Sunday, December 25, 2011

Dickens Knew There'd Be Days Like These

A year ago, I wrote Kid O Is CPed, or How Crippling Language and Sentimentality Dehumanizes Disabled Children and Adults in response to a Twitter conversation and blog post by Ira Socol about Dickens's portrayal of Tiny Tim. When Tiny Tim says to his father that he hopes people will notice him in church, he does not wish to be seen as a pitiful cripple. Instead he wants people to remember how wonderful and loving God is.

Back when I was in my twenties, I applied for jobs with various non-profits. At one point, I sent my resume to a blind ad. I received a call from Muscular Dystrophy Association telling me I could interview with them I turned down the opportunity because I did not want to be affiliated with an organization that both sentimentalized and exploited children. Even though they no longer have Jerry Lewis as their pitchman, I doubt their emotionally manipulative fundraising tactics have changed.

After having Kid O, those feelings intensified. I feel that special needs and disabled children are often treated as lesser beings. They are either seen as objects of pity or derision or as beatific or magical beings. Parents of special needs kids are either venerated as saints or branded as criminals, with little in between.

When parents are seen as saints, we are often offered help we do not ask for. As I recounted Kid O, Comedic Queen, Traveling in Style :

Subway steps are tricky enough without someone unexpectedly lifting up the bottom half of Kid O's stroller. Without a word, a hand would dart out, followed by a second hand and then a torso would appear. All followed by the friendly face of some well meaning human being. And, all too frequently, I'd have to tell that friendly, well meaning person to let go. Many would let go right away, but others would only respond to me harshly insisting. All too often a look of hurt would register on their faces. They were presuming to offer help that I never requested and were throwing me off my rhythm. One false move and I could have tumbled down the stairs. And Kid O with me.

I never intended to hurt anyone's feelings. It is awkward to decline help, even as tactfully as possible, from people who have good intentions. I don't want to be an ingrate. I simply want to decide for myself what assistance I want and need. If people want to offer help, it would be great if they were to ask what I need or want. Or tell me what they have available or can do and then I can choose.

Recently Kid O came home with a brand new backpack filled with school supplies. I called up the high school to see if she had gotten this by mistake, and was informed that all of the low incidence kids received the same backpack loaded with the same supplies. Given that a large percentage of the school population are kids from low income families, I would think that it would be better if this donation were schoolwide. Instead these Special Ed kids are singled out for what seems to me to be the dubious achievement of being in the low incidence program.

If I were to point out to service organizations and these companies that they mainly do this to alleviate guilt, they would be taken aback and perhaps even angered by what they would perceive, and, rightly so, as cynicism on my part. But the fact is that this type of charity is demeaning as it perpetuates the stereotypical thinking of "poor little crippled kid" or "poor little special needs kid." I do not doubt there are good intentions, but, first and foremost, this is more about the donors feeling good about themselves than it is about whether or not the donations are what is wanted or needed by the individual, or, by extension, their families.

The justifications for this kind of charity has the danger of allowing generally reasonable people to conclude that, paradoxically, sheltered workshops are a perfectly fine destination for special needs children. I would ask such people if that outcome would be acceptable to them for their ablebodied and/or "normal" children. More likely they hope their children will have a good education and earn a decent living doing work they enjoy. When a segment of the population is treated like lesser beings, even in the name of charity, then it is easy to segue from that to exploitation. Furthermore when I feel like an ingrate after receiving gifts or donations neither wanted nor needed, that indicates to me that something is awry.

One year before Thanksgiving Kid O came home with a laundry basket full of food, including a turkey. While it was true that my husband was unemployed at the time, I felt shame and anger. We had already bought food for Thanksgiving, and so there we were with two turkeys as well as food suited to our tastes and food that was not. I was mortified that anyone would think we were a charity case. I never said anything to anyone at the school, because I knew that everyone meant well. They presumed they were helping us feed our family when in fact a lot of what they did was actually wasteful. We ate both turkeys, but I still wonder why no one bothered to ask us what we wanted since they were doing this with our family in mind.

There is no dignity in receiving this kind of a gift. There is no way for recipients to save face. And, when a laundry basket full of food comes on the wheelchair lift the Wednesday afternoon before Thanksgiving, there is certainly no way to refuse it. No way to say "please give this to someone else." I am certain that members of that service organization who donated that Thanksgiving dinner felt really good about what they had done. To me, however, that act of charity felt thoughtless and exceedingly inconsiderate. I did not feel grateful.

Rabbi Moses ben Maimon, better known as Maimonides, established Eight Principles of Giving or Tzedakah. According to the Wikipedia article on tzedakah the eighth principle of giving is:

8. Giving "in sadness" - it is thought that Maimonides was referring to giving because of the sad feelings one might have in seeing people in need (as opposed to giving because it is a religious obligation; giving out of pity).

which is the most objectionable reason to give to anyone. That is precisely why I would ask members of a service organization to question the purity of their motives. When a person is given to out of pity, it reduces the person to an object rather than as a person who has feelings, hopes and aspirations. In this instance both the giver and the recipient are diminished by this action.

Maimonides' first principle of giving as mentioned in the same Wiki article is:

1. Giving an interest-free loan to a person in need; forming a partnership with a person in need; giving a grant to a person in need; finding a job for a person in need; so long as that loan, grant, partnership, or job results in the person no longer living by relying upon others.

Or,if you prefer, from Honorable Ways to Give Charity

1. The highest form of charity is to help sustain a person before they become impoverished by offering a substantial gift in a dignified manner, or by extending a suitable loan, or by helping them find employment or establish themselves in business so as to make it unnecessary for them to become dependent on others.

This way of giving is the most honorable because this allows the special needs kid to become a functioning member of the community and keeps dignity and self-worth intact for them and for their families. The only reason to not consider wants and needs of a special needs individual is because you presume they have lesser mental abilities and will either not know the difference or will be grateful for whatever they get. That is precisely why I feel resentment when I am the recipient, directly or indirectly, of such charity.

Members of service organizations would not want to be considered charity cases any more than I do. If service organizations want to make donations then those receiving the donations should have some say as to what they wish to receive. Ideally there would be a sense of collaboration. Members of service organizations ought to be willing to donate (within reason) things an individual or families need rather than what they think they need.

A week or two ago, our yoga instructor called me about an email she had received about a non-profit receiving a lightly used Hoyer Lift. This email came from the woman who ran the non-profit. This woman's family had their own Hoyer Lift for their daughter who, like Kid O, has severe cerebral palsy. I called the woman and we made arrangements for my husband to go and pick the lift up. That was something that we have needed for quite some time. I am truly grateful for this lift. Because this was done in a collaborative manner, there was no sense of inequality. No sense of being beholden to or subordinate to anybody.

