Rising to the Occasion Every Day: On Raising a Child with a Disability

By Suzi Walcott

On blogs and sites dedicated to raising children with disabilities, there is no shortage of inspiring stories of how our babies overcome tremendous odds to reach the “inchstones” that make us proud.  When a non-ambulatory child finally walks after many years of hard work, physical therapy and sheer determination, we all celebrate together.  When a non-verbal child is finally able to make her needs known somehow, we pore over every detail, hoping one day we will be able to recreate this story with our own little ones.  When a child given a limited lifespan exceeds it, we are in awe of God, our kids, and yes, even ourselves- because good care is often the difference between life and death for the medically fragile child.

Yet we know deep down that we are no different than anyone else, but that like all parents, we have risen to these occasions.  We rise to the momentous, but also to the small, to the everyday and the mundane.  The baths are harder- our kids may be resistant, or afraid, or unable to assist us and requiring specialized equipment.  Feeding can be tricky.  Some of us have kids fed through tubes, IV’s and various other devices which keep them alive but also complicate their lives, as well as our own.   For some of us, we’ve had to figure out alternatives for seating at home and away from home…sleeping arrangements…child care.  Everything is different, everything has an added layer of complication.  Trips and vacations often simply cannot happen.  Travel needs to be arranged months in advance.  Even going to church or to a restaurant as a family presents extra issues which can often seem insurmountable.  How do you change a nine year olds diaper in a restaurant ladies room, for instance?  Infant changing tables are too small and the floor is too dirty…I could go on and on, but the idea is clear.

Though the blogs like to highlight the highs, the lows are just as important and worthy of mention.  My seven year old loves music.  She doesn’t speak, but she is able to hum tunes in fairly good pitch.  Sometimes, when music really excites her, she screams in delight.  Screaming and humming, as well as other vocalizations, is quite simply how my daughter communicates and interacts with the world.  In the absence of speech, she has these methods.

Yet, one day her inclusion music teacher had asked that she be removed from music class for singing along with the other children.  Her noises, the woman opined, were a distraction and were impeding the education of the other students.

Needless to say I went all the way to the top on this one- contacting the principal of the school. She was allowed back in class and such an incident never happened again.  But the hurt still remains; it’s one of the salient low points.  I’ve had many, and some have been life or death situations.  Surgeries, respiratory emergencies caused by flu and infection.  How then is this possibly a significant low point for me after what I’ve been through?  Because this simple act of removing my child in the midst of her enjoyment, denied both her equality and her humanity.  It denied her access to one of the few things that bring her joy, and that she does well, like the other kids do.

The highs are beautiful, and inspiring, and sublime.  The lows are unspeakable.  But just as you never know when the highs will grace your life, you cannot protect yourself or your child from the lows.  You don’t know if the next person you see will glare at you, or scoff at your child, or refuse to help her through a door.  You don’t know if the next bus driver will drive past your stop because he doesn’t want to take an extra five minutes to secure a wheelchair.  You don’t know if the next customer service rep will be someone who rolls their eyes at your struggle.

All you can do is pray that you will have the strength and the grace to keep loving everyone around you even when those things happen.  All you can do is to continue to believe that the world is good, and to continue to believe that your child is good, that your child is worthy.  All you can do is to remind yourself that your child is not her disability, and that you are not just a parent of a special needs child.  You are a complex, imperfect, lovable human being.

If you’ve done that as a parent of a child with disabilities, you have done well.

Suzi Walcott is a pediatric home health care nurse who specializes in working with children with disabilities.  She is married with two daughters and one on the way.  Her elder daughter is nine years old and has multiple disabilities and medical conditions.  The younger one is almost six years old and is typically developing but born with visual challenges.  Her contributions will examine the tests and triumphs of raising biracial children, specifically girls, with disabilities.

Photo courtesy of Mo via Flickr

Political Parenting

Yesterday, my daughter told me she wanted to celebrate Kwanzaa. I immediately felt bad; she certainly hadn’t gotten the idea about celebrating Kwanzaa from my husband or myself, and we live in an overwhelmingly white suburb of Northern California. When I asked her where she learned about Kwanzaa, she said, “school.” Which floored me because this school is no where near a bastion of intercultural understanding or learning.

In any case – I told her we would need to get a kinara, to which she informed me it was called a menorah. I laughed, and then told her she was confusing Hanukkah with Kwanzaa, with the former being a Jewish tradition and the latter a Black tradition. She didn’t really care too much, but just wanted to implement something she’d learned about in school.

