The Downside of Special: Parenting a Child with Special Needs

parenting-a-child-with-special-needsThe first time someone told me my son has special needs, I smiled proudly. Yes, I remember thinking, he is special: Look at that gorgeous smile—whoa! Special needs? Miss P., his nursery school teacher, watched me with a carefully neutral yet alert expression, as though she was ready for anything: tears, cursing, a handgun. My own expression, I’m sure, was blank. I really had no idea what “special needs” meant, only that it wasn’t good. I was already aware that my three-year-old was not like the other kids in his class, but I thought of him as unique, a character. He was unusually energetic—“a flight risk,” Miss P. corrected me, explaining that he had been known to bolt out of the classroom—and didn’t seem to have any awareness of being hungry or thirsty or too hot or too cold. Toilet training wasn’t happening: He hadn’t seemed to figure out when he needed to go. I thought he had his mind on bigger things: learning everything about the solar system, for instance. “We should be thinking about an IEP,” Miss P. said. An Individualized Education Plan. Here I found my voice. “But he’s so bright!” I protested. “He’s reading.” She looked at her watch. “I’d like to schedule some evaluations—get more information.” I nodded, dazed. I didn’t yet know to be cautious about letting a school choose the experts who would assess my child or how that information (and misinformation) could be used to railroad him into a special ed program. Driving home, I watched my son in the rearview mirror, and he looked the same. Yet I saw him differently; his beauty had been violated, somehow, by Miss P.’s words. But my overriding feeling was one of shame. I hadn’t heard concern in her voice (though it may well have been there), only judgment: I’d produced a problem child. At home, my husband was indignant. “He’s just a little kid. Of course he has trouble sitting in a circle! He’s probably bored.”

Coming to Terms with Your Child’s Special Needs

Our reactions were typical. “For a lot of parents, coming to terms with a child’s special needs is like going through a grief process,” says Dr. Revital Ben-Knaz, the lead psychologist at Blueballoon, a private pediatric health-care facility with four locations in Ontario that offer an extensive range of services for children with physical and developmental challenges, delays and learning disabilities. She points out that there has, in fact, been a loss: the loss of the typically developing child parents dreamed of. “For many parents, there’s denial, not really wanting to accept it, then anger and a lot of anxiety about the future: ‘How is it going to affect my life? His life?’” There’s also, for many parents, a profound sense of loneliness. You feel you’re out in the cold with your nose pressed up against the glass of normal experience, watching as your friends sail past, merrily oblivious, with their typically developing children. In some cases this becomes so painful that retreat seems the only option. “It gets more difficult, emotionally, as my daughter gets older, to hear friends say things like ‘My daughter just started ballet.’ You can’t help but compare your own child, for whom everything is a challenge,” says Rebecca, whose four-year-old has Rett syndrome, a neurological disorder that has a devastating impact on all areas of development. Most Rett girls—it is an almost exclusively female disorder—will never talk, walk or feed themselves. Rebecca continues, “Besides, what can I contribute to that conversation? ‘Dana demonstrated a protective reflex today. Isn’t that awesome?’” In other cases family and friends themselves pull away. “I’ve had to make a new circle of friends, people who accept my son,” says Sara, whose six-year-old, Cael, has Asperger’s syndrome, an autism spectrum disorder, and is both highly intelligent and socially challenged. “When your closest friends don’t invite him to their kids’ parties, it’s extremely hurtful.” A more subtle form of rejection occurs when people try to minimize your child’s issues: “I’m sure it’s just a phase. My kid went through it too.” When others deny your reality, it no longer feels safe to talk about it.

