4/08/2015

We Can't Look Back, Only Ahead

I will never forget sitting at my desk in my office at the University staring at the ultrasound pictures of my first two babies. Baby A had such a perfect profile, but there was something off about Baby B's slightly sideways profile.

We would later learn that Baby B would be born with a cleft lip and palate, something that we much later learned was caused by a deletion in one of his chromosomes. I beat myself up for a while for not pointing out my suspicions to either my husband, an oral surgeon, or my OB/GYN.

But what would it have changed? Nothing.



Our beautiful little Baby B would still have been born with a complete bilateral cleft lip and cleft palate. Looking back would have done no good. Only looking ahead would help him . . . and us.



Sometimes I feel that way about Slim's autism diagnosis.

By the time he was four years old, we noticed some strange behavior. He would begin every day by running in circles around the house. Or he would be watching television, get excited about something, and would have to run laps around the house.

There were the plastic play spoons he would always have to carry and his obsession about sharks. There was the way he would walk the perimeter of a room at a party or a new Gymboree class.

There was the way that he would memorize and parrot back commercials, television shows, and books. The way that he didn't really interact with other children his age.

And there was the way that he didn't really hug you; he just "leaned in."

He was enrolled in an Early Childhood Special Education Preschool program with other children who had speech issues for various reasons. Some had autism. I didn't want to believe that he had autism. After all, he talked to us and other adults all the time, he looked us in the eyes most of the time, and he didn't have some of the other severe behaviors that autistic children had.

But I asked anyway. I asked the preschool teacher and the pediatrician and the speech teacher. Then I asked the kindergarten teacher and the first grade teacher. Everyone said no, he's not autistic.

Though it was the answer I wanted to hear, something kept nagging me. Every time he said something that we didn't know how to answer or had a meltdown about something that we didn't have a strategy to handle or every time my heart broke watching other kids faces as they looked at his strange behavior, I thought: This isn't fair to any of us. 

They all said no until one day we accepted yes and they agreed. And we were relieved.

Only now I am mad and sad and upset. I am mad that no one saw it sooner. I am sad about all the time that has been wasted on the wrong kinds of therapy and treatment plans and all the times his Dad and I have yelled at him for being HIM. I am upset at myself for not demanding it sooner, for not "Google-educating" myself on how to better handle some of his quirks a long time ago.

Looking back, I wish we had started autism therapy so much sooner. Maybe things would be different. Maybe they would be better.

Slim knows that he has autism, and he has been reading up on it. He probably knows more about it than his dad and me combined. In fact, he said something very profound the other day about it and let me share it on Facebook.

He's eleven, and he talks of acceptance - something his fortyish-year-old mother cannot do. In the struggle to accept what is,  I must place myself firmly in the present with my eyes to the future because those are the only things that I can change. I can work on those, make those better.

April is Autism Awareness month; though some people would prefer it to be called "Autism Acceptance Month." That makes sense to me. I believe every parent in America knows what autism is and what the characteristics are. We all trained ourselves to look for those characteristics in our developing children.

We also all know an adult who is a little odd, but we never knew why. According to autismsociety.org, more than 3.5 million Americans live with an autism spectrum disorder, and that it is never too late for an adult to be diagnosed with ASD. We often look at people we think are strange and talk about different things and want to distance ourselves from them.

I want to share a story with you. My sister-in-law works on the campus of a major university in our town. She was walking across campus the other day in a hurry to get to a meeting. As it was a gorgeous afternoon and she is such a friendly person, she saw a young male student on his way across campus as well and commented to him about the lovely day.

And this young man stopped and began to tell her many details about the barometric pressure in the air and the exact weather patterns that aligned to make this a perfect weather day. She contemplated smiling and moving on as he was talking; but then she realized that she was looking at our very own Slim, a mere decade into the future.

So, meeting tardiness be damned,  she stopped, turned to the young man, and really listened to what he was saying. He stopped himself abruptly and said, "Oh, I'm not supposed to go on and on like this. You must have somewhere to be." She smiled and said she'd love to hear more about something he was obviously so passionate about.

And there we had a glimmer of Slim's future. A look ahead, past acceptance and straight on to what things will look like once his therapies get in place.