What Moses Maimonides is essentially talking about is the basis for the gift economy. If a special needs child is given equipment or technology that will better ensure their independence, then instead of becoming a burden on society they have the potential to benefit society themselves. By giving my husband and I the opportunity of getting a Hoyer Lift, we can feel more at ease at hiring respite care. We are now less worried about someone getting injured when having to lift Kid O for instance. And I will not always have to ask my husband to help me.

Kid O cannot use school supplies because her hands are too spastic, and her fingers are not sufficiently differentiated.. Had I been consulted about this donation, I could have been in the position of suggesting that this company give this to someone who could use it.
Instead I have to figure out what we are going to do with these things. Kid Q has plenty of pencils, markers, etc, and so I do not feel comfortable keeping these. Perhaps when school resumes after winter break I will talk to Kid O's teacher and see if we can regift these
to the classroom. The thing is I shouldn't have to be in this position to begin with. I didn't express a need for this.

Had anyone bothered to ask me, I would have thought of all kinds of things that I could have used or that Kid O could have used. A communication device, for example, that doesn't require staff, would make it possible for Kid O to gain at least a modicum of independence and provide her with a way to take her place within the community That's the kind of assistance I'd be grateful for, and for which I'd echo Tiny Tim's sentiments, "God bless us, every one!."

Wednesday, December 14, 2011

Mister, I Come Weaponless

Mister, I come weaponless.
No coy mistress am I.
I pick pearls from your beautiful pink heart.
I place them in a pristine basket.

How can I tell you, mister,
you have no reason to fear.
How can I tell you mister,
You have no reason to doubt.
How can I tell you, mister,
I am who I say I am.
No more. No less.

I tell you, mister,
I am your haven.
I am your harbor.
I am your inlet.
I am your every port.

I am shatterproof.
Even so I am filled with shards
and other sharpnesses.
Sharp tongue, soft heart.

I embrace a multitude of shimmering yous.
Mathematically you are awe's sum.
I have no language, mister,
to explain that particular equation.

Monday, November 28, 2011

June Cleaver Cleaves Herself

JuneMargaretDonnaHarriet Cleaver frets over starched white collars.
She wipes the dish clean, clean, clean, clean, clean.
So clean the pattern is impressed upon her palm.
Blood and Palmolive. Intermixed. Interspersed. Intermingled.
Her husband is a busy man wiling away hours in his study, den, office.
Her daughters, Princess and Kitten, and sons, Wally, Bud and...
The Beaver. What was his name again? She slaps her forehead. Oh, yes, Theodore.
A sweet gift. A swell kid. An afterthought

JuneHarrietMargaretDonna stirs the batter for cookies.
She thinks about a woman whose story
got buried in the back of the newspaper.
A mad, sad, isolated housewife
cleans the house from top to bottom, top to bottom, top to bottom, top to bottom.
She can see her funhouse reflection in every piece of silver.
She retires to the recesses of the attic and...

JuneDonnaHarrietMargaret smiles smugly.
Her life, she reasons, needs a theme song. Something hummable.
Ward, her husband, or is it Jim, her mind wanders, knows best.
With pipe in hand, he sets her straight.
She doesn't remember much about the moment.
She is dutiful. He is perfunctory.
She is pleasant and docile and always makes his favorite meal.
Even when company shows up unannounced.
"I am sorry, honey. I forgot to tell you."
She smiles tightly. "The rib roast is in the oven."

JuneDonnaMargaretHarriet goes to the kitchen where she vigorously mashes potatoes.
She will make WardJimOzzieAlex look good.
She will smile even if her mouth cracks.
She picks up the cleaver. She picks up the carving knife.
She stabs and jabs blindly at
The wooden cutting board.
She vanishes all murderous thoughts from her pretty little head
and cheerfully, resolutely serves dinner.
She looks outside her dark kitchen window.
She wonders about what life is like on the outside.
What would it be like to have one, a life that is.

Monday, November 14, 2011

Oshmina, Ellis Island Remembers You

Oshmina, Ellis Island remembers you.
Remembers my grandpa.
Remembers his brothers.
Remembers my mother's cousin
who went from town to town
asking for a Jew so he could sell his wares.

Oshmina, Ellis Island remembers you
Remembers their names.
Remembers their countries of origin.
Remembers a mass grave at the edge of town
Remembers my great aunt.
Who remains there.

Oshmina, Ellis Island remembers you.
Remembers a teenaged girl who hid from hungry soldiers.
Remembers her guilt of leaving behind her starving father.
Remembers her mother who died much too young,
After bearing eight children. Perhaps more.
Who worked herself to death in the factory.

Oshmina, Ellis Island remembers you.
Those who remained, their names buried but not forgotten.
Those who left traded in old names for new names.
Names and ages a jumble on passenger lists.
A confusion of huddled masses.
Breathing free with new identities.
Breathing free with new lives.
Breathing free with new homes.
Never entirely forgetting old countries.
Never forgetting mother tongues.

Oshmina. Ellis Island remembers you.
Fragments of lullabies sung by their mothers.
Sung to their daughters. Sung to their granddaughters.
"The road is long," Yes, the road is long.
The journey has become a patchwork quilt.
Stories half told. Half forgotten.
Details altered. Sifted through fine sands of time
unearthing bright gems of wistful remembrance.

Sunday, October 23, 2011

Sweet Sue

"You look like hell," I said, when we were finally alone.

"Thank you." .

I stared out at the sailboats on Lake Michigan.

"Are you afraid," she asked, extending her hand.

I took her hand. "Yeah," I responded, still staring out at the lake.

I couldn't tell my very best friend in the world, that I was sad, angry and afraid all at the same time. Instead I said, "I can't quite articulate it," while holding back howls of grief.

The moment I walked into Sue's hospital room, I thought, you're not going to make it. To tell her that would have been unkind. Instead I decided it was better to play out some old B movie melodrama. When she asked me if we could go to the pierogi fest next summer, I said, "Sure, it's a date." All the while imagining, if she made it, that she'd be too frail to make the long drive. I had a vision of placing her shrunken body in a wheelchair, perhaps covered by a blanket, and rolling her around some food booths for things neither one of us would still have any appetite for.

A few days later, Sue was in a coma . The night before she had been rushed to emergency surgery to repair a perforated bowel. I awaited anxiously for the door to open to the consulting room that Sue's mother and brother had been in with the doctors. "Oh, Debbie," Sue's mother said as she hugged me and then took my hand. "It hardly seems right." As we walked down to where Sue was, she explained to me that Sue's organs were shutting down. She wasn't going to awaken.

Before I entered her room, I had thought about what I was going to say in my goodbye.
Murphy's Law of Final Goodbyes seemed to be entirely in force. I fumbled it entirely. I had hoped, perhaps absurdly, to leave Sue with a final meditation. I wanted to remind her of a week we spent in a cabin on Lake Superior. My cellphone, the very one I thought was in need of being recharged, rang as I was saying goodbye. I said "excuse me" to Sue as I slipped out of the room to see who it was and to turn the phone off. And then an orderly came in to take her temperature. I was perplexed why they would need the vitals of a woman who was virtually dead, but at least she was as unobtrusive as possible.

