The bell rings, the blue door swings open and she runs towards me in her white collared shirt and pleated navy skirt then she wraps her arms around me in a bear hug.
It’s the highlight of my day.
“How was your day Macyn?”
“Goooood!” She draws out the middle of the word as she walks over to the hooks outside the classroom door, grabs her backpack and throws it over her shoulders.
“You had a good day?” By now she’s distracted, talking to her siblings, which is fine because this questions is not for Macyn to answer. This time I’m making eye contact with her one to one instructional assistant. And every day, without fail, when I ask the question my stomach drops a bit as I wait for her reply.
So far this school year, our sweet instructional assistant has answered my questions with positive and optimistic responses. Whew! A much needed change from last school year. Then yesterday when I asked the questions I could see a change in the expression she wore on her face as she said, “It was just okay.”
I recognize “Just okay” is a far cry from bad. Most days “just okay” is just fine with me. But I think because we are only two and a half weeks into the school year, the instructional assistant’s response reminded me that we are swimming upstream and the current is strong and I’m already exhausted and I don’t want to swim for much longer. And I think about Macyn and how she must feel! And did I mention we are only two weeks in?!
We proceeded to talk about how Macyn had her tongue out a lot that day and how some of the kids would say things about it like, “gross” or “why does she do that?” or “what’s wrong with her tongue?” And how significantly different her instruction is from her typical peers because she is so very, very, very, far behind them academically. And how she thinks 20-30 minutes of instruction is too long for Macyn. Then we talked about how Macyn still can’t write her name legibly, and how she and her instructional assistant basically sit in the general education classroom but are doing their own thing. And how Macyn keeps insisting she’s scared of her new second grade class and teacher so she and her aide take lots of breaks and go on walks around the campus. And I’m pretty sure Macyn’s manipulating her way into going on walks. And when I talk to Macyn about it she says she’s scared but really the instruction is too difficult for her. And I want her in school with all the other second graders, in a second grade class. And How I KNOW she can succeed there, “even though…” and “even if…” and “even when...” But how I wonder if her teachers think so too. And I hate that my goals for her are not the same as the districts goals and how we are not on the same page.
And I walk away wanting to scream because it’s the same old thing! And I get home feeling totally overwhelmed and completely alone as the current tries to take me under.
I woke up at 4:30 this morning. As I tried to fall back asleep my mind was spinning with all the emails and meetings and conversation that need to take place with Macyn’s educational team at school. I thought about all the things I am not doing and should be doing for her outside of school. How I’ve got to get her a tutor and find a good occupational therapist and work on our Talk Tools therapy and find a way for her to start taking all the vitamins and supplements I think she needs.
Then I thought about all of her peers who have Down syndrome who I assume are doing all the things she is not yet doing. In my half awake, half asleep mind I imagined all the eight year olds with Down syndrome who are writing their names and reading books and taking spelling tests and speaking clearly and reading a clocks and tying their shoes and counting past 50 and eating lunch with their typical peers and riding a bike and kicking a ball and on and on and on.
Sometimes parenting a child with special needs is overwhelmingly lonely.
And it shouldn’t ever be!
On my walk this morning I thought, I know I am not the only mother who feels this way. I can’t be! Right?
Macyn is part of a Learning Program made specifically for kids who have Down syndrome. It has been such a gift in our lives. She’s grown immensely. But honestly? I tend to feel the loneliest there because it seems she is the farthest behind, and that with kids who have Down syndrome.
I’m sure she’s not the only person in her program who is not doing the list of things running through my mind at 4:30 in the morning. I imagine other parents are feeling lonely thinking their child with Down syndrome is the only child not doing (fill in the blank).
We all know the only thing comparison is going to do is ruin our day. Still, if you’re like me, you find yourself there…comparing. And it’s lonely.
So I just want to say, to all you parents out there who have kids who may not fit in the mold, you are not alone. I see you. I know how hard you are working. How brave you have to be. I know sometimes it is so outside your comfort zone to have to fight and confront and compromise. I know the list of things you could be doing for you kid is one million miles long and growing. And I know, like me, the thing you want most for your child is what parents all over the world want for their children, to succeed, to be included, to be understood, to be cherished.
And I want that too. For your kids and mine!
Now deep breath, it’s time to go pick up our kids. Our amazing, talented, smart, kind, brave, hardworking kids. And hug their necks, and bring them home! You’ve got this! We’ve got this!