Wondering, Wandering, and Writing

My motivation for writing “The Hand You’re Dealt” got lost in the process of thinking of some light-hearted examples.  The next statements may seem unrelated, but hopefully by the end of this you will see some connectedness among them.

No parents wake up one day and say to each other, “Why don’t we have a child with special needs?”

Families who appear to be perfect, have it all together, and are breezing through life probably have a challenge or two that 99% of the people around them don’t see.

If a stumped toe is the worst pain you’ve ever felt, it’s awful.  If you’ve had major abdominal surgery or a few broken ribs, you can laugh at how minor your stumped toe is.

If your great uncle you’ve only seen once in your life is the closest relative you’ve lost, the grief can be painful.  Until you lose a parent, a sibling, a friend you see every day, or a child.  Those are all different kinds of grief.

If the worst remarks you heard made behind your back are about how your clothes don’t match, and you care what people think, your feelings are hurt.  If you grow up and have children and see people whispering about how different a child is, remarks about clothes don’t even warrant a half a thought.

As children grow older, we expect them to communicate their needs and problems.  A number of physical and mental differences can make this difficult to impossible for some years or the child’s entire life.

Some folks park way out from the store so the car paint doesn’t get scratched.  Some parents can’t go to the store because there is no one to stay with a child and a screaming child, even one that is being cared for, is a magnet for calls to the police and DSS. 

For those who aren’t well trained and/or experienced, it can be difficult to distinguish between a child who is being abused or abducted and one that is struggling mentally, had a breakdown in the store, and the parent is simply trying to get groceries and get home.

Some “different” children are runners.  Some trust everything that everyone says.  Some can’t yell and get your attention.  Some can’t hear you calling. Anyone who has watched young children for a few days knows that they can get out of your sight for a moment no matter how diligent you are.

The point of all this is that parents, caregivers, and siblings of children who are not average/normal (I don’t even know the current politically-correct term) are playing life with a different “deck” than families of close-to-average children.  The causes of the differences are many and varied.  The challenges the families face are dependent on the causes of the differences and their support circle (if they have one). The intensity of the feeling of loss and grief vary from person to person.  What loss?  What grief?  What pain?  Think of all the milestones we expect children to meet – kindergarten graduation, playing sports, being involved in church or scouts or both, high school graduation, a decent-paying job, perhaps a wedding and grandchildren.  Some or all of those are either lost completely or greatly different than you anticipate when you first learn that in a few months you will hold a baby in your arms.  The grief and accompanying
 pain are real.

Most do share some challenges.  Scheduling anything – doctor appointments for yourself, counseling, dental check-ups, parent-teacher conferences – can be a bit challenging.  Trying to attend church or social gatherings is often more stressful than the good gained from the comradery, and the family becomes isolated.  Children can’t tell you when they hurt inside, and it can take minutes, hours, or days to figure out that the screaming is from a physical problem.  A simple dental check-up can be an ordeal.  Yeah, yeah … you just have to prepare them and find the right dentist.  That’s a great theory but it doesn’t always work that way in real life. Learning social skills can take longer than typical, so the children end up being bigger than those they can appropriately interact with.  Only then, the other children’s parents aren’t comfortable with the situation.  The fear of making mistakes is intense.  The fear of a neighbor or someone who sees you in town calling child protective services is real.  Children are tiring!!  Healthy, “normal” children can drain your energy.  Multiply that by 4 or 5 or maybe some power of ten and it’s close to how draining it can be to care for children with special needs.

So what can you do to help someone sort out the different cards in their decks?

Just be there. 

Be a friend.

 Be present.

 Be quiet.

 Be accepting. 

Bring a cup of coffee or a bottle of soda pop and sit and talk about the weather while the children play – and expect them to be strange, weird, loud, or unusually quiet. Share a gift card for gas or pizza delivery if you know those could be helpful.

 Riding along on appointments is time consuming and draining for you, but it can be helpful. 

The real key to being helpful is to listen a lot, talk none to others about it, and offer very little advice that isn’t asked for.  If you can do that, you will be a priceless gem.  I know.  I have a few of those.

#bgwww22