My boys are in drama camp this week, their last camp of the summer. This Saturday, camp will culminate in two performances of Snow White and the Seven Dwarfs. Because my boys limitations are “mild” and invisible to most strangers, I try to ”mainstream” them as much as I can.
They have sensory processing disorder, a metabolic disorder (pyrroluria) that looks a lot like Asperger’s that we treat with vitamins, and mild anxiety. Most people who meet them at first don’t even realize they aren’t neurotypical. They do so well at times, and I’m so used to their issues, that I wonder if the labels need to follow them to new situations. I think, Maybe I should let the labels go, not mention them to the camp counselors, maybe they’re close enough to ”normal” that no one will notice. Maybe my kids are typical enough that I’m not even qualified to blog at Easy to Love. Then, when I turn off the autopilot and pay attention, I’m reminded that the therapies have helped but my boys aren’t “cured.” I realize that this community is where I belong, because they understand and can relate to my situation.
The first day of drama camp included auditions, even though everyone was guaranteed a part (not necessarily a part they liked or wanted, but a part nonetheless). They began with lining the kids up by height in a long line. Although my kids were among the last to find their spot in the line, I was still hopeful that they might go through the camp with their issues unnoticed. The director instructed everyone to go down the line, saying their first and last name and their age. Simple enough. He said it twice and gave an example, “Joe Smith, age 9.” No problem. But after twenty children said their names and ages perfectly and the line came to my seven year old twins, they struggled to follow even this simple instruction.
“Will, my name is William but I don’t want you to call me William, I like to be called Will. My last name is Drury. I was born in February and I’m twelve…no seven.”
The other kids chuckled and the counselors scribbled on their pads. Sitting in the audience, even I snickered a little. There was no way my kids were going to get one of the good parts, with lines, singing, and action. I felt like I could read the director’s minds: They can’t follow simple directions. They ask too many questions. They complain about not having enough space to sit, they can’t sit still. These kids are going to be trouble. We’ll cast them as bats. Even the five-year old can be a bat.
So I’m trying to help my boys embrace their inner bat, and gloss over their disappointment at not having a better part. I struggle daily with where my boys will fit in the social structure of their lives. My hopes are so high because they are so smart and funny and strong and talented. But in times like these I wonder, Are they destined for a life on the third string? Don’t my children deserve more than that?
Parenting an ETL child is a daily roller coaster ride. Being on the edge of disability is a tough place for a parent to teeter. I haven’t given up hope yet that they might learn to manage their issues so well that they could experience a more typical adulthood, but some days their issues stand out so prominently against the “normal” social canvas that my hope begins to run thin. I wonder if it might be easier on my psyche to just climb off the roller coaster and give up the hope. What toll am I taking by wobbling along the line between remaining optomistic about future improvement and accepting that my children will always struggle?
So far, I’m not ready to climb off the roller coaster. Optimism is the foundation of my stubborn nature.
Please commiserate with me. When have you struggled with optimism versus acceptance of your ETL child?
Lorraine Wilde is a freelance journalist, environmental scientist, and mother. Her work has appeared in Nashville Parent, Entertainment News NW, Ithaca Child, and the parenting web site Neighborhood-Kids.com. She also blogs at My Wilde World.
Hi Lorraine! I loved your post, this is something I think about a lot too. My son has ADHD and he has responded really well to our consistency, medicine, and our parenting in general. His school has also been overall great with him. Most days he does so well, especially when he is in a routine, that I forget anything is different about him. As he has gotten older, those moments where he struggles become fewer and less frequent, but somehow their intensity startles me more; because has he grows and develops, his delays or quirky behaviors, when apparent, are that much more striking than when he was little. When he is having a hard time, we call it “having an ADHD moment”. THis can be brought on by fatigue, hunger, meds wearing off, or being in a new or challenging situation. This helps us keep him on the continuum of what is “normal”, while acknowledging that he has his ups and downs. It also allows us to laugh about those moments, recognize them, and respond accordingly. It’s hard when a disability is invisible, as with our boys. My son is also really tall, so he looks older than he is. Sometimes I am not sure what people around me are thinking. I try not to worry about it too much. It sounds like with your boys too, the reason their symptoms are mild, is because they are being well managed. When I get startled by a difficult behavior, or an “adhd moment”, I try to remind myself that if I am startled, that’s a good sign, it means that more often than not, he is doing well. That his symptoms are not the norm.
