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.  











Thursday, February 27, 2014

My Music Conveyed You To Me

Note:  A dahabeeyah is a kind of barge like boat on the Nile

 I wrote this poem in early 1993 to my husband when we first fell in love.

My music conveyed you to me
a sympathetic symphony
murmuring my heart's rhythm:
Love you I, you love I, I love you.
You are the still water running deep
through me. Effortlessly I glide along
on my dahabeeyah content to lazily
uncover you:  my life source.

Monday, February 24, 2014

I Pledge Allegiance To You, Chicago

I pledge allegiance to you, Chicago.
I pledge allegiance to your four starred flag
To your slanted streets and movable bridges.
Hegewisch to Edgebrook , Uptown to Bucktown,
Bronzeville to Beverly, Pullman to Pilsen.
Roseland to Ravenswood, Woodlawn to Lawndale.

I pledge allegiance to you, Chicago,
To your wind swept politicians, newsmen
Rooted in subterranean taverns, 
Colorful mayors preserving disorder 
City that works for those willing to work it.

I  pledge allegiance to you, Chicago,
To your screeching el trains that loop around
To your crazy lake and backwards river.
A constant stream of ethnicities.
A tangle of flags, churches and eateries.

I pledge allegiance to you, Chicago.
This broad shouldered woman loves you.
Many faceted rough cut diamond
You've got combustible character.
My fiery city, second to none.  

Monday, February 10, 2014

Momma Don't Take My Grit Away

My grit is my scarlet lettered badge of honor.
It is the cross I scrape across the pavement
It is a boulder sized shoulder chip.
My grit is what I rub in your face when
You ignore my loud suffering.
My grit is my oh so pretty brand..
She has become incidental.
My grit has become soul powered,
Sending out puny waves of rage.

Momma Don't Take My Grit Away.
Momma Don't Take My Grit Away.
Momma Don't Take My Grit Away
From Me---ee--ee.

My grit grows exponentially with each
Retelling of things that befell me.
Glorious feats of fraudulent motherhood.
My grit lays out a magnificent feast
of falsehoods,elaborate lies I slurp up.
If it weren't for this self betrayal,
I would collapse in anguish
My grit isolates and insulates.
My grit nails me to a wall..  
Allowing me to rejuvenate.
So I can survive to equivocate
yet another day.

Friday, September 6, 2013

Home Is Not a Field of Poppies

One man sleeps on pizza boxes. One man swears someone planted the needle on him.  One woman promised her dad she would quit even before she started.  One woman sits in her car idling in the garage.  Her coke sniffing boyfriend rescues her.  He drunkenly pleads to his erstwhile lover, "Mommy, I want to come home."  It takes all of her strength to keep from saying, "Of course you can. I'll come and get you."

You can come home, but it involves dropping a house on a witch, putting on her ruby slippers and scampering along a yellow brick road where, at any moment, flying monkeys might swoop down and snatch you away.

Traveling companions may present themselves to you, but they may not be as benevolent and protective as Dorothy's were. They are just as likely to lead you astray as point you in the right direction. If you're lucky, they won't steal your  wallet while you sleep it off in a vacant lot that you fancy to be a field of poppies.  

In real life, scarecrows can appear to be downright menacing, but that is just your overactive imagination magnifying shadows strictly for dramatic effect.  Once you catch on to what a scarecrow does best, which is try and frighten the bejesus out of you, you discover that it is all bluster.  

Just like the tin man, you might feel hollow inside.  You might feel a need for others to nurture you.  Some will.  Many others will not.   This doesn't make them bad people.  They have their own problems, and, they, too, need more than they have capacity to give.  So you need to find a way to give yourself what you need. Discover what is within you.  Remember, "Oz never did give nothing to the tin man that he didn't didn't already have."  




For the journey you are on, you will need the heart of a lion. A road to recovery is neither for the faint of heart nor for the feint of heart. Your heart does not give you courage.  However, you need to look into your heart to find it.   

Draw back the curtain.  For the sake of your integrity, you need to know who or what lurks behind.  Once you know,  you can decide if you really do want to go home, and, if so, how to get there.  Forget about using roadmaps or GPS. You need to navigate using your own interior constellations.

