Dancing Backwards And In Heels: Parenting A Special Needs Child

"And then there's Adult Protective Services," the school nurse said.  "Crazy, huh?"

Crazy, huh. I restrained myself from asking her, "Do you realize what you are saying?"   I don't think that, unlike previous remarks, this was calculated.  I think she was acknowledging that she was just one overzealous mandated reporter in a system that rewards such behavior at the expense of parents like me.   She also mentioned that other school nurses would be worse than her.  If they are, then those of us with special needs kids are in deep trouble.

Parenting is never easy.  There's always things that come up that one would never expect in a million years.  You love your children, but sometimes you want to disavow any knowledge of them.  "That kid?  Never saw her before."  

Parenting a special needs kid, however, is, to borrow a pro feminist slogan, "dancing backwards and in heels.".  A parent with a special needs kid is being scrutinized in a way that a parent of a "normal" child can neither begin to imagine nor be willing to put up with.

From the moment Kid O entered the world, I've been subjected to the worst kind of scrutiny.  Because she was a preemie who weighed only 3 lbs, 10 oz, her birth was reported to the Department of Public Health.  I was terrified when a nurse showed  up.  She was nice about it, but I understood the implication. Underweight premature babies were assumed to be given birth to by mothers who were poor, ignorant, and who hadn't sought out prenatal care, and, in a word: neglectful. 

One day, as I was getting ready to take Kid O on the train to see my folks, two public health nurses, a man and a woman, practically barged through my door. The man would not take "no" for an answer.  I uttered utter a mild protest, stating that the regular public health nurse had told me that she would be the only one coming around.  He told me that that nurse was on vacation.  Even though I knew I had rights, I was afraid to say "no."    Much to my shame and horror, he insisted I hand  over Kid O for a surprise inspection. I watched, speechless, as he took her over to her bassinet and undid her diaper.  It was only after that that I had the wherewithal to call the Department of Public Health and canceled subsequent visits. 

My neighbor, who had had a near perfect homebirth and a nice, large, full term baby,  brought by literature on pre-eclampsia because she felt I needed to  take responsibility for Kid O's prematurity.  She was smug in her knowledge that her expensive birthing class had produced nothing but perfect births and perfect babies.  She was certain she was a far superior mother, so imagine her surprise when she couldn't console Kid O one morning  Months later she apologized to me because one couple in her birthing class had a child with CP, and were being forced out of their condo on account of the baby's screaming.  

Now, granted, it's damned uncomfortable listening to someone whose only means of communicating distress is to go all primal. Imagine how it impacts the parents of such a being. There are times when I still get so rattled that I feel like a shooting gallery duck.  

Babies can be fussy.  They are wet.  They cry.  They are tired. They cry.  They are hungry. They cry. Ordinarily if you put a baby in their carseat, they will fall asleep.  Same thing if you put them in their stroller.

Kid O had such a disorganized nervous system that these tried and true methods did just the opposite.  Put her in her carseat and she would cry hysterically  to the point of throwing up all over herself.  That didn't stop until she was around four. 

People assume that if someone requires help with toileting or feeding or dressing that they are physically weak.  Kid O is not without her ways of resisting something she does not want.  Just because she doesn't have a lot of muscle mass, doesn't mean that being kicked by her wouldn't hurt.  The girl packs a mean mule kick.  

Some mornings it takes two of us to get her into her wheelchair.  One to bend her legs and keep her from extending her hips, and the other to strap her in. There have been times when I have had to deal with Kid O turning herself into a human board.  Eventually I would prevail, but not without an average of twenty minutes of cajoling and heavy lifting, which would leave me gasping for air.  

To a casual observer, it probably looks like Kid O is screaming because her mother is abusing her.  .Instead, I am being abused by people who, over the years, have jumped to painfully wrong conclusions including an allegation of sexual abuse

I don't begrudge women their perfect children.  I just always wanted the same thing.  And, barring that, at least not to be thought of as if I were some criminal. Unfortunately, my circumstances are not that unusual.  I have read of instances of special needs children removed from their parents simply because these people are flawed human beings.  For some reason people think they can raise Kid O better than my husband and I can.  I had one woman start a whisper campaign against us.  Why?  Because on the morning she came over, we were feeding our daughters *gasp* toast and jelly and not a full breakfast.  And so it goes.

People have no idea how difficult it can be to guide a special needs child to adulthood.  They have no idea how incredibly stressful it can be.  They contact DCFS without considering how unnecessary and how hurtful it can be.  

The last time DCFS was called out, we hired an attorney to join us at a meeting at Kid O's school.  My husband made a point of mentioning my high blood pressure. The teaching staff received his meta message loud and clear, "If anything happens to my wife..." I was grateful for his protectiveness.  I could  see Kid O's teaching team shift from being on the offense to realizing what harm they could cause.  Do people not consider how devastated Kid O would be if she were removed from the two people who love her and understand her better than anyone in the world?  

