These are my most important, most favorite, best-ever people in the whole wide world: my son Jackson and my daughter Taylor. They are 21 and 19 respectively, so I am using their real names. I’ll also use Stella’s real name. She’s our 11-year-old Rhodesian Ridgeback who only has 8 teeth left and makes us laugh when her lip gets stuck on one of them. (Here’s one of our favorite YouTube videos on this pressing dog issue.) We always find the bright side. It’s our family way. 🙂
But things are changing. My first musketeer just moved out.
I recently helped my son move to Iowa City for work and university. After a few years at community college and working nearly full time, Jackson applied to and was accepted to the creative writing program at the University of Iowa. He is paying for the majority of his school, living expenses, etc. His father and I are helping financially as we can. But he is the driving force. To say that I am proud is the understatement of the year. If you know me, Jackson, us, or if you follow my blog, you may know that we have had a tough road, me and my three musketeers.
This is a huge win for our little family. A hard-fought, heartfelt win.
In seventh grade, my son’s first progress report was dismal. It was no surprise, considering he hated school, his parents had just gotten divorced, and he was struggling with an undiagnosed development disorder. But I knew this was one of those critical moments where he could go left or right – and it could all go off in a ditch fast. That night, we had a serious conversation. I did most of the talking, which I know I should not do but I can’t help myself when I am all fired up. His eyes glazed over. I was losing him. Then I remembered how much he loved LEGOS.
“Hey, remember when you showed me Darth Vader sitting on that LEGO toilet the other day?” I said.
He perked up and stopped slumping into a puddle on my kitchen counter.
“It was pretty funny, yeah?”
He chuckled, imagining Darth Vader taking a dump on his LEGO toilet. I had to chuckle, too.
“What about your LEGO Cities? You like those, too, right?”
“Oh yes,” he said quickly.
We talked for awhile about his favorite LEGO City, why it was his favorite, the time it took him to build it, etc. I listened. He relaxed.
“You know what, kiddo? Right now, with these grades, you’re working up to a LEGO toilet for your future. A really nice LEGO toilet. But it will just be a toilet. Don’t you want a LEGO City?”
My son stared at me. In that moment, I knew.
I finally found the right words to reach him.
It’s different when your child has special needs.
I don’t share much about my son’s issues because frankly, it’s not my story to tell. But at this point in his life, he deserves a huge shoutout for what’s he’s overcome, what he’s accomplished, and how hard he’s worked to build his dream LEGO City. Given all this, I can only tell this story from my perspective. He was finally properly diagnosed in his teens after years of us struggling to find answers, hope, and healing. Before then, we were told so, so many different things.
Here are some of the most stupid, unhelpful things:
- “Just try to get him through high school. If you can.” A therapist.
- “He is very immature, he annoys the other kids and still likes to play with action figures, he’s much too old for that.” Fifth grade teacher who would not follow my son’s 504 accommodations.
- “Your son has accommodations that were supposed to carry over from grade school? Hmm, we can’t seem to find that.” Middle school special needs “team.”
- “Wow, why is your kid so out of control?” There were so many variations on “you’re a shitty mom, Mom,” from so many places, this sums them all up pretty well.
- “Mrs. Miles, this is the school. Your son won’t do x, y, z…” Various teachers and teachers’ aides in grade school calling me at work 50 miles away to complain about my child.
- “He’s a momma’s boy.” “What a Sally.” “I’m not going to hold his vagina for him if he can’t get his homework together after school, he’s in seventh grade for Christ’s sake.” “I didn’t give him his medicine. I don’t think he needs it.” His father.
I didn’t know what he “had.” But I knew who he was.
The most amazing, wonderful, smart, creative, funny, sweet, awesome kid I’d ever known (until my daughter came 18 months later, and then I was lucky enough to have two). My son was born in 1999 and the diagnostics and awareness were not where they are now. Google was only a year old. So in addition to talking to my pediatrician, working with the school, trying different doctors and therapists, at different points medication, I did what I do best: I researched. I read. Voraciously.
I researched the impact of diet on children’s behavior – sugar, red dye 40, gluten, dairy, every single thing. I researched innovative ways to discipline and parent. I learned the importance of routine and structure. I read books like Raising Your Spirited Child. I tried the seemingly straightforward, simple things that made sense to me. For my son.
Here are some of the most helpful things:
- “Don’t say your child is stubborn. Say your child is persistent.”
