Expanding the circle of “us”

You don’t know how it feels to be me.” Tom Petty

Community is a wonderful thing, a place where we feel a deep sense of belonging, a place where we feel seen.  The special needs parenting community has been particularly healing for me. Connecting with people who understand my challenges, my fears and my anger releases or lightens those very same emotions simply through the act of having them observed and acknowledged by someone who I believe understands them. Realizing that instead of just a “me” there is an “us” is a true blessing.

The trouble is that with every “us” there comes a “them.” By finding comfort and community with those who understand what it’s like to be me, I’ve been drawing a ring around the “us.” While I’m not exactly banishing folks who haven’t shared my experience to the space outside of the circle, I’m unconsciously not including them.

This weekend I was on a meditation retreat with the Buddhist nun and wonderful teacher Pema Chödrön. At certain points throughout the weekend, she invited questions from the audience. An audience that I realize now I saw as “them.” People approached the mic, shared their stories, sought advice. People who had no idea about my particular flavor of pain, but who clearly had their own: addictions, abuse, trauma, violence, isolation. It was impossible to not expand my circle to include them in “us.” Our pain is all the same, Pema pointed out. Only the storylines differ.

When I am in pain, I feel isolated, cut off and invisible. Why would I want to inflict that pain on someone else? It struck me that placing someone outside my circle was an act of aggression, of causing that very same pain. It’s a little embarrassing and ironic for a person who declares she wants everyone to be included.

“How did I get so lucky to have my heart awakened to others and their suffering?”

–Pema Chödrön

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Plate techtonics

I’m on shaky ground this week, dizzy and disoriented. I can’t find a linear thread here so I toss out all these puzzle pieces hoping to make a coherent picture in the end.

Last week I jealously listened to a couple of parents on a panel share their memories of receiving their children’s diagnosis of a particular genetic syndrome before or at birth. Their stories triggered memories of my own years of confusion and worry when my child with medical, cognitive and developmental special needs had no diagnosis or prognosis, only assurances to wait and see. Nothing like their experience of having rock solid information, a roadmap, a sense of place even.

Chronic limbo left me unmoored during those years. I had two mental tapes, the public one which chanted “he’s fine, he’s doing great, wait and see, he’ll catch up” in unison with the therapists and teachers around me, and the private one, darkly creative, the one that read or heard about the worst cases of horrible care and outcomes for adults with disabilities and inserted my gentle, vulnerable son’s image into each one.

In the special needs parenting world, talk often turns to the need for acceptance. Accepting our children, accepting our challenges, accepting reality on a very basic level to simply exist helps us meet it with wisdom and discernment instead of running away from it in fear or kicking it away in anger. Without a clear sense of what was actually going on, acceptance was elusive for me. Acceptance and proper diagnosis, at least in my experience, were connected, and one couldn’t come without the other.

A few years ago my son was given a label, a diagnosis based on the appearance of his symptoms. The mothers on last week’s panel talked about how they both remembered the exact moment they receive their child’s diagnoses–where they were, what they smelled, what song was playing on the radio when the call came in or the information was revealed.  Our diagnosis was never like that. It just evolved over time based on new symptoms as they appeared, a name of a syndrome followed by a question mark which faded over time until it was nearly invisible.  It wasn’t a perfect match, but simply getting a label enabled me to get unstuck and move toward acceptance and advocacy. With the diagnosis came a whole new tribe of folks to talk to, new access to research, to resources. It felt good to stand on ground that wasn’t exactly solid, but swayed just gently and rhythmically enough to make it look like I was dancing.

A few moments spent on the website of a genetic syndrome support group this week brings me face-to-face with photos of a boy who could be my son’s identical twin. The same eyes, the same jaw, the same nose, even the same expression. Another click of the mouse and there’s another one. Brothers from another mother. With a deep sense of knowing, like cylinders in a lock clicking into place, I see my child in the list of symptoms where only a year ago I could see no strong resemblance. It’s hard to explain how. New symptoms have appeared, new behaviors have been identified. But this is not our genetic syndrome, not our diagnosis. A different one, a rarer one, with a whole new set of symptoms, a whole new tribe, a whole new language, a whole different place altogether.

And the ground begins to shake yet again.

Reading: My Baby Rides the Short Bus

As a parent of a child with special needs, I often shy away from memoirs and auto-biographies of self-advocates and family members.  I know I should want to be more informed, but after a day of IEP meetings, behavior plan implementation and toilet training, I tell myself that I simply can’t find the energy, let alone the time, to immerse myself in someone else’s experience. If I’m completely honest with myself, I must admit that as someone who hasn’t gotten her own story straight on what it means to be a parent of a child with special needs, I can feel guilty or inadequate when reading how some other parent has gleaned insights and found acceptance where I still struggle.

