Monthly Archives: January 2014

Something to Watch this Weekend

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Photo credit: http://www.missyoucandoit.com

If you have HBO On Demand, do yourself a favor and watch a documentary that will capture your attention and melt your heart. If you click on HBO and go to “Documentaries” then “Feature Films,” you’ll find a movie called Miss You Can Do It.

You can watch the trailer here: Miss You Can Do It Trailer

I’m not usually into movies about pageants, and when my husband and I sat down to watch it, I thought, “I hope this isn’t too pageant-y…or too depressing…” Usually, when we do video date night (because you know we’re not going out to the movies), I try and find something funny and light-hearted.

So, for this one, I took a chance. And, yes, I bawled my eyes out–but in a good way! I highly recommend it, for parents of typical children and those with special needs.

I wish that I had been more interested in special needs before I had a child with special needs. Does that sound strange? I feel like I was incredibly closed off from that world, and now I realize that I could’ve gotten involved a long time ago.

If my daughter didn’t have special needs, would I have watched that awesome pageant documentary?

Or this one? Monica and David

Or this one? Best Kept Secret

I can tell you the answer. I probably wouldn’t have watched any of them. I don’t think that makes me a bad person. I think we’re drawn to what we know. And I didn’t know ANYTHING about special needs until July 2011, when Emmy was born.

I know that Oprah loves this quote by Maya Angelou: “When you know better, you do better.”

In my case, I think that it would be: When you know more, you do more.

I’ve stretched my boundaries because I had to. But I’m so glad that I had to because I never would’ve seen what was on the other side.

Over the past few years, I’ve met a fair amount of people who have dedicated themselves to special needs work without having a child, or sister, or brother with special needs. They just did. For various reasons, or perhaps for no reason at all, they wanted to help. I am always touched by those stories. I think I’ve asked almost all of our Early Intervention therapists, “So how did you get into this?” Where did that all start? One therapist told me that, as a teenager, she was helping a friend of the family with her autistic child. I can’t tell you how much that impacted me because I thought back to what I was doing as a teenager and, while I was a good girl :), I wasn’t involved in anything meaningful on that level. I didn’t stretch much out of my comfort zone. One of my goals is to open my children up to a world beyond what they can see. There are many people out there, each with his/her own story to tell. It makes me feel good to finally open my eyes to all of those stories, not just my own.

Why I Stopped Apologizing for My Child

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A while back, I was looking to find a daycare that Emmy could attend a couple days a week. Before I started my journey as a mom, I assumed that my kids wouldn’t go to daycare because I had images of constantly-runny noses, unchanged diapers, and bored staff. Woah, was I wrong about that one! I’ve been able to find daycares that are run more like schools, so my kids are learning, having wonderful social interactions, and making cool art projects. They’ve also become very close with their teachers, and I love to see those special bonds forming. So I am pro-daycare, if you can find the right place.

This happened before I found the right place…

Emmy was too young to attend Charlotte’s daycare, which we’ve been very happy with, so I needed to find a place that would take younger children. And I needed to decide when I would drop the words “Williams syndrome.”

Here’s the thing. Not all parents reveal that their child has a diagnosis. They don’t want a label, they’re worried about their child getting into the school, the don’t want their child treated any differently, etc. I empathize with all of these concerns, and I’ve thought about the same things myself.

In my case, though, I knew I had to tell the school about Williams syndrome. First, I knew that our pediatrician would have to fill out a Universal Health Record before Emmy started school, and that it would say “congenital heart defect due to Williams syndrome.” So the cat would be out of the bag at some point. Second, I figured that the teachers would pick up on her delay and ask me about it. I didn’t want to have to fib my way out of that one. Third, my memory is not great. I would never have remembered who I told or who I didn’t. That’s part of the reason I don’t keep her diagnosis a secret from anyone. I would literally have to carry around a notebook and jot down who I told and who I didn’t — and hope that those people never run into each other!

Ok, so I knew I was going to tell. I just didn’t know when or how.

I called the first school and asked if they had room in their program for her age group. The Director said, “Yes. Come on over.”

I hopped in the car and mulled over how I would tell him about Emmy. When I arrived, he offered me a seat in front of his desk. All I could think was: Williams syndrome Williams syndrome Williams syndrome. He told me a little about the program. I nodded and smiled. Williams syndrome Williams syndrome Williams syndrome.

