Thursday, July 3, 2014

Questions You Don't Think You Should Ask....The Future?

Its been a while since I've done a questions piece.  They are ridiculously difficult to write.  I have to decide how honest to be with you dear friends.  I have to figure out how honest I can be without getting into a hob gob of trouble...

That's a promising start, huh?

Isaac is healthy with the exception of his cognitive impairment and scoliosis.  His autism is really a neurological difference and not exactly a health impediment.  Isaac is fit and strong.  He is getting stronger all the time.  Isaac has just become taller than me and truthfully would be taller save his scoliosis.  Isaac's body is sound but his cognition is greatly impaired.  It is a difficult situation.  The thing that keeps a toddler alive is the fact that he/she is short and does not have the ability to manipulate simple doors.  Isaac is tall and can get through any door or cabinet.  There is not a place that I can put the kitchen knives where Isaac cannot reach them.  The same goes for the cleaners, appliances and anything else you can think of.  There is not a way to secure our entire house in a way that he could not hurt himself and still function enough to provide food and cleanliness.

Young children are prone to tantrums when they cannot communicate adequately their wants and needs.  They may also act out when they are told no.  Isaac can too.  Sometimes, the answer is no.  Sometimes, I don't have what he wants and cannot get it.  Also, I realize that catering to Isaac's every whim would promote more tantrums.  He needs to be able to tolerate (at least to a point) the terms "no" and "wait".  When Isaac is upset, he may hit and/or bite himself.  He may well reach out and hit or bite those around him.  By those around him, I mean Sam or me as we can spot the warning signs of a tantrum and step between him and whomever he is near.  The laws of nature say that Isaac will only get stronger while Sam and I age.

We have thought about several possibilities for Isaac's future.  Some people live with their adult children with profound special needs until the parent dies.  I wonder at how difficult that transition would be for the adult child with special needs.  Their entire world that has been established since birth is suddenly turned on its ear with no plan or person to assist a gentle transition.  People with autism struggle with change.  I can't think of a more difficult situation to purposefully put Isaac in.  Some people actually have other children so that they can care for their child with special needs.  That's not fair to either child and I could not bring myself to do that.

The only alternative left with any real merit is a group home.  Many will bristle upon reading that last sentence.  Many will think that I don't care about my son.  I do love him.  I love him enough to (when the time comes) research and find a place that is a good fit for him...a place where he will be kept busy and fulfilled and a place where he will be well cared for and loved.  I love him enough to work with the staff of that place and provide a gentle transition into the next stage of life....just like we will transition the other kiddos into adult life.  I love him enough not to let his routines become so ingrained that he will be thrown into regression and confusion when Sam and I pass away and he must live somewhere else.

Our choice will not be the choice that other's make.  That's ok.  We all get to travel our own roads.  Our choice does not involve dumping our son off and forgetting him any more than we would plan to do that with any of our other children.  We will transition them all so that when we are gone, they can still live.

Love you all dear friends....

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