It Really Does Take a Village

by Kristen L. Gorden for her daughter Kamilah

When you’re parenting children with disabilities you wake up every morning unsure of what the day will hold, and go to bed at night feeling that the day went well if you didn’t get a call from a teacher, a neighbor, or the police, and no one needed medical care.

You develop an appreciation of the simple things that you used to take for granted. A clean house, a coffee break with a friend, or a shower is a luxury.

You learn to celebrate when your 12 year old remembers his phone number, and your 14 year old finally remembers that 911 is the emergency number, and not 991. You rejoice with the 10 year old who just read ‘The Cat in the Hat’ all by himself for the first time. You applaud the child who remembers the difference between deer tracks, dog tracks, and people tracks when you take a walk in the new snow. You understand the joy of a meal with everyone in their chair, and you never take for granted the whispered ‘I love you” from a child whose usual means of communication is a scream. There are some things you miss. It’s hard to call anyone and tell them of these accomplishments because these are things that come so easily to most children.

When things go wrong you can’t talk to anyone either, because most people don’t share your frame of reference, and they’re either uncomfortable, or disbelieving of how you live.

You can’t often find a babysitter, because you need someone with the training to know how to handle your child’s issues, and if you find someone you usually can’t afford them, so you rent movies, and eat after the kids are in bed and pretend you’re out for the evening with your spouse.

You look for support in your family and community, but true understanding isn’t usually available. Unless you live it, it’s hard to really know the pain you feel when your child is hurt by the thoughtless comments of people around them. It’s even worse when people who should know better deliberately inflict the hurt.

Our children face daily challenges in learning to cope with the effects of their birth mothers drug and alcohol use, complicated in many cases by neglect and abuse. The struggles are further complicated by a lack of understanding from the people around them. There is the idea that all these kids need is to be placed in a “good” home, and their problems will magically disappear. When that quick fix doesn’t happen, people don’t understand. You hear from the self-proclaimed ‘experts’ on your child. The ones who blame the parents, “They’re not being hard enough on that kid.” “They’re too hard on him.” “They’re just making excuses.”

You hear from those who blame the kids. “He could do better if he tried.” “She just needs to buckle down.” “All that kid needs is a good spanking, that would straighten her out.”

When we hear about people working with cocaine babies in shelters, and are asked to support their efforts, it’s easy to write out a check. It’s nice to deal with the vision of an imaginary, cuddly baby. It’s not so easy to look at a child who’s screaming “NO!!” at the top of her lungs, has a dirty face, and is absolutely not adorable, cute, or cuddly and still want to help.

Sometimes the children resist our best efforts. They don’t like to take their meds, and they often resent being in “special” classes. Sometimes they cry because their lives are so screwed up. They have to make an effort every day just to sit still in class, much less to understand what’s being said and to filter out the important information that’s dished out with a lot of extra words. They don’t understand why it seems so easy for others, and is so hard for them.

Our job as parents is to pick up the pieces, and help our children become the best people they can be. Maybe they’ll be the best floor sweeper instead of the best doctor, but we will know the effort it took to be the best floor sweeper, and we will celebrate that accomplishment.

We look to our neighbors to help in that process. We need support from school, family, community, and the church. We need to be able to draw on the strength of others when we face those days when we don’t have the energy to try to reach the troubled child screaming in the corner or glaring at us from angry, hurt eyes.

We can’t do our best when we feel that we have to be by our children’s sides 24 hours a day because we can’t trust anyone else not to hurt them. We’re just like everyone else.

We get frustrated.

We get tired.

Sometimes we wonder if we’re making any progress.

Then we sit at a bedside at night and hear our child say “ Thank you God for chocolate, and candy, and apples, and sisters and brothers and mommy and daddy. “ And we remember to say ‘thank you’ for all those things too, and for the children who open our eyes to the simple things we take for granted.