygal said...

So with you on this Kathleen.

I only have one child (Autistic Spectrum) but I get that there's a sacrifice with ANY child you give birth too! Life as you know it is GONE! Replaced by a different one that is fun as well as everything else.

I really love your point about no-one mentioning the child in these pity-me articles. The one thing I remember, through all the difficult tantrums and issues we experienced with WiiBoy is how sorry I felt for him going through all that anger and frustration. Admittedly though I sometimes had to calm down before I felt it!! And I ALWAYS remember my mother telling me after a particularly bad session of how bad she felt for him and wanted to cuddle him. That was amidst all the other comments from other family members who'd witnessed similar scenes "advising" us of how best to "stop that screaming....WHY is he screaming??"

We just have to get on with it when we have kids and just stick an Italian flag up and eat pasta;)We can make the best of things. xx Jazzy

Pavakgirl said...

OK, I had to go read the "Holland" piece. What a sad, depressing person!

and quite whiny too.

Anyone who would send that to a parent of a child who is "disabled"
is really not a friend. boo.

oh and HI! I'm Denise's best friend out here in Ca!!

kathleen said...

jazzy! :) there were many times that I had to calm down first as well..I know, other peoples advice always annoyed the hell out of me-and yet I never felt like I could say anything..but as you said-we just have to get on put up a flag and eat some pasta!
Hi pavakgirl! Any friend of Denise's is a friend of mine-welcome to the herd. :)

Anonymous said...
This comment has been removed by a blog administrator.
Anonymous said...

Dear Author !
It is a pity, that now I can not express - there is no free time. But I will be released - I will necessarily write that I think on this question.

kathleen said...

Hi anonymous. I look forward to hearing from you.

Anonymous said...

Fabulous post Kathleen.

Floortime Lite Mama said...

OMG you said all the things I would have wanted to say

Anonymous said...

I love love love this post — I'm just reading it now because Kim posted a link to it from another site. I've always hated "Welcome to Holland" for all the same reasons you mention here. Who the hell thinks they ever had a right to a trip to Italy to begin with?

kathleen said...

Hi Sarah! Thanks :) I know-I have no idea where that notion comes from! Sometimes I think it is how our society portrays things..having a baby is "glamerous" just look at Angelina Jolie..or "A baby story" or "Teen Mom" it is ALWAYS about the parent..people seem to forget that once the baby is there-they have a whole human being to consider. weird isn't it? I am so glad to find other people who despise that Holland piece too! :)