I also found the Classical Muzak distracting, especially since it was the same few notes over and over again. I was half hoping that the woman who had once given me a Talking Heads tape would awaken long enough to complain. Sue, I couldn't help thinking, would have laughed at the absurdity of it all. I can still imagine her throwing her head back and laughing that hearty laugh of hers.

We were improbable friends. I was starting graduate school. She was struggling yet again with Freshman Comp. She had lived all of her life in the suburbs. I had grown up in Chicago in a neighborhood near the mills. She was Episcopalian. I was Jewish. She was very religious. I was far from that. Despite the obvious differences, we complemented each other in a very deep way. We both had a strong sense of social justice. We both loved nature. Together we had some great adventures.

Sometimes Sue irritated me because she could be foolish. Other times she was very brave. Other times, too, like when she went to Al Anon, she was very emotionally open, more so than most people I knew. Sometimes she could seem absent, as if she were disappearing, even from herself. But she was generous, forgiving, loving and, above all, hospitable.

Many times we didn't do much of anything. Just companionable. We would drift in and out of each other's orbits, always to eventually reconnect. And when we did there was always a simple joy. I can hear her still, upon hearing my voice on the phone, joyfully exclaim,. "Oh, Debbie!" The love that flowed between us was exceptional. Many years ago she proclaimed me her chosen sister. And, in the end, her mother said, "You were practically her favorite person." Sue was practically my favorite person, too, and I will always feel honored by the thirty-one years of friendship I had with wonderful, kind and decent woman.

In this heart of mine, you'll live all the time.

Thursday, August 18, 2011

Edward G Robinson, Queen Victoria, An Easy-Bake Oven and a Rabbi: Making Sense of Kid O's Early Days

They rolled my gurney into the room where they were cleaning her up. Kid O had dark hair,and this fierce, defiant look that reminded my husband and me of Edward G. Robinson.. I got to look at her for a few minutes. Then they rolled me to my room, and they rolled Kid O to the NICU.

That Monday night I slept fitfully. I was filled with magnesium sulphate, saline solution, and enough morphine to give me endless lucid dreams or visions. No deep sleep, more than proving the adage that you don't go to the hospital for a rest.

Two days later, they removed the IV for the magnesium sulphate. As soon as I was liberated, I got myself dressed and hightailed it down to the NICU. I was looking in on Kid O when they shooed me away from her incubator and they wouldn't tell me why. I stood outside and watched them roll up what, to me, looked like an E-Z Bake Oven and what I surmised was a preemie sized x-ray machine. I was bewildered. Members of NICU staff saw me at the window, and insisted I had to go back to my room.

A man stood in my doorway. He told me that he was the chaplain, but he could come back later if I wanted to nap. He looked familiar to me. As soon as he told me his name, I knew who he was. My husband and I had met him a month earlier. he was the rabbi who we wanted for a naming ceremony. I invited him in.

The rabbi sat near me and listened. He did not presume to offer any answers. He told me he thought that Kid O would be OK. She had a glucose IV and a nose feeding tube. She weighed only 3 lbs, 10 oz Yet if the rabbi told me he didn't think she'd leave after two days, maybe she wouldn't. That gave me some comfort.

A short while later, the chief neonatologist came up to my room. Kid O's digestive system had been shutting down. My heart sank. The x-rays, he explained, showed that she was full. So they removed the nose feeding tube. I felt relieved. I immediately went down to the NICU and took my first really good look at Kid O.

As Kid O slept, she made suckling motions with her lips. Her tiny little fists shook. I was relieved they had removed the nose feeding tube, but the glucose IV remained. Kid O kept pulling it out, so they fashioned what looked like a hat and taped the IV to her head.. While it was hard to see the IV taped to her tiny head, I at least knew that she was getting better.

One of the nurses taped a caricature of Minnie Mouse to the incubator stand. We still have it. Since my husband would come wearing his long sleeved tie dyed shirt, another nurse got Kid O a Garcia bear beanie baby. We still have that, too. My husband brought in this tiny yellow cloth elephant we had. Those two stuffed animals were her companions as she got stronger.

My husband told me that the babies who screamed were the ones most likely to survive. The nurses told us that, at feeding time, Kid O screamed with all of her might, while other babies waited placidly. Kid O was neither to be denied nor forgotten.

After we brought her home, Kid O's demeanor softened from looking like a miniature Edward G Robinson fighting for survival to that of Queen Victoria showing a "we are not amused" look of displeasure. Her wails made me feel like a duck in a shooting gallery, going every which way.

Kid O kept me in a panic. I don't know how I functioned during those early days. I had post partum depression, and Kid O had a disorganized nervous system. Despite some early tumult, we had some good moments. I read a book to her about Merlin while she slept in my lap. We listened to public radio together. When she was not in a state of upset, Kid O and I took some good walks together. When she was up in the middle of the night teething, we watched their do wop specials they bring out for their pledge drives.

Slowly I began to make sense of this baby. As she grew, she turned into a person I liked. That is not to say that her nervous system became magically organized. It did not. There were times of much screaming. But there were also times when I could also see her emergent sense of humor. That made all the difference. And still does.

Friday, July 22, 2011

Violence Against Women And Blind Rage Against Men

"Would you like to meet God," he asked me. Before I could say anything, there was a switchblade against my throat. This did not happen to me in a dark alley in some sleazy neighborhood. This was not some stranger. This man was a PhD candidate, and we were standing in the English Department Chair's backyard attending his annual pig roast. Thankfully this man's good friend, J, was standing nearby and quickly disarmed him. R. had a perverse sense of humor, and perhaps he meant this as some kind of joke. I never asked. Nor did I ever report this to anybody. For years it was a blocked memory. When I remembered the incident again, it was then that it was truly traumatic.

The woman who set me up to be driven home from her party by the Director of Graduate Studies probably only intended for me to freaked out by his drunk driving. When I told her how he had grabbed me as I tried to leave his car, I think she realized the practical joke wasn't quite so funny. She knew he was drunk. Did she also know that he was a womanizer? Was for my safety, she explained, so I wouldn't have to walk home alone in the dark. Never mind that I feared for my life as he drove us back to campus. I had him drop me off several blocks away from the over twenty-one/grad dorm I was living in.. Little did I know that this arm was going to reach for me and slam me against him. At the least he wanted to plant a sloppy kiss on my mouth. And at the worst... I escaped with only a kiss on my cheek. Some joke. Real knee slapper.

"You'll read about me in the news tomorrow," my ex-boyfriend said as he let a bullet roll out of his jacket pocket as he walked away from my study carrel, in a failed attempt to get back together with me. I was shaken to the core, but I was resolute not to re-establish a romantic relationship with him. His emotional manipulation confirmed for me that my judgment was sound. A dodged bullet, as a friend of mine later would say.

