On November 13, 2013, a geneticist from New York University called me with information that changed my family’s life. My 16-month-old son, S., who’d shown symptoms of atypical development from birth and been tested by multiple doctors, finally had a diagnosis: a rare genetic syndrome. He is missing a tiny bit of material on one chromosome. Genes are often likened to blueprints or road maps to human development. For my son, it’s like a single step in the lengthy list of directions is missing. Without it, he has to work harder to arrive at certain milestones, like walking and talking. He has to rely on the rest of his genome, as well as his environment, to make up for what’s missing. The geneticist told me that we can’t know how the syndrome will play out in S.’s life. To help him develop motor skills and speech, to help him learn how to pinch Cheerios and put on socks, the geneticist said, “Everything that can be done, should be done.”
One call, and my husband and I were thrust into a new world. A world where health insurance, the government, specialists, and practitioners of all kinds would play roles in our son’s upbringing. A world where every available support, from assistive devices to therapies to education modifications, would be on the table. In short, the world of special needs. It was foreign. Overwhelming. Lonely.
I’ve been in this world a couple of years now, and here’s what I can say so far has helped me (and my husband) adjust to, and even embrace, our new lives here:
1. Do your research
When you receive a diagnosis, any diagnosis, terror (and a host of other reactions like denial and anger) can shut you down. And it’s easy to stay down.
I shared my son’s diagnosis with my mother shortly after I got the call. I heard her quietly repeat the numbers and letters on her end of the line: she was writing down the details. Later that night, she called me back in tears. Right after our conversation, another family member had called her to say hello. Since the diagnosis was fresh on her mind, she shared the news without asking us first. This family member, to put it plainly, freaked out. He hopped on his computer to study pictures of my son, looking for distinctive physical features (there aren’t any). Then he found a study online and read to my mother a list of related conditions as if they were a certainty (they are barely a correlation). And he declared that the rest of the family deserved to know in case another relative has the same syndrome (my son’s microdeletion is de novo, meaning, not inherited). My mother apologized to me for having spilled the beans. Only a couple hours after the geneticist’s call, my husband and I faced our first big decision: when, and what, to tell our families? We couldn’t stay down in a place of denial or terror. We had to be parents.
That very night, I researched for hours. I took myself back to high-school biology and read up on DNA. Then I used what I found to write the reactive family member a polite but firm back-off message. And I wrote a longer letter to my sisters and brothers-in-law, laying out what we’d learned about S. Years later, I’m still learning. I know a lot more about karyotyping, inheritance patterns, and variable expression than I could have predicted when studying biology years ago.
Peace of mind won’t come with a cure—there is no cure for genetic microdeletions. But some peace of mind comes with knowledge. Brave the diagnostic code and crack open the research. I found that just a little information went a long way toward demystifying the science behind the doctor’s words.
2. Stop comparing
Parents compare their children to others constantly, and parents of children with special needs are hard-wired to notice differences. We’re worried and looking for some hope, we’re confused and looking for some answers, we’re lonely and looking for some companionship.
When S. was ten months old, we brought him to the first birthday party for a friend’s son. The other children, all born around the same time, all apparently typically developing, sat on the gravel in the city backyard playing with toys and munching pizza crusts. Some crawled away from the group, others pulled up to stand against parents’ knees, and some even took tentative steps. My son lay flat on his back, because that’s all he could do. He couldn’t roll, sit up, crawl. Good-natured, he seemed happy enough, gazing up at the sky, but I couldn’t take it. I pulled him to my lap and propped up his head, rather than let him lie inert amongst his active peers. How could I not compare? The gaggle of emerging toddlers looked like the spectrum of child motor development, and our son was dragging down the average. We left early.
Comparisons to other children are inevitable. They are one—only one—useful tool to understanding your child. But know that they happen less and less as the months go by. The older my son gets, the more of his own history I have to compare him to, and the less I find myself comparing him to other children. He creates his own benchmarks: compared to last week, he is pretty handy with the carpet sweeper. Compared to a few months ago, he is talking in longer and more accurate phrases. Compared to last year, his personality is rich and funny and room filling.