So I said, yes, we can celebrate, but in my post-Christmas shopping yesterday, I forgot to pick up a kinara, and similarly today got away from me. My husband came up with the brilliant plan to find a Kwanzaa app for the iPad, and alas, I found one! So we’ll be lighting virtual candles and discussing the seven principles.


In the last week or so, I’ve been thinking a lot about my approach to parenting, especially given the response to last week’s post. In writing about what I am keeping away from my daughter (and my sons), I came to a better understanding of why I parent the way that I do. Why am I celebrating Kwanzaa when it something I’ve never celebrated in the past? Because I want to encourage curiosity and exploration. Because I don’t want my child to believe as I do simply because I’m her mother. So I want to engage in celebration of what is a new cultural tradition because my children are not robots or mini-mes. They have their own thoughts, and sometimes they need me to bring those thoughts to fruition. It’s not just about them; it’s about the kind of people I want them to be – loving, generous, thoughtful, engaged.

In a conversation on Facebook, a friend pointed out the obvious, but the rarely articulated: “All parenting is political.”

Continue reading “Political Parenting”

What We Shouldn’t Tell Our Children About the Trayvon Martin Verdict

 — written by my sista Salina Gray

I’ M saddened and actually surprised by the number of people who carry such FEAR and worry into their parenting. And what’s most tragic is that they’re giving it to their children … And even other peoples’ children. I think perspective and rational thinking are crucial when you’re responsible for the welfare of a child.

Please stop telling your children what a bad and dangerous place the world is.

Please stop telling them that everybody hates
them because they’re Black.

Please stop telling them that random non-Black folk are hunting them down in the streets and killing them. It’ s just not true.

Trust if we did a RIGOROUS and ACCURATE data analysis and reporting of the results (here in the U.S) the numbers would show that it is NOT ‘open season’ on Black people as I KEEP seeing people say.

And please stop telling each other that Black boys ‘aren’t safe anywhere.’

And stop telling them that George Zimmermans’ acquittal means that their lives don’t have value. Trayvon’s life had value. Oscar’s life had value. No matter what Mehserle, Zimmerman or their supporters think. The decision of these 6 women, the defense, hell the whole judicial system in Florida does NOT determine the value of our babies’ lives. Sorry. I will NOT accept or perpetuate that narrative.

Tell them instead about the centuries old diseases called White Supremacy and racism. Tell them about the origin of this race and color mythology. Talk with them about their manifestations and impact on every facet of our lives and the importance of eradicating them, creating a world where No group is stereotyped, mistreated, marginalized, oppressed or abused.

EMPOWER them with self confidence, compassion, empathy and courage.


Stop w/the wimpy cowardly parenting already. That shit is way unhelpful. And it is NOT how the Ancestors who lived, fought, bled and died to be recognized as human got down.

Perspective based on actual data not just personal experience, anecdotes, anomalies, and what the media portrays is necessary.

We need to raise Warriors.
That won’ t be accomplished by instilling fear, doubt, and worry.

I learned a LOT interacting with OG (as in Original Gangsta) parents. Even in the midst of gangland, they raises their babies to be SOLDIERS: proud, reppin their set, their block, their hood and their flag to the FULLEST. EVEN in the midst of their enemies.

I apply that same mentality to my parenting and teaching.

If my analogy is lost on you and you dont understand where Im coming from… Ill say it this way:

in the Spirit of Malcolm, Ella, Yaa, Fannie Lou, Arundhati, Lolita Lebron, and the countless who have committed their lives to the struggle… EMPOWER your babies. Give them HOPE and not hopelessness…


Childhood Independence and Child Murder

A few weeks ago, my son asked for permission to walk around the neighborhood by himself.

When pressed for details about where he wanted to go, he couldn’t state his planned route, and couldn’t name the streets and avenues he would be walking.  I encouraged him to lower his sights from taking a stroll around the block to just walking to the corner, crossing the street by himself, going to the next corner, and coming back home.

Even this abbreviated route gave me pause. I live in a very busy section of Harlem. My teenage daughter goes out alone with her friends, but my son, at 10, is not nearly as street-savvy as she is.

But I let my son go on his excursion. The joy on his face when he returned, safely, was palpable.

“I did it!” he shouted.

The illusion of independence fell with the news of Leiby Kletzky, the 8-year-old Brooklyn child who was murdered and dismembered by a stranger the first time his parents let him walk home alone from summer camp. My son greeted me with the news when I came home from work:

“Mommy, a boy my age was taken and killed.”