I have never ended up in a hospital having a rape kit done, or having bruises tended to or bones set. I have felt frightened and humiliated. I was hit. Once. Against the side of my face. I saw shades of blue. For a few moments. That was bad, but, overall, I've been very lucky. My experiences pale in comparison with those of women who have been far more brutalized. . I have had men who loved me say really brutal things to me. I have been screamed at. I was once shoved back into a chair as I was getting up to leave. These things have occurred at the hands of otherwise loving, caring men. And that is why this is all so difficult. There are shades of gray. Sometimes it's a one time only event.

Some times one time is all a man will get. "I told my husband that if he ever hit me, he'd better make it good one," a former co-worker once said to me. I doubt her husband ever did. Some of us are stronger than others. We have greater resolve. Others make excuses. Say they deserve it.

Sympathy often lies with the woman being abused. When a woman is the abuser instead, we are shocked to the core. When a woman mutilates a man the way this woman did recently, some cynical people will say, "he deserved it," or "he had it coming," in much the same way that our society often tries to discredit rape victims. This reaction by Sharon Osbourne of The Talk, CBS' knock off of The View, pinpoints the double standard we have towards men who are abused. We don't know the circumstances. Had this man abused her? Had he done no more than merely telling her he wanted a divorce? It really doesn't matter. I personally neither want nor need to know all the sordid details. The women on The Talk lend sufficient conjecture and imagination and imagery.

As David Letterman said on The Late Show, in reaction to hearing the statement from the hospital that the man was "OK," no, this man is really not OK. How can this man possibly OK? (Paraphrasing his remarks.) As with women who have been brutalized, this man will never be OK again. No doubt he will survive and lead some kind of life, but his life has been changed forever. And in a swift, brutal and premeditated attack.

We, as a society, can try to justify the double standards in the reaction to this brutality. Women are abused by men all the time. Some of them die at the hands of men who supposedly love them. We forget that sometimes the abusive one is the woman and that sometimes men die, too. If we discount rape victims, we doubly doubt male rape victims. If we dismiss acts of violence, we doubly dismiss acts of violence against men. in all likelihood, this is possibly a daily occurrence. In all likelihood violence against men undoubtedly go underreported. if it's difficult for a woman to issue a complaint, how much harder must it be, in this blame or shame the victim society, for a man to step forward and admit abuse.

Women have very legitimate reasons for anger, and I would be the last one to say that any emotion was invalid. There is, however, a big difference between anger, which can, in a calm, assertive way, move things in a positive direction, and blind rage, which strikes out indifferently and often for the wrong reasons.

We also need to acknowledge that emotional and psychological violence can be traumatic and leave interior scars if not exterior ones. Whether a man is a henpecked husband or physically brutalized, it doesn't matter. By the same token, it doesn't matter if a woman is raped and beaten or if she is screamed at and told how fat or inept she is. The results stay with us. And, worse, we tend to carry this forward, one way or another.

The first step we all take in stopping all violence is to first acknowledge one another's humanness. We don't have to understand each other. That is the ideal, but it's unlikely to happen. When we stop viewing others as The Other, that, says, this atheist, is when we meet God.

Friday, June 17, 2011

Kid O Is All Right, And I'm Not Too Much The Worse For Wear

"She's gone, Deb," said the voice on the phone. Gone? I couldn't comprehend. On a trip? On a vacation?

"She's gone," the voice belonging to a long time aide, Mrs. T said. "Her son called me this morning."

I couldn't believe what I was hearing. I felt like I had been sucker punched.This wasn't a vacation or a trip to the hospital.This was permanent.

Ms. AK, as she was known, the woman who had taken me under her wing for the past two years, had passed away two months practically to the day after she had retired.

"She asked me to find out if the kids were OK," Mrs T continued. Even at the end Ms. AK worried about her kids.

The kids were all right, but at that moment I was not. My first thought was how was I going to tell Kid O that her beloved teacher was no more. My second thought was a feeling of betrayal. Why hadn't she told me that she wasn't going to be around in the fall as she had promised? I wondered. And continue to wonder. Maybe there wasn't enough time. Or maybe she didn't want to have to comfort me on top of her own struggles. All I knew was that there was not going to be that fall meeting that would have eased the transition from her to this new teacher. No team building. No assurances that Kid O would continue to get what she needed.

Mrs. T and I talked some more. She told me that Ms. AK had even contacted McCormick Place about the Special Ed conference she wanted to hold. She and I had spoken one night about that in the spring when she confirmed for me that, yes, she was retiring in June. I realized that her work of educating educators about Special Ed kids was at least as important as staying in the classroom and doing what she did best: loving the kids in her classroom.

And she did love those kids. Fiercely. Gently. Her huge heart accepted all. I used to come and watch her interact with those kids.The Severe to Profound kids are probably the most hard to reach kids because they are very deep inside of themselves. She touched their minds. I am sure of it. She taught me as much about love and acceptance as about advocacy. I'll never forget the look of love on her face as she interacted with one of those kids. It's a calm look. Look of connection. Heart to heart. Soul to soul.

The first time I met Ms AK was when she invited me to meet with her in her classroom towards the end of the school year. This woman, who was half Irish, half Italian and married to a Palestinian Muslim, seemed larger than life to me. As she told me about her educational philosophy, I stood there flabbergasted. After two years of having Kid O with a substandard teacher, this woman was more than a lifeline. She was a lush oasis in the middle of an educational desert. No, she wasn't a mirage. And, for the first time in six years, I could speak frankly with someone about what I had observed about Special Education.

She insisted that Kid O attend ESY in her classroom instead of at the school she would soon be leaving. In the middle of summer, she called me in and we redid Kid O's IEP. Ms AK had a fine legal mind, and she went through the IEP line by line. She explained to me that some things were CYA. Some were illegal. I was astonished. And a bit embarrassed. I have a Master's degree, but I never really went through the wording of these IEPs. I assumed, incorrectly, that the wording was straight forward. I had been bamboozled, and I am certain that I am far from the only parent who is.

Kid O started to thrive under Ms AK's guidance. She was happy to go to school again. Although kids were mentally disabled, most of them were not physically disabled. Kid O loved the attention she received from her new, ablebodied friends. The girls in particular wanted to nurture her, something that Kid O just loved.

One girl became her partner in crime. Ms AK would pair them up for computer time. "I don't know how they do it," she'd confide in me, "but they manage to get out of the program." I could just imagine Kid O giggling mischievously. Whether it was through spastic happenstance or if Kid O really knew what she was doing, I just loved the idea of these two girls who had been written off doing something unexpected. I would imagine that Kid O was the ringleader in any mischief making.

Kid O was mislabeled, but I didn't care because she was in Ms AK's class, and I knew that Ms AK recognized her intelligence. Ms AK gave me access to her, as she did with all of her parents. I had her cell number as well as her home phone number.

