Tuesday, June 17, 2014

Isaac's Siblings

Isaac has one brother and two sisters.  If that shocks you, please read the post about why we had other children.  We wanted everyone of our children and feel very blessed to have them in our lives.  Isaac's siblings love their brother very much.  They have learned a lot from being in a family where there are profound special needs....and yet...like all mamas...I do worry...

I worry that individually they do not always get the amount of attention they desire.  I guess that is every parent's worry.  Still, I know how much attention Isaac demands.  He needs assistance with so many things. We help him with toileting and dressing and grooming and well everything.  There is a constant worry about where exactly Isaac is and what he is doing.  While we really try our best not to center on Isaac more than any other member of the family, balance is always tough to achieve.  I look into the eyes of Isaac's siblings and wonder if I'm missing anything.

Isaac has emotive ecolalia.  Roughly translated, he reflects your moods.  He is very sensitive to ill moods as they are generally contagious anyway.  Sam and I do our best to control our tone of voice and our manner when responding to any challenge since the challenge would only be further multiplied if Isaac's mood worsened.  It is good to have a pleasant home and yelling doesn't usually solve problems anyway.  But there are some difficulties with controlling emotions.  Last week, Isaac's little sister took a tumble.  She was playing on a big balance ball Isaac uses in therapy and lost her center.  She hit the floor and began to cry because honestly...it hurt.  We brought her downstairs and held her and comforted her.  She is eight but even eight year olds can hurt and sometimes need mommy's arms.  Isaac came downstairs and pointed at her.  "Sad." he declared.  What happened next chilled me.  My eight year old plastered the biggest and most fake smile upon her face and loudly responded through the remnants of her tears, "No, Isaac.  I'm happy.  See me smile.  I'm happy, happy."

It was one of those moments that make a mama freeze.  Dear Lord in heaven...what is happening here?  Is she afraid to display her hurt?  I held her tighter and told her it was ok to cry.  Isaac continued to perseverate on her emotion but we redirected him back upstairs to comfort himself with Veggie Tales.

Isaac sometimes reaches out to pinch when he is showing his displeasure.  I watch Isaac's older sister when Isaac reaches out to grab me or Sam.  We don't react other than to direct Isaac to stop.  "No thanks, Isaac.  I don't like that.  All done with your fit."  We try to get him to use words, "What do you want?  I need for you to use your words."  I watch Isaac's siblings out of the corner of my eye when these incidents occur.  The reactions aren't pretty.  My thirteen year old daughter watches like its really not a big deal...and I guess to her its not anymore.  She is aware of what is going on around her, but she is not alarmed.  I see in her eyes...resignation.  That resignation isn't pretty in adults and could well be a disconcerting  thing to see in a teenage girl's eyes if I  thought about it too much.  I try not to.  My ten year old son is frightened.  I see that clearly.  He knows though that Sam and I are grown ups and his parents.  He knows we won't let anything happen to him. He cares about Sam and me...but he is ten and so cares more about his own safety.  He trusts us to keep him safe.  My eight year old daughter is keenly watching the whole situation play out.  She is still trying to sort out her world.  She wants to believe that everything is ok but she still sorting the whole of it out.  Isaac, her older brother, is hurting mom and/or dad.  They aren't getting angry.  Isaac is mad, that is obvious.  Mom and Dad are telling him to stop and asking him what he wants.  What does he want?  Why do I get in trouble if I yell and stomp off when my brother draws blood and its ok?  These are big things for a small girl to wrap her head around.

How do I comfort myself?  I take comfort in the knowledge that as humans we all experience life.  Stuff happens to us all and even though childhood spares us the sharpest jabs of reality it is not possible to hide all of life's rough spots from sight.  My children do see the challenges of Isaac's behaviors but they also see the extents of our love...for Isaac and for them.  We do not respond to any of them in anger.  We try to find the cause of the behavior and deal with it.  We are honest with each other.  We have to be.  I have talked with each of Isaac's siblings about the fact that its ok to be scared.  It is ok to be scared.  I have reminded them that to be brave means to persevere even when you are scared.  Its ok to be scared but always know I love you and I am here to keep you safe.  Its ok to be sad and its ok to cry...I will help you.  I comfort myself knowing that as a family, we live in a testing place.  We are a team and we all must bind together to get through.  That is true with any family but our situation is stripped of facade.  The realities are laid out and bare.  I comfort myself and tell myself that we keep pressing on and moving forward together.  We have to.  It will all be ok.  It has to be.  

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