Nadia! You totally understand what I’m saying. Thank you! I do agree that my boys “moments” are more frequent or pronounced when they’re in a new situation (like summer camp). I also feel guilty that I scheduled this camp poorly, immediately after we returned from a vacation out of town. They probably would have responded better if there were a few down days at home before jumping in to camp.
I also agree that I’m more affected as they grow older as well. When they were smaller, I think other people (and me) are much more accepting of differences in preschoolers, but there is something about getting past about first grade that people start to change their openness to differences. The bar for behavioral expectations rises. My boys are taller too, and they’re looking so much older these days, so when they’re having a moment where they look 9 but are acting like 5, people don’t brush it off like they did a year ago. I definitely try not to care what other people think, and do a good job a lot of the time, but when the other people have all the power in the situation and will be interacting with your kids all week (like the director of the play), it’s a lot harder to just say who cares what they think, because what they think will directly affect the direction and tone of the conversations they have with my child when I’m not around. I still feel so protective of their interactions with other adults, especially ones who could be insensitive about their issues. I’m sure every parent struggles with this as the kids get older.
I love your closing, “I try to remind myself that if I am startled, that’s a good sign, it means that more often than not, he is doing well. That his symptoms are not the norm.” It’s hard to remember that when I’m feeling tired or angry or frustrated. Maybe I should write it on a note and pin it to my shirt! Or tatoo it on my arm!
Thanks for sharing!!!
I am right there with you guys!!My daughter ,10yrs,has just been diagnosed with ADHD.We are not on meds yet but drs are pushing through tests after test it seems!Katherine acts sooooo normal at times and I have parents come to me and say “REALLY”!I too have to remind myself but the melt downs bring it all back and as a parent sometimes it is REALLY hard.I remind myself she desserves love and compassion and its those days I just want to hold her and says I LOVE YOU!!
Hi-I’ve got an 8 yr old boy who has always been tall and been expected to act older by society even though he’s at least a year behind socially, emotionally, etc. He’s always been on the spectrum but recently diagnosed with ADD. His school, like yours, is awesome. The kids in his class have been very accepting. But that’s were it stops. Playdates are almost non-existent as are invites to birthday parties. Adults who have just met him react with the “Really? I would have never known!” with the look that you’re making it up. He’s come so far that heart sings for him. But has so far to go I sometimes sit down and cry. Mostly because of his lack of friends. He’s noticing that now and it really bothers him. We do all we can at home but kids need their friends. I need to get over this but to be honest, I don’t know how.
I do go back and forth whether or not to tell summer counselors he has an issue, but then I watch him with his peers and you can tell he’s just not quite there with the others. Love, patience and the need to get over myself is what I say every day. And it could be so much worse.
Amy,
It sounds like we’re in just the same place. Some days are great and so much progress has been made, but that social aspect comes up every other day. Knowing that it could be worse makes me more thankful for what we have. I’m also trying to learn how to just appreciate the good in each day and work on learning to let go of the worry. Very tough job, but we keep trying. Thanks for sharing!
Hi, My name is Sparky Jones, I have two teenage boys with Pyroluria, it has been a very difficult rollercoaster ride. I do understand what you are going through. I have faced the judgement of other kids, adults, family, school officials, and everyone else I have come in contact with concerning my boys. You must keep the faith, and be thankful you found it in your boys so young, unlike my sons. They are worth it! Know that there are others out here walking in your shoes too. May you and your boys be blessed.
Thanks for posting Sparky. I do feel incredibly lucky to have figured it out early. It definitely felt like serendipity. Many blessings to your family as well. Lorraine