MEET JOYBOY, WILL JONES

BY: DR. DAROLYN “LYN” JONES (MOM)

mom and a momager to Will — which is very important to me. I never missed a single day in the NICU, and I have only missed one of his 39 procedures. I had to have surgery myself and was not allowed out of bed, so my husband had two to take care of that week. But that’s it. Otherwise, I am there for everything. And my husband, Jim, despite his demanding once-military schedule and now-work schedule, is there for so much. We are partners and parents in Will’s care and happiness.

And I am grateful that I even get to work. I recognize that privilege. Unfortunately, I hear from so many mothers of children with disabilities who want to work, who have brilliant experiences and skills but cannot because of lack of care for their child or lack of flexible work options that pay a decent salary. I wish that society would 1) pay women equal pay and 2) recognize that mothers have so much to offer the workforce. Work with us around our schedules, and we can show you that we have some mad skills. I can talk on the phone with a home health care company organizing needed supplies while changing Will’s gastronomy tube (GTube) and keeping him entertained.

One thing I have learned is that when you have a kid like Will, go through what we have gone through and are still going through, folks gather or scatter. My mother and father-in-law were the only family that stepped in to help us. Elderly themselves, they would come and help do laundry or mow or cook or change a diaper or just read to Will, so I could get homework done or prepare presentations when I was a literacy consultant and coach. And we had good friends. They are our family, too. They come to the hospital and give us breaks, bring us food, help us with errands and household chores, stay with Will and include Will and us in their plans.

We love our son very much. He is our joy boy. Everyone who is willing to look past Will’s very visible disability and who gets to know him loves him. Even though Will is nonambulatory, nonverbal and intellectually disabled, he knows when folks are afraid or don’t like him or are “freaked out” by him, and he mirrors that response back. He knows who the good people are. If you aren’t sure if someone you are dating is a good person or not, Will can help filter that out for you!

I could write volumes about the pain and challenges. Will has been near death several times, and he has endured more medical pain and trauma than any human should have to. Even now, he lives with chronic pain. And he and we have had to deal with more exclusion, discrimination and ignorance than this article has space for — in every space you can imagine. We have experienced it with medical professionals, school professionals, disability services professionals, in the community at the grocery store, the park or on a walk.

But If I dwell there, if I dwell in the hard, it isn’t productive. What I know how to do is keep Will at the center and keep moving forward. I will keep fighting and advocating for his medical care, his waiver services, for his Social Security, for his education. He is not just my son, but a young man and a beautiful soul deserving of everything humanity has to offer someone who is “neurotypical.” He deserves to be included, loved and participate in this world. And he can do that with the right support. And do you know who has taught me the most about how to find, access and fight for those supports?

Other moms. Sitting in offices with our children, waiting to see doctors or to get called back for therapy services … we talk. There is this immediate and intimate connection because we all get it. The “it” is this life we live that, like our children, isn’t considered typical. I learned about the Medicaid waiver from a mom when Will was 4. He was born in a NICU, had multiple doctors, First Step therapists and yet, none of those specialists and interventionists told us about the Medicaid waiver. A waiver that could have helped us with those early thousands of dollars of medical bills. I learned about good orthopedic surgeons who specialize in cerebral palsy from a mom who had an older kiddo with cerebral palsy. I learned about accommodations we could make to our home using waiver dollars from a mom. I learned what a mobility van was and the kinds of mobility vans that are out there from a mom. I learned about caregiver pay you can access as the mom from a mom. The list goes on and on.

Now there are prolific social media outlets where families share this information. Three outlets I belong to and recommend are CP Warriors, Our Journey, and Indiana Special Needs Equipment Exchange. These outlets were not around when Will was younger. Social media had not yet emerged. For me, it was those quieter conversations with other mons in doctors’ offices or standing in the hallway or parking lots after doctor or therapy sessions that I learned the most.