So it was with some trepidation that I learned I would be required to read just such a book for a developmental disability class I’m taking. We were allowed to pick the book, so I chose My Baby Rides the Short Bus: The unabashedly human experience of raising kids with disabilities for our assignment; I remembered hearing from several other parents that it was good, but had never gotten around to reading it for the reasons mentioned above. As an anthology of essays, it might be easier to dip in and out of it between loads of laundry and calls to doctors and state agencies.

My trepidation disappeared in the first page. Assembling thirty-eight stories from “non-conformist” parents “on the fringe of the fringe,” the anthology’s editors expressly collected voices representing a diversity of class, gender, race and struggle; I knew this wouldn’t be the usual special needs parenting book. The authors “range from a Burmese mother overcoming her own physical disability as she works through her son’s challenges, to a lesbian minister who becomes a foster parent and advocate of a developmentally delayed teenager not much younger than she is, and a ‘quirky’ single mama who quit school at the age of sixteen, yet successfully took on her son’s school system to find an accessible placement that accommodated his cerebral palsy.”

Quickly I found my first question: Is there such a thing as a universal experience of parenting a special needs child? More questions quickly followed: Is there such a thing as non-conformist special needs parenting? Aren’t we all a little (or a lot) on the outside already? I got curious to see what themes would repeat within the essays and which voices would stand out as different.

The essays are brash, funny, outraged and outrageous, heartbreaking, disturbing—sometimes all at once. Reading Kathy Bricetti’s “A Bus(wo)man’s Holiday” about her experience working as a school psychologist while parenting a child with Asperger’s Syndrome, I was reminded how many of the school professionals and other experts we so eagerly mistrust are themselves parents of children with special needs doing their best in an imperfect system. Sharis Ingram told what could easily be my story in “What I Said, and What I Didn’t Say.” She recounts the evening she was invited to speak to social work grad students and all the many things she felt so compelled to share about her experience that she ran far over her allotted time; I often feel that same sensation as I participate as one of two parent voices in this developmental disability class. Some essays offer simply a glimpse into a sliver of someone else’s world, like Jennifer Byde Myers recanting of the challenge of writing an honest-but-not-scary ad for a childcare sitter in “No Use in Crying.”

As soon as I began to assemble a unifying theme to the book, I would read one more essay and it would prove the exception to my rule. It became clear pretty quickly that the authors, while united in the label of being parents of children with special needs, were not sharing the same experience. For example, many authors write about their struggle to connect with their child, and how their family provides the child with a sense of belonging. Then along comes Andrea Winninghoff’s “Interpreting the Signs,” the story of how she, a young, poor, single, hearing mother, after years of trying to keep her son close, releases him to his Deaf culture and lets him attend a residential school. “As he becomes older and more complex person, I am afraid that the nuances of his culture will escape me. The fear that breaks my heart is that because I found the strength to love him enough to let him go find himself in the freedom of his own world, he may never come back home to mine.”

Many of the authors write about feeling judged by other parents of typically developing children. Some feel judged by the healthcare and education systems or by their friends or family, but most often by strangers in public. I begin to assume that because of our experience of being constantly judged, we should be a fairly tolerant bunch. Not so! Amber Taylor, in “’Because He’s Retarded, Ass!’” writes about her experience of tension and backlash in support groups when the other parents learn that she became a mother through adoption, as though her “choice” to adopt a child with special needs negates her experiences and challenges. Again, no universal theme appears, at least for me.

This sense of feeling judged that permeates the book is often expressed as being offended by the word choices of others. Several authors write about how much they dislike when people use a particular platitude, like “I don’t know how you do it,” and yet many express that they think the very same thing when thinking of a parent with a child whose needs are greater than theirs. In “Jackpot!” Amy Saxon Bosworth writes about how people tell special needs parents “what a present they’ve received, what a strong person they must be to have been given such a magnificent gift, like you won some disabled kid lotto.” But then in Christy Everett’s essay, “A View through the Woods,” we are reminded that we could have been those strangers staring at us and our kids and saying the wrong things if things had been different. “To the Woman Who Stares and Looks Away,” she writes, “I’m no different from you, not really. I wasn’t born to do this, not chosen because of my wealth of compassion, patience, or grace. I looked away once, just like you.”

