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.

Friday, December 4, 2009

In a word...

"Lets not quibble! I'm the foe of moderation, the champion of excess. If I may lift a line from a die-hard whose identity is lost in the shuffle, I'd rather be strongly wrong than weakly right."

Tallulah Bankhead

Does anyone ever notice how much paperwork is involved in having a child? From permission slips and insurance forms to notes to teachers, notes from teachers and everything you can think of in between. There is a lot of paper involved. When you have a child with special needs, who requires services, the amount is overwhelming. I think that my family alone is probably responsible for at least a redwood tree worth of paper.

We have recently been going through diagnosis with our youngest, Zoe. Filling out the necessary forms..answering the necessary questions...When did she first sit up? Roll over? speak her first word? Crawl, walk, potty train, do complicated math? It is endless..and it makes me feel like I'm a failure. Ten years ago, when we were doing all of this for Sammy-I could answer every question. In fact, I could answer it with incredible detail. When did he take his first steps they asked? "September twentieth, 1999, at exactly 11:02 a.m." "Eastern time." I answered with smug authority. Now, three more kids and a decade later..I'm not so confident. Sigh..I have had four kids in seven years..and I seem to be losing my memory. (Along with my mind on some days.) I know that Zoe did indeed learn to walk...and she does talk..she even has a fondness for on-line poker! When these things happened-well, your guess is as good as mine. I don't keep baby books, or records..hell, I don't even always remember to brush my hair every day! Isn't knowing that they happened enough?

In truth, it isn't all bad..There are a few questions that I do enjoy answering. "Describe your child to us" and "Tell us what it is you like about your child" The only problem I have with these questions, is that there is never enough room to answer. I couldn't pick just one adjective. How could anyone describe a child in one word? What one word or sentence could possibly encompass all that they are?

Three of the herd have an A.S.D., and although that may explain some of their behaviors, it is far from describing them. All of my kids are joyful, energetic, overwhelming, happy, stubborn, strong willed, lovely,strong, inquisitive, wonderful,curious, talkative, not talkative, tenacious, eager, did I mention energetic? I guess that if I had to pick one word, I would say "human." Beautiful and complex-and as equally entitled to respect and acceptance as anyone else.

nI have to admit, when my kids ask me when they had hit certain milestones-I fake it. "Oh you were about a year old..." "But that's what you said about Oscar!" "He's your brother..uuhhh, families tend to figure out certain things at around the same time..yeah that's you want some cookies?"But when it comes to telling them all the reasons I think that they are wonderful, I am never at a loss for words. As for those forms...I guess I'll just have to fake it there as well-AND learn how to write smaller.

Wednesday, December 2, 2009

some simple advice

If you are a parent about to meet your child's Occupational Therapist for the first time..or if you are going to parent teacher conferences, or any place where you must make a good impression...It is not wise to play with your "personal touch" eyebrow shaver before doing so.

Mother, can you spare a snack?

"I went to a restaurant that serves "breakfast at any time". So I ordered
French Toast during the Renaissance"
Steven Wright





"Are you awake?"

..growl..."I am now."

"Well Zoe pulled my hair!"

"So you woke me up to tell me this? Wheres Papa?"...


"Well...Why didn't you tell HIM!?"

"He's on the computer, I didn't want to bother him."

"So, you came all the way upstairs and woke me up to tell me this?"

"uh huh..."

sigh...Down the stairs I shuffle..there is no point in trying to go back to sleep..she has already seen me awake..she'll tell the others. "Omar??!".." Oh hey..what are you doing up?".."Lily came to tell me that Zoe pulled her hair." "What?..Lil, I told you to leave Mama alone.." "Oops, I forgot." "LIL!....go back to sleep Kath..." "Right." By this point the rest of the herd has noticed me..has seen me standing up..arms empty..apparently looking as though I need something to do. "Mama? I'm hungry..Mama..can you fill my juice..Mama..let me tell you all about Pokemon in great detail.." "I just woke up! Let me get some coffee...didn't Papa feed you?..Omar, didn't you feed them?" "I asked them if they wanted anything, they all said no." "We were waiting for you Mama." "Well isn't that nice" I say as I glare at Omar. "What? I asked them! Really! they all said no!"'s true...I could cover Omar in an suit of goldfish crackers and juice boxes and still they would wait until I was there to ask "Mama, is it o.k. if we pick some snacks off of Papa?" It's a curse. The curse of the stay at home mom.

I just don't get it. It is not like I am the only parent. My husband is a wonderful father-every minute not at work is spent with us. He is accessible-and more than available. Why does it seem that I am the only one who is user friendly? I can't tell you the amount of times I have trudged into the house, my arms filled with grocery bags..only to be met by "Mama! I've been waiting for you!" "You have? Oh...did you miss me?" "YES! Can I have a snack?" sigh..."Wheres papa?" "In the living room." "Why didn't you ask him" "Because I was waiting for you." Sometimes I wonder what they would do if my arms and legs just happened to fall off...would they notice? Or would they, as I suspect say.."Mama, let me help you put your arms back,can I have a snack?" I'm guessing it is just one of those things they will have to outgrow. Or not.

I have been trying to teach them to be more self sufficient. Allowing them to get their own snacks and drinks. But it is a catch-22. If I gave them full access to the snack cupboard-they would eat non-stop until all the food was gone-and then where would that leave me? "Mama? Can you go to the store and get me a snack?" I draw the line at getting in the car.

I am becoming like Pavlov's dog. Whenever I hear one of the herd say "Mama?" I automatically reach for the snacks. I am so conditioned to this way of thinking that I fear what is to become of me. Will I one day wander the aisles of Walmart forcing little bags of goldfish crackers on any unsuspecting child who uttered the word "Mom?" Will anytime I answer the phone, and one of my kids is calling, will I automatically ask them what they want instead of asking how they are? I am growing concerned...and I guess a bit jaded.

The other night as I was taking a shower, there was a knock at the door. "Mama?" knock knock knock.. "mama?"..."MAMMMMAAAA?"...sigh "Hold on! I'll be out in a minute." "MAMA!"..."WHAT!!! I swing open the door.." Can't I take a shower without you asking me for something to eat? Papa is in the kitchen..can't you for once ASK HIM??" "But Mama?" "ARRGGHHHH..WHAT DO YOU WANT??" "I just came to give you a hug."..crap.."Of COURSE you can hug me!!" "I love you Mama".."Oh, I love you too..sorry I yelled" "Thats o.k...Mama?" "What honey?"...."could I have a snack?"