The Reality of Parenting a Child with Special Needs

The idealistic public narrative that has emerged around parenting a child with special needs is further isolating. Consider the exquisitely awkward euphemisms “exceptional” children and “special needs”—as though a disability is something to celebrate. And in movies, books and news articles, parenting these kids is often made to seem like a form of self-actualization: You’ll become a better person—more accepting, more giving—if your child has developmental challenges! In the Hollywood version, parents are ennobled by their quest to find the treatment or drug that will help, and they “learn what love really means.” No one talks much about the anger, the embarrassment, the despair—or the mind-blowing cost of treatment and the extreme difficulty of navigating the school system. All of this helps explain why parents so often feel as I did: cut off, with unacceptable emotions best kept to themselves and no clue about what to do next. When you become aware that something is “wrong” with your child, the first step is trying to figure out what, exactly, is the matter. For many, this is a years-long odyssey. It took two years of visits to specialists and invasive testing until Dana was diagnosed with Rett syndrome. For kids whose issues are less clear-cut it can take much longer. After almost five years, and at least $70,000 of unreimbursed services and assessments (not to mention private schooling), we were finally told our son has ADHD, inattentive type, as well as a sensory processing disorder and a learning disability. Pediatricians, while sympathetic, tend to pack you on your way with, if you’re lucky, a referral to a clinic that can perform an initial assessment. Wait-lists of six months to a year are the norm, not the exception; not infrequently, parents discover they’ve gone to the wrong type of specialist and have to start all over again. In the meantime, mindful of the importance of early intervention, many parents who can afford it begin paying for services—speech therapy, occupational therapy, play therapy, social skills groups—to address obvious symptoms. With a formal diagnosis there may be some limited government support, in the form of tax breaks and provincially funded services, for treatment for a few types of special needs. But allowances vary across the country, and there is often a long wait-list for therapeutic programs. In Ontario, for instance, more autistic children are on a wait-list than are actually receiving governmentally funded intensive behavioural therapy. “Children typically wait to receive autism therapy for two to five years or more—even though it’s most useful in their early years,” according to the advocacy group Autism Resolution Ontario. Financially speaking, autism is a particularly devastating diagnosis, especially for parents whose children’s cases are deemed “too mild” or “too severe” for governmentally funded services as well as for those who must wait a year or more for funding to begin. Explains clinical psychologist Dr. Joanne Cummings, of Blueballoon, “You’re looking at $50,000 a year until school starts, if the child is receiving the recommended behavioural therapy, speech therapy and occupational therapy.” Once school starts, ongoing costly therapeutic supports are required, and sometimes there’s the daunting prospect that the child may never be fully independent. The stress caused by the financial pressure alone can bring families to their knees. Even for kids with less severe diagnoses, unreimbursed expenses can be crippling. Most benefit plans max out at $500 a year for psychological services and don’t provide a cent for services like occupational therapy. “We’ve spent at least $100,000, before you factor in the cost of private school,” says Mark, father of eight-year-old Max. At 18 months Max was barely talking, and his mother, Siobhan, had already discussed Max’s low muscle tone with her pediatrician on several occasions. “I took him to a speech pathologist who was immediately concerned and sent us down the hall to developmental challenges. The looks on their faces just frightened me to death,” remembers Siobhan. “They were throwing out things like ‘Definitely looks like autism.’” The wait-list for an assessment at their regional children’s hospital was over a year long, so the couple decided, in the meantime, to seek help for the developmental delays they could see. They are well educated and comfortable financially—he is a business executive, she works in media—but by no means wealthy. And, Mark points out dryly, “all sorts of people rush to supply services and are happy to take your money.” Desperate parents are easy marks. “You end up flailing away and don’t know where to turn,” says Mark. “We were talking to private speech pathologists, osteopaths, naturopaths, developmental pediatricians, physiotherapists, occupational therapists, friends, family— everybody’s got an opinion.” Siobhan, like so many moms of kids with special needs, began spending hours on the Internet, exploring different treatments. Very quickly she went from being the proud mom of a longed-for baby to a harried researcher with a killer deadline. “My mother saw how I was phoning everybody, running around, and she said: ‘You don’t have that joie de vivre anymore. You’re not enjoying being a parent.’” The urgent need to do something, anything, to try to help your child, combined with the frustrations of navigating a fragmented health-care system where it’s every parent for herself and the squeaky wheel gets the appointment, is not a recipe for joyful parenting. Having fun and playing with your child often fall by the wayside because there’s so much work to do, so many appointments to get to and so little help. It’s easy to focus on the problems and lose sight of your child—and yourself. By the time Mark and Siobhan finally received a diagnosis last year—dyspraxia, a disorder that affects motor-skill development—they had another problem: Max was not fitting in socially at school, and “the teachers didn’t get him.” He became increasingly anxious, and his self-esteem plummeted. Siobhan was weathering “two-hour bitch sessions about Max at the school, and he was miserable. As a family we stopped having fun, just doing family things like going to pick apples.” Only now that he’s thriving in a private school for kids with special needs has Siobhan got her joie de vivre back, six and a half years later.

