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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!

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.

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.

It takes what it takes

A few weeks ago I wrote about the luscious, feet-up summer I was having. The contrast between last month and this one couldn’t be more stark. Not only is it back-to-school for the kids, but back-to-school for me and a big mental transition out of a period of grieving for my father and my role as full-time case manager for my son with special needs.

Hear that grinding noise? That’s the sound of me switching gears rather ungracefully, from first to fifth and back again without completely depressing the clutch. As I work through the tasks of coordinating new childcare routines, figuring out how to be a student in the 21st century (there are no Trapper Keepers on this side of the millennium),  swapping summer clothes for fall, getting used to my husband being away for travel more often again — I am a hot mess. It is not pretty.

In the midst of all this busy-ness, I committed one of the cardinal sins of special needs parenting (and honestly, parenting in general…no, make that life in general): I decided I was too busy to take care of myself.

Self-care for me is the stuff that builds my capacity for this intense life, increases my strength, stretches me and makes me grow. It is not glamorous or even pampering; it is sometimes sweaty, sometimes painful, sometimes boring, often the last thing I want to do with my limited time and energy. It is more akin to the “wax on, wax off” training exercises that Mr. Miyagi had the Karate Kid do — motions that, when done often enough, become part of muscle memory, protective stances deeply rooted in habit and graceful in their economy of movement. Practices that bring me into my body and present moment and hopefully keep me there long enough to fix a couple of problems, give someone a hug and have a laugh.

It started out that I told myself that I didn’t have time to go running because I was too busy catching up on a summer’s worth of email. Then, I couldn’t go to yoga because I was too busy getting ready for school. I couldn’t plan or cook healthy meals because…you guessed it, I was too busy. Eventually, it wasn’t just that I was too busy, but I was too tired, too.

An occasional skipped workout — what’s the big deal, right? Isn’t all of this focus on self-care really just self-indulgence? Maybe for some, but for me, not taking care of myself quickly spirals into unpleasantness towards for the people I care most about, my husband and kids and my mother: I become critical and I raise my voice. I hold others responsible for my emotions. (“Don’t make me angry…you don’t want to see the Hulk when he’s angry.” That kind of thing. Real nice.) I overextend myself, get overwhelmed and anxious, which I strangely compound by trying to distract myself from by going on-line and taking in even more mindless information. I also tend to not pay attention to details and make mistakes which cost me more time and energy.

When looking at the costs of not taking care of myself, I see that self-care is not self-indulgent. It is a responsibility. For the sake of my family, my friends and my community, I can’t afford not to.

What is sort of confounding to me is just what a huge amount of self-care I, a bundle of anxieties and distractions, require. No two people require the same amount, but when I look at the list of just the basic self-care maintenance activities that are needed, it’s almost absurd:

  • Physical: run twice a week, yoga class twice a week, some form of activity (walking or biking instead of driving) on other days; plan and prepare healthy meals
  • Mental and spiritual: attend weekly talks at my local insight meditation center and meditate daily at home for 30 minutes; make some art once a month; step away from my phone and computer every day
  • Emotional: connect with my husband and kids every day; go to therapy every other week; blog once a week; sketch or write in my journal as needed; get together with a friend (without kids) once every other week; read books and blogs by and about special needs parents

I get up at 5am to meditate and journal. I go out after the kids go to bed for yoga and to see friends. I squeeze in the runs when I can; I’m no longer ashamed to show up to school pick up drenched in sweat. I leave early for my meetings so I can bike. At times it seems so unfair that in addition to IEP meetings, doctors’ appointments, therapies at home and everything else, that what this life requires of me is a tremendous amount of time and energy simply on maintaining my sanity.

But this morning, as I headed over to the yoga place around the corner, despite the fact that I have a million other things to do, I remembered there’s a brilliant saying from AA (Alcoholics Anonymous): “It takes what it takes.”

It takes what it takes. As in, yes, to get sober sometimes you do need to check yourself into a hospital, move, get a new job, leave your spouse, get new friends, go to a meeting every single day for the rest of your life.  Some people need more than that. Some will need less. How much does it take to get sober? It takes what it takes.

How much does it take for me to live without be angry, stiff, whiny and overwhelmed? Apparently a fair amount. It takes what it takes. For all of us. Even for me.

Anyone out there care to share what it takes for them? Can you share what you’ve done to make time for self-care, especially when you’re busy? I could really use some inspiration!

Following yesterday’s post about the importance of hearing more from siblings of special needs, someone pointed out this great video from the Arc of King County in Seattle, Washington.

Watching the video brought to mind a stressful evening last week where my daughter, who is typically developing, expressed her feelings of just how unfair it is that her brother, who has special needs, doesn’t have to do homework like her — through tears and with a great amount of screaming. This video convinced me that’s it’s time to ramp up the help she’s getting in figuring this all out.

The video is a little on the longer side at nearly 15 minutes, but a great introduction for parents, grandparents, family friends and teachers on the challenges their neurotypical kids might face. It could also be worth showing at a Special Ed Parents Advisory Council meeting or other gathering.

After years of asking myself questions like “Why am I filling out this medical form when this information is already in their computer?” or “Why does this doctor only see patients during school hours?” and other such silly observations along the journey through parenting a child with special needs, I suddenly find myself invited by a couple of well-respected healthcare institutions to share my perspective with their staff and students.