I would call Ms AK up about a question about Kid O, and we would talk about gardening, redecorating her house, her husband, her sons, and, in the final months of her mother's life, she would vent to me about her brothers. No matter what we talked about she would always interject humor into the conversation. We both had a strong sense of the absurd.

When her mother died, I went to the wake. It was abundantly clear to me Ms AK had never left her Irish Catholic roots. She took my hand and led me to the open casket. She was proud of the dress she had chosen for her mother, and all the pictures surrounding the casket. It all made me uneasy, but I didn't let on. She needed my support then, and so I murmured something approving. Little could I have known that approximately six months later, I'd be taking Kid O to that same funeral home to view a mercifully closed casket to be used to lay her beloved teacher to rest.

Even at the wake, Kid O was very social. She was mad when I started to wheel her back to the minivan. We saw the principal and assistant principal arrive. We saw the case manager. We spoke to Kid O's occupational therapist. I had rolled her around the room two, three times. Gazed at all the pictures. Met one of Ms AK's brothers. We extended our condolences to Ms AK's sons and her husband. I had signed the guestbook. There was nothing left to do on that warm August evening but to go home. Ms AK's elder son helped me get Kid O back into her carseat, as she was being especially difficult about it. In the middle of his grief, he gave his warmth.

Ms AK had been looking forward to retirement. I was envious of the tickets she had to see Buddy Guy. I doubt she ever got to use them, as I imagine that the cancer and heart disease she had worked rapidly. I had wondered why she was at the doctors as often as she was. Staring at that closed casket, I finally had some inkling about why.

When I envision Ms AK, it is with coffee and cigarettes and wearing what I came to think of as her Johnny Cash outfit: a black pantsuit stretched out over that large frame of hers. The first day I saw her she was wearing that pantsuit, and the very last time I saw her alive she was wearing that pantsuit.

No matter what was going on in her life, a smile always played about her lips. Ms AK would tell me, her eyes filled with mischief, how she was skipping the staff development day. The principal would give her dispensation, she explained, because she was so invaluable to the school. No one could deny that she was a devoted teacher. She took about as much time with her parents as she did with her kids. And, if there was time, she'd tell you a story. Once, she told me with great relish, about her Italian grandfather who built a landmark condominium in Rogers Park and who had smoked expensive cigars. I imagined it was he who inspired her joie de vivre, but the twinkle in her eyes and the way she had of telling a story was pure Irish.

That is how I prefer to think of her. Cup of coffee in one hand. Cigarette in the other. Her voice low from years of smoking. Laughing at some absurdity and twinkle in her eyes.

I don't know if you are around Ms AK, but Kid O is all right. And I am not too much the worst for wear.

Monday, May 23, 2011

My MissShuganah Mame Goes To The ER. And Yet Again

As my husband and I sped down the Kennedy, I called my mother's helper. The ambulance siren in the background confirmed for me that she and my mother were on their way to the ER. Wasn't sure what was going on with my mother, except that I knew that she wasn't herself. I had called her up that Tuesday morning just like I do every morning. At first her voice sounded garbled. I asked her how she felt. "I don't know," she answered.

When I walked into the ER, I discovered my mom was already hooked up to an IV. She had a temperature of 104.8, and her blood pressure was steadily dropping. Last thing I wanted to do was be scared in front of my mom. I needed to be able to give my brothers information, and I needed to be to ask and answer questions of medical staff. My mother never lost consciousness, but whatever she was fighting clearly wiped her out. My mother is normally a light olive, and she looked very pale.

"Would your mother like a priest or a chaplain," the nurse asked me. "We're Jewish," I explained. "Oh, we've got a really great rabbi," she responded. I felt like I was being told menu options. "We're out of walleye, but the chef makes a really great chicken vesuvio." I refrained from asking,"So, you don't expect my mother to survive?" Part of me wanted to ask if they had a secular humanist on staff. Neither my mother nor I are particularly religious, may all the rabbis on the family tree forgive us.

The resident asked to speak to me outside my mom's cubicle. Asking for family member to step out of earshot of patient suggests things may not bode well. Does she have a DNR, he asked. I am pretty sure she did, but I wasn't sure where. He told me they could insert a blood line, which I later learned was called a PIC line. I consulted my mom and my brothers. We all agreed that as long as a PIC line didn't mean cutting her open to install it then they were to go ahead and do it. The PIC line was to allow for more medicine to enter her bloodstream to help her fight the infection she had. Other than that, they were going to try to make her as comfortable as possible. In other words, let her die.

I was very philosophical about it as I waited to hear back from my brothers. My mom is 91. Assuming she were to make it that far, she will turn 92 in August. I was in the ER and thinking, well, we will all miss her but she is 91 and has had a good, long life. I was also thinking and if she were to depart it would be on top of her mental game. I hope to be so lucky some day.

As I was pondering my mother's fate, I watched her blood pressure tumble to 104/47 I tried to get the attention of some nurses. ERs are insanely busy places, and, this time was more chaotic than usual. They had a patient they had to restrain and whose ravings could be heard clear across the entire ER. Finally, with what felt like much arm waving, I got the nurse's attention. I was told that 104/47 was nothing to worry about. I asked her, when do you start worrying? More like say 80/30. All righty. Was good to have a guideline. Right then my mom's blood pressure stopped being in free fall, and started to slowly rise back to normal.

My mother motioned for me to come closer. In a barely audible voice, she asked me about bin Laden. She asked me if she could have a newspaper. I knew then she wasn't ready to check out. I breathed a sigh of relief. A few days later it was revealed that she had had an e coli infection.

Six months earlier, my mother needed to be given BP meds intravenously. Her blood pressure had been too high after she had done a face plant in her apartment. "What are they doing to me," my mother asked, as the weird beeping noise of the blood pressure cuff going off had startled her awake. My mother knew where she was, but she panicked. She was breathing shallowly. When I finally got a nurse, she told my mother that her blood pressure had stabilized and that everything was being monitored. That did little to convince her that she was OK. Finally the man who had placed the IV in returned and he helped calm her down. He demonstrated deep breathing for her, and she copied him. After that she started breathing more regularly.

I was settling into listening to Garrison Keillor when the phone rang. My mother had managed to drag herself back to her bed after falling on her carpeted bedroom floor. She asked me to come downtown, and retrieve her walker from her kitchen.

When I arrived about an hour later, her apartment was dark. I rolled her walker to her bedside, and she went to the bathroom. I examined her bedroom floor. Didn't take a forensics expert to figure out which direction she had fallen. There was a huge imprint and pool of blood where her nose had hit. At first I thought she had just broken her nose. Then I saw her bruised right arm. I knew, at the very least, that she needed to have her arm looked at.

"Where's your pendant," I asked. "On the dresser," she responded. The pendent was nowhere to be seen. I finally found it over a doorknob. I sighed.

I called my mother's helper who thankfully was able to drive down and help me double team her. My mother was bargaining with me. Couldn't we wait a few hours? Couldn't we "sleep" on it? I told her I was either going to take her to the ER now, or I was going to go home. As we stood and debated the issue, my mother's face developed bruises under her eyes. She looked as if she had gone a few rounds with a mugger.

