Grief, Grace, Grit: One mom's story of life with Fragile X
A mom, stepmom and professional therapist shares the ups and downs of raising Owen, and her journey as a special needs mom.
Editor’s note: In March of 2010, Kathleen Quinn’s son was diagnosed with Fragile X, the leading inherited cause of genetic intellectual disability. Quinn documented the journey of her child’s disability diagnosis on a blog, of which portions were published in BayState Parent in 2011. Now ten years later, she writes with candor about the last decade -- raising a child with special needs along with life’s twists and turns. This personal essay contains profanity.
Fragile X is an inherited condition that gets passed down; a genetic mutation that expands, generation by generation, to suddenly turn off production of a necessary brain protein critical for brain function. From my father, from his mother, from her father. I was the lucky generation to hit the lottery.
Well, not me, but Owen.
Eleven years ago, Owen was a 20-month-old baby -- a baby -- when we learned that the gene had fully mutated, and that he was fully affected. That’s when I entered the world of “special needs parenting.” They say “special people get special kids” -- apparently I was not special before.
When I received the call about his diagnosis, the last of many blood tests to come back, my world was rocked. At night when I should have been sleeping a common refrain would repeat in my head: “Hey, I’m OK as long as my kids are healthy.” But I wouldn’t have that. My kid was not OK and never would be. There was no “cure.” How would I ever find joy again with a child who would forever depend on care?
My grief was sharp and deep and full of terror. I constantly questioned what I had done, why this had happened to me, why had this happened to my baby. My baby. I would scour Facebook and look at photos of strangers’ families, all with healthy kids. Why was everyone else so lucky, and I was genetically cursed? The ultimate genetic lottery loser.
It turned out this inherited gene came with a fun box of possible surprises to come. Neurological issues. Reproductive issues. A gift that can keep giving in all the worst ways. Owen was just a 20-month-old baby, when I began to fear for his future.
To try to think back and summarize the past decade is like trying to explain with just words what it’s like to be in the center of a hurricane. You can't understand it unless you experience it. Even those closest to you don't really get it; they may see glimpses of your life, but they never truly know what it’s like. No one feels the daily weight on your soul, your awareness that you will never have another carefree and restful day in your life, the ongoing internal anguish of fear that someone will harm your child no matter how old they get.
After Owen’s initial diagnosis, I threw myself into advocacy and education. I went to DC to meet with legislators, attended national conferences, and participated in research studies. I chaired special ed committees on a local level and helped spread in-school awareness of disabilities. I also participated in monthly “support” groups, aka dinners out where I met other moms who also carried the gene that had been passed on to their children.
Advocacy and connecting with other parents became my saving grace. Most importantly, I gained a network of women friends throughout the country and beyond.
Within a few years of Owen’s diagnosis, I got divorced from his father.
And then within a few more years, I remarried and gained two stepdaughters, each a year younger and a year older than my daughter.
And then I had a baby. Just a few minor changes, ya know?
Owen now had a new step dad, two stepsisters, and a tiny brother. Life became less about saving the world and more about the tiny personal world inside of the walls I lived in. Mom, stepmom, and a new baby boy. Owen continued to have a disability, but as what happens, life took over. It became less about “special needs parenting” and more about just parenting. All those unknowns became known and lived in. Future fears turned into current annoyances. Kids with disabilities are still kids, after all. And kids can be annoying AF.
Our family of seven can reminisce about many horrifically embarrassing yet amusing anecdotes with Owen. Family memories have been built of restaurant vomiting, accidental public nudity, or throwing a fist at a stranger when overstimulated.
Owen’s predilection for overeating used to result in the stimulation of his sensitive gag reflex and resulted in profuse vomiting at the most inopportune times. There was that time he projectile puked his entire kid’s cheeseburger meal at Pub 99. I felt proud that I’d caught most of it in a bowl (I'd had lots of vomit experience by then), while his sisters perfected the art of disappearing. Like, I didn't even see them leave, they were just gone. You've never seen a family move so fast as one that’s escaping the smell of vomit spreading throughout a restaurant. Check please, we will take the ice cream sandwiches to go.
Owen’s disability is a unique experience that is shared by us all, and affects all aspects of the family. Sometimes it's about divide and conquer, just like when children are very small. One takes the rest of the kids, and someone -- often me -- stays home with Owen.
Owen gets a lot of time and attention, but he can also cause frustration and embarrassment for the kids (see vomiting story above). I've seen them protect him, take care of him, and be annoyed by him. I think I’m afraid to ask them how he’s affected their lives because I fear the negative. I never wanted him to be resented by the other kids, to feel he’s somehow ruined their lives.
