Monday, May 31, 2010

'The shoes are too big'

Angela Amick lives in Ringgold, Georgia and writes at My Three Sons about life with Andrew, 4, Benjamin, 2, and Thomas -- just two months! Following is part of a post that appeared recently on her blog, with the photo of Woody above. It's a moving, honest piece about loving your child but struggling with aspects of your child's disability. I think we can all relate to sometimes feeling like 'The shoes are too big.' Thank you for sharing Angela! Louise

'The shoes are too big'
By Angela Amick

Obviously, my son Andrew didn't mean for this photo to conjure up all kinds of thoughts in my mind.

Woody just needed to get someplace and these were the closest boots. Thankfully for him, they matched his outfit.

But it got me thinking about shoes.

And wearing shoes that are too big.

I thought about expectations.

That others set for us.
That society sets for us.
That we set for ourselves.

Finding out that my son Benjamin has Down syndrome was hard. Open-heart surgery at five months was hard. Last winter with all the illness was hard.

But those things feel like the tip of the iceberg.

Because now, at two years old, I feel like the true challenge has begun.

It's so difficult to have a child who is 25 months old and can get around like a 15-month old, but can only understand and communicate like a nine-month old. Because he has all these physical capabilities but can't communicate.

He doesn't understand me when I ask him to be quiet because baby Thomas is asleep.

I don't understand him when he sticks his fingers in his mouth (no, he's not teething) and does this half-whine/half-cry thing.

He knows about three signs and no words. He only uses those signs ("brush teeth," "more," and "play") when we prompt him continually. He never communicates with us. And we can't communicate with him.

And the noise.

I had to order Thomas a sound machine for his room because Benjamin's noise levels throughout the day cannot be contained. If he's happy, if he's mad, if he's bored...he will be loud. Not all the time, but enough where it is just too much. And he is not at the age where I can tell him from across the room to quiet down. I have to drop what I'm doing (which is not easy or even possible at times), go to him, pick him up, comfort him, give him a pacifier, or just remove him from the room.

When we put him down for bed at night (between 7:30 and 8:00), he plays in his crib until 9:00 or 9:30.

Banging his feet against the slats.
Running around in his crib.
It is loud and there is absolutely nothing I can do about it.
Every. Single. Night.

I can't really make sure that he expends more energy right now. I can't take him outside unless it's one-on-one because he requires that much attention. I am very rarely able to give one-on-one attention to any of my kids right now.

You know how when you have a new baby, you go through a phase where you just kind of move them from one "station" to the next?

Bouncy seat to swing to play mat to crib.
Rinse, lather, repeat.

Well, that is essentially the story of Benjamin's day.

When he wakes up at 6 a.m., which is an hour earlier than the day officially starts in our house, I don't really know what to do with him.

I can't let him just be. He doesn't know how to just be.

He loves to be mobile. He loves to run/bear crawl/walk around. But that can only happen if I am able to keep a close eye on him. But more than that, he tires of it fairly quickly. And he gets LOUD. Then what?

All day, I move him from the playpen (with toys) to the high chair to the bonus room to the crib. Over and over. He does really well playing by himself in the bonus room (with the gate up). But then he's just in there by himself all day. Talk about a guilt trip.

He is a baby.

And I am tired.

Not just physically, but emotionally and mentally as well.

The mom with a child with Down syndrome has some dang big shoes.

And I don't think they fit my feet.

I know they say everyone has their own timelines.

But I feel like I should be better with this by now.

More accepting.

More, "Oh, his milestones take a long time but they're so celebrated" kind of thing.

More "The DS makes him who he is" kind of thing.

Right now, that's all just crap to me.

I am over it.

I'll say what's been on my heart for days and days and days.

I hate Down syndrome.

I just don't get it.

I look at my sweet son, whom I love SO very much, and I wonder.

Why does he have this?

Why does this even exist?

What is it about this extra chromosome that makes it so he can't talk? Can't understand? Can't be typical?

A few months ago, my husband Matthew and I were talking about the fact that Benjamin is so delayed in certain areas. About how really and truly, it is okay. But then I started wondering--why is it okay? Why do we say that it's okay?

And Matthew and I came to the conclusion that it's okay, at least for us, because it has to be. We don't have a choice. And so we say it's okay.

I know the "right" answers of course.

That it just is what it is. We learn from it, we grow from it, we love because of it.

But lately I just don't care.

Yes, Benjamin is very sweet and cute and can make anyone smile.

But I want my son to be normal.

I want him to say "mama" when he's supposed to and to understand that that's me, darn it.

I want him to know that when he's standing in the tub in his shorts and I am trying to hold him up because he is covered in poop, that he needs to lift up his feet so I can remove his shorts.

All I wanted was for him to lift up his feet! One foot at a time. But he doesn't get it.

I hate it that I am bothered by all of this. I should be okay. I should be more loving, more accepting, more patient.

I know it's not his fault. But it is hard sometimes not to feel resentment. I feel like such a hypocrite when I think in my head: "Why don't you get it???" Because I know why. And it should be okay.

The shoes are too big. The expectations are too lofty.

I know all of this is extra hard right now because I just had a baby and my husband has been gone a lot.

But it's still my reality and it still sucks.

I receive many offers from people to help. Very well-meaning offers. And they make me smile and feel loved.

But there's really not much anyone can do right now except for, say, my mom and my husband. And they're not always there.

And they can't ultimately do what I'd like for them to do.

To make it all just be better. To take it all away.

And so I am going to go crawl into bed and have a good cry.