Plus, children grow more complicated. What used to be simple basis of comparison—one pulls to stand and the other does not—becomes much more complex for all children, not just those with special needs. In fact, all the children in my son’s age group, and all the children I taught during my elementary school career, and all the children I’ve known through family and friends and my neighborhood, have something that requires support or strategy, some additional thought besides what constitutes a bedtime routine. From extreme fears to food allergies, prohibitive shyness to clinical depression, brain injury to benign-but-blatant birthmarks, the children I’ve known have had it all.
That brings me to the next point…
3. Normalize needs
At first, I saw S. as different from everyone, including from myself. It didn’t take me long, however, to understand the word “need” as something that applies to us all.
I have twin one-year-old sons and their needs are great right now. Those needs will change over time, become less physically demanding and more mentally challenging, but the needs will always be there. Their needs, as identical twins, could be classified as special. My husband and I make decisions about parenting the twins that we never had to with S. The very phrase “special needs,” therefore, strikes me as a little off. My son needs firm sneakers to support his feet and extra time on the stairs. No one else in his class, as far as I know, needs those things. He does not, however, need the specific chair one of his classmates uses during circle time. He doesn’t need a picture schedule. He does, like his mother, need the table top to be free of mess and the blankets to be pulled over his feet just so.
Let me be clear: I understand my son is not, in many ways, a typically developing child. On a graph, for example, the greatest number of children learn to walk during a particular time frame. Some learn earlier and some learn later. Some learn much earlier and some learn much later (S. learned much later). Some never learn and therefore need mobility assistance. And so the phrase “special needs,” which, in this case, catches those children who learn to walk much later or not at all, is useful. Children with special needs are ensured the kind of attention, accommodation, and devices that aren’t usually part of a home or classroom setting.
But I find it valuable to remember that every single child, every single human, has multiple needs. The process of learning your child’s particular needs? It’s exactly the same process that every other parent goes through.
4. Seek support
Some conditions, like autism, are widely known and extensively studied. Others, like my son’s genetic microdeletion, are rare and/or only recently discovered. In fact, the seasoned geneticist at NYU told us that our son was the first patient with this microdeletion syndrome he had ever seen. Finding another child with it in our area, even in our state, is difficult. There is a legal block too: professionals (doctors, teachers, therapists) are prohibited, rightly, from sharing information about which children have special needs. So we just lived as we had lived before diagnosis day; S. played with the kids of our friends, kids we met on the playground, kids in our apartment building. But it hit me during one play date, when a good friend of mine encouraged her daughter (the same age as S.) to count to ten in Greek, that our social life was missing a big element: shared experience.
One morning, as I was leaving my son’s preschool classroom, I ran into a fellow mother and said hello. A teacher saw the two of us and said, “I’m so happy you’re meeting!” I assumed that was because my son and this woman’s daughter play together every day. Within ten minutes, we’d noted that both our children see the school’s speech therapist. With a little more curtain drawing, we learned that our children have similar genetic syndromes. Different chromosomes, different symptoms, but both rooted in DNA. We laughed and hugged and planned a play date, as much for ourselves as for our children. I know now that the teacher, who legally couldn’t reveal why, was delighted that we two would connect and share.
My husband and I finally joined a Facebook group for parents of children with our son’s genetic syndrome. Even when we first discovered the group, we resisted it for some time. Denial, fear of what we may learn about our son’s future, even basic shyness got in the way. I’m so glad we’re in it now. With just 500 members worldwide, the group shows just how rare this particular syndrome is. But it also shows how easily we can connect to others who know what’s it like to list genome numbers and letters on health forms. Many posts are positive—new skills and achievements. Many, however, are stories of regression, alerts about emerging symptoms (seizures are a big one), frustrations over insurance, and vents about how others react to our children. Reading the posts is not always uplifting, but it does always add a page to our understanding of the syndrome. (Our group members often comment that we, collectively, know far more than any doctor or researcher.) I’ve since joined larger networks of families with children who have been diagnosed with all manner of genetic changes. The largest group I belong to has nearly 4,000 members worldwide.