Finally, he stopped talking and asked me about Emmy. He wanted to know if she was either cruising or walking because that would determine her classroom. They had room in both. At this point, Emmy was barely cruising. She was holding onto furniture, but she wasn’t cruising with ease. I knew, though, that if I didn’t talk her up, he would put her in the infant class with the kids who weren’t walking at all. I didn’t think that holding her back, in that sense, was best for her development. She needed to learn from the kids who were already walking. She was also closer developmentally to her own age group than to an infant.

So I took a deep breath and confidently said, “Yes, she’s cruising. She’s been a little slower in that respect because she has Williams syndrome.”

Cat’s out of the bag!

I swear his eyes nearly popped out of his head.

“And what’s that?” he asked.

I told him about Williams syndrome and, in doing so, I realized that I was apologizing for my child. I was emphasizing that she was practically typical and that Williams syndrome was no big deal. Honestly, I felt gross. I was sugar-coating. I wasn’t being real, and I wasn’t being true to my child. When I saw the look of concern on his face, I just kept laying it on thick — how Williams syndrome would be no problem at all. I didn’t dare say that she might need help on the playground or with art projects. I didn’t mention how great it would be if her Early Intervention therapists could come and work with her. I acted as if she would be just fine with no help whatsoever. And then I sat back and waited for his response.

He looked incredibly uncomfortable. He didn’t embrace the situation. Instead, he probably heard nothing I said after the word syndrome. He nervously said, “Ok, let me go check back in with those numbers and make sure that we have room in the cruising class.”

He walked away and came back with a post-it note that had a number on it.

“Turns out we’re at our limit!” he proclaimed. “I thought we had room, but I was wrong. But I’ll certainly give you a call if anything opens up.”

I’m sure he was lying. On the phone, they had room. In person, after my revelation, they were suddenly booked.

I got back in the car, feeling sick, and drove to the next daycare. I debated not revealing her Williams syndrome this time, but I knew I had to for all the reasons I mentioned above.

This time, I toured the school first and then sat down with the Director who said they had one more slot. Great! She couldn’t back out on me now.

I then told her that Emmy has Williams syndrome and, to my horror, I fell back into that sickening apologetic tone. At one point I even said, “You wouldn’t even know there was anything wrong with her.”

UGH. OUCH. I couldn’t believe those words came out of my mouth.

The Director smiled sweetly and replied, “But there isn’t anything wrong with her.”

I felt awful. Here was a stranger who needed to tell me that there wasn’t anything wrong with my child. But talking to her made me feel like I was getting somewhere. I felt as though she understood and was ready to accept Emmy with open arms.

She then asked if Emmy had any medical issues. I said that she has a heart problem due to Williams syndrome but, here we go again, it’s no big deal.

Heart problem?? The air left the room. Her attitude of acceptance turned into a brick wall. This sounded like a liability.

“Welllll,” she started. “You know I’ll have to check with Human Resources about that.”

People have since told me that it’s illegal to not accept someone with a heart condition, but I haven’t done enough research to confirm that. All I know is that, when I called her later to see if she had checked with Human Resources, she said she was mistaken and that they actually didn’t have room for Emmy. The class was full.

So the woman who just told me that there was nothing wrong with my daughter was able to find something wrong. Thanks for the life lesson, lady.

I felt disgusted. I had basically sold my soul to explain away Williams syndrome, and both places rejected me. I felt as if I weren’t giving Emmy the credit she deserves. Instead of proudly embracing what was special about her, I was apologizing for her and explaining her differences away. And they didn’t take her anyway! All of my sugar-coating got me nowhere.

So I decided to speak honestly and openly about Williams syndrome. It is harder for her to do things. But, damn, does she try HARD at everything she does. She perseveres like no one else I’ve seen. And her sweet personality is just such a gift. I’m so proud of this girl.

Just as I resigned myself to not finding a place that would take her, there was a phone call from another school that we had been trying hard to get into. We had been on the waiting list for a while. They were packed but found a spot for Emmy a few days a week. The Director was so welcoming and, when I talked openly about Williams syndrome, I didn’t scare her away in the least. She said that she couldn’t wait to meet Emmy and that they were so happy to have her. I asked if we could have some of her Early Intervention therapists there to help her, and she responded, “Of course!” She didn’t freak out about Emmy’s heart or about her lack of walking. She wanted to put Emmy in with her age group, which I whole-heartedly agreed with. It felt good, finally, to be heard and understood.

Thinking back on my “apologies” for Emmy makes me feel icky to this day. Hey, this diagnosis isn’t her fault! She did absolutely nothing wrong. Through a completely random genetic event, she was made this way. And, boy, do I love everything about her.