My son knew all the details of the case. He even compared it to the case of Etan Patz. A family friend, Lisa Cohen, wrote the book After Etan, about the abduction and murder of 6-year-old Etan Patz in New York City in the 1970s. My son learned of the Patz case through Cohen’s book. Two cases, a generation apart, sharing eerily similar details.

My son made the connection.

“Guess I can’t go out by myself anymore,” he said.

My son is two years older than Kletzky and four years older than Patz, but he sees the two little boys as “his age.” As a mom, it’s hard not to hear a story about an abducted and murdered child and not think of your own.

Cohen wrote an op-ed for the New York Daily News, in which she encouraged parents not to change their parenting solely because of the Kletzky case. Because I know Cohen not just as a writer and filmmaker, but as a caring mom, I spent a few days thinking about her op-ed. I thought about how scary news stories about child murder help parents explain “stranger danger” and many other evils.

When I was in middle school, an old perv in the apartment across the street from my bus stop would shake his penis out his front window at us schoolgirls waiting for the morning bus. We told our parents, and for a few weeks, our dads waited with us for the bus. But we had to keep taking the bus to school. We had to learn how to deal with it – and to stop looking.

And so I decided Cohen was right. Kletzky’s death, though tragic, was no reason to stop letting my son go out alone in the neighborhood. I talked to my son about not living in fear. But I also decided he needed to know his surroundings better.

Now, I make him listen to and repeat subway announcements. I point out to him the subway express and local stops. I grill him on neighborhood landmarks. I have told him how to know when he is facing north (uptown) and south (downtown).

Recently, I let him go to the neighborhood drugstore by himself. I made sure  he knew what to buy, reminded him to count his change, and gave him responses to some basic “what to do if” scenarios. I was nervous until he came back safely, with correct change and no horrible experiences to report.

It’s too soon to let him go completely. He admits he’s not ready to take public transportation by himself. We have time to prepare.

The best we can do as parents is arm our children with information and the tools to develop good judgment. We have to teach them to be responsible, and ready them for independence. We can’t always protect them from the consequences of their choices.

And we can’t destroy ourselves with guilt if the bad thing we are afraid might happen, actually does happen.

Do Black Mothers Raise Daughters, Love Sons?

I’ve seen and heard the saying, “black mothers raise their daughters and love their sons” repeated enough to know that some people actually feel this way. Sonja Norwood, mother of Brandy and Ray-J, even weighed in on the question for Essence last year.

My 14-year-old daughter has accused me, on many occasions (usually when being denied something she wants), of liking her little brother better, or loving him more. I would be lying if I said I never treated them differently. I never thought that saying applied to me, though, because I think that I treat each of my children in accordance with their particular needs. 

But a recent conversation with a woman I know gave me pause. My friend admitted that she does more for her son than her daughter “because he needs more from me.” She asserted that her girl is more self-sufficient, more reliable than her son, even though he is older, and that her son “needs her more.”

That may be true. But is it fair?

Maybe girls are just more responsible than boys, period. My daughter is more responsible than my son, but I assumed it was mostly due to their age difference. My daughter is almost 5 years older than my son. She’ll be a freshman in high school in the fall, and he’ll just be entering 5th grade.

Truthfully, my daughter was more responsible at 10 than my son is now. For instance, at 10, my daughter started riding the public bus to school by herself. She had paid close attention to how we got from point A to point B on the buses and subways. She didn’t need instructions on how to get to school. She needed instruction on how to avoid trouble on the bus. I told her, “Sit near an older black lady, in the front. She’ll make sure nobody messes with you.”

My son, however, freaked out the one time I thought I would have to put him on the public bus to go to school. His school bus didn’t show up, and I couldn’t take him to school because I had an early morning meeting. It’s a straight shot from our house to his school on the nearest MTA bus, just as it was for my daughter. I told him all of this.

He cried.

“I’m not ready!” he shrieked. I sent him to school in a taxi instead.

Because my daughter is more responsible than her brother, I expect her to be responsible all the time. When she’s irresponsible, I get angry because “she should know better!” When my son is irresponsible, I chalk it up to his immaturity. When my daughter is petulant, whiny, tantrum-prone and defiant, I can’t stand it. When my son acts that way – well, he’s still a little boy. My daughter feels and deeply resents the difference.

My daughter says I “baby” my son and that I “forced” her to do more at his age than I force her to do. I deny it. But maybe it’s true. I admit I sometimes forget she’s still a kid. Or that I, too, can be petulant, whiny, pouty and tantrum-prone. Maybe my standards for her are a little higher than they are for him. That’s a balance I need to evaluate and correct if necesary.