Understanding the Impact on Motherhood

Having a child with special needs radically changes the texture of motherhood. Like Siobhan, many moms become überresearchers, activists and tireless networkers. They radiate competence and often have a staggering wealth of knowledge about their child’s disorder. “You go from mother to case manager,” says Tess, whose child is on the autism spectrum, “and your child is your project.” Often, there’s no other option because you are consulting with a wide variety of specialists and therapists who may never even compare notes and who, not infrequently, give you conflicting advice. In a children’s hospital or mental health facility, care may be coordinated and experts may put their heads together to come up with treatment plans, but that rarely happens in the private settings in which so many children are treated. (Blueballoon, which offers interdisciplinary care and whole-child case planning, is a notable exception.) Postdiagnosis, then, many parents take on a critical function as coordinators of their children’s care and schooling, which frequently requires battling school boards and educating educators. “Many women wind up quitting their jobs or cutting back—another source of financial stress for families,” says Ben-Knaz. “It’s extremely time-consuming just taking the child to and from appointments.” And, depending on the severity of the child’s issues, there’s often homework in the form of exercises and remedial activities for the child—which your child may actively resist and resent. Love is there, fuelling your determination, but so is bloody-minded detachment, the same kind you see in personal trainers. Watching Dana scream and cry with frustration as she tries to stand up, I can’t imagine how her mother has the mental and emotional stamina to do physical therapy with her twice a day. “My dream for her is that someday she will be able to walk,” says Rebecca, a music teacher, “or tell us what she wants.” Until then, she carries Dana, who weighs 45 pounds, everywhere. “I get the stares or the pity look,” she says. “I’ve caught myself saying ‘Just one day of normal, please.’ Then I feel bad that I think that way. Because this is my daughter, and I love her.”

Coping as a Couple

The strain all this puts on a marriage can be extreme, particularly since, with many couples, the mother winds up doing most of the heavy lifting. “In our experience, the stereotypical dynamic is that the dads tend to be more lenient and nonchalant, where moms are a lot more anxious and say ‘We have to deal with this right now,’” says Ben-Knaz. If parents are not on the same page, given the other stressors in the household, it’s not pretty. When my son was in kindergarten, by 5:30 every day I would have attended school with him (for a variety of reasons his therapists and I felt that hiring a “shadow” to help him at school would not work), pawning myself off on the other kids as not just a mom but the teacher’s helper. Afterwards, he’d have an appointment or two with a therapist of some description, and I would frogmarch him through his daily gross and fine motor exercises at home, all while trying to smother my own rising sense of panic—not just about my son’s increasingly apparent behavioural and emotional difficulties but about what was happening to my own life, which was quickly narrowing down to a single point of obsession. Work was out of the question given this regimen, and in the evenings I was interviewing experts or reading thick books on developmental issues with increasingly technical titles. If my husband—who had been, from my perspective, out in the world all day enjoying adult company and intellectual stimulation—said something like “Relax, honey, you seem anxious,” chances were excellent that I would lose it. I felt I was engaged in hand-to-hand combat while he was merely bankrolling this guerrilla war on our son’s difficulties from a safe distance. This kind of gender split is common, judging by how rarely I ever saw fathers in any of the waiting rooms where I spent countless hours. “I’m lucky Mark is very hands-on,” says Siobhan, “and that’s probably one reason our marriage is still strong. But it’s not the norm.” Mark works with a man whose two children both have serious developmental issues, and says: “His wife will go on and on about her worries to Siobhan, but he just describes his kids as being a little quirky. Total denial.” “The real issue is that you’re so focused on the child that you lose the emotional connection with your husband,” says Sara, the mom whose son has Asperger’s. And, she points out, this happens at a time when you are not only exhausted but experiencing “overwhelming grief, overwhelming anger at the world—like, why was my child dealt this? And I was frustrated with my child: ‘Why can’t you do this? I’ve told you 20 times: Don’t hit, use words.’”