5. Respond and move on
People are going to say and do things that offend you. Painful stereotypical terms linger in society. Even when they think they’re being sensitive or helpful, people say things that make your blood boil. It’s ok to be snippy. Or spit out a stock answer. Or smile because you’re taken aback. Or find yourself speechless and just walk away. It’s impossible to prepare for what everyone, everywhere, in every situation, will say to you about your child.
I most commonly hear two things. The first: “How old is he again?” The implication being that at his age, he should be doing more, sounding clearer, walking more steadily. I wish I could say that I always tell the plain truth. But sometimes, when I’m stuck an elevator, when I’m tired, when I feel protective, I shave off a couple months. And the second: “But he looks so … normal.” You get the implication on that one. Some days I don’t respond at all, and, later, cry or rage in private. Some days I get snarky: “Gosh, you look so normal too!” Some days I’m defensive: “He IS normal.” Some days I launch an argument about the word “normal” and how abnormal it is to assign such a label to anyone. But I feel best when I find the poise to say, “No one is normal. And thank goodness for that.”
Learn what your child may need, find it, and try it. There’s a lot out there, much of it inexpensive, even free, or covered by insurance.
One thing my son needed was a helmet. Very young, he developed plagiocephaly, or a flat head. Not because we positioned him the same way every night to sleep, but because he could not turn his head to the left. The helmet cost $3000 and was not usually covered by insurance. But I submitted photographs, letters from doctors, and a research packet. After all, this was not a cosmetic fix. This was critical to his being able to move his head. A few phone conversations later, I was informed that insurance would cover the cost.
On a much, much bigger scale, my husband and I were presented an education plan for our son’s preschool that had him in a self-contained special-needs classroom that services children with very different symptoms from his. We believed he would do better elsewhere, but our city didn’t offer it. For that reason, along with the fact that our growing family was becoming squeezed in our small apartment, we relocated. We couldn’t afford much, but our new apartment is in a town with a robust integrated preschool program (meaning, children with diagnosed needs attend school alongside children without). S. is thriving in his new class. (Our new apartment also has a washer and dryer, which is a huge bonus.)
I never forget the geneticist’s treatment plan: “Everything that can be done, should be done.” If we can afford it, if I can get insurance to cover it, if it’s out there and worth a try (the headphones-based listening program, the custom-made ankle braces, the stretchy lizards that strengthen fingers), we ask for it. When we met with the geneticist a week after the diagnosis call, I asked whether we could participate in a research study, so we could be informed of new information the moment it was available. The doctor said he knew of no such study. But it never hurts to ask.
7. Embrace that you’re the expert
I recently sat on a special-education parent panel, sharing insights with teachers in my son’s preschool program. One mother, who was so grateful to her son’s teachers she literally could not talk without sobbing, admitted she did not want to know the day-to-day details about her son’s progress. She told the audience, in essence: “You’re the experts. Just tell me at the end of the year if he’s ready to move on.”
While I appreciate this mother’s need to rely on her son’s teachers, her desire to be led through the confusing world of special needs, I had the opposite thought. In fact, becoming an expert is what has helped me get through this experience. I really do believe that we, the parents, are the primary experts. Not the teachers, not the surgeons, not the physical therapists, not the government officials. The parents.