When I am not being considered a criminal, I am being placed on a pedestal. When I fall from that pedestal, people become incredibly disillusioned with me. Neither place is comfortable.  I have never asked for people to worship me. Respect and compassion would go a long way to acknowledging me and other parents of special needs children.    We are neither sinners nor saints.  We are just people who happen to face enormous challenges every day.  And, hopefully, with a tremendous amount of grace.  

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!."

What the Nurses Saw: A Dark Farce In One Blog Post

Hard to imagine that three women could so badly mistake an underwear crease for a scratch, but they did. Perhaps the nurses convinced the teacher that is what it was. The teacher was genuinely concerned about skin break down which can occur when a person sits in a wheelchair for long periods of time and knees together. The way she chose to deal with, or, rather, not deal with the information, is what set this dark farce into motion. She told the two women, "handle this for me." What she had intended was for one of them to call me and tell me what they thought needed to be addressed, sooner rather than later. What one of them did was contact the Department of Children and Family Services instead.

And, so, on the afternoon of Thursday, March 25, 2010, I came this close to losing my children. And possibly my freedom. Given the location of the alleged scratch, it's likely that the assumption was made that this was no run-of-the-mill abuse but likely sexual abuse. At least that is what comes to mind when I put scratch and labia together. The investigator made it really graphic. "Some people use utensils." I wonder if I looked as horrified as I felt. I think I gasped. I felt vaguely nauseated.

I was disturbed that anyone could even begin to entertain that thought about me They wouldn't, if they knew me. Even a little. They wouldn't if they knew how much I love Kid O. They wouldn't if they knew how she is the child of my heart. Now, granted, abusing someone and loving someone is not mutually exclusive. But I would wager that people who abuse their own children don't really love them, but that gets into deep psychological and emotional territory that I can only hazard a guess at. I am only qualified to talk about me and my feelings.

I won't lie to anyone. There have been times when taking care of Kid O have felt as if it's a soul crushing experience. There are times when I feel the resentment rise inside of me. But when I stop thinking about it as caregiving and more in terms of doing something for someone I love, that attitude softens considerably. There are times when this feels like drudgery, and, if I am not careful, I can start to feel burnt out. When I am more able to accept things, then there can be moments of joy and love and affection. More than that. Great good humor.

Kid O has a wicked sense of humor. If a person looks in her eyes, they see more than her humanity. They see her capacity to express much mirth. Her laugh is infectious. I can forgive her just about anything, over and over and over again. When I think about Kid O's laughter, I cannot imagine being separated from that mischievous sprite. Or from my magical younger daughter, Kid Q.

That Thursday evening my husband and one of his sisters examined Kid O, because, naturally, we took this very seriously. They were perplexed as to what was being reported. My sister in-law said to us that all she could see was a crease. The following morning the pediatrician and I saw the same thing: a pull up crease. And, what I didn't realize, but in that moment, I was exonerated. Also what I didn't know until a month later, was that I was the only one being investigated. The person making the allegations had never considered that my husband would do his share of the care. Just as well that it hadn't occurred to her, given the circumstances. When I mentioned that to the investigator she said, "Isn't that a girly thing?" I am thinking, what if we had been divorced and he had part time custody? What would he do then? Or worst case scenario, he'd entirely be a single dad. Or what if Kid O had been a boy? Would it be awkward for me to care for him?

Essentially then much ado about a crease that was presumed to be a scratch. How is it that three professionals could not tell the difference between a crease and a scratch? A crease is reddish but flat. A scratch is bumpy, reddish, probably scabby and definitely inflamed. The only description that was accurate was length and width. Purely a superficial resemblance. A perplexing conclusion, assuming that the report was not made with malicious intent.

What is still jarring is how quickly things can change from a OK day to a really horrible nightmare. Because reports can be made anonymously, there is no such thing as a heads up. No way to mentally prepare. There is a sharp rap at the door. No time to pick up the house. No time to tell Kid Q to put on some clothes. Suddenly I have a woman in my house towering over me, tapping her finger at the report and insisting I take Kid O to the pediatrician RIGHT NOW. I explain that by the time I get the carseats back in the car the pediatrician's office would be closed. Then she insists I have to take Kid O to the ER. I tell her I am not going to take her to the ER for a scratch. Then I say that even if I wanted to, what, indicating Kid Q, would I do with her? I look up and see that Kid Q is wearing nothing but underpants, and is dancing about with a unicorn on top of her head. I am wincing, but I have since been told that Kid Q being so at ease and friendly may have been what saved my sorry ass.

There's a joke in there somewhere. Take a seat. Have you heard the one about...