I thought of ways to try to convince her to go to the ER. First I brought up how I'd catch hell from my eldest brother. That only caused her to scowl. Her helper agreed with me that she needed to go to the ER, but my mother still dug in her heels.

I decided then that I needed to fight dirty. I reminded her how, just the previous May, I had been investigated for medical neglect by DCFS. I told her that if we waited until morning to bring her into the ER, the staff would be suspicious of me. A face plant could just as easily look like a fist plant. I told her that any delay could case medical staff to report me for alleged elder abuse. My mom didn't want to get me into trouble. She grudgingly agreed to let her helper get her dressed and into helper's car.

Both times my mom was in the ER, she naturally wanted to go home. One time was during the day. The other time was late evening and in the middle of the night. The time in the middle of the night was tiring but pretty much uneventful. These trips to the ER were between six to eight hours, with another half hour to an hour to stick around and talk to hospital staff once she had been admitted.

Last October, when I left the hospital at about 3:30 in the morning, I decided to walk the entire distance back to where I had left my car. "No one can get any action in this town," a man muttered as I waited for the light to change on Michigan Avenue. "Except at my house." I was silently responding, "No thank you," as I crossed. Window washers were just starting their day. Lovers paused at the bridge before crossing the Chicago River.

I thought for a moment about sacking out at my mother's apartment. Then I decided, no, I was going to drive home. When I got home at about 4:30, I called my brothers and gave them an update. They thanked me for the update. I logged into Twitter. Surfed a bit. Then I fell into bed at about 5:20 AM. I had put in a twenty-three hour day. I thought, this is what it must feel like for interns and residents. I also decided that even if I were about twenty-five years younger, I wouldn't want that grueling schedule. One twenty-three hour day was enough. My mother has been advised that I don't want to do this again. She agrees.

Thursday, February 3, 2011

Tiny Tim Has a Telepathic and Very Dark Conversation With a Young Woman in Wheelchair

Note: Apologies to Charles Dickens and to people who love Dickens, especially Christmas Carol.

Imagining Tiny Tim as a young man somehow transported through time and space from 19th Century England to 21st Century America. When I mention the girl in the wheelchair talking, she is really using telepathy.

"God bless us everyone," Tim says to himself in a mocking tone. "Bloody hell," he continues as he moves a crippled claw to his mouth to take a drag on the cigarette he is having during his fifteen minute break. It's almost Christmas time and Tim shivers while he stands outside of the sheltered workshop where he works. He snorts with derisive laughter. A cripple doing menial labor. Some perverse irony in that, he thought. That strange girl in the wheelchair laughed all the time. She couldn't do much of anything. Often times she will drop things just to watch him pick it up. She annoyed the hell out of him. At the same time he sometimes couldn't help but laugh with her.

Fate, Tim mused, had been very unkind to him. He roundly cursed out Scrooge's ghosts. "Crazy old coot," he muttered. "All that talk about ghosts showing him the past, present and future." Why couldn't the bastard let him die. What kind of life was this working for pennies a day folding napkins and placing them together with a plastic fork and knife, sliding them into a cellophane wrapper and placing them on a conveyor belt where a machine sealed the cellophane shut? Tim sighed. He had been so optimistic as a boy. Back to work.

He was starting to fold napkins again when he heard a feminine voice speak. "We really are blessed," the voice said. Tim looked around. The only one next to him was the girl in the wheelchair who couldn't talk. She had dropped a whole bunch of plasticware on the floor. Tim picked it up. "Kind of ridiculous, isn't it," the voice continued. "expecting a someone with spastic fingers to do this kind of work." The girl laughed uproariously. Tim did a double take. "Wait that was you, wasn't it? But how...?"

"It's telepathy, Tim," she responded. And laughed some more. "I am so bored," she added. "Aren't you?"

"Is that why you keep dropping napkins and plasticware?"

The girl giggled again.

"My folks used to call it ablebodied fetch," she explained.

"Used to," Tim asked, as he bend down yet again to pick things up the girl had dropped.

The girl shrugged. At least that is how he interpreted it. Then he saw something he had never seen before. She looked very sad.

"What happened to them," he asked as he straightened up yet again.

"My mom threw herself in front of a trolley in Philadelphia," the girl said sadly.

Tim felt the color drain from his face. How could she laugh at all, he wondered. If his mother had done that, he wouldn't be able to function at all. At least his mother was still alive and sometimes she and his sisters came to visit. "And your dad," he was afraid to ask.

"My dad couldn't function without her," the girl explained. "No one to make calls for him or pay the bills. He lost the house I grew up in. Everything except his bicycle. He's homeless now and often can be seen muttering to himself and crying."

Tim put a hand on her shoulder. "I am so sorry," he said, reflecting on how his own dad died from a heart attack one morning while crossing the street. He missed his dad, but at least he died of natural causes.

"I see him sometimes," she continued. "Every so often he seems to recognize me again and comes back to embrace me again the way he used to," she said, with a catch in her voice.

"He was in jail for a while for defacing currency," she added. "That is when my mom ... you know... it broke her heart... one thing too many she wrote in the note she mailed from Philly."

Tim averted his gaze. He felt a tear slide down his cheek. All this time he had been so annoyed with her. He had no idea.

"Hey," she said. "At least I had her for as long as I did. The people at DCFS didn't take me and my sister away. They could have."

He looked surprised. She had never mentioned a sister before. Then again he never asked. "You have a sister? Does she ever visit you?"

The girl shrugged. "From time to time. She loves me. But I stress her out. She doesn't listen very well. My mom used to hear me. My sister only heard me on the outside. Just the noises you usually hear. My mom tried to get her to really listen, but she just wasn't able to. She does care in her own way. She sometimes sends me a check."

Tim understood. His sisters had their own lives. They had gotten married and had their husbands and kids to look after. Lives of their own. He sighed. He wished he had a life of his own. Instead of whatever this was. But at least if he opened up his mind and his heart, he could finally hear her and have someone laugh with during the day. He sighed and continued on with the piecemeal work they were assigned to do.

"How come I can suddenly hear you," he asked.

The girl laughed. "You're a tough nut to crack, Tim. I've tried dozens of times."

He looked away ashamed. He had been so bitter about his own circumstances that he never really tried to connect with her.

"I'm sorry," he said slowly.

"It is OK, Tim. Honest. I know you have had a lot on your mind."

Didn't excuse his bad behavior, he thought to himself. "Nah. Should have tried to talk to you. That way we both could have had companionship."

They worked a little longer in silence. So many things he wanted to ask her.

"How did you end up at this sheltered workshop," he finally asked.

The girl looked away as if to a far off place.

"She gave up," she said softly. "She just couldn't fight any more. And then when my dad went to jail for defacing currency, well, that was the straw that broke the camel's back."

