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.

We're Gonna End up a News Story, or, Don't Worry About Me, I'll Sit in the Dark

Q--How many Jewish mothers does it take to change a lightbulb?

A-- Don't worry about me. I'll sit in the dark.

"We're gonna end up a news story," I used to say over the phone to my husband.

Kid O was a beautiful baby. Every unwanted or unexpected noise or motion would upset her. She used to scream in my ear as I held her in my lap. A sister in-law recommended a nanny to give me a break. She had had experience with preemies, I was told. But by the time this woman had met that preemie, the little girl was more like a normal baby. No complications. I knew my nanny was quitting the moment she handed Kid O back to me as if passing a football, and bolted out the door.

The neighbor woman who had had a child about six months before me, found other women with babies to stroller with and go to the park with. Kid O and I were alone. I would take us out. Sometimes, like most babies, Kid O would doze in the stroller. But other times she would scream bloody murder. Resentment welled up inside me. I wanted to get out and get some sunshine, see the flowers, and I felt that this tiny person was denying me that pleasure. I also felt extremely self conscience. There wasn't a large enough rock for me to crawl under. Intellectually I knew that she wasn't doing this on purpose, but that's how it felt.

I had a baby who hated being in the stroller, got upset by every single train, plane and automobile and even quiet conversation from below our second story window. Until I shifted us from the sun porch to the back bedroom, would take me on average four hours to feed her. Kid O would keep me up for hours while she was teething. She would scream on average twenty minutes if I tried to put her back to bed. She wasn't even sitting up on her own, never mind standing or walking. I couldn't breastfeed her. I was too topheavy and Kid O was too tiny. In frustration I hurled The Womanly Art of Breastfeeding clear across the room.

There were times I wanted to hurl Kid O across the room, too. Even now, years later, I fill up with shame that that thought even entered my mind. I used to imagine it in grim detail, with my husband coming home to find me sitting on the couch and a broken body nearby. What stopped me was that, aside from not wanting to go to jail, was being fearful of losing his love. That's right. I cared more about having my husband hate me than whether or not I still had a baby. Of course I would have felt tremendous remorse. Kid O is the child of my heart, and I would have been beside myself. But in those moments, I didn't care. I just wanted my time back. I wanted my sleep again. And I wanted a "normal" child. Like all the other moms. I wanted a child who was physically able, and, above all, I desperately wanted a child who would say all those cute, clever and precocious things that other kids seem to say to their moms. I am still waiting for "I love you, Mommy," although I know that Kid O and I have a very deep connection. She was and remains my "beautiful mystery."

Why didn't I snap? I often wonder how I managed to survive Kid O's first two years. I have always had a strong moral compass, and I always had a deep reservoir. Even at my lowest, there was always something I could reach in and grab and use. I did this even though I had post-partum depression. Aside from my mom, I had no one to really talk to. My husband was crew for a sailboat race team, and when he wasn't doing that he was off riding his bike. We have healed from those early days, but it was difficult. Family members always seemed to have their track shoes on. No one seemed to have time for me. Or for Kid O.

Months later I received an apology from a friend of mine. She hadn't realized just how difficult a baby Kid O had been. My next door neighbor apologized right before she moved. Seemed as if someone from their birthing class also had a preemie who had cerebral palsy and a disorganized nervous system. This couple was forced out by their condo association. No screaming baby in their building. Nosiree. All of it was cold comfort. Where were they when I needed them?

I looked into a support group. Even if we had a car then, I am not sure I would have gone. I am more of a cave dweller than a joiner. The woman I spoke to talked about her child needing a feeding tube and oxygen. At least Kid O was healthy, as handicapped as she was. I felt as if my need for support was somehow illegitimate. It was a foolish notion, but I never again looked into it.

Sometimes my rage turned inward and I became suicidal. Sometimes I turned my rage outward. I didn't recognize this rage filled woman. I always felt really horrible whenever I expressed rage. I would make the same promise that all abusers make to themselves and to the people around them. I will not do that again. I promise. Thankfully it was sporadic. Didn't make me a bad person. When I wasn't expressing rage and more myself, I was a kind, compassionate, loving woman.

My struggle with rage came to a head when two friends of mine, independently of each other and several months apart, told me that they would no longer deal with my tantruming. I took a good, hard look at myself and decided that somehow or other, the rage had to stop. That was not who I was. That was not who I wanted to be. I did not stop the rage cold turkey. But I did stop. The pain and the shame slowly lifted. There is still a lot of work I need to do, but at least I have overcome the worst of it.

When I first started to leave the dark places behind, I was sure the light was an oncoming train. And then I started to see that it was daylight. I am still getting accustomed to that. Joy is slowly returning, and I am starting to feel whole again. I have returned to gardening. I have a better outlook. And all because people cared enough about me to tell me the truth --- that I was driving them away.

It is easy to judge people, especially when you don't know them. If people had only assumed the worst about me instead of looking at me as a whole person, I'd be in deep trouble now and so would everyone around me. When I read news stories about a mom or a dad harming a disabled child like Kid O, my first reaction is self-righteous anger. How dare they harm a child. But then I think about how life can change in an instant. I ended up with what seemed like an impossibly difficult child. I developed coping skills, but, also, just as I thought that no one cared, people reached out. Many times I could have been that news headline. But somehow I wasn't. When I read these stories I always think: could have been me.