They Just Don’t Get It

I am reminded time and time again…that friends and family who have not experienced living with a child with special needs…they just don’t get it.

It isn’t the mother-in-law or the brother-in-law, or even grandma that fail to recognize the needs of a special needs child, it’s really anyone that has not stayed up late to clean up feedings from a leaky mickey-button, or stayed overnight at the hospital while doctor’s scratched their heads wondering how to care for a sick child – that clearly have a lack of understanding.  It’s not their fault either.   No matter how upset we feel by the ineptness displayed by individuals outside of our home, we as caregivers need to remind ourselves that the only way to continue and maintain relationships with these individuals….is acceptance.  Acceptance of our own situation, and acceptance of others life outside of our own.

I know, I know.  I hear it all the time.  I have even said it myself.  THEY DON’T GET IT!  We hear the familiar….

…… “oh, he’ll be alright…he just needs to eat a little more”….

…….or “oh, it doesn’t matter what size she is, she’ll be loved just the same”…

……and, “he was in the hospital again?  oh, well, I’m sure he’ll grow out of it”.

Then my all time favorites…

…….”let me feed her, I can get her to gain weight”,

….or “he looks fine, you shouldn’t worry so much”,..

and the best one <drum roll please>…

……”well, maybe you should relax, you worry too much”. 

What makes things worse, these individuals truly believe they are helping.  By offering what they believe is sound advice, what they are truly doing is making our lives more difficult because it seems as if they are belittling not only our intelligence, but our ability to be good caregivers and/or more importantly – good mothers.

But, the truth is – they truly are trying to help in their own way.  And we need to be more accepting of that.  Yes, I realize this means there is one more thing for us to do…..LOL……but, we can help first by accepting the fact that the individuals outside of our situation are in the same place we were in the beginning of our adventure…without information. 

Once we accept and become understanding of their misconception about the rare disease, we can then begin to teach them how to cope with the constant demands we have learned to live with on a daily basis.  For example, when we go to Grandma’s house to have cake and ice cream for someone’s birthday party and our child is tube-fed.  We all know the first thing Grandma is going to say “Is Johnny having a peice of cake today?”  Now deep inside, we want to slap Grandma because Grandma has seen us feed little Johnny through his belly for the last 6 months and Little Johnny has feeding therapy and hasn’t figured out yet how to eat ANYTHING.  But, instead….we are going to put a smile on our face and say, “Well, Grandma – he IS going to have cake – someday.  In the meantime, would you mind feeding him through his tube today?  Here let me show you”.  Not only does this let Grandma know in a nice way that she’s nutz, but we are also giving her control over Little Johnny by letting her do a very important thing for us – which is feed Little Johnny through his g-tube.  Oh, don’t get me wrong – she won’t like it.  She’ll probably kick and scream and say “no, I can’t do that” , or “well, I have to get the tea on for the rest of the party, you go ahead and do that dear”.  What Grandma really means is – Crap, this child really does have an issue and I’m afraid of acknowledging it and I’ve never done tube feedings before and that scares me”.    But, Grandma will not be honest with her feelings, just as we aren’t with ours – for fear of upsetting the relationship. 

This is why it is important to Teach those around us about the level of care that is required, instead of doing everything on our own.  Teaching helps us open up and allow others to come to a better level of understanding, as well as strengthen the relationship by letting others feel like they are a part of the solution to having good health for our children. 

I’m not suggesting we teach every single friend and family member how to bolus our children.  But, I do believe that we need to realize that – unless we have experienced a situation – first hand – we can never fully appreciate the circumstance before us. 

I’ll never forget when my other son broke his wrist.  Now, with my youngest son, who has Russell-Silver Syndrome – I could do IV’s, g-tube feedings, manage blood sugars, and pretty much guide the nurses at the hospital on what their job was at every single hour of our stay <grin>.  But, when my middle child came home with a broken wrist….I was at a loss.  I had  NO idea what to do for him.  I didn’t understand his level of pain, wasn’t sure if I should ice his wrist – keep it up above his heart or even if he was supposed to move his body at all!!  Yes, I was a mess.  The funny thing is, the same Orthopedic Surgeon that meets with us regularly for my youngest son’s care – laughed at me.  After realizing my ineptness was really just normalcy for anyone who hadn’t ever experienced a broken bone in her life…I felt much better and was able to laugh at myself. 

I also realized that I felt incredibly “out-of-control”.  There was “nothing I could do” for my son.  His wrist was badly broken and I could do nothing.  I couldnt’ work with tubes, I couldn’t put charts and graphs together to monitor him, and all I needed was some advil for the pain.  You mean, he doesn’t need to live at the hospital for a week?.  This crisis was almost “too easy”. 

Well folks, this is what many of our family and friends feel.  Most of them are not used to the crises we have and continually faced, but they do feel a sense of being “out-of-control”.  They don’t know what to do for us or the child.  We are so used to doing EVERYTHING – that we forget to let go and allow others to step in and help.  Thus, we end up hearing ridiculous remarks about feeding a child that doesn’t eat volitionally (through his mouth). 

We need to teach.  We need to enage our family and friends.  We need to open up, share our experiences.  And…yes – this will hurt a little….let them help the only way they know how.  And if they say something that doesn’t meet our expectations – after all our efforts to teach and share?  Just remember, you and your child are loved no matter what.  You can’t teach an old dog new tricks sometimes ;).

Copyright 2010 – Heather J. Earley

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