When You Did Such A “Great Job” With Your Kids with Disabilities
Thirteen years ago, after the birth of my first son, I knew something was wrong. He wouldn’t breastfeed.
Everyone was quick to dismiss me.
“If he’s hungry, he’ll eat,” my father-in-law said.
But he was hungry and he still wouldn’t eat. Luckily, I didn’t listen to that advice and started learning how much my gut would guide me as a parent. This turned out to be very helpful as both my children, I learned later were both gifted and had special needs. This unique situation twice-over would make me become an expert in many things because I learned quickly that no one could ever be fully relied upon to know everything- not grandparents, friends, doctors, teachers, or the school system as a whole.
Fast forward 13 years and I’ve been through a sea of law battles and passive-aggressive skirmishes with schools. My eldest son has attended a whopping total of four preschools, and three elementary schools and is now attending his second middle school. My youngest one, ten, who has autism spectrum disorder is a calmer child (only at school) and has been less problematic to raise. Still, he’s a handful at home. Drug bills and doctor bills are still high and I spend way too much time helping my kids fulfill their academic potential as there is no money left for tutors. Ever try tutoring your kids on a regular basis? It’s like when your dad tried to teach you how to drive. Pure torture.
That said, as of now, they are doing okay. Both of my kids still have tantrums, and my kids (one or both) still have ADHD, dyslexia, dysgraphia, Autism Spectrum Disorder, Learning Disorder, Mixed Receptive Expressive Language Disorder (Who named this disorder? Are they human?) However, right now, both kids are in the schools that I want them to be in, both have good summer camps planned out for them, and both kids are working towards meeting goals that I have set for them.
Mom is the unsung glue
So where does that leave me and why am I even talking about me? Any parent who you deem intelligent and caring and has a child who has issues with school will tell you this: Shit don’t work without you making it work.
I’m not kidding. It’s appalling. Your child can be gifted or have special needs or both. Some of you may have experienced a bit of this craziness. Have you ever gone to your doctor and said, “You know what, I need this drug. Can you write me a prescription?” Then your doctor gives it to you OR she says no, and then you go to another doctor and he gives it to you.
So now is the time to ask, “Do you feel like you have expert care?” Of course not, but this is what it’s like for parents like me. Our children lose out on needed supports if we don’t strongly advocate for our kids. This puts us in a constant state of fight-or-flight-anxiety. It’s pretty much the reason why I quit my job as a publicist ten years ago.
Don’t you dare call me a “Tiger Mom’
This state of anxiety has been my life for the past 13 years, especially the last 10 when my first child entered the school system. I have constantly had to convince the school system through expert testimony from people whom I’ve paid or by myself (after reading tons of books) that my children need help. Please note I knew very little about child psychology before having kids even though I was a publicist for a medical school.
Therefore, I am not qualified to go toe-to-toe with a professional. I usually can’t afford to get a “D” to come to my meetings with me (MD, PhD, PsyD) so you’ll find that I’m usually on my own, reciting what I know to convince teachers and the city (purse strings) that my kids need this service, this strategy, or this curriculum.
But how does anyone know how to be that person? The only way they can do it is by being extremely vigilant- but don’t get me wrong- I’m being vigilant for equity and access not for excellence. There’s a difference. So I’m not a Tiger Mom but you can call me a Tiger Bitch any day. Taxpayers do not owe our children “best” or “excellence” but the government does need to ensure that our children make appropriate progress in accordance with their potential — — that is what “unique needs” means in the first sentence of the IDEA.
Vigilance looks like this
1- Get constant updates at school so that you know progress is being made. Send many “Just Following Up” emails even though you are thinking other words inside.
2- Researching books, academic papers, and articles like you are being paid to do so even though you are not.
3- Giving and getting help for free from other parents if we are lucky enough to find each other online.
4- Paying for therapy and medicine and engaging them constantly to make your dollars count.
Exhausting, right?
So many parents tell me how amazing I am. So many educators tell me how amazing I am. Heck, I’m so “amazing” that I used my special knowledge to write about learning, toys, and educational technology. It turns out that if you are forced to learn about gifted education and special education so that you can avoid your child from suffering educationally then you end up learning a lot! This knowledge even led to contributing to my own blog at Forbes because I’ve become an “expert” in the area of child development and toys.
But I do have some form of certification. I am the proud patron and participant of four neuro-psychological assessments (totaling at least $15,000) and over 20 individualized education plans. I also manage online peer groups and have provided countless one-to-one peer counseling sessions to other parents for free. Am I an expert? You’re damn right I am. But can I profit off this when I “go back to work”?
The Familiar Face of Crisis Fades Slowly
I owe grace to the stars that I am able to do a little less for my kids these days. I had a feeling that I could start moving beyond occasional freelance writing and get serious with my career. How did I know I could?
I got really bored. I started drinking more. I started sleeping more. I stopped using my parenting tools and started doing stupid things like yelling. I also happened to wake up and realize that I was forty pounds heavier than I was when I was first pregnant. Much of it was gained in the last two years because that is when I began transitioning from managing crisis to just managing challenges.
You don’t know when you are transitioning. By the time you realize it, it’s been underway for a while. My body and mind had been screaming for a change. I’m finally listening to it but there are so many mountains to climb like getting rid of bad habits, establishing new good habits, and continuing to extinguish special needs fires.
The biggest mountain to climb is reinventing my career. I’ve gotten these kids on a college-ready track but I’ve sacrificed my own career so much. I don’t even know if I’ll be able to pay for college once they graduate. Isn’t that just total bullshit?
My husband, and it’s a miracle that we’re still married, can contribute but we’ve saved zero because of all the bills.
This is not an ending to my journey in parenting what many call twice-exceptional children (two challenges- woo hoo!). Don’t think for a minute that the gifted part makes things easy. For more on that read: If This is a Gift, Can I Send It Back? by Jen Merrill.
There is no Harvard valedictorian speech at the end of this movie. There is no story of my son being a 30 under 30 despite his dyslexia. There is no amazing employer that “discovered” me because I’m so valued for having all those special skills as the mother warrior/expert that I am. That’s because this is not an ending, it’s transition which is really just an ugly time.
Nevertheless there are days when I am so hopeful, so excited, and feeling like I can do anything. On other days, my career looks rather FUBAR because like my kids, I don’t fit into a box. Most parents returning to work don’t. It’s hard to have a vision without a frame. Maybe that is why I decided to write my first post on Medium today. I feel like I’m in the middle of those two zones but who knows how I’ll feel tomorrow.
Jenn Choi is an expert on toys and learning and writes at Toys As Tools, her website. She is also a contributor to the Leadership Channel at Forbes. Follow her at Toys As Tools
