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.  

Go Ahead and Scream. The Neighbors All Know What You're Like

Grandma had dementia. Or perhaps she was mentally ill. No one ever said. But she was definitely "troubled," as people so quaintly say. I don't know what life was like for her in the old country. I would guess she saw some really horrible things. Ukrainia is known by Jews as the "Anti-Semitism Capital of the World," and so it wouldn't surprise me if she witnessed pogroms firsthand before embarking on a boat headed for Ellis Island. I'll never know for sure.

Grandma was not unkind to me, but she definitely did not conform to the kindly grandma stereotype. Her apartment was not kid friendly. It was barely anyone friendly. Plastic covered everything. The carpet. The couch. Everything. She kept everything spotless. Whenever we visited there, I never knew quite where to sit. I didn't want to sit on the couch. I used to sort of wander around the living room and the sunporch, not sure where to really be. Grandma actually did some nice things for me. She gave me a stuffed dog. I used to make up a voice for him, and we used to have some good conversations. A few years later she gave me an old transistor radio. I used to lie in bed and let that radio take me all over.


On Friday afternoon Grandma would call and say in her heavily accented English, "I'm lonely. Come and get me." We would drive across town and pick her up. Every weekend she would sleep in the spare twin bed in my room. I really didn't want to have to share my room. I wanted and needed my room to be my haven after a week being teased and bullied by school kids. I didn't know how to speak up for myself. I knew implicitly best not to complain. On one hand I was curious about her. She was my grandma and I wanted to know about her. On the other hand I wanted to protect myself from her. I used to do silly things like give myself cootie shots. One time I tried to rig a string that would, in theory, turn the swag lamp on when she opened the door to finally go to bed. There wasn't enough tension in the string to trip it.

Grandma wasn't a bad roommate, really. Despite seeing her teeth in a glass and seeing her in her union suit, we had some companionable moments. What I didn't like was when she would get into arguments with my dad. I also didn't like how she would go around spraching in Yiddish, and I didn't understand what she was saying. "What'd she say, what'd she say," I'd ask my mom. "You don't want to know," my mother would respond. But I did want to know. Gave me a great deal of anxiety not to know. Many years later I found out she was accusing my father of being a thief, among other things. Confirms for me, in retrospect, that she did have some degree of dementia. No one in their right mind goes around accusing others of thievery. And who knows what else she said.

One Sunday my grandma, my father's mother, embarrassed him in public. Not much of the public around, being a cool spring day and only a handful of people looking at the model homes we had driven out to see, but he had had enough of her outbursts. As we were exiting one house and on the way to the next, my grandma, who had chosen to stay in the car, called out to him that she did not come to 'babysit your car." We left for home posthaste.

Once back at our house, my dad grabbed her suitcase and started furiously shoving things into it. My grandma decided she wanted my mother's raincoat despite the fact she was too large for it. Despite my mother's protests, she was determined she was going to wear it somehow or other. I am not sure what happened next, but, before I knew it, my grandma had my mother pinned against the wall. I could barely speak up, but I managed to tell my dad what was going on. He tore her off of my mom, and he and my mom hustled her out the door to the car. Grandma held onto the doorframe with all her might. She was daring my mother to push her into the car. "I'll scream! I'll scream!" she said. My mother responded, "Go ahead and scream. The neighbors all know what you're like." And, with that, she docilely entered the backseat.

I wish I could say "go ahead and scream," to Kid O when she screams and either kicks furiously or turns herself into the Human Board. But I cannot. When she refuses to cooperate in getting into her carseat, all I can do is summon up all my might and pick her up repeatedly until I finally managed to get the buckle to snap shut. Then Kid O can scream all she wants. And I can sit there and catch my breath. She does this whether or not there are onlookers. She even did this on one occasion when we were giving her cranial sacral therapist a lift back to his apartment where his broken down car awaited him.

One time after an appointment with him, she put up quite a fuss. I thought maybe the fella nearby could help me. But, see, he thought she had a spinal injury and I was forcing her to bend. In his accented English, he kept telling me that what I was doing was bad. After I got her into the car and her wheelchair tossed into the back, I thought perhaps it might be good to approach him and explain what the situation was. Again he told me that I was doing something bad. And I could see from the looks on his wife and children, they thought so, too. It was then that I saw the wife's cellphone by her side, and I knew it was best to leave. Right then a squad car came by. At first I thought they were going to roll by, but then they stopped.

The one police man got out. He asked to see both Kid Q and Kid O. I opened the van so he could see in. "Which one is in the wheelchair," he asked. So I pointed to Kid O. "Did you hit her," he asked. "No, I did not," he responded. Satisfied with that, he let me drive off. On the drive home, I was trying not to cry. Neither girl let out a peep. I explained to Kid O that she needs to think about someone other than herself and that she could have gotten me into serious trouble. I explained to them that I could have been arrested and taken to jail, and that they could have been sent away. I exaggerated a bit for effect. And "daddy and I would not be able to find you." Worse case scenario, we would have found out but it would have taken a while, going through the court system.

When Kid O screams bloody murder, it's natural that people will assume that I am abusing her, even though I neither raise a hand to her nor raise my voice. They don't understand that, on account of being severely handicapped, that she has very little autonomy and so that is her only way of getting any. Kid O listens to me but then she resumes her bad behavior. Part of that is my fault. We have never really disciplined her because I have always been afraid that people will hear her crying and assume the worst. And, as you can see from One Primal Scream Will Get You Three... Cops, That Is that people have begun assuming the worst ever since she was a baby. I have been looking over my shoulder since then. I rarely feel safe whether it's in my own home or out in public. If people see my struggling to place her into her carseat, they go the other way. Or they make a phone call.

The neighbors ought to know what Kid O is like, but, problem is, they don't know me. They also don't understand that cerebral palsy happens either right before, during or after birth. I imagine that some even assume, like one man who had his wife call the police, that Kid O has a spinal injury and they assume even further that I must have somehow caused that injury to happen. That leaves me in a very isolated position. I am often left with no one to help me, even when I need it the most. So, instead, the neighbors think they know what I am like. It's not pleasant, but it's understandable. We are conditioned these days to have a kneejerk reaction to a screaming child. A parent rarely, if ever, receives the benefit of the doubt. Possibly from other parents who can remember their own screaming children, but, as I have discovered, people often develop a certain amnesia about these things. Their children always behaved well in public. Their children were never overtired or unreasonable. Their children also always played well with others. And so it's impossible to receive any compassion from someone with such selective amnesia, because, of course, they always had it together as a parent. They were always organized. They were always even tempered. They were always fair minded. They always were well rested.

Back in the 60s when this drama unfolded between my grandma and my folks, the neighbors knew them. And they knew her. And so they did know what my grandma was like. These days its possible that someone might allege elder abuse. And they would do so because many of us live increasingly isolated lives. We are more fearful of each other than not, and that means that people like me do not get the help we need and our feeling of helplessness and isolation increases. How many times have I or any other caregiver been asked how we are doing? I don't know about them, but I can count it on one hand. My mother does not count. Of course she is going to ask. She is my mother and she cares about me.

I cannot blame the neighbors. Much as I'd like to. They could be friendlier, but so could I. Because I have been burned so many times, I am wary. I hesitate to ask for what I need, and, in turn, I continue to have neighbors who don't know me. And, while they may not be judging me, they don't know how to approach me, either. And that is a shame. Not just for me. But for them, too.