Parental Responsibility

This subject is nearly as touchy as racism.  Maybe more so.  Yet, I feel compelled to write about it.

My youngest daughter has Type 1 Diabetes.  When she was first diagnosed, my husband and I decided I would stay home and learn to manage this life-long, chronic disease.  I had an okay job with great benefits and good pay, but I was willing to give this up to better support my entire family during this huge learning curve.  After two years, I am back to work part-time.

When I say huge learning curve, I mean it.  You have to learn to poke fingers and interpret blood glucose readings.  Match insulin needs to food requirements.  Learn to make appropriate increases or decreases in insulin to maintain a very fine balance between "good" and "evil" glucose levels.  This disease leads you into one of the hardest juggling acts you will ever perform.  You have to fight a child who doesn't want another needle but must have it to live.  Your heart is often ripped from your chest and stomped on in this constant battle to preserve a decent quality of life for your child. 

With this on-going battle against a disease you have no control over, you must remember to give enough love and attention to your other child or children.  Even though she may understand the medical need, your non-diabetic child needs you just as much as the diabetic child does.  She's emotional, too.  No one likes to watch someone they love suffer.  No one likes to feel someone is more important than they are.  I think a tight-rope would be easier to walk than to maintain this balance.

Don't forget your spouse, either.  They are sad and struggling with this ugliness life dealt our daughter.  An ugliness he can't protect her from.  It's hard.  Hard to carry the weight.  Difficult to turn something so negative into a positive.  Lots of blood, sweat, and tears have been shed in the two years since diagnosis.  Oh, and sleep deprivation, to the point of insomnia.  I rarely sleep a full six hours.

By now, I'm certain you're thinking what does all of this have to do with parental responsibility?  Where the hell is she going with this???

Lately, I have been reading too many complaints about parents with Type 1 children who are upset about the lack of support for their children at school.  They are upset about not being able to have an educational assistant in place to help their child at school.  They are upset when a teacher is a little later testing than is required.  Angry about an educational assistant who made a decision that was incorrect in the treatment of their child's disease.

My first question always is:  are you available to go to your child's school at key points throughout the day?  Many times I receive a "yes", followed by many excuses as to why they can't/don't want to this.  From younger siblings at home; to it's a human rights issue and everything in between.

I'm fully aware not all families can manage this ugly disease the way we have.  I get it's hard to pack up two or three younger siblings a couple times a day.  I even get that it is the right of our children to be safe at school.  I understand the single parent who must work with no one else to rely on.

What I don't understand is my perception of parents insisting on passing their responsibilities to medically untrained educational assistants.  Many of these same parents with complaints like to spout about how Type 1 is a life-threatening disease.  It is.  They like to point out mistakes these assistants make during a treatment and how they would have handled it differently.  Demanding that schools train personnel how to handle this disease in five minutes.

We live, eat, breathe and sleep this disease.  We learn to make decisions based on previous history.  Many decisions are made on gut-instinct alone - with a very sincere hope it was the right choice.  Some of us have been battling diabetes for many years; some for mere months.  How can we possibly expect an educational assistant to learn all they need to know from a half hour meeting at the beginning of the school year?  How can we expect them to make a good decision based on the protocol we have written for them, yet often twist knowing we will achieve the desired result?  We can't.

If you truly want the best care your child can have, I believe parents are the only ones who can deliver this.  We should not be passing it off to someone who doesn't understand - or care - on the same level we do.

If you are unable to go to school to care for your child based on your life's circumstances, then fight for trained medical staff at your child's school -- not for an educational assistant.  I, for one, would not pass this responsibility to a person who has no medical training or real understanding of this chronic, life-threatening disease.  For any reason.  Fight to be welcomed into your child's school to help whenever they need it - a battle I had to fight in another province and won.

Don't complain when someone makes a decision, even if it isn't the right one.  You've chosen to trust them with your child's life-threatening disease because you are unavailable during those hours.  Use it to further educate them.  Make yourself 100% available to give assistance or to answer questions.  Remember how difficult it was to make the right decision in the early days of diagnosis?  Don't criticize those of us who choose to happily deliver the care our diabetic child needs by sacrificing our jobs or choosing to come and go from the school at key times during the day. 

Are you a bad parent because you need help to manage your child's disease?  No.  But neither am I for choosing to be a fully hands-on parent who refuses to delegate the responsibility of my child's life to another because it is their "right".  I get tired of listening to what everyone "thinks" society should be doing for them, rather than what they should be doing to improve society.  We don't need everything legislated.  Our world has too many rules, and it certainly hasn't improved because of it.

Schools have the responsibility to educate.  Parents have the responsibility to keep our children alive and well.  Don't pass that responsibility off so easily.