No use looking back. We can't change that. We can only look ahead and have hope for good things in the future - learning, practicing . . .

. . . and accepting.














3/26/2015

When you suck at being a grieving parent


Joey is buried in a cemetery that just happens to be right down the street from where I take Slim for bimonthly speech therapy appointments. Last week, the weather was finally not bitterly cold and windy, and I thought for a minute that I should go down the street to the cemetery and visit Joey's grave.

But I didn't.

I didn't go. Because I hate to go there.

The last time I was there was Christmas time. My parents' neighbor had decorated Joey's grave for the Holidays.

As you can see, it still wasn't undecorated for fall. 



Last week I wondered if I should go to see if the neighbor had removed the Christmas items yet.

But I didn't.

I didn't go. Because I hate to go there.

In fact, I hate a lot about the whole "grieving process." I hate that it's called a process. What's to process? My son is dead, and I will never see him again.

And now I have something new in my parenting journey to feel guilty about.

It's not enough that I regularly forget to ask my fifth grader for his discipline card on the weekends so I can sign it for its return on Monday.

It's not enough that my third grader asks me to cuddle with him every night; but instead I am falling asleep in my toddler's bed, also leaving Hubby with no one to cuddle.

It's not enough that I don't make my academically struggling first grader practice reading and math facts more often.

It's not enough that my toddler gets way too much screen time while I am trying to "get things done;" and then I wonder, what in the hell did I even get done today? 

It's not enough that I make the same mediocre dinners night after night.

It's not enough that at least a couple times a week my boys have to dig dirty school clothes out of their hampers because mom hasn't done any laundry in days.

And it's certainly not enough that I am involved in, like, zero committees at the boys' school.

There are so many ways I can make myself feel guilty about not being a good enough regular parent, much less a grieving one.

I mean, I see these beautiful blogs and Facebook pages dedicated to someone's lost child. Foundations and organizations and movements and fundraisers and 5Ks and books and all of the wonderful things that other grieving parents manage to do to honor their children's memories.

And here I sit, unable to even finish what I have started and making excuses as to why I can't. Unable to even go to my son's grave and remove some damned decorations that are three months old.

Because they are still there. Hubby's mother told us they were on her last visit to the grave.

They are there, and I am not.

I would rather tuck my grief away in the privacy of my own mind. It's safer there. Instead of feeding it, I can ignore it. Or only face it sideways rather than sailing directly at it - second star to the right and straight on till morning.

But that only feeds my guilt as well. I have actual plans, just like those other grieving parents do, but they get lost in my complete failure to execute them. The status quo is safer. Acceptance lies in status quo. Good memories lie here under which the bad have long been buried.

To change anything now would be akin to digging up the body, and that would just be too hard.

But it might also take away some of the guilt.

As I stand at Joey's grave up on that god-awful lonely hill, down the hill to the southwest is a stone in the shape of a butterfly. It belongs to a baby girl who lived only a month. 30 days on the earth. I often wonder how many of those days were spent in her mother's arms.

Of the rare times I visit my own son's grave, I often turn toward that child's grave. It is always decorated with balloons and flowers and stuffed animals and holiday decorations.

And I feel guilty that I am not giving my own son those tributes.

But then I realize that child's mother only had 30 days with her, none of which was a holiday or a birthday or any other special day.

I had six birthdays with my son. Five Christmases and Halloweens. Six Easter egg hunts.





Three first days of school.



We had vacations and trips to the park and proud moments watching him go off the diving board for the first time and play soccer with his friends.

That little baby girl's mom didn't get any of that.  She is getting it now, but only in the suckiest way imaginable for any parent.

Grief isn't a competition. No one wins, and there is no judge awarding points for "Best Use of a Lawn Ornament to Spruce up a Headstone."

No one is grieving better than you; just differently. 

As if we don't have enough to feel guilty about as parents, we should not feel guilty about the way we manifest our sadness and grief. A very wise woman - who herself is a grieving daughter and grandmother - once said to me, "Just because you are not there at his grave every day doesn't mean you don't hold him here (she placed her hand over her heart) twenty-four/seven."

I remember taking this picture like it was just yesterday. 


And just like that, she took away some of my guilt, winning this grief round - for now.








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