Owen has had a pretty typical relationship with his little brother, Jax. To Jax, Owen has always just been his big brother, and any diagnosis wasn’t understood until Jax was older. It has been heart healing to watch them together, although in recent years they have combined evil forces to drive their family members nuts (and to be honest, their plan is working.) They annoy each other, watch SpongeBob together, and steal each other's toys. As I expected, I watched Jax grow to cognitively surpass his brother and begin to understand the ways Owen is limited. The other day he told me he would be able to “take care of Owen” if I needed to leave the house. He’s already feeling responsible for his older brother, and that broke my heart a bit. But I reminded him that he got into plenty of trouble himself, and I didn’t think that at age 6 he was quite ready for any babysitting.
How much have the kids lost due to life adjustments for Owen and how much more will they lose? Just typing that sentence made me enormously emotionally uncomfortable.
At 13, and in an ABA (applied behavior analysis classroom) within a typical middle school, Owen has finally chilled on the projectile vomiting (hallelujah). He's a sweet boy, very funny, and very caring. He loves his family, his teachers, his friends at school. He's super polite and says please and thank you. He wants to know where everyone is at all times. He watches the same scenes of TV shows repeatedly….over...and over….until you lose your mind and he has every word memorized. He has a bizarre sense of intuition and often knows and recognizes things unsaid -- when people are sad, when his teacher was early in her pregnancy. He’s very in tune to emotions and one has to be careful to regulate around him because he’s an emotional sponge.
But as a result of these things, he is sensory reactive. He has a lot of symptoms that people would typically associate with autism. Fragile X is caused by a chromosomal repeat which causes a necessary protein production to be shut off, and his brain is biologically different from ours due to this lack of protein. So life for him is comparable to us living in a Chuck E Cheese: loud, noisy, crowded, annoying and hopefully weapon-free.
Owen is easily overstimulated. He hates tons of direct eye contact. Detests the birthday song. He won’t let me crank my tunes in the car. He prefers to be alone, in his room with full possession and control of his remote (not dissimilar to many teens).
Owen’s language is rapid and can be difficult to understand. He has perseverative language, which means he repeats himself. Like, millions of times per day.
He has been destructive, aggressive, self harming, head banging, and environmental destroying (those in the know will understand those are school terms). I couldn't go to school concerts because if he saw me he would run offstage and leave the gym. In his world, I’m out of context at school and do not belong there.
Although I was hopeful, it turned out he felt the same for the Special Olympics. They are wonderful events that really help you feel part of a larger local community, but when Owen saw me in the audience at the last one I went to, he flopped on the floor, banged his head and told me to leave. I barely made it outside the doors before bursting into tears. We’ve had to give up a lot and now kicked out of the Special Olympics? That truly sucked.
Finding places that accept us is priceless, and often, it's the most unlikely places. Complete strangers can be so kind while family members still throw around the “R word’ which continues to give me a visceral reaction.
One angel is Owen’s barber. Owen HATES haircuts. The noise, closeness, sensation of scissors -- fugetaboutit. Having to hold him down while the scissors came dangerously close to my face made me choose other battles and Owen had a surfer look for most of his young life.
A few years ago, I heard about a new place called Axe to Grind in Worcester that was good with kids with disabilities. I walked into a place that looked more like a tattoo parlor than barbershop. All the barbers were tattooed dudes and crude rap lyrics blasted overhead. After so many horrifying experiences, I was extremely hesitant. But the owner, Justin, took Owen in his chair, and cajoled and joked and discussed Power Rangers. He was intrinsically aware of Owen’s sensory issues and he’s continued to cut his hair for the past two years. Owen gets pissed, refuses, yells at Justin to stop, but I’ve never, not once, felt uncomfortable there. This one seemingly small victory gives me reassurance. There will be people that get Owen, and it certainly won’t always be who or when you expect it. My friend calls them guardian angels. The kindness of strangers is a gift I never take for granted.
I hope his siblings see that. That they learn to value people based on the strength of their character and their kindness rather than what they look like. I hope they learn to value those who lean in, who listen to Owen, who make an effort to peer into him as a real person and make a connection. I hope they learn to value all people, those considered on the outskirts of society, to see the person. I hope they learn that no one is perfect, including themselves, and to not have unrealistic expectations of themselves and others. That humans make mistakes, that their adults make mistakes and will continue to. I hope they see that I'm still learning and trying and failing. I hope they learn grace and acceptance. I hope I didn’t fuck them up that much.
I hope to learn grace and acceptance for myself. I wish there was a magic eraser for the guilt that rules so many of us.
Owen’s dad and I help each other out (as we should), sharing care on days that aren't "ours" to help with events or stress, or so we can take the other kids to loud, noisy, crowded places that Owen wouldn’t like (think Red Sox game or Spencer Fair).