Tim thought for a moment. "Did she say goodbye to you," he asked.

"She didn't have to," the girl responded. "I knew." After a moment she continued. "She said goodbye, anyway, but we almost conversed the way that you and I are doing. That's how close we were."

They worked together in silence.

"She and I hugged heads."

Tim looked up. "What do you mean, hugged heads?"

"When I was a baby, my mom used to reach down and tell me 'hug heads,' and she would hug my head and I would reach up and hug hers. And that is what we did before she left for Philadelphia. That is how she said goodbye to me."

They worked on in silence. Tim didn't know what to say to this girl, this young woman who he had simply thought of as a bother.

"Wouldn't it be great," he finally said at last, "if they treated us as if we were fully human and not imbeciles just because we are disabled."

The girl nodded. "Yeah. Wouldn't it be great if others listened to me the way you just did."

"I am sorry that I didn't listen sooner," Tim said. He wondered if, by listening now, these shadows could disappear just like they did for Scrooge.

"That is OK. You are listening now," the young woman said. "That is really all that matters."

"Yeah," he said.

A few minutes later he added, "You are right. We are blessed."

Tuesday, January 25, 2011

Survival Instead of Suicide, Shifting the Paradigm from Victim to Compassionate Survivor

I am a bullying survivor.

All throughout grammar school,I was either teased or bullied. When kids are taunted because, like me, they have "Pick on me, I am sensitive," emblazoned on their foreheads, is there much difference? Either way a child is meant to feel as if they are not as good as everyone else. Kids know innately when someone is sensitive and vulnerable. I don't need to read "Lord of the Flies." When you are a sensitive kid wishing, hoping, praying that other kids will like you, that is your life. And when, like me, you don't have any real refuge at home, you wish you were dead. Eleven year olds should not be wanting to kill themselves. But they do.And some succeed. Or rather,they fail to grasp that there are benefits to staying alive.They fail to see that suicide is, as some glibly put it, a permanent solution to a temporary situation.The pain feels permanent.

When i was eleven, we moved from Chicago's Southeast side to the suburbs. I thought, new town, new school, I'd have a respite from the bullies. Start over. I was hanging up my jacket on the first day of school when I saw a face I hadn't seen in several years. Was a bully who had moved away three years earlier. He recognized me straight away. "Miller, you are gonna get it!" He made sure that the other kids knew who I was. His best friend was in a nearby classroom. And the best friend's cousin was in my classroom. I had also left behind the mean girls, only to find myself besieged by another set of mean girls.

My desire to end it all was childish, yet my pain was very real. I imagined my funeral. People were gonna stand around at graveside and wish they had been kinder to me. I suppose that, in the case of suicides, the more realistic scenario is that survivors are angry with the person for giving up. No doubt there is some guilt thrown in for good measure.

On Columbus Day 1969 I went down to the kitchen. Instead of joining my folks at the breakfast table, I opened up the knife drawer and started testing knives for sharpness by placing my finger tip against the edge of each one. My dad sat there frozen, but my mom asked me what I was doing. I told her. She got up from the kitchen table and had me close the drawer. I followed her upstairs to my bedroom, and we sat on the bed and talked. She talked to me about how suicide is against God's law. I don't know if that argument would have worked on me if I had all ready been an atheist. All that matters is that it worked then. Mainly I think I realized how hurtful my actions could have been.I still remember the stricken look on my dad's face as he sat there at the table. Even without my mom saying a word to me, I think I knew how much pain I would have caused him. In my self pity, I had not considered how my actions would affect others.Just that I wanted them to be sorry.

Even as I was testing knives for sharpness, I knew I couldn't have gone through with it.I've always had an aversion to sharp objects. If I had escaped upstairs with a knife, I am certain I would have broken down sobbing instead. The pain was real, but the drama made it almost laughable. I got the attention I wanted,but scenes like this is why I occasionally refer to myself as a drama queen in recovery. It's not those of us filled with drama who people have to watch out for. It's the quiet ones who don't come down to the kitchen to test out knives with a dramatic flourish who we need to watch out for.

One can live past childhood, but unless one undergoes therapy or similar there is little way to get past the scars left behind by bullying. The watershed moment for me was in eighth grade when I finally stood up to bullies. All throughout junior high I was afraid of these boys. Eddie was the ringleader. Steve was the big, dumb one,and Paul was the short one. Paul may have been small, but he was great at dumping books in the hall. There was also Mike, but he was not really one of the bullies. He just happened to be Eddie's best friend.

In junior high I was in drama club. On those days I didn't fear the bullies because I stayed after school. The bullies had already gone home. On days that I didn't stay after school, I was often quasi chased by them. They didn't make me run, but they made me aware of their presence. I walked very fast on those days. One winter afternoon,I slipped on the ice right in front of Eddie's house. I had been wearing a skirt that day, and I tore my hose and skinned my knee. As I struggled to gather up my school books and get up, Eddie was crowing triumphantly, "Spit on her! Spit on her!" I turned to him and I said, "You son of a bitch." Eddie's older brother stood there in the opening of the garage. "What did you call him," he asked menacingly. "I called him a son of a bitch," I answered defiantly, all the while certain that, at that moment, the four, five of them were going to gang up on me.To this day it surprises me that neither of those boys made a move to wallop me. There were, to my knowledge, no adults around.Who knows what they could have done to me in that subdivision. But they didn't.After a tense moment, they let me go on my way.And they never taunted me again.

No one had taught me how to fend off bullies.Not my mom.Not my dad.Not my older brothers.Not any teachers.Not any friends.Took me years to figure it out.When a person asserts oneself, they are standing their ground.When I called Eddie a son of a bitch, I was clearly angry.I did not yell.I did not scream. It was a tense few minutes, but very little drama. That is how we stop bullies.We assert a quiet authority.

Last March when the DCFS investigator towered over me, and insisted I had to take Kid O to the ER right then and there, I stood my ground. I was quaking inside, but I still managed to calmly state to her, no, I wasn't going to take her to the ER for an alleged scratch. I told her that I would take her to the pediatrician's office first thing in the morning. She started to try to reassert her authority, but she backed down.

It is wonderful when kids have others to back them up, whether it's other kids or adults. Ultimately, however, kids are going to grow up and they will have to face bullies on their own. It is important that we teach kids how to be ethical, honorable and authentic human beings who know how to be calm in the face of adversity. If we do not teach kids how to be independent, self-assured adults, then we do let the bullies win. Victims will continue to be victims instead of survivors.

It's especially important that we, as a society, shift from the language and mindset of victimhood to the language of survival. It is not just for the sake of political correctness that we do that. It is so that we can facilitate the shift in many people to accept responsibility for themselves and their own survival. Women are not rape victims, for instance, but rape survivors.We do not talk about Holocaust victims. We talk about Holocaust survivors.