Imagine That. Kid O For a Day.

The following is my contribution to Blogging Against Disablism Day, which is May 1st. http://blobolobolob.blogspot.com/2010/04/blogging-against-disablism-day-will-be.html


Imagine that you awaken one morning to discover that you have metamorphosed into a fourteen year-old girl who is severely handicapped. You find yourself suddenly strapped into a wheelchair. You cannot reach the wheels or the breaks, so you cannot go anywhere. Your wheelchair does not have a power joystick attached to a battery pack. And, even if you had one, your fingers are unable to bend so that you could use it.

Imagine that you no longer have the ability to speak. The only voice you have produces the most primal of sounds. You can scream. You can shriek. You can cry. You can also laugh and make babbling sounds. You cannot use your hands to gesticulate because they are too spastic. That means that sign language is out of the question. You also do not have the dexterity to text or write. Imagine that you don't have any assistive technology. You can only answer yes/no questions by moving your crippled left hand to some ablebodied person's outstretched hand. Since they are on your right side, you must slowly move your left arm across your body to accomplish this. Your default answer is yes.

You have to rely on others to feed you, clothe you and tend to your every need. Miraculously you can use the bathroom on your own, but that is the only thing you can do for yourself. The real Kid O cannot. Because you have to rely on others and they are not telepathic, you need to be flexible. You have to wait for a caregiver to help you. You are allowed to whine. It may be that caregivers are tired. Or maybe they are in a bad mood. Or maybe they are otherwise occupied. Sometimes these things cannot be helped. You can be very vocal about it, or you can wait silently.

Imagine that people don't talk to you. They talk around you. You can hear and understand everything is being said, but, because you cannot express yourself, you are treated as if you are incapable of understanding even the simplest of things. Even some of the people closest to you, who you know love you a lot, infantalize you by having the most simplistic conversations with you despite evidence that you comprehend well beyond that. You can forgive them for that because you know that they mean well and that they want what is best for you.

Imagine people don't look at you but through you. Imagine them never looking in your eyes. Imagine that you are bored to tears because people around you are only giving you two options to choose from. Imagine they misinterpret what little you can do as lacking in intelligence. Imagine that they do not understand that the game you devised of ablebodied fetch serves a twofold purpose: you practice your dexterity, and it's one of the few ways you have of interacting with those around you. Imagine that, because you cannot speak, that you are denied assistive technology because people need to know first if you can tell the difference between blue and yellow before they will give it to you. You refuse to answer because you think it's a silly question. You don't want to activate the switch because the recording still has your dead teacher's voice on it, and hearing her makes you sad. You are relieved when your mom bends down beside you to ask you if that is why you are reluctant to use the switch, and they agree to record over your teacher's voice.

Imagine that little kids ask your mom if what you have is contagious. That is OK because they are little kids. They want to know about you. You wish they didn't feel uncomfortable around you. You know that your mom was upset one morning because she discovered the word "mental" written in chalk on the masonry. You also remember when the boy grunted at you when your mom was rolling out you to the school bus. You know that people don't honor your humanity. You also know that many people do. You know that if they were to look in your eyes, that people would see your indomitable spirit and understand that you have a wicked sense of humor. You also know that it doesn't matter what other people think. You are exceptional.

My Beautiful Mystery

i discovered, as an auditorily centered individual, that I am a receiver. That is what has made it possible to read Kid O the way I do. Of course, she is my heart, so why wouldn't I? It is not telepathy. But when you take care of someone, and they cannot speak and they came from you, concentration is everything.I have always had to work harder at figuring out what she needed. I was determined to figure it out. I remember looking deep into her eyes. Almost as if I were connecting soul to soul. You'd think that when a woman carries a being for close to nine months, it's be second nature. But it's not, especially early on. There is no common language. She was and remains my beautiful mystery.

There is sad violin music that accompanies us. A single refrain. Sad, lonely, imploring. Beseeching her to please speak. It is not so tragic, but it was at the beginning. I felt it deeply. I was felt such desperation. To bring a being into the world and never be given the chance to hear her voice... utterly heartbreaking. At least at first. I did wonder, in a self-centered fog, did I do something wrong? Not why her but why me. I still wonder that sometimes, but the feeling has diminished over time. There is communication. Just not in the conventional sense. I discovered, over time, I needed to listen with my eyes. I needed to look into her eyes, and, when I did, the spark of being was undeniable. They say that speech is God's alone to give, but the divine spark is within her if one but pay strict attention. I had to pay strict attention in order to discover what she needed. And, later on, to understand her as a person. How can anyone deny her humanity? And, yet, under the misconception thatspeech is what makes a person human, many overlook it. And that is what I battle against year in and year out. That outrageous ignorance. It is maddening.