Recently I was asked by a friend to meet with two moms of young children on the spectrum. She thought I would be a great person to have as a resource. I wrote about that experience on my new blog last week. Ten years after I went through the nightmare of learning what was wrong and realizing the road ahead of us, these two women are going through the same. It was and always is a difficult conversation to have.
At one point, the mom of a two-year-old confessed that she was having a very hard time being around other children her child’s age. She said it was too painful to see what the others were doing, and she asked two poignant questions.
One, do I ever stop grieving? And two, does it ever get easier to be around typical kids?
It was difficult to answer truthfully for one reason only. I didn’t want to saddle her with another blow. She was already distraught and overwhelmed, crying at just asking the questions. To tell her the truth, that yes, I grieve everyday, and that no, it doesn’t ever get easier but you do learn to manage it better seemed, well…mean.
“You go through stages,” I said trying to soften the response.
After our conversation, I couldn’t get those questions out of my mind. They made me wonder about my own grieving process, as well as how often it really is brought to my attention that my daughter is not a “typical” kid.
I know that I think I think about it constantly and that I think I am assaulted by it everywhere I turn every single day, but I began to wonder just how often it really did affect me. Maybe it wasn’t as much I believed. Maybe I could give her a better answer if I actually examined a typical day for me.
And so for one day this week, I decided I would make a note of every time I thought about my daughter, autism, and/or felt a pain in my heart for what has happened to her, and for what the future holds, to really see what was going on in my head. I created a new note on my phone and typed in a brief summary of what had spurred the thought, where I was, and what I was feeling as a result to keep track.
Within two hours, I had to stop.
I realized quickly that the answer is just what I thought: always. Always. Always. Always. With brief intermittent moments of practicality sprinkled in, my brain, heart, and life is overwhelmingly occupied by the impact of autism.
I started taking notes on my way to the mall. I was heading out to go Christmas shopping in a good mood. I put on the radio station that plays Christmas songs all month long, checked my purse for my Starbuck’s gift card, and pulled out of the driveway.
Two houses away, I had my first thought. A wonderful, sweet, caring girl Eve’s age lives there. She is a beautiful and gifted ballerina, a star student, the first chair in the school band, and an overall amazing kid. She is so good to Eve. I can’t say enough about her.
And yet, they are so different. Just driving past her house every day reminds me of that. I wonder constantly had Eve not gotten sick if they would have been best friends. I wonder if Eve also would have been a wonderful ballerina. They started at the same dance studio when they were three. I then wonder what instrument Eve would have played. And I wonder how many sleep overs they would have had being so close to one another.
I have to stop thinking.
Two blocks away I pass the next house that triggers a new thought. This is the home of another little girl in the neighborhood that would have been her best friend. The other girl and this one are best friends now. Eve played with them when she was little.
She too is a sweetheart and so good to my daughter, but they are also different. When the differences became too much, the calls stopped coming. I know the trio of them would have had a blast together. And again, I wonder what they would be doing together right now and what memories they would have shared.
I have to stop thinking.
Another two blocks away, I pass the final house that triggers a thought. This is the home of two people we have become very close with because of our daughters. They also have a daughter Eve’s age, and although her daughter does not have an autism diagnosis, she has some similar issues. We bonded five years ago over our heartbreak, therapies, tutors, and knowing what it feels like to be the mother of the odd girl out.
I am so grateful for their friendship and wonder if we would have become friends had our children not been affected. It is a bright spot in all of this, much like the friendships I have gained through advocacy. This mom is the first person I reach out to about the littlest things…ugh, Eve did this today…or ugh, we have a bully on the bus…or ugh, I just can’t do it anymore. We keep each other afloat. And we make sure our girls have a good time together.
I have been in the car less than two minutes. I pull out of my neighborhood.
At the mall, I look at my list and make a strategic plan for hitting all of the stores I need. Before I get moving, I check my email and Facebook page one last time. I am working for the Trace Amounts team and there is a lot going on behind the scenes right now. For the moment, it appears, I have no requests.
A quick scroll through my newsfeed however, douses me in autism in an instant. This person’s child just pooped in the potty for the first time. This person’s IEP went horribly wrong. And moms who hate children with autism have created a Facebook page. Facebook won’t take it down.
“Well, isn’t that special,” I think in my Dana Carvey church-lady voice. I put the phone away.
The first store I enter is Pink by Victoria’s Secret. I have heard, not through my daughter but through the other moms I know with girls her age, that Pink hoodies are all the rage right now. I walk in, assaulted by loud music, bright lights, lots of people for a weekday, a wall of televisions showing the recent fashion show, and really overpriced clothing.
As I look around the shop, I wonder if this is really appropriate for 13-year-old girls and if I have been given good information. There is a slight pang in my heart as I am reminded my daughter really doesn’t know what’s in fashion, nor does she care.
It’s not that big of a deal, I tell myself, but it bothers me. I was a little fashionista at that age. I remember wanting a Liz Claiborne purse, a Coca-Cola shirt, a Swatch watch, and Forenza shirts. Benetton was also cool. Right or wrong, it feels like a loss.
It’s then for some weird reason I remember something. Gia Guidice, the daughter of Teresa Guidice of the Real Housewives of New Jersey…and yes, I watch it…I’m also huge fans of Jaqueline and Chris Laurita on the show, and I applaud their efforts to help their son and other children with autism…has just released a music video.
It’s not that great, but for a group of teenage girls doing it with a low budget, it’s not bad. Gia, who is singing, dancing, wearing make-up, and having fun shopping with her friends, is Eve’s age. Another pang.