We are all responsible for the culture that in which bullying thrives. We all need to participate in the prevention of bullying. More importantly we need to all be responsible for how we talk about bullying.If we talk about victims instead of survivors, then we perpetuate that idea that someone bigger and stronger will always take out the more vulnerable amongst us. Each and every one of us, former bullies and former bullying survivors alike, are responsible for this paradigm shift.Language is powerful.How we label people and actions affects how we think about them and ultimately how we react and what kind of behavior we display. In this particular instance we cannot afford to be careless in how we use language. We need protect the more vulnerable members of our society, but we also teach them, as best as we can, how to fend for themselves. We need to help them how to grow up to be strong, self assured adults instead of weak, dependent ones.

Equally important as the shift in language is shift in consciousness from that of a bully to that of a compassionate person. When I was in eighth grade, I was standing in the lunch line with C and L, who were my fellow misfits. C, upon realizing she was no longer being picked on, decided that she would then pick on L, who had the misfortune of being covered with acne and who had a terribly nasal voice. I didn't say anything to C, but it was the beginning of the end of our friendship. I realized then and there that I did not want to be yet another mean girl. Right that moment I chose compassion.

We need to do more than simply teach children how to be survivors.We teach them to be ethical, honorable and compassionate as they become adults.We teach them how to share. We teach them to be generous and loving, not selfish and self-centered.We teach them how to be forgiving. If we do not do these things at this critical juncture, then we will ultimately fail as a society. This is our moral imperative. Not just parents. Not just educators. All of us.

Sunday, January 23, 2011

Special Needs Kids Arrive, No Patron Saints or Guardian Angels Included

I don't know if Erma Bombeck ever had a special needs child, and I am not one to pick bones with the dead. Overall she presents a nice image of the mother of special needs child, but some of it comes dangerously close to the kind of sentimental claptrap I have been railing against for years. At the end she says:

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

For a woman with less emotional wherewithal, more than a mirror is needed. Bombeck assumes that all mothers of special needs moms will somehow all be strong, and, once the shock wears off, she will do just fine. The shock, anger and grief diminish over time, but they never really wear off.

I remain haunted by an event that took place almost ten years ago. Kid O was invited to a birthday party, her first and last. My husband stayed home with the baby Kid Q, and off Kid O and I went. Her classmate's family lived on the second floor of an old walk up apartment. The apartment was dark. The apartment was packed with people, however, a mix of the dad's family and the mom's family. They had hired a clown to entertain the ablebodied kids while the two disabled kids were largely ignored, tucked away on the couches in the living room. Both kids, KId O and her classmate, A, very much wanted to be included. Despite the fact that their son was celebrating his fifth birthday, there was no joy in that apartment. A's dad was a very angry man. A's mom looked really sad and resigned. My heart went out to her. Even as she was surrounded by family, her sadness was very apparent. A wore AFOs and so he could stand but only with assistance. No one seemed interested in helping the birthday boy join in the fun. A's dad wanted me to join him in his anger and resentment. I would not.

As these two five year olds sat in the recesses of the apartment, A's dad turned to him and said, "I don't know why we hired a clown. We already have you." I filled with grief for the son and for the mom to be saddled with such a horrible man. How could he be so unkind to someone who depended on him so? I understood the resentment at being denied what everyone else had to seemed to have: a "normal" child. What I couldn't understand was A's dad lashing out at him in such a cruel and public way. A may have been only five, but he understood that he was far from what could be desired in a son.

I could also not understand the obliviousness of the rest of A's family. I suspect, sadly enough, that A's mom felt too downtrodden to ask them to see to it that the birthday boy was included, and A's dad was too filled with rage to care. It was A's birthday, and he was being ignored by his entire extended family. I could not fault the clown. She was just doing what she was asked to do, and that was entertain the kids. She largely had them participate in races such as she could in that cramped apartment. I motioned for the clown to come over. She had those banner ribbons that kids so enjoy, and I figured that, at the very least, these kids, with assistance, could play with those. She gave me a ribbon banner and she gave one to the birthday boy. And for a few moments on that dreary day, those two kids were part of the fun. Kid O lit up when I placed the banner in her hand and helped her wave it around.

While it's comforting to think that all special needs kids go to strong women with great senses of humor, it doesn't align with reality. Even with family and friends around, a parent can feel horribly alone and left to despair. The grief is real. The anger is real. The sense of betrayal all the more so. If, as Erma Bombeck wrote, special needs children do not come with patron saints or guardian angels, then God, assuming there is one, has some explaining to do. At the very least someone needs to explain to me where to go and get one, like so many triple A batteries so I can get recharged.

Raising a special needs child can be exhausting, especially when a child is severely disabled. Everything needs to be done for them. That's becomes even more demanding as a child gets older. At the very least I could do with a guardian angel who could lend a set of hands to make the work lighter. Kid O is probably around 70 pounds and around five feet tall. She is not a passive sack of potatoes when she is carried from her wheelchair to some other chair in the living room, for instance. She may cooperate or she may kick and bare her teeth as if she were going to bite me. She may also scream or shriek. She is not passive, to say the least, and, frankly, I have yet to know a child or young adult of any age who is. Kid O has little autonomy, so it's understandable that she may choose to express herself in various physical ways.

While it's true I am patient, have a great sense of humor and at least a little bit selfish, I still have times when I feel I just cannot move another inch. I cannot imagine what it would be like for someone who doesn't have my inner strength. Having any child is not for the faint of heart, let alone one who turns out to be a special needs kids. Parents of "normal" kids have enough challenges, let alone parents of kids with special needs. And sometimes people who have "normal" kids crack, too. You read about it in the papers. 'Cause kids are kids first, and they disabled or have special needs second.

My mom, the pragmatist though she is, has this odd romantic streak about marriage and children. Everyone should get married, and everyone should have kids. Kids can be wonderful, but, as any honest person will tell you, they are a lot of work. And some people are not cut out to be married let alone have kids. We all have curves thrown our way as we go through life. We cope the best we can with challenges. Some cope better than others. Whether this is through attending a support group or going to therapy or actually having good family and friends to support us, it's important to have someone or something. And that even includes God. I don't believe in God, but I do not ever knock those who have faith. Sometimes, though, none of that is enough. Some people simply are ill equipped to deal with life, and a special needs kid may be the thing that sends them over the edge and into the chasm.

What many of us need and seldom get is the support of that elusive village. Families are spread out. Friends work. People often have their own problems. Often we don't ask those with extra burdens how they are coping or if they need anything. Too many parents flounder about. They feel overwhelmed. Perhaps they are embarrassed to ask for help or don't know where to go to ask for help. Or they think they ought to suck it up and go it alone, even as they are going down for the third time. And taking their child with them. Solutions that may seem obvious to someone else is not necessarily obvious to a parent right in the middle of trying to figure out why this child came along and turned their lives upside down. Many times we know what the solutions are. We just don't always have what it takes to bring those solutions about.

If I cannot have a village, then I'd at least like to sometimes have an extra pair of hands. Or maybe someone with wings.