It’s quite a responsibility to be given a seat at the table among pediatricians, speech/occupational/physical therapists, psychiatrists, practice managers, social workers and policy lawyers. I am so grateful to those family advocates and disability activists who have worked tirelessly to create a culture where a parent’s experience and opinion is valued and sought out. I hope I don’t let them down. I’m also acutely aware that I am speaking on behalf of the vast majority of parents of children with special needs who feel disenfranchised and powerless; due to either perceived or actual limitations, they don’t know how to speak their mind, share their story, or give their feedback to the professionals who hold the purse strings, create the laws, implement the therapies or design the communities that impact their families’ lives in very real ways. I hope I don’t let them down either.

On the heels of us parents pulling up a chair at the table, there’s another group beginning to claim their space here too—siblings of people with special needs. As the folks who will possibly spend even more of their own lives with their special family members than parents, sometimes as adult caregivers and guardians, they have a perspective to add to the conversation. Particularly amazing to me is how aware they are of the ways this experience has shaped them and helped them grow. Their very “boots on the ground” experience with a decidedly non-parental (read: less hysterical) perspective gives their experience credibility; I know I seek out their advice to help me create a family where both of my children can thrive and feel nurtured.

As sibling groups mobilize to create support groups and education like SibShops, conduct and share research, and build their own community within the Family Movement, I just have to say how glad I am that they are here.

They also just might be more effective at educating the very folks whose tables I’m sitting at these days than I am. In blogs, at fundraising events, on YouTube, in the media and on Capitol Hill, they are savvy and persistent.

Here’s a recent example, a short but remarkable video by a teenage sister of a boy with special needs. I can’t believe how lucky we parents are to be standing shoulder-to-shoulder with her:

Another tool in my toolbox series that helps me live with joy, courage and compassion, as inspired by the Hindu goddess Durga.

In 10th grade business class, my teacher Mrs. Goldstein taught our class a model that promised to make us more successful in life. When faced with a difficult decision of whether or not to do something, she counciled us to execute the following strategy:

  1. At the top of a sheet of paper (this was the 1980’s, so no, there was not an app for that) write down the a potential course of action to address your problem. Below it, create two columns called “Pros” and “Cons,” and brainstorm what each of them could be.
  2. Review the list and after careful consideration, select the proper course of action.

Although I can’t say I (or many teenagers) went to the trouble of pulling out paper and pen when faced with a tricky decision, but the exercise captures the essence of a very Western approach to decision making. I put a lot of stock in what my intellect — my “head” —  had to say about things and had faith that sound reasoning and reflection alone would lead to a positive outcome. In the special needs worlds of evidence-based medicine and education, Data is King.

But there are other internal sources of information available to us. Marketing managers everywhere know that we unconsciously make decisions based on our emotions and then find intellectual reasons to justify our decisions. We often refer to our heart as being the seat of our emotional wisdom, as reflected expressions like “he followed his heart,” or “she has a lot of heart.” As a parent, my heart is often the governor for much of my behavior, both good and bad — affection and yelling to name just two. As a special needs parent, letting my heart take the reigns too often can lead to excessive worry or guilt and make my behavior very risk aversive.

Lately I’ve come to appreciate a third kind of intelligence as a complement to my head and my heart: my gut. Why? When I look at a situation through the lens of my intellect, I focus mostly on quantifiable facts, and my field of vision is fairly narrow. Looking through my heart, I often take the decision which will provide short-term relief of pain but may not provide a long-term solution. But when my gut is the lens with which I view a situation, suddenly I have access to all sorts of information — in addition to my head and heart wisdom, murky hunches based on connections with past experiences and insights that my intellectual memory can’t quite put its finger on get equal say. It’s as if my gut has superior peripheral vision, able to read and react to a complex situation quickly, the way a quarterback can read a play in progress and know exactly where to get the ball.

One way I my gut shares its wisdom with me is by acting as a little voice or a milli-second of nearly imperceptable hesitation. “Don’t put your keys there or you’ll forget them,” the voice says, or “Don’t hit the ‘send’ button just yet on this email.” The challenge, of course, in this crazybusy life of mine, is to not drown that tiny voice out with distraction and mindlessness. I don’t know how many times I’ve made a mistake — from harmless ones like dropping a glass to more costly ones like trusting the wrong person — and realized that I knew all along it was going to happen but I was in too much of a rush to listen. When I am grounded in my body and present in the moment, the voice is amplified. Pausing and taking a breath, I can reconnect with this voice and ask for its guidance. Perhaps people who seem to have extra-sensory abilities are simply able to crank up the volume of this voice.

I won’t stop using my head or my heart; in fact I think my gut instinct works as well as it does precisely because my head and heart have so much experience. No need to throw the baby out with the bath water. I simply appreciate having another channel of information, one that is often dead on and incredibly quick. But don’t take my word for it — trust your own gut. I’d love to hear your thoughts…or feelings…or instincts.

P.S. In recent years, the research coming out regarding the Enteric Nervous System (the one hundred million neurons embedded in our gastro-intestinal lining) now referred to as “the second brain,” is pretty fascinating. In the same vein but coming from a completely different tradition, many mind-body schools of thought like ones who use energy fields or chakras, consider the solar plexus to be the seat of personal power and will. There’s a lot to explore here if you’re interested.