I don’t think I “raise” my daughter and “love” my son. I do make distinctions between them based on their age, what I perceive to be their respective level of maturity, and their personalities. I think it would be unfair if I did anything else.

I check myself to make sure I give them equal time and affection. And as my son approaches his 10th birthday, I am giving him more responsibilities, such as household chores. He is fast approaching his teens, and I know it’s time to stop treating him like the baby of the family.

Still, I suspect there always will be an imbalance of some sort. Imbalance doesn’t have to mean unequal or unfair. The burden is on me to make sure that even if I’m not treating them the same, that I am nonetheless being fair.

dream on, dreamer

Over at my personal blog, I’ve been blogging about how I’ll be turning 30 in 15 days. I’ve been blogging about how that feels like a huge milestone for me. How I never imagined I’d get to thirty. How I hardly ever really imagine, or dream, about the future at all.

When I realized this, that I don’t truly dream about the future, I was sad. I felt like I was missing out on something that most people love about life – the ability to dream big, work toward that dream, and (hopefully) get there one day. I thought about why I don’t do that.

Continue reading “dream on, dreamer”

Careless Whispers

The sound of her fingertips was staccato on the keyboard and the breathless muttering was barely audible over the tapping
“…stupid…Ugh! Not again!…”
tap tap tap tap tap
“G, you are such an idiot!”

“Excuse me”
She looked up, a little exasperated at the intrusion. her eyes wanted to know why I interrupted but her mouth didn’t move.
“Would you let someone else do that?”
“Call you stupid” And I took a sip of coffee, waiting for the answer that I already knew.
She was adamant. “Of course not!”
“Then why is it OK for you to do it?”

And so began my conversation with a co-worker about negative self talk. So often we are unaware of the things that we say to ourselves. She might not have been made aware if I hadn’t listened to her go on and on as we temporarily shared an office.
“I didn’t realize I’d been talking out loud, that was the running commentary in my head…just pointing out my own mistakes, so that I can fix them and improve.”

Many of us would never smoke, knowing the damage it can do to our bodies. We protect ourselves from physical harm and try to make choices that are positive & beneficial…for ourselves and for our children.

Think of negative self talk  as second-hand smoke. We’d never let a co-worker criticize us so blatantly, calling names and making personal judgements. But somehow it’s alright to criticize ourselves and use words that we wouldn’t tolerate from others. Just as second-hand smoke gets into our lungs and weakens them, those cutting words get into our heads and feed doubts and insecurities. The damage may not be as acute as with smoking directly but the lungs are never the same.

Keep A Child Alive

Today is World AIDS Day

It is a day devoted to raising awareness for the global HIV/AIDS epidemic. It is a day when we reflect on those who have died and those who live with this virus and this disease. It is a day or sorrow for many… as is every day for those suffering with the virus.

It is a day most of us should be grateful… as most of us do not have children who are infected with HIV. Most of us do not have HIV/AIDS so we don’t worry about who will care for our children when we are gone. Most of us don’t even know someone up close and personally who lives with the virus. We should be grateful to be so unaffected.

At the same time, we cannot forget all of the mothers around the globe who ARE affected and infected. We cannot forget the 14.2 million children who have been made orphans by HIV/AIDS. We cannot forget the mothers ravaged by depression because they birthed HIV+ children. We cannot forget the efforts made by a few to curb the spread of HIV/AIDS with a few simple pills a day.

We cannot forget every mother around the world who wants nothing more than what most of us have: happy, healthy, disease-free children.

I have HIV+ friends. I’ve lost HIV+ loved ones. I’ve worked with HIV+ clientele, also mentally ill and/or homeless. I watched my own mother become heavily involved in AIDS organization after she lost her best friend in the 80s. Her work inspired me as I hope to inspire my son. I want him to be compassionate to the plight of other children. I want him to grow up with a passion in him to DO something. My son is among a generation born with no knowledge of a time without AIDS.

I can only hope his generation puts an end to it.



Save the Drama for Your Mama

I’m starting to believe that I must have budding musicians/artists/actors on my hands. Because if I don’t, I’m a little…worried. See, my children have what some may call a flair for the dramatic. EVERYTHING in my home has a taste of drama.

“What’s drama?” asked my almost-five year old. “When you take something that’s a little deal, and make it into a great big deal,” I replied. And for my children, the time it takes to go from “little” to “big” is no time at all.

Take putting on their jackets. Both are adept at this seemingly mundane task. Particularly at holding the sleeve of their shirt in their hand, putting one arm in the jacket sleeve, reaching behind them, and repeating with the other arm. Little deal, right?

