Thursday, March 20, 2014

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.