Am I really the worst? A day in the life of parenting special needs children

AfamilyThe other day after a particularly lively visit to PetSmart with my husband and our two special needs children, a woman who had been in the store at the same time drove up and said: “You are the worst parents I have ever seen.” She drove off before I could respond, not that I had a witty comeback. To clarify, no animals were hurt (or even handled), nothing was damaged and we did not leave any messes for store employees to clean up. We were probably the loudest family in the store, but that is normal in our world.

I am confident I cannot possibly be the worst parent out there.

My children, who both struggle with multiple disabilities, had a fun outing to the pet store with two parents who love them dearly. Despite their challenges, they are on the honor roll at school, play sports and engage in other extracurricular activities and have received awards for their accomplishments. Of course, it is easy to listen and accept negative comments of someone who sees my life for less than 15 minutes and makes a faulty assessment. I am like every other parent: I worry. I have doubts and fears. I doubt myself. I question if I am doing enough.

Most parents worry about their children, but parents of special needs children need to know the world is a better place because they are in it. We are parents who have been to more medical appointments with our young children than most adults have been to in their whole lives.  Our children often have had multiple diagnoses yet don’t really “fit” any of them. We sometimes feel isolated because our children don’t seem to fit into any group, even the “special needs” ones. We’ve scoured books, magazines and web sites in the hopes of finding something new that might be effective for our children’s needs. We feel exhausted, overwhelmed and incompetent on a daily basis but still get up every morning and try to provide the best for our children. We fight schools, doctors, friends and even family members every day just to get them to understand the basic needs of our children. And after all of that, we have to put a positive spin on some very ugly comments our children hear on a regular basis.

To paraphrase the late Erma Bombeck, God is looking down from heaven and pairing children with appropriate parents. When He chooses parents for a handicapped child, He decides they must be happy so the child can know laughter; they cannot have too much patience or they will drown in a sea of self-pity and despair; they must have a sense of self and independence so they will be able help the child who is in her or his own world function. They must to be a little bit selfish to separate themselves from the child occasionally to survive. They will see clearly ignorance, cruelty and prejudice and be able to rise above it.

I sometimes tell my children they are the next generation of evolution for humans. They can hear small noises in another room despite a closed door, so no wonder loud noises overwhelm them. They can see something, focus on the smallest detail and remember everything about those details for years … and counting. The feel of fresh-cut hair falling on them is like sharp pins needling them. They feel textures so acutely that fabrics and tags scratching them for hours stress them out. They can smell something burning from another room before I, standing in the kitchen, even realize it. I tell them they are just ahead of everyone else evolution-wise and developmentally, so they should feel lucky.

Everyone else will eventually catch up.

What that woman witnessed that day she peeked into the window of my family’s life was two parents adjusting lovingly to their children’s behaviors, something all parents are prone to do, as revealed in a University of Michigan study challenging notions that parenting in a “top-down process from parent to child.” In fact, parenting is a “cause and a consequence of child behavior,” shaping how adults function as parents: In our case, our children get loud, we love them and accept them for it.

As to what shaped that woman’s inappropriate commentary, I’ll never know. But I’ll consider what my son often quotes, “Haters are gonna hate,” which I just have to accept. In the meantime my husband and I have enough love to fill the gap.

Nancy Klein is a retired U.S. Air Force lieutenant colonel and a Public Voices Fellow with The OpEd Project at Texas Women’s University.  

 

5 responses

  1. Glad you shrugged her off. A bad parent (which you are not) can improve with experience and or traning. A mean spirited judgmental person is going to stay that way.

  2. Thank God for your resiliency Nancy ( and that of your husband’s ) to carry on and not let crabby people bring you down ! There seem to be a growing number of them…

  3. You are definitely not the worst parent out there. When I was growing up, my mother told me that if abortion had been legal, I would have been one. She told me I was unlovable. And ugly. And stupid. I once spent six months in a classroom for mentally handicapped children (I was academically gifted) because my transfer paperwork hadn’t come through and my mother wouldn’t bother to go to the school to correct the error. When I read aloud, the teacher remarked that I must be an idiot savant. When I was pregnant with my first child, my mother responded to my joyful news by suggesting that perhaps I would get lucky and miscarry. I raised three beautiful, healthy children–all equally unlovable in my mother’s eyes. I sometimes made mistakes, as did they. But love really does conquer all. It gave me the courage to protect them from my abuser and raise them in a happy home. I never knew a mother’s love as a child, but I got to see it reflected in my children’s eyes every time I looked at them. Unfortunately, my mother was probably not the worst parent out there, either. God bless all the children who don’t have a loving, thoughtful, caring home such as yours. And God bless the person who made that hateful comment to you. She’s obviously the worst judge of character I’ve come across lately.

  4. Thank you! This was the PERFECT day for me to read this, as “anonymous” just left the following [never going to be published] comment on my [also anonymous] blog:

    Read “The Normal One: Growing Up with a Difficult or Damaged Sibling”. You blew up the lives of your happy, healthy biological children by inviting two violent, foulmouthed, badly behaved little terrorists into your home.

    You patronize your violent little terrorists by insisting they do not know what the words they are screaming mean. How frustrated would YOU get if you kept telling somebody you were upset, you were gonna light them on fire and they just said “oooh, you sure sound a little frustrated”, thereby minimizing your concerns?

    Folks, particularly little folks like kids, tend not to have a filter. They say EXACTLY what is on their mind. They do not have the skills to fake it… and, well, you’ve got kids whose suicidal and homicidal utterances you fail to take seriously. Ugh.

    As parent, you are responsible for keeping ALL your kids safe — and there is ZERO chance your bios will remain safe with the same-age, lacking in all social skills, lacking in emotional regulation little terrorists living in your home.

    Last but not least, kids have a tendency to live up (or down) to expectations. You’ve set the bar so very low for the terrorists, it may as well be lying on the floor!

  5. Good for you for taking unrequested judgments like that lady’s with a grain of salt. She didn’t help. If my 15 year study of brain science and spirituality has taught me anything, it’s that every parent (and in fact, everyone of us) does the very best we can in every moment, depending upon a whole host of variables, like transient neural integration, stress levels, threats from the environment, etc. There are very few of us who, if we could do better in any isolated moment, wouldn’t.

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