Advocating for Your Child with Exceptional Needs AND Yourself

By Jeniffer Gillette-Dionne

AS PARENTS, WE ARE ALL ADVOCATES FOR OUR CHILDREN; WE FIGHT INSURANCE COMPANIES, BILL COLLECTORS, AND ANYONE WHO GETS IN THE WAY OF TAKING THE BEST CARE OF OUR EXCEPTIONAL CHILDREN. BUT HAVE WE EVER THOUGHT OF BEING ADVOCATES FOR OURSELVES? WHY, MAY YOU ASK? BECAUSE EVERY DAY YOU WAKE UP, YOU ARE RUNNING A RACE, AND IT’S ALWAYS NEW AND DIFFERENT. SOME DAYS ARE HARDER THAN OTHERS. LET’S FACE IT, THERE ARE SOME DAYS YOU CRY BEFORE 9 AM.

Picture a typical morning—you are starting at the crack of dawn. Maybe you are staring at the coffee pot, which seems to be taking a year to brew a cup of coffee, listening to the tiny drip drop of the sweet nectar that will get you going. Or maybe it starts at your child’s side. They are already looking at you, smiling, awake, and ready to be picked up. Or perhaps you wake up your child who needs to be changed and have their feeding tube set up, and you see such love in their eyes and smile.

Some days start with a screaming child. You rush out of bed to calm them, heart racing, even knowing in the back of your mind that they are OK, but there is always that little “whatif” that runs through your mind and makes you run just a touch faster. I know I always hated waking up to the sound of screaming. It just seemed to start the day off wrong.

Here is where it gets hard, deeper, and more vulnerable. Here is where we talk about becoming advocates for ourselves. Mama, how was today, really? How are you holding up, Dad?

Everyone always asks about the children, but sometimes they forget the parents also need help: a listening ear, a shoulder to lean on, or someone who, upon occasion, can dry tears and just be in the moment. The daily difficulties can take a toll. And as the saying goes, “It takes a village.” Unfortunately, most of us don’t have the privilege of having villages today.

I interviewed a mother with two teenage boys on the autism spectrum who also have attention-deficit hyperactivity disorder (ADHD). I asked her how she was doing mentally, and let me tell you, it was eye-opening. It was also a little heart-wrenching, to be honest. Notice there are no questions in the interview. That’s because I asked none; I just let her breathe and say whatever came to her mind, the good, the bad, and the stuff she didn’t even think she was holding inside.

With her permission, I will share some of her thoughts:

• Some days are better than others. My 17-year-old still needs direction on showering and brushing his teeth. He will be with us forever.

• My youngest, 14, is very impulsive and gets in trouble a lot. I deal with the all-too-often calls from school because he blurted out something offensive or had a meltdown. I feel for my baby, who’s not a baby anymore. I want him to be happy and succeed, and he’s dealing with a lot as a budding teen.

• Then there’s the embarrassment and shame that I’m failing as a parent as I apologize to the exceptional children’s teacher or counselor who walks my child out to me because he has to go home for the day.

• Most days, I’m overwhelmed, worried, scared, and feel like I’m failing them. Some days I just want a break, to sleep, and not worry about what will happen when I’m sleeping.

• It also causes stress and arguments in my marriage.

• It’s a heavy weight. I love my boys. I’m proud of the hard work they’re putting in. But it’s hard, and I’m exhausted. I carry much guilt over what I’m not doing right.

Did you see yourself in any of her words? Did a tear run down your face? What is happening in her home is happening in homes all over our country every day. Does the reason to become an advocate for yourself and other caregivers seem a little clearer now?

It’s really time to reflect on the mental health of parents with children of exceptional needs. But where do you start?

• Admit you aren’t OK. “It’s OK to not be OK,” is something we hear often in today’s world, and it applies to you, too.

• Seeking outside help is one of the most important steps. Find a therapist, preferably one who works with exceptional children and their families.

• Start journaling. Write down the good and the bad, and be prepared to unleash the ugly, too!

• Spend some alone time outside. You will be surprised what just 10 or 15 minutes soaking up some Vitamin D will do for you.

You have the toughest job in the world but also the greatest privilege. Raising children with exceptional needs is something people rarely envy, but they don’t get how special it can really be. The person I interviewed is a dear friend of mine. Just last month, her oldest son said something I won’t soon forget. In his deep, manly voice, he said, “I miss you, Jeniffer. You moved. I want to see you! I love you!” This brought both his mother and me to tears because those words aren’t something someone who will continue to live at home throughout his adult life would typically utter; it was a magical moment.

The suggestions in this article could get you on the road to feeling a little more like you than you may have felt in a long time. Be your own advocate, and remember the harder you fight for yourself, the more energy you will have to fight for your exceptional child!

Jeniffer Gillette-Dionne has advocated for making mental illness non-taboo for over 10 years. Her experience in motherhood groups, mental illness groups, and helping many friends get their lives back has given her a fresh perspective. Jeniffer struggles with mental illness, so writing about it is her way of paying it forward. She has a passion for helping anyone she can, always being active in her community, and helping those lost in the fog of mental illness find their way home.

LinkedIn: https://www.linkedin.com/in/jeniffer-gillette-dionne/