Not in my house. As soon as the idea of putting on the jacket has been planted in their heads, the drama begins. “But I don’t know where my jacket IS!” It’s in the same place it always is – either where you left it last, or hanging in the closet. Look for it. “Uhh, ohh, eww, ohh, ohhh, ummm…..I NEED HELP!” Doing what? We do this multiple times a day. Maybe if you weren’t leaned over the couch and actually standing up, the process of getting the jacket on would be easier. And all that moaning and groaning you are doing is wasting energy. *Now in almost perfect unison, but not quite so it’s really just noise* “Mommy, can you zip me up?” Sure. I start with one. Then the other asks the same exact question, standing right next to me. Do they need glasses? Can’t they see that I’m still zipping the other up? “But Mommy, I didn’t want you to zip it ALL THE WAY! Ohhh…..!”


The head teacher at the preschool has something new to tell me every week about my almost-five year old, something we need to work on. He sings to himself constantly; he always has a little ditty going. I tell him to be quiet, and he acknowledges he hears me, but the ditty is so unconscious, he’s right back at in in no time flat. He appears to be in his own world, but a world of drama in which other people exist, but as props for him. He wanders aimlessly, bumping into things and people. He touches everyone, leaning his whole body weight into them. “But Mommy…” is his favorite phrase as his head leads his body into my body. A sense of helplessness has overcome him lately.


My three year old yells. And yells. And when put in time out for yelling, she yells, “But I won’t do it anymore!” And when she’s not yelling, she’s expressing her undying love for you. Back and forth it goes with this child, who at one moment is crying because she didn’t get to say goodbye to Daddy before he left for work, but at the next moment is yelling about how I shouldn’t tell her to sit and eat her food because she doesn’t like when I say that to her. And after the time out that comes from that, she’s crawling all over me so she can kiss me and say, “Mommy, I love you.”


The crazy thing is that a lot of this drama, other people don’t see. I ask their other caregivers if the dramatics are as deep as they are at home, and other people say not quite. It seems the drama is saved for home, for me, and I don’t know what to make of it. Is home where the social experiment of raising children happens, and the only way you know if you are doing right is how they act on the “outside”? Are children supposed to act crazy at home, getting it out of their systems, abusing the ones they know love them most, and putting their best sides forward when out in the street? I certainly hope so, for that’s the only way I will survive this. At least 15 more years? Talk about needing help…

Compassionate Children

Today I was fortunate to attend a talk by his Holiness, the Dalai Lama.

In a giant stadium of thousands, his entrance evoked a cessation of all sound, as we stood to greet him. I was shocked to tears by the immediate silence. A profound peace fell across the space as we watched him walk toward the stage, and turn, hands together at heart center as he bowed in acknowledgement. Way up in the nose bleed we couldn’t hear him, but my sis and I returned the greeting of Namaste…the God in me honors the God in you…

In that moment whatever sorrow, malcontent, and even flippant, casual dialogue evaporated. In that moment I felt stillness, peace, and as odd as it must sound, I felt the love he had for each and everyone of us in that room. A moment of transfiguration…of being seen as more than just flesh and bones.

A glorious moment actually. And again the tears came. They were my exhale. My sigh of relief. My acceptance of the love. In that moment, I wanted to be nice, to sing, to hug, and hold, and comfort perfect strangers.  My soul awash in the KNOWING that we are all ONE. Connected beings interdependent and independent.   I felt invincible, indefatigable, and dare I say BEAUTIFUL!

I couldn’t help but wonder how I greet my son each morning. I couldn’t help but wonder how I greet children I pass on the street- especially those engaging in “inappropriate” behavior…  I shuddered knowing that on a “good” day, I’m radiant and light and loving. On those days, where my heart is burdened, when my mind is cluttered with the stresses and strains of living – my words can be toxic- imbued with anger, frustration, and judgement…

We aspire to raise compassionate Children, even at our most despicable parent moments… I have no doubt. Yet I’m more and more convinced that we must CONSTANTLY and CONSISTENTLY model loving kindness, being free from judgement, speaking in non-violent, kind ways, and being gentle. Our children are watching us. They learn from the example we set- the way we treat them, others, and even ourselves…

Whatever our spiritual, religious, political, or metaphysical proclivity…. I can almost guarantee that there are fundamental tenents that include something about kindness, love, mercy, justice, and patience…

Imagine if we were able to inspire in our children what our venerated leaders, teachers, and guides inspire in us….

Just a thought.