Two moms sitting in a sterile space, anxious, nervously trying to feed or calm their child. Inside, you want to run out the door and just go back home to your safe space, but you have to be here, you have to show up and you have to advocate for answers, for help for your child. Your eyes meet up with that other nervous mom, and there is this unspoken acknowledgment, “I get it.” And after that look, then you just start talking rapidly before one of you has to go back. The exchange of phone numbers means meeting for coffee or margaritas, phone calls and texts. I am now one of those older moms that people often lean on. But I still lean on some older moms who taught me: Beth DeHoff, Mimi Hyuber, Jennifer Akers and Marie Kennedy, among a long list of others. Talk to other mothers. Gather strategies, ideas and resources from the moms who get it.

A mom moment and milestone for Will was when I first met now Fishers City Councilwoman Cecelia Coble. Her daughter is close in age to Will. We were sitting in a waiting room, waiting for our child’s respective therapists to come out and take our kiddos back to Hippotherapy at TherAplay. And somehow, the topic of crawling came up. I explained that at almost 2, Will still couldn’t crawl. And Cecelia told me not to give up hope because her daughter finally started crawling after a year and a half. And after doing absolutely everything the therapists told us to do and trying every incentive I could conjure, one day, Will started crawling. It was ugly, but he did it. He was 2 years old. And he became Super Crawler — that kid was lightning fast and got into everything and was everywhere. Suddenly I had to baby- proof the house. But what a victory and what a joy.

And one of the saddest days for us was when he couldn’t crawl anymore because his hips were coming out of place, and he had to have them surgically placed in a way that would not allow him to crawl anymore. But then we looked forward to the mischief he was able to get in rolling himself around in his wheelchair. He once decided he didn’t like the music in his teacher’s class and rolled out in protest. I love that he got in trouble and that I got a call from the school. We celebrated that call!

Here is my advice to newer moms.

Grieve the loss of family and friends. It will happen. And then knock that dust off and celebrate in the folks who want to support and love your family. The folks who don’t get it, aren’t willing to get it, or who don’t want to get it aren’t worth your or your child’s energy. In the medical profession, they practice medicine. Don’t be afraid to question, to get second opinions, to seek answers. Find medical professionals who are willing to work with you as though you were part of the team, not a passive participant.

Connect to other moms and to older moms — they are the ones who will share with you what the school, medical, and social services either don’t know or don’t have access to. And they don’t have to be moms whose child has the same condition as yours. Widen your perspective. One child with down syndrome, cerebral palsy or autism is one child. No two are alike. I learned so much from mothers of children whose children did not have cerebral palsy or autism.

It can lonely and isolating, and marginalizing to live this life. Find ways to socialize or work or live somehow in a space that isn’t all disability. My position as a professor at Ball State University is not easy, and it does often require me to work very late nights or very early mornings before Will gets up, but I love having something for me, something different. I love engaging with my students and with my community partners in Muncie. And Will has impacted my teaching and scholarly work in such positive ways. I don’t think I would have ever been as productive and successful a professor as I have been had it not been for Will. Don’t feel guilty about accessing available resources. They are there for your child and your family. Take advantage of what is available to your child and family. Raising and caring for our children is very expensive. I can’t just go to the grocery store and buy formula. It’s not that easy.

When folks give you those looks of pity or ask questions that are sometimes phrased offensively or ignorantly, I try very hard not to overreact but to take on the role of educator. Now, have I “momma beared it” a few times? Oh, yes, I have. I’m human. But I try to take a breath and then respond. I am often asked, “What’s wrong with him?” or “What’s wrong with his legs?” or “Why can’t he talk?” I’ll reply that nothing is wrong with him but that he has cerebral palsy, and he gets around on wheels and uses a smart device — just like we often do — to communicate. And when folks then reply with, “Oh, I’m so sorry,” accompanied with a look of pity, I reply, “Don’t be. He’s a great kid!” And if a child asks, I always invite them to come meet Will and answer all of their questions. Because kids ask out of genuine curiosity and interest. Their motives are pure and unfiltered because they are innocent.

Finally, and this is how I will end this article. This last piece of advice is something that didn’t come to me until Will was several years old. I admit that early on, I asked, “Why me? Why did this happen to me?” And now I say, “Thank God it was me,” because I can’t imagine Will landing with any other family but us. He’s our joyboy. He was meant

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