You may choose inebriation over sobriety. Emerald City has its charms, but after a while the glitzy veneer wears thin.  You may choose the wizard's sentimentality because it's easier than examining authentic feelings.  

If you choose recovery, then you very likely will experience discomfort.  You may come to realize that you have harmed others as well as yourself.  Forgive yourself as often as necessary.

If you miss the hot air balloon, remember that you will always have the ruby slippers to fall back on.  You will have many second chances.  Hopefully you will arrive home where you can rest your weary head and heal your heavy heart.  

Hi.  My name is Debbie.  I am an emotional eater. When I started being bullied at five, I turned to food for comfort.   My mother enabled me.  "You had a bad day.  Have some ice cream." 

I, too, have been an enabler.  It is  only now that I have realized that I have either known addicts or I have known people who have known addicts.  Doesn't matter what the substance or compulsion has been.  We all have had our more vulnerable or fragile moments, and we all search for our way home.  Wishing  us all serenity.  








Saturday, March 16, 2013

She Has No Discernible Voice. Yet.


She has no discernible voice. Yet.
Her sparkly eyes speak for her.
Ordinary minds avert their gaze.
Unimaginative voices refuse to hear hers.
Her voice offends their senses.
They insist she quell her primal yawp.
She is our humanity laid bare.

I speak about her, but not for her.
We have barely scratched the surface of her mind.
If she speaks, we gain entry into
a richly veined interior world.
She cackles at the futility of
their deny ability.
They are ill equipped to comprehend her intellect.
They deny expression of mind but not of spirit.


Her education is our education.
She is both teacher and trickster.
Her tale is one seemingly told by an idiot.
Her smile and eyes refute that.
Considered mental, she refuses to step aside.
She will not disappear into the woodwork.






Sunday, December 23, 2012

I Am Miss Shuganah: A Heart Centered Woman Living in a Head Centered World


People sometimes approach me on Twitter and tell me my handle is one of their favorites. I thank them.  That indicates to me they get the joke.  Misshuganah or meshugana means "crazy" or "crazy person" in Yiddish.  

I was a very emotional child. Sometimes to the point of hysteria.  My mother will tell me, "You need counseling." An unkind, compassionless thing to say.  I imagine she was frustrated because she didn't know how to help me.

My father, who I was more alike than either of us would have wanted to admit, would routinely push my buttons and then when I would demand an apology from him he would say, mainly to my mother, "Get this mad bulldog away from me."  My brothers, I suspect, shared my mother's assessment of me but kept it to themselves.

From childhood on, I have been called crazy in one form or another by people who have confused my emotionality with mental illness.  Being emotional does not equal mentally ill, although, sadly, on the surface, to most people they appear indistinguishable.  It is for this reason that I am sensitive to people being labeled crazy.   It's too easy a word to use to discredit someone.

When I was in grammar school, these older girls were singing "They've come to take me away.  To the funny farm where life is gay."  At first I thought they were being friendly, because they were pointing at me.  So I smiled back at them. They were singing a silly song and including me on the joke.  After a few minutes I realized that was their not so subtle way of calling me crazy.  My heart sank.

I am keenly aware of being an outsider and not being understood. It has allowed me to be simultaneously strong and vulnerable.I can slide between these two states with ease.  It has also allowed me to be comfortable with other people's dark places.  Because of that, people either gravitate towards me and seek me out as a confidant or they feel ill at ease around me.  I know that I push past many people's emotional comfort zones.  When I was younger that used to make me insecure. Now I do not worry about being disliked.Sometimes, however, I do perceive people having a desire to distance themselves from me, and sometimes that still pains me.

Being an emotional person in a thinking person's world is very difficult.  In clinical terms I come out as INFP on the Myers-Briggs personality tests. That is Introverted, Intuitive, Feeling, Perceptive.  My husband is an INTP... T for thinking.  One letter off, but it can create a huge chasm. Most T types dismiss my intuition and my  insights and all that I have to offer because from their standpoint I am lacking in logic.  I am not lacking in logic. Nor am I lacking in critical thinking. What I am lacking in is ways to explain my intuitive feelings to others.

