Sunday, January 23, 2011

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.


  1. OK, trying again ...

    Oh honey. Wish I could offer you those hands, but distance intervenes. At least I can read and try to understand.

    Sending hugs!

    Hadass (lionsima)

  2. Thank you for your thought, Hadass. The emotional stuff has largely healed, even if the physical stuff remains daunting.

  3. You just lay it out there for us all to experience, each in our own vicarious fashion. To be able to look from the outside in through your eyes allows us to at least attempt to have some understanding of the challenges of parenting a child with disabilities. That a child's disability become the family's disability becomes clear in your writing- I am glad you continue to put it out there and remind us that Kid O has a mom and a dad and a sister- a family. Inside school, we sometimes fall into dehumanizing a disabled child- and his or her family members. You never allow us to do that.

  4. And yet I experience it all the time. Why do I hear dumb things like "she's a good eater?" I don't care about that. She is infantalized all the time. It is crazymaking. What I care about is how well is she learning? How well is she being taught? Kid O is not an eating machine. She is someone who has a brain that needs to be unlocked. She is a human young adult.

    Society doesn't allow for my humanness, either. If she cries or screams, I am automatically at fault. Not fair to any of us.

    It's sometimes really demoralizing.

  5. Oh, Shug. I hear you. I feel what you are saying. I have no children, but I was a teacher, and worked with many with CP but more able than your child. They too had nightmare situations.

    I can't imagine her pain. I can't imagine yours. I wish I could be in your village. I wish I could help. If I were there now, I would pour you a wine or a drink, or coffee, or whatever you wanted, and we would talk.

    And you would let out the frustrations of the day, often, and at times I'd stay with your child to give you a break, to go and just be you, unattached to anyone or anything. Just for a break.

    You are not at fault. You are not at fault. I can't imagine who thinks you are.

    Could you tell me about her learning? What can she learn? I really want to know. Can she communicate, or is she locked in her own prison?

    How I wish we were in the same village. I will think of you often. And her. Kid O.

  6. I don't know if this place gives you a way to contact me. I'd leave my two URLs so that you could reach me, but that would be counted as spamming. This is what I hate about these blogs that aren't owned by the writer. No way to contact you!


  7. your child will read dot com contact form, twitter, or facebook

    almost 60 really dot com ditto

  8. Maybe if I learn more about her, we could work somehow. No promises. But a brain locked in a body: hell on earth.

  9. Oh, gosh. I think I need a way to subscribe to my own posts. I entirely missed this from about two months ago. I am so sorry. I am reachable through Twitter, if you are still around. I am so sorry I missed you.