Asking for help with Owen is hard and scary, but most of all it's being unable to let go. Not knowing who you can trust or who can handle him, or feeling guilty about putting people out and burdening them. Life with Owen comes with major adjustments. No fairs or concerts or crowds. Even taking him to stores is stressful because he can take off and I find him in an aisle casually opening a package of Oreos and shoving four in his mouth. I don’t go to someone's house where I can't guarantee a quiet room for him to chill in, and I'm certainly not taking a spontaneous trip to a busy city or theme park or football game that's full of unknowns and unpredictability.
Some kids with Fragile X can do these things, usually by immensely hard work on the parent's part and a kid’s genuine interest and ability to tolerate intense sensory stimulation. So do I feel guilty. Should I push more?
Owen’s dad, Derek, agrees.
“I feel guilty when I push him, and scared, because you don’t know what can go wrong,” he said. A few years ago, Owen hit a woman in line at an ice cream place, he recalled. “Maybe we stay home more due to my own fear.”
Guilt is a huge recurring theme. We’re guilty either way. We could always be teaching and learning and exposing him to more. Sometimes we succeed, sometimes we fail, and oftentimes we don't even try due to our acceptance. We adjust. Most of the time it can be OK. It just becomes your life, and you have to accept and adjust, or you’ll be pretty fucking angry. (Don’t get me wrong, anger is allowed, it's just a sucky place to live in.)
We caregivers have higher rates of depression, anxiety, acute stress, and shorter life spans. As special needs kids get older, the constant care can wear on parents. Sleep and patience are lacking while fear and anxiety are constant.
Special needs parents are burnt out and resentful at the sacrifices we've made. Sometimes we're ashamed at their levels of frustration we feel with parenting. Special needs kids are home more, and most will continue to live at home for the remainder of the parent’s lives. They won’t leave for college or get married and move away. Yes, we are resentful that relaxing golden years is an oxymoron. That we will forever live with heightened senses, listening for our kids in the middle of the night.
For the rest of my life I will be in charge of Owen’s care. No Boca Raton retirement for me.
Looking back on the past ten years for this article was surprisingly painful rather than fondly nostalgic. Interspersed with the regular drudge of daily parenting were intense reminders that life was not normal, that every one of our kids has had to adjust to Owen’s disability, and that his behavior, anxiety and inability to function in some situations has made us avoid activities or functions.
I reread my old articles. Truthfully, skimmed. I don't like being reminded. I don't like stirring up the memories at the bottom of the pond because I don’t like what comes to the top. Old pain. Old traumas. Old crazy incidents that we went through and survived. Old intrusive memories poking their way into the now and making me sad. Reminding me about past suffering.
There has been so much shit - both figurative and literal - that the only way through is forward. I don't spend too much time in the past because it’s pointless. I am over feeling guilty for my genetic condition.
After ten years, I've really just stopped talking to most about my struggles with Owen, both emotionally and logistically. There’s a variety of responses when you confess what’s really hard in your life. The results? The wide eyed pity. The “I don’t know how you do it.” The “God only gives you what you can handle'' bullshit. And sometimes, a complete pragmatic that grabs a pen and paper to help you brainstorm a grief schedule.
So you stop talking. You don’t want the eyeballs or the pity or the annoyance, frankly.
But do you know what the past ten years have been like?
Hard. Fucking hard. Not easy. Not always fun, I tell you. Am I allowed to say this, or do I now feel guilty for admitting I’m not a special person who was "chosen" to have a special child?
The past ten years have been full of fear and frustration with grief, interspersed regularly, for flavor. There’s been lots of guilt: I should be doing more, teaching more. What about the other kids; are they neglected? I should stop complaining, at least he’s physically healthy. At least he can feed himself and talk.
See I love the guilt. Parents, we all love the guilt. Throw on a genetic disorder and you can really get the guilt ball rolling.
One coping strategy for me - a life preserver, really - has been having friends with kids with disabilities. They are mentors and allies and warriors by my side. In the past ten years I have been absolutely blessed with women friends with special needs kids. It is immeasurably helpful to have friends who get what it’s like to have our kids, particularly when you live with a genetic time bomb inside you. They’re people who get your dark humor and don’t look at you with pity or Bambi-eyed fear.
Ten years is a lot, and while I would love to wrap it up in a bow with an optimistic life lesson for you, I cannot. That's not how real life goes. But I do know that the past ten years were better than I expected them to be. A lot of my fears were never realized. And I’ve learned that even though this life can be hard, it can still be filled with joy and humor and light.
I think we wait a lot in life. Waiting for things to happen, to get better. Waiting for weekends and summer and the days we imagine will somehow be easier. But life doesn’t get easier --people get stronger. Here’s to another ten years of growth, change, and accepting this unexpected, but beautiful life.