I think the strength of the anthology is this complexity, this lack of unifying theme or concrete answers. The editors do organize the book into loose chapters that parallel the rather inevitable journey from diagnosis, to navigating the system, finding validation, and community support and transition. But what the collection captures is not just a diversity of parents or experience, but a depth of emotion, and by providing a space for the writers to be raw and honest—sometimes so much so that we want to turn away—they are letting all of us feel less ashamed of the breadth and depth of our own feelings.

“This is what love looks like,” Andrea S. Givens ends the last essay. No single entry could have painted a complete picture, but together they do create something that is rich, complex and worth looking at.

My Baby Rides the Short Bus: The unabashedly human experience of raising kids with disabilities. Edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot

If any of the authors happen by some chance to find their way to this blog entry and have links to more of their work–please plug away in the comments below. And thank you for writing!

Scene from a breakfast table

INT. AT A BREAKFAST TABLE – MID-MORNING

The table is set for four although only two people sit at the table — an energetic seven-year-old DAUGHTER and a slightly groggy and disheveled woman, her MOTHER. At the two other place settings, a full but untouched bowl and a cup of obviously cold coffee sit opposite a rather messy, half-eaten dish of food.

Off-camera, a boy and a man are heard upstairs in the bathroom, where Week 8 of an Intensive Potty Training Siege is under way. Strains of Angry Birds and Thomas the Tank Engine spill down the stairs.

DAUGHTER

(With a maturity completely out of character, perhaps intending to distract her mother from the fact that she has covered her oatmeal in a vast quantity of brown sugar.)

So, Mother, what are you studying these days when you go to Children’s Hospital? (Takes more coconut flakes. And some raisins.) Like, are you studying to be a physical therapist, or an assistant doctor?

MOTHER

(voiceover, as she chews a bite excessively thoroughly)

Oh crap, oh crap, oh crap. Teachable moment approaching at 100 mph. Do I take it? WTF, why not. We saw the movie “A Dolphin’s Tale” this week and I think I did a good job teaching her about physical disabilities. I think I can handle taking this to the next level. Let’s do this!

(Aloud in a deceptively unaffected voice.)

Well, I’m actually studying kids who have something called developmental disabilities. Do you know what that is?

DAUGHTER

Oh, you’re studying Brother? Are you learning how to take care of him?

MOTHER

(Voiceover, completely freaking out but managing to act cool.)

What? How does she know? I’ve barely been able to refer to him as having a developmental disability to myself. I don’t even think I’ve ever used that term in front her her. Damn kids, they repeat everything. Shit, I have to stop cursing. OK, calm down. This is it! You’re going to have The Talk! Stay cool. What did the books say to do? Oh yeah, I never found those books.

 (aloud)

Well, actually, I’m studying in a class of people who are doctors and nurses and physical therapists and people like that who want to learn how to take care of kids like him. They’ve invited me to study with them because they want to hear what it’s like to be a parent of a kid with a developmental disability….They ask me about you, too. They want to know what it’s like for brothers and sisters of kids with developmental disabilities. Maybe you could come to class with me some day and they could talk to you. (Pause.) What would you tell them?

DAUGHTER

(Without hesitation)

That’s it’s hard to get my parents’ attention because they’re so busy with Brother.

 (She glances to get reassurance from her mom as she realizes that she might be saying something that’s not good.)

MOTHER

(Sips her coffee, nodding in agreement. Voiceover)

Oh crap, she noticed. OK, just acknowledge her reality, don’t try to fix it. Let her talk.

DAUGHTER

Because he needs a lot of help doing things, and he’s active and moves around a lot. And I help him, too.

(Though she has been speaking at a rapid clip, it’s clear she feels she has crossed a line and somehow betrayed her brother to the imaginary group she is talking to and begins to backpedal.)

I mean, he helps me and I help him. We teach each other stuff. I teach him things he needs to learn, like the alphabet and counting.

 MOTHER

What does he teach you?

 DAUGHTER

He teaches me that he’s been learning things at school. It makes me feel good to know that he’s learning things and growing.

(With a certain amount of surprised realization)

 Being a sister of a person with a developmental disability actually makes you feel pretty special.

MOTHER turns her head to hide her smile and watery eyes. She wants to cheer and hug her daughter; she realizes that the conversation went so well that if it was scripted it would seem fake. But she is acutely aware of the danger in praising her too much at this moment; she fears that she will condition her daughter to be self-sacrificing and ultimately resentful, which she desperately wants to avoid.