I’ve been lucky enough to attend every doctor’s appointment, diagnostic test, and evaluation. I’ve observed physical therapy, occupational therapy, speech therapy, feeding therapy, music and movement classes, school-skills classes. I’ve contributed to every Early Intervention meeting and written every “About your Child” report and filled out countless questionnaires about symptoms and behavior. My husband and I helped our son practice walking, step by step, over a period of months, using language we learned in speech therapy and motivators we learned from his special educator. We’re the ones who noticed when “wa” changed to “wawa” and finally to “water,” thanks to our prompting and constant carryover from speech and feeding and exposure in school. And I’m the one who tells S. every single night that he can do anything he wants to do, even though I know it’s just a nice phrase, even though I know no child anywhere can literally do anything he wants to do.
Yes, his teachers are experts in both elementary and special ed, each therapist is highly qualified in a specific field, each doctor knows deeply about a particular practice.
But my husband and I are in the center. We hold all the information, integrating it constantly. It’s exhausting. It’s also empowering.
And with that…
8. Know that you’re a superperson (and so is your child)
I hate ads that tell me with these particular steps, habits, products, or hacks, I could and should be a better me. But as the parent of a child with special needs, I am a better me. I am better at making big decisions. I am better at maintaining my composure during intense situations. I am better at empathizing. I am better at managing expectations. I am better at celebrating. And I am better—much better—at listening.
Being better has served me well. Shortly after S. was diagnosed, I learned I was pregnant with identical twins, and that my pregnancy was high risk and would require close observation. While in my second trimester, my father-in-law collapsed. Scans showed a brain bleed, and despite “successful” surgery, he did not wake up. After two weeks, my husband’s family had to remove him from life support. Loved ones sat with him for two weeks as his body slowly passed away. Three months later, 30 weeks pregnant, I underwent an emergency C-section to deliver my babies. They spent just shy of seven weeks in the NICU. Eventually, I was able to drive them the three hours to meet my mother. Her health had been declining, and the weekend she met her seventh and eighth grandchildren, she couldn’t walk. ER doctors discovered a host of conditions, including advanced cancer of the kidney. She died nine weeks later. It had been one year, three months, 27 days since the geneticist’s call.
One afternoon in the NICU, a fellow mother watched me pull one of my babies from his isolette so I could rest him against my chest. “You do that by yourself?” she asked. “Of course!” I said, without thinking how it might offend her. But yes, of course. Sure, he was stuck with multiple IVs and sensors, and a feeding tube disappeared into his nose along with a cannula, so his tiny three-pound body was wired every which way. But I didn’t flinch. The mother told me that she hated the NICU. She hated its beeping machines and blue ultraviolent lights. She said the whole experience was foreign and terrifying, and she suspected it was damaging to her and her daughter. I didn’t admit it to her, but I was fascinated by the NICU. My babies were born ten weeks early, and I marveled that modern neonatal intensive care medicine saved their lives. I learned everything I could about their tiny bodies and the risks preemies face that older children and adults don’t. I learned what each machine did, and I learned to correct problems, like untangling the heart monitor wire so the sensor wouldn’t peel off a chest and trigger the alarm. I learned that newborns in the NICU, just like newborns at home, like to sleep in a certain position. I put photos in their isolettes. I researched. I normalized my twin sons’ needs. I felt capable. And with that capability, I felt like I could be a parent to my little ones, despite the circumstances. I was their mother and I felt like an expert and I was powerful.
S. has taught me about the human body. About its complexity. About how one tiny bit that’s changed or duplicated or missing altogether can make the whole thing falter. About how helping all the other parts do their jobs can compensate, sometimes 100%. And about how love is the most special need, and the need shared by every child, everywhere.
This morning, I sent a photo of my son to my sisters. He’s standing in our bathroom wearing his beloved construction-truck pajamas, with an overturned purple felt toy bin on his head. He was saying to me at the time, “I can’t see!” My quote to my sisters: “He is SO three years old.” One wrote back right away: “Every three-year-old looks exactly like that!” I’ve carried that statement with me all day. S. looks, acts, is, exactly like every three-year-old. Is he really like every three-year-old? No. Of course not. But is he? Yes. Of course he is. How wonderful is my son. How very, very special.