So this whole experience, while stomach-churning in parts, gives me the confidence to say:

I am no longer apologizing for the special needs of my very special child. 

Love you, kiddo.

January

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I’m having an interesting time with January so far. I’ve been going nonstop from Halloween through the end of 2013 — holidays, snow days, presents, clutter cleaning, cards, lights, tree, the ambition to do “holiday related” activities; the ball drop at midnight. It was a big rush to New Years.

The self care that I’ve written about before got pushed way to the back burner. I just put my head down and GOT THINGS DONE. Writing is very therapeutic for me, but even that  went straight to the bottom of the list. I actually felt guilty glancing over at my stack of books about writing. I’ve been working on a memoir about the past two years and, if it gets finished before 2045, it will be a miracle.

So, with all the craziness of October-December, I slid into January needing a complete recharge. It was hard for me to get back into writing right off the bat, but I cleaned out the clutter in the study, which is always a precursor to SOMETHING happening. And then I sat down with a few writer friends last week and, wow, did that feel good. It’s funny how some of us completely ignored our writing during the holidays, while others were actually productive. The productivity of others helped ignite that fire within me again. The words of encouragement from friends “You have to finish this book” also moved me forward.

But there’s something else stopping me too. When I write about the past two years, I want so badly to capture how I initially felt about Emmy’s diagnosis, how that feeling sat with me for a good six months and was only chipped away at little by little, and how that feeling is so far from what I feel today. As I move away from that feeling, it’s harder for me to go back where. Was I really devastated by this diagnosis? Really?? It’s hard for me to believe looking at the sweet, funny, good-natured, lovely daughter that Emmy is today. When we sit down at the breakfast table every morning, she gives the biggest, brightest smile and announces what she’s eating. I’ve never seen anyone that happy in the morning–ever! “Yogurt!” she declares, holding it up for me to see. Was I really upset for 6 months about Williams syndrome? Really?? It’s hard for me to even believe it myself.

In order to write about it accurately, I have to go back there in my mind. I somehow have to put aside the smiling cutie pie that I see in front of me and sink back into that mindset. Because even though I’ve moved on from that early time and changed my views on Williams syndrome by 180 degrees, I still feel like the story is inside of me. It’s just sitting there, waiting to come out. It’s been sitting there for 2 years now. I’ve changed, but the story is still heavy on my mind.

It’s the story of how I thought I would never smile again. It’s the story of how I bought every book I could find about having a child with special needs and read them through tears thinking, Is this really happening to me? It’s the story of how I thought my marriage was going to crumble because that’s just what happens, right? And it’s the story about how it was so hard to connect with Emmy for 6 months because I felt as if she were underwater. There was a barrier between my daughter and me and, during one Early Intervention meeting, I broke down sobbing and said, “I feel like she’s underwater. I feel like there’s a veil there, and I can’t break through. I don’t know how to connect with my own daughter.”

Those feelings have completely dissipated now, and the child that was once “underwater” now runs into my arms and says “Huggie!” But that story is still sitting there, and I remember it well.

The thing about writing memoir, though, is that it can hurt to go back there. If I were writing fiction, I don’t think I’d end up in tears just thinking about Chapter 2. And because I don’t want to feel that hurt again, it keeps me from sitting down and writing. Though if I don’t write, I still always think about writing, and that just drive me nuts…

I haven’t written fiction in a long time. I also haven’t read fiction in a long time (except for my friends’ pieces), though I’m starting to get back into it now. Memoir and personal essays really speak to me. A couple years ago, I wrote a very painful, true piece for a writing group. It was difficult to write but, boy, did it feel good to get it out. At the end of the night, we were all filing out into the parking lot, and this woman held me back to say that my piece really touched her because it was so raw and it brought her right back to things she’d experienced as well. That’s when I’m writing at my best–when I can go to that place and not sugarcoat. To me, the words don’t matter as much as the feeling behind it. I can always go back and change the words. But I can only revisit those feelings so many times before I can’t go there anymore. Or, in Emmy’s case, before I become too far removed from those early months and completely forget the pain that I was in.

Emmy will be 3 in July. Can I finish this memoir before then? Before I completely and utterly forget what it was like when my daughter was “underwater”? One of my writing friends suggested keeping a daily word count. That way I won’t get bogged down in revising Chapter 1 (as I’ve already done 100 times…). I just need to keep moving forward–get the story off my chest. Get it DOWN on paper. And, no matter where it goes from there, I will have gotten it out of me. For me, that is therapy.