Dealing with Rejection From Other Parents

Once, my son had a major meltdown, raging, screaming and crying as though he were being tortured, right outside the door of the kindergarten where several parents were already agitating for his expulsion. Although he was not aggressive, he could be disruptive and was rarely compliant, and two mothers had started to shun me, refusing even to say hello. Of course, on this particular day, as my son had the most extreme and extended tantrum of his life, they were right there, watching, visibly appalled. I felt a range of emotions, but the strongest was not empathy for my sweet, complicated little boy, who was clearly in profound distress. It was embarrassment. He was making me look bad in front of this pair of ignoramuses. Why couldn’t he, just this one time, keep it together? I knew my job was to be in his corner, to keep a sense of perspective and focus only on soothing him. But I couldn’t. I wished at that moment not to be his mother, not to have to deal with this. This is another hard truth about having a child with special needs: The things that are most endearing and lovable about the child may be invisible to outsiders, while the things that are mortifying are all too visible. For a long time I couldn’t admit, even to myself, how frequently I was embarrassed by my child, particularly as he got older and was more clearly an outlier. Even at his wildly expensive private school for kids with special needs, where you’d think they’d be accustomed to this sort of thing, his Grade 4 teacher was shocked that he was still wetting his pants on a regular basis. I blushed and stammered, explaining the glitches in his neurological wiring, why he wasn’t always aware of needing to pee. I felt I was supposed to be a better person than this, but it turns out I’m not alone. “We go skating on weekends, and it’s the most painful thing in the world for me,” admits Mark, who loves sports. “Max holds himself back; he doesn’t want to fall and balancing is very difficult for him.” Siobhan adds: “I just avoid situations where I think I might be embarrassed, like get-togethers with Mark’s family, because they are not very understanding and I don’t want Max to be judged. He feeds off my anxiety. I’d say, ‘Max, you really need to behave,’ and he goes against the grain and makes a fool of himself. Then everybody’s looking at me, and it’s, ‘Can I have another glass of wine, please, to get through this?’” One mother whose son has Tourette’s syndrome told me that sometimes at the supermarket he’ll start screaming things like “Shut up, bitch” and she can feel other shoppers’ dismay—and withering judgment—and wishes the floor would open to swallow her. Sara, too, knows the feeling: she remembers being tethered to her phone when Cael was in kindergarten because she was forever being called to pick him up from school. “Once, they said, ‘We’ve had to evacuate the room—your child is throwing a chair.’ Of course the other parents think it’s because you’re a terrible mother.” One consequence of this may be that you find yourself whoring after playdates, as I did. For a long time, before we found the right school for my son, I was afraid to let him go over to other kids’ houses. What if he wet his pants or sank into one of his weird repetitive rituals? No matter, as invitations dried up after a few disastrous and apparently widely publicized outings. So I moved to plan B: convincing other parents to let their kids come over. Given that I’d been branded “A Terrible Mother,” this required a sustained campaign—I cheerily served on every school committee imaginable and ingratiated myself with the alpha moms—and then I had to provide a virtual three-ring circus of crafts, games and wholesome educational activities if a kid actually did come for a playdate in order to try to convince the other mom that a repeat visit was in order. Once, I spent an afternoon filling water balloons and baking cupcakes in anticipation of a playdate with a boy my son particularly liked. No matter: The mom cancelled at the last minute with a flimsy excuse. The sadness I felt for my son—that others didn’t see the goodness in him, only the bad—bordered on despair. Sometimes even now, when he has lots of friends and is thriving at school, I’m struck by the unkindness and ignorance of so many parents and what they’re teaching their own children about tolerance and inclusion.

The Positive Side of Parenting a Child with Special Needs

But my son is perhaps a better person for it. Tall, athletic and outgoing, he is the boy who befriends the kid who’s being picked on, the champion of the underdog. And despite my dislike of the treacly movie-of-the- week narrative, I have to admit that I, too, am a better parent because of my son’s challenges and what they demand of us. I look at some of the issues that stress out moms whose kids are typically developing—a kid who talks back or doesn’t do his homework—and know that would be a piece of cake for me. A lot of people make the mistake of judging their own or another parent’s skill via a child’s achievements, as though kids all start on a level playing field. But the truth is that the mom of a kid with special needs is akin to a professional athlete: better because she has had to work so much harder and aim higher. It’s not a form of elitism many parents would choose, given the option, but membership in the special needs club does have its privileges. There’s the pleasure you take in knowing you are a good parent—and the tremendous pride in your child’s effort, whether or not a goal is achieved (not to mention the purest form of elation if it is). And then there are the other moms who are not only admirable but hilarious, rueful and generous with their expertise and support. Many who are thrown together by circumstance develop friendships that are rich and deep precisely because commonality permits a radical form of honesty about the disappointment, sorrow and pain of parenthood, as well as its pleasures. Rebecca fondly recalls a moment from a recent benefit. “There were five Rett moms, and we could actually just talk about normal stuff—our normal—I mean. Because nobody else gets it.” Except now, perhaps: you. *Author’s name, and names of all parents and children, have been changed.

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