I take out my phone and enter this into my note.
I head over to Build-A-Bear Workshop after purchasing the over-priced hoodie. Eve started collecting the My Little Pony group of dolls a few years ago. They are all neatly arranged on her top desk shelf, and she loves them dearly. She has asked for the last one and a few more outfits for them.
About a year ago I realized this was something that I had thought she would have outgrown by now. Lots of people tell me plenty of girls still love plush dolls and My Little Pony and Hello Kitty, and that may be true, but I know my daughter’s love for them is different. It’s not coming from a place of being cool and cutesy. It’s coming from being immature for her age.
I find the outfits and make the purchase, but not before I have to stand in line and wait. While waiting, moms are coming in and out of the store with their young children; all of who from what I can tell seem perfectly fine.
My mind goes back to ten years ago when Eve was three years old, when I still thought we were in a phase that would pass, and when life still seemed, I don’t know, different. Normal. Pure. Innocent.
I stop looking at the kids and face forward to read the signs on the wall instead. I then make another note on my phone.
By this point I’m becoming very aware of the fact I could fill this note all day long. I decide it would be best to just consolidate the mall experience into one summary for simplicity’s sake. When I leave, I add remembering that we have an appointment the next day with an orthopedic specialist.
Eve has developed pretty severe idiopathic scoliosis over the last two years. Idiopathic is code for they don’t know why it happened, but I do. After her seizure at 18 months old, she stopped using the right side of body properly. One doctor said it was a form of apraxia, a condition found in stroke victims.
She’s had a gait ever since, and even though she uses her left hand; I have never been convinced she’s a lefty. The fact her whole body has grown much stronger on the left side to the point it’s pulling her spine that way, even though we have done physical therapy for years and see a chiropractor, is not a surprise.
It is, however, another blow. I knew the day before the appointment we were likely looking a major back surgery. Sure enough, I was right. Eve will have her back cut open from the neck to the hips to have the whole thing reset with supportive braces this June. I said a quick prayer on my way to Auntie Anne’s pretzels.
I left the mall and headed to the local Hallmark. I like to get really nice matching wrapping paper, bows, and ribbons every year. I love wrapping gifts beautifully. You could say it’s kind of my thing.
I walked in and went right to the section I needed. Afterwards, I checked out the ornaments and went to the counter to pay. There I remembered that my neighbor’s daughter would be home from college soon. She works at the Hallmark when she is home. She babysat my kids for years, and we’re very close. I look forward to seeing her. Then just like that, another pang.
College. Probably not gonna happen.
And then, bang. Another.
Working at Hallmark. Could she do it? These ladies were so cheery and social.
“How are you today? Done with your Christmas shopping yet? Going anywhere special? Well, have a wonderful holiday!”
No, as of today, she could not. She could probably not even make the right change.
Instead of letting it get to me, I do what I always do. I smile and tell myself it’s all going to be ok. I remind myself it could be so much worse and to not even entertain the idea of feeling sorry for myself.
I tell myself to focus on Eve, that this is her pain and her journey, not mine…although, it certainly feels a hell of a lot like mine, and maybe that makes me bad in some way…lots of folks seem to think me feeling heartbroken for myself is wrong…well, screw them…anyway…yeah, where was I?
Oh yeah, well, I’m gonna give this kid the best life I can, I affirm for the millionth time. I’m showing her the world. And if the worst thing that happens is she has to live with me for the rest of her life, well, that’s hardly a bad thing.
For me, I mean, clarifying quickly to no one. Not a bad thing for me. For her? Yes. Very bad. Me? Not bad.
But I will make it great, I tell myself again. Yes, I will make it great.
I start to fantasize. We will go to Paris and spend weeks with family in Croatia on the Adriatic. We will shop and have lunch together in great restaurants, and I’ll help her make all the cakes she wants to make in our kitchen. (Eve wants to be a baker.) I will make sure that she never goes without and that she will never want for more.
But of course, I realize being smacked back into reality by the cold; I know that’s not true. As I walk next door into the grocery store, I surrender to the thoughts I just tried to fight off.
Of course she will go without, Julie, you idiot.
She will likely go without friends, without marriage, without the love of a romantic relationship, and without children. She will likely go without the ability to fully take care of herself. She will likely go without ever being able to fully express who she was on the day she came into this world.
And of course she will want for more. She already does. She already knows something is different about her. She already knows she is isolated. She already knows how much it hurts. She already knows it all.
I make it to the counter and pay for some stamps. I have to send off our Christmas cards, our annual photographic evidence of time and experience as a family. It shows us happy, which I love, but couldn’t possibly capture the pain I carry inside my heart every second of every day. Clearly, this little exercise in trying to capture it has proven it.
And yet, we are happy, I think. We are a happy family, and she is overwhelmingly a happy kid. We have a good life. She is loved. We are loved. And she will be ok. I know this. I will make sure of it. And that’s what I will focus on, I decide. Just like every other day.
I put the stamps in my purse and pass the gluten free isle.
“A whole isle,” I think to myself as I remember standing there ten years ago in tears looking for the maybe two or three things that were available.
Back in the car, I jack up the Christmas tunes. Determined to be in control of my heart and mind, I sing, “All I Want for Christmas is you” in my best voice. I make it the two miles home and pull into the neighborhood.
I pass our friend’s house. I pass her first-should-have-been-best-friend’s house. I pass her second’s and finally pull into the driveway of our home where I hope to find respite, but know that I won’t.
It has been two hours.
Julie Obradovic is a Contributing Editor to Age of Autism.