Right after I take Woody out of those ridiculously large shoes.

Because it's impossible to move forward when your shoes don't fit. Even if they do match your outfit.


The shoes don't fit is such an excellent analogy! I think there's an enormous amount of pressure on some parents of children with disabilities to feel the same way as others, those others who have different perspectives and seemingly cheerful, accepting dispositions. I, myself, look toward what I call "my people" -- those who acknowledge the damn hard business of disability, those who have often very dark senses of humor and those who are not afraid to voice great fear and sorrow. I imagine as your son grows older, you will find more like-minded people as well, those with whom you can feel comfortable voicing your fears and grief. For now, thank you for sharing those feelings -- I can so totally relate to them!

I have a son with ASD and health issues. I soooo can relate to your feelings. I do no think that there is a Mom or Dad with a special needs child that has not felt this way at one point in our lives. Maybe numerous times.
It takes a lot of guts to be able to verbalize these feelings outloud. Society makes us feel like we are bad parents if we are truthful and express such feelings. We are then labled as frozen unloving or God help us, undeserving.

When I saw Woody in his big shoes I thought you would be writing about those that need to walk in our shoes. People are so judgemental of us as parents. They do not know our situation when our child is screaming or throwing a massive tantrum. I was so relieved when Joseph was diagnosed with ASD. I could finally tell the little old ladies at church he was not being naughty he had autism. It is sad that I felt that way and that they treated me as they did.

I was once told i did not deserve to be a Mom and that if i could not control my child I should not have him out in public. As soon as I got to the car I was physically sick and emotionally trashed. Yet what was worse my then 5 and 11 yr old daughters heard these statements and my reaction. They still talk about it to this day when ever we pass a Walmart.
So when you get the chance buy a new pair of shoes.

I love this post. Love, love, love it. Sometimes when I write something that expresses very honestly how much I just hate the disability we live with, the pain, the uncertainty, the differences, I feel guilty, or defensive, certain that some other parent dealing with a disability will call me a whiner, or a pessimist, or say that I obviously haven't yet figured out how to recognize all the gifts of life with disability--how we learn what's really important and all that. And I just keep saying over and over and over again that we can learn much of value from life with disabilities, but a lot of the time, it just sucks. Thank you so much for your honesty. It has made a difference to me today.

Elizabeth - Like you, I'm always on the lookout for "my people," and I seem to find a lot of them here.

Oh, thank you for reposting this! I am having a better day, thankfully, but definitely still feel these feelings a lot. I'm just so glad to know I'm not alone. :)

It will get better, I promise. My daughter turns eighteen this month and I remember feeling all that you wrote. You sound worn out. Can you get help? Respite care?

Angela's piece really hit me in a profound way. I think what the others have noted is that push and pull between wanting to be positive about our child's disability -- because we love our child unconditionally -- and sometimes feeling overwhelmed by the challenges and our ability to cope.

And the sense that because disability is devalued in our culture, we as parents have to always be "up" and present a wholly positive view, when in fact, life isn't like that. That creates a lot of pressure.

I thought all of the feelings Angela expressed were natural and common, but not always spoken about. It also reminded me of a young adult with Down syndrome who told me: "I hate Down syndrome!"

I'm grateful that Angela shared this and I can't wait to hear more about Benjamin as he grows.

been there...done son is 11 now. he is still VERY delayed in communication, but it has gotten so much better. you need 'me' time. at least once a week. get your husband, mom, close friend who you can trust, so you can spend time away. you can read a book, take a walk, meet others for lunch, relax in a tub. doesnt have to be fancy...but do it at least a few hours a week to regroup. look into programs in your area for help. respite, wavier, groups for moms with special needs kids. i live in a small community but have found a few things like this available and it helps a lot. no, it's not going to make him normal, but it will make you feel more normal. good luck!

Thank you for writing this wonderful post. It is so real, and truthful, we need more of this because it is real life. It is how we feel. I have a 5 year old with Christianson syndrome and a typical 2 year old, I still can't go any where alone with them because they both need one to one right now. The double stroller is my best friend, when they are both strapped into it I can walk and walk and walk, in snow or sun. I have a wonderful respite provider who comes 2 a week to be with the kids for a couple hours so I can have break. I hope you can find a way to give yourself a break too.

I just love how she wrote, straight from the heart without stopping to think, does this make me look like a bad mom because I'm being too honest...

At least Canyon, my son isnt loud. He's actually too quiet which makes me worry about the same things but for other reasons. He could be entertained with movies ALL DAY, but does that make me a bad mom for letting him???

James (his dad) doesnt care for the fact that canyon has a wavier worker. Says its not necessary and his aide at school agrees. Niether of them have to have him all day long. Being with Rusty (his waiver) gives him something to do besides watching a movie or staring out the window talking to himself in his own made up gibberish. He gets to go places,play with other kids (yes they are 3 year olds (Rusty's boys)but thats Canyon mental level anyway) and not be such a loner if only for 2 to 3 hours 3 times a week. No different then a typical kid getting to go to a freinds to play or a typical kid getting to go to mommy's day out on Tues and Thurs at the local church... They don't get it.

Gosh, do I have some frustration here? I hope that mom gets some help. Yes, it will get better, but will also lead to other frustrations, worries, concerns, problems, issues...

I love Canyon for all he is forever and always. Some parents with kids with DS say they would never change a thing because DS has made their special child who they are, sweet, great personality, loving, forever young at heart...

This mom and I will most likely be the frist in line for the DS cure-shot when it comes out. HA!