I cannot always provide reasons for what I know.  I just know.  I am perceptive enough to know that "just trust me, OK?" neither gives me credibility nor gains me allies. The tragedy for me is that a lot of times I am right, and, months later, when it turns out I am right, it is too late to do anything differently. I do not say "hate to say I told you so," because I derive little pleasure from it.  Asking me to provide reasons behind my feelings is like asking me to change my personality.  It would be like me saying to a math genius,stop solving math problems or to tell my husband, stop thinking of new ways to improve the world.

There are very few people like me.  We maybe make up four to five percent of the world's population. Makes it hard for people like me to find mentors. Makes it harder still to figure out how to fit into a thinking person's world. I have had many years of therapy.  As a result, I have a more balanced personality. I don't conform emotionally, but I have learned to hold my reactions in check. When I  have an over the top emotional reaction, it feels like a huge personal failure.  I realize that I run the risk of alienating others.

Immature emotional types are perceived in our society is as either drama queens or as too intense.  I joke that I am a drama queen in recovery. I never really was a drama queen in the sense that I was never really that self absorbed.  One can be a drama queen yet, paradoxically, have compassion for others. Emotional maturity is hard fought, all the same.

People like me literally take things to heart.  We take criticism personally. It's taken me many years to figure out that criticism doesn't mean someone dislikes me.  I realize that a person dislikes a flaw, not all of me. Hate the sin, love the sinner. It is out of that realization that I strive towards change and personal growth.  I am very introspective.  Imagine a Princess Hamlet.


I find it objectionable that people prefer to categorize emotional types like me as emotionally unstable.  Too many people try to marginalize heart centered people  like me by saying, "adjust your meds." I don't know statistics of how many heart centered people are mistaken for mentally ill.  Feeling things intensely is neither a crime nor an illness.

Because we are heart centered, people like me feel everything.  And I do mean everything.  When I call myself an empath, I don't do so to brag. I am an emotional receiver. What I've discovered is that this can lead me to a kind of arrogance and suffering.  If I think or feel that someone is blocking their feelings, I can choose to feel their feelings for them.  Years ago I decided to let people feel their own feelings, even if they, by my estimation, do it badly. Because I am a receiver, I sometimes cannot tell if I am feeling my own feelings or those of others in the room.  That may seem very strange to many of you, and no, I cannot explain it in logical or scientific terms.  Being an introvert compounds the problem.  I have found that clearing my second chakra helps a lot.  Allows me to return feelings to their rightful owners.


On our first date, my husband and I went to an animation film festival.  There was one cartoon about zoo animals being interviewed.  The large cat being interviewed ( cheetah perhaps) was saying to the interviewer, "I need space!"  By the time our third date rolled around, my husband was saying that back to me.  He found it amusing that I needed so much space, but he loved me despite what I am sure he perceived as prima donna tendencies.

When I was pregnant with Kid O, we went to a Purim service because we wanted to meet this rabbi.  When we approached him afterwards, this warm, wonderful soul kept stepping closer to me.  I kept moving back.  My husband could hardly keep from laughing.  He understood that this man was unintentionally invading my personal space.

I need more personal space than the average person because I am more sensitive to energy than many others. While I have developed coping strategies over the years, I sometimes feel like energy just about knocks me down. As with anyone, I adapt. The shape of a room affects me.  The furniture affects me. If I am in a room with a TV on, I will sit as far from it as possible even if I find the people engaging.  If I leave a room, it is not because I am disinterested. It may be that I am experiencing informational overload.

Why did I choose to call myself  Miss Shuganah?  Afterall I could have called myself Miss Understood or a number of other jokey handles with considerably less stigma attached to it.  After years of being reacted to as if I were crazy, I decided to celebrate it.  Calling myself Miss Shuganah is my very public way of liberating myself from the stigma that  I have struggled with for the vast majority of my life.  I am proof that talk
therapy can work. I am proof that one can choose compassion over being mean.  I am proof that sometimes sanity prevails in an insane world where events sometimes seem a little too random.  

I understand why society chooses to block out heart centered people like me.  Sometimes I mirror a sick society. Sometimes I insist people honestly address their feelings instead of  burying them. Much as a bird needs a right wing as well as a  left wing to fly, a person needs a heart as well as a brain to be a truly integrated human being.  Perhaps I express my feelings in a more authentic way than most.  Society needs to spend less time trying to force people like me to feel less and more time learning from people like me about what I do best:  living a feeling full life.