Stuck in the middle with you


During each of my three pregnancies, I was aware (as virtually all expectant parents are) that there was a possibility my baby could be born with an illness or disability. That’s not to say I was prepared to have a sick child (who could possibly be?), but that I was aware that the murky future held that possibility.

What I never could have imagined was that I would have a child who had serious issues that no one could diagnose and worse, that few people would take seriously. I never saw myself trudging all over Albuquerque with a screaming baby tied to my chest, sitting across a succession of desks in front of dozens of doctors who would variously tell me I would just have to learn to deal because all babies cry; or that I was fulfilling some dark, personal need to be the parent of a disabled child; or that I should seek psychiatric help for myself; or that I was causing my baby’s symptoms by transmitting my own anxiety to him; or hand me yet another copy of The American Academy of Pediatrics Guide to Your Child’s Sleep (of which I ultimately collected seven copies).

I felt this broad assumption that I somehow wanted something to be wrong with my youngest son, instead of an understanding that I knew something was wrong and needed help to identify what. My insistence on more tests, more referrals, and more attention caused some health professionals to view me as the sick one, a mistake that seems more understandable (though not excusable) in retrospect. For one thing, I was dangerously sleep-deprived, a state that wasn’t compatible with presenting oneself as a rational, intelligent, concerned parent. For another thing, I had no idea why Carter screamed all the time and rarely slept, but I feared and believed that he was in excruciating pain, which made me frantic.

Meanwhile, I began to doubt my perception of reality, because there is a limit to the number of times a person can hear that she is “wrong… all wrong” and continue to have faith in herself, especially when a good number of the people saying she is “wrong… all wrong” are medical professionals. If a message is repeated often enough it will start to feel true, no matter how much evidence exists to the contrary.

This is how I ended up at my youngest son’s fifth year of life demoralized and despondent. I was emotionally unhinged and though I went through all the motions and did the things a parent does, I had all but given up on finding a diagnosis for Carter. At that time, he went to a very small private preschool where the teachers and kids made accommodations for his idiosyncrasies (Carter only sat in the yellow chair, had to leave the bathroom before anyone flushed the toilet, screamed for a long time after drop-off, never slept during nap time, ate nothing except jalapeño and mustard sandwiches, on and on) but I knew that, come time for him to start kindergarten, life would change.

And change it did, with a predictable blame-the-parents script that had become familiar. “He doesn’t know all the letters in his alphabet! Don’t you read to him?” “He cries for you far too much during the day for a child his age. Have you never left him at all?” His kindergarten teacher described for me, in excruciating detail, the proper procedure for a time out because “he’s obviously a youngest child and has always had everything done for him.”

Well, obviously.

Around that time two things happened. The first was, our pediatrician gave us what I think of now as The Magic Referral. That slip of paper granted us entrance to the office of Dr H, a developmental pediatrician, and the first medical professional to hear my concerns and take me seriously. He had copies of The American Academy of Pediatrics Guide to Your Child’s Sleep on his shelf but he didn’t give me one. He looked me in the eyes and said, “Wow, that’s terrible. Just awful. We have to find out what’s happening and help him,” at which point I burst into tears and tried to hug him.

The second was, I began to meet other parents of children with brain-based disabilities, both online and in real life. As I listened to those parents, I began to hear my own story repeated again and again—the same fight to be heard, the same dismissal of parental concern, the same criticism and condemnation from health care providers (not to mention family, friends, and strangers in the grocery store), the same self-doubt, the same struggle to keep life going while a long crisis unraveled in their families as it had in mine.

Talking with those other parents made me understand that the biggest mistake I made began long before Carter was born. I had invested much of my identity and self-worth in my children as a reflection of (I thought) my capacity as a parent. When my eldest son (Carter’s senior by nine years) surprised the people who hand out samples at Costco with his charming manners, I was pleased with myself for teaching him good etiquette. When my daughter (7 years older than Carter) did well in school, I patted myself on the back for setting a good example and encouraging her to work hard. None of that is to say that I was walking around the world like some kind of hateful braggart, but I identified far too much with my kids. I assumed if they were happy and well behaved, that was proof that I was doing a good job as their mom.

When I had a child who couldn’t even laugh much less impress everyone in a restaurant with his excellent behavior, I was primed to feel like a failure. While I knew that there was something very wrong with my child, there was some more primal part of my mind that believed a miserable child could only be the result of a terrible parent. If I could take credit for my older children’s happiness and success, then I had to take the blame for Carter’s challenges.

It took several years, but I eventually started to get my feet under me and learn to advocate for Carter without taking everything so personally. My friends taught me by example how to advocate with strength and to view all my children as individuals, whole and complete unto themselves, and not as reflections of me or my ability as a parent.

In an unsurprising turn of events, once he was in public school and his significant issues were on display for more people to see, diagnoses began to fall like rain, some he only had briefly and many that stuck, which now, at age 12, include sensory processing disorder, borderline intellectual function, learning disabilities, and bipolar disorder with psychotic features. Doctors took my concerns much more seriously when there were teacher reports to affirm my observations. The school did its own series of evaluations and began to offer more services. Our beloved Dr H saw Carter for about a year (and in that time helped him begin to sleep a little, God bless the man) before he transferred care to a brilliant pediatric psychiatrist who has worked hard with us to develop a medication regimen that alleviates many of Carter’s most challenging symptoms.

Often, I remember the platitudes I heard from people in those early, awful years, people telling me over and over, “You must be very strong because God only gives you as much as you can handle!” I would crumple inside when someone said that to me because I was not strong. I was dying and why could no one see that? Why would no one look at me and my wailing child and say, “Whoa, we have to do something to help this family!”

Now, I know that I am stronger, and Carter is not proof of my strength but the cause of it. Because of Carter, I had to learn to face down professionals who are not accustomed to being questioned. I had to find it in myself to challenge bureaucracies, to go over people’s heads straight to the top, to dig my fingernails into my palms and maintain a strong, calm façade, at least until I pulled my car out of the parking lot. I have said, “You have no idea what you’re talking about,” and let people dangle on the end of that statement. I’ve learned to stop following doctors’ and teachers’ orders and insist that we work together on behalf of my son. I have learned that the only thing there really is to be scared of is my son’s illness, and I don’t have the time or the energy to be afraid of anything else.


About the Author

Adrienne Jones

Adrienne Jones lives in Albuquerque with her husband and children, and in the hours just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style.

Find links to almost everything she does on the internet at about.me/AdrienneJones.

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