DAUGHTER too decides that that’s about all she can handle, and asks if she can have more coconut flakes on her oatmeal. Her day continues as if this conversation has never happened.

What do you do all day?

Not too long ago I ran into an acquaintance. We were getting caught up on things and I told him how I had sold my business a year ago so that I could focus on my child’s needs full-time. “But doesn’t he go to school all day?” he asked. “What do you do all day?” he wanted to know. Resisting the urge to punch him in the nose, I put on my best smile and said, “Oh, you know, this and that. It’s a full-time job.” I knew he’d never get it, so I let it drop.

Last Thursday, September 29, 2011, I decided to keep track of my activities and tasks related to having a child with special needs. These are only the things related to the “special needs” part of our lives; I didn’t include the time I spent with my daughter, or grocery shopping, or dropping off a carload of stuff at Goodwill. I squeezed those things into the blank spaces between the stuff below. I think I was too busy to capture every single thing but in general here’s what made it onto the list:

6:30 Wake my son. Hand-over-hand assistance getting him dressed, bringing him to the bathroom, giving meds, bringing him downstairs for breakfast.

7:00 Eat breakfast, physically or verbally prompting him about every 30 seconds to sit down, use his spoon or napkin, take a bite, clear his plate, interspersed with a request to sit on the potty; assist hand-over-hand with brushing teeth, putting on shoes/coat/backpack.

7:40 Wait outside for school bus. After five minutes scramble to get husband to walk daughter to school, because she will be late.

8:00 Call School Transportation to find out why bus is late. “She’ll be there in five minutes.”

8:15 Bus arrives. Smile at bus driver and commiserate on traffic while wondering silently what I would have done if I’d had to get to work.

8:20-9:45 Desk time. As “case coordinator” for my son’s healthcare, services and schooling, the day begins with a perusal of a variety of list serves that help me stay aware of upcoming training opportunities, recreation programs, etc. Today prompts me to email my state senator and representative regarding an upcoming bill and hearing on special education legal issues. Then it’s on to Whack-a-Mole of calls and emails: Five emails and a phone call regarding finding a physiatrist, two calls to talk to a potential guest speaker at our city’s special ed parents meeting, send out an email to same group for an upcoming event, obligatory confirmation call for tomorrow’s endocrinologist appointment, phone call to geneticist office to request blood work orders be put through in time for tomorrow’s visit at hospital, email with son’s school for next week’s home visit.

11:30-12:45 Meeting at pediatrician’s practice. Because of my experience as a parent of a child with special healthcare needs, I’ve been invited to participate in a medical home transformation process. These meetings are weekly and also include a few overnight conferences over the next two and a half years. While I’m not really being compensated for this work, it feels important and meaningful.

2:00 Walk to pick up daughter, while making phone calls for delivery of diapers and shipment of specialty meds. While I am waiting for her to be dismissed, I read a few pages in a book written by other parents of children with special needs.

4:00 Son arrives home and luckily he has an amazing PCA who helps him for 90 minutes each afternoon so that I can get dinner ready and do laundry. This used to be the hardest part of the day.

5:30-5:45 Dinner, with same level of re-directing as at breakfast. Never as relaxing as I expect it to be.

5:45-8:30 Sitting on a stool next to my boy in the bathroom. He’s in a critical phase of potty training: he has figured out how to hold his pee, but not how to go. He has not peed since he woke up in the morning and is rocking and shaking because he needs to go badly. My husband and I take turns sitting with him until finally he declares that he is tired and we put him in a diaper and put him to bed. He asks to get up to go to the potty three more times with no luck, then pees so much within minutes of falling asleep that we have to change him and his bedding.

8:30 More laundry, then get my bag together for tomorrow’s developmental disability fellowship classes. Too tired to do more than toss some dishes into the dishwasher and veg out in front of the TV.

So there, that’s what I did all day. Despite the effort, the to-do list remains long–write a will, special needs financial planning, fill out dreaded re-authorization paperwork for supplemental health insurance, talk to husband about the implications of this new genetic testing; the list is always there.

I would like there to be a more inspiring or insightful closing paragraph for this post; it reads as whiny, self-righteous and needy. On some level, it is — I do find myself often wondering if anyone really understands how much work this is. I can’t even begin to address the issue of the privilege I have in being able to “stay home” to do these things. But there’s more to my life than this, yet alas the blogging time slot on today’s calendar is coming to a close and I don’t have enough time to figure out what exactly that is. Gotta go…I have too much to do today.