- “Say, my child’s energy will serve him well someday in his career, whatever he chooses to be.”
- “Marinate your kids in love.”
- “If they need to talk at 3AM, you are there, listening, at 3AM.”
- “Know that your child is special. Unique. You just have to find the right way to help them harness the power of it.”
I tried everything: all the medical interventions, therapists, specialists, you name it.
I reached out to everyone I could find, spending whatever I had, to try to help my child. Out-of-pocket, not covered by insurance to see a specialist at Northwestern Hospital? $300 for one hour? Okay, I can do one hour (gulp). Tutor? Okay, I can do once a week for awhile. (More worth it than the Northwestern “specialist” but still more than I could afford.) While I did find an excellent team at my son’s high school once he was approved for an IEP, there were so many other people who were not helpful, if not downright hurtful, like the psychiatrist who yelled at him for asking questions (as I had guided him to do, so he could start being his own advocate) when he was 16. I was grateful I was there. She was not. I was a raving Mama Bear Bitch, fired her ass, and found someone 1,000 times better.
Do not fuck with my kids.
Truth? I’ve always found it hard to stand up for myself.
But when it came to my kids, especially my son, I realized I had to get strong fast or he would be lost and it would be all my fault. I would never let that happen. I had to be their advocate. I had to fight to get them the care, accommodations, support, money, whatever it was, that they needed. No one else was going to fight for them like I would. And it also meant I had to quickly discern who was the right professional to help – and who wasn’t. Who was telling me something that made sense and who was talking bullshit.
In the beginning, I trusted the “doctors” and “experts” because I thought they knew best. After enough bad experiences and outcomes, I quickly realized that the one person who knew best for my child was me – and I had to arm myself with as much knowledge as I could so I could identify the right people, the ones I could trust, to help my son. To this day, I look at all “experts” with a healthy dose of skepticism. So do my children.
As it should be.
I tried it all. Even a fortune teller. 🙂
We were in La Jolla, California. It was our last vacation before the divorce. One night we popped into a fortune teller’s place. I had a reading, and she did one for each of the kids with me sitting beside them. She said nice things to both of them, all good stuff, and they thought it was silly and fun. As they ran out the door, the woman rushed after me, calling my name. I stopped, one arm holding the door open.
“I know you worry about his mind,” she said. “But his mind is strong. His mind is strong, Christy.”
I imagine I wore the same dumbfounded look my son did when I told him he was building a lovely LEGO toilet for himself. I knew in my heart that she was right. But no one had ever said that to me before. You know you’re on thin ice when you cling to a fortune teller’s words.
Sometimes you have to take your hope where you can get it.
But that was then. This is The Now.
When I hugged my son goodbye in his little studio apartment, I didn’t cry. I’d rehearsed that moment in my head so many times because I so badly wanted it to feel Rocky Balboa triumphant, not me doing an ugly cry. I wanted it to feel like:
We did it! We won! We beat ALL the odds!!!
And there were a lot of them. Kid with special needs. Sibling struggling with all that this implied. Divorced parents. Dad checked out. Single mom running the show. Just Google the negative outcomes of single moms running the show. I honestly don’t know how we did it. How we got here. I’m afraid to talk about it too much in case I jinx it. So many others don’t make it. So, so many. I think in my heart I will always be a little afraid of a shoe dropping. But in this moment, I know my son is in a good place. He’s ready for this. It’s what we’ve worked for all these years. It’s so fucking awesome!!!
“Bring it in, dude.”
My son gets a kick out of doing the “man hug” with me. 🙂 We grab each other’s arm, pull ourselves in, slap each other on the back two or three times (must be short and crisp, hands should not linger), then break apart. (The video does a much better job of explaining it.) I always do it a little wrong because I am a dork, short and a girly girl and I end up stepping on his feet (size 11, in my defense) but I try really, really hard. So we did the man hug and this time I did it all right. I gathered up my things, knowing I had a three-hour car ride home alone to cry it out. He followed me out to my car.
Jack: Hey Mom
Me: Yeah kiddo?
Jack: “It’s a pretty cool LEGO City, huh?”
Tonight’s Creative Writing Inspiration:
My daughter sent me this song a few years ago, saying it made her think of me. It inspired me. It kept me going at times when I felt I had nothing left. I listened to it as I wrote tonight. (I think the character is a hooker but let’s overlook that dramatic element lol). I love that I share music with my children as an emotional language when words fail us. I love that my daughter felt this song in us.