Not An Option

February 12, 2016

Today as children in schools across America were celebrating Valentine’s Day, and a dear high school friend was contemplating the switch from liquid face foundation to mineral foundation via group text messaging, my husband and I went to look at two intermediate care facilities for people with extreme behavioral issues.

My entire life all I wanted was to have children.  I married later in life but not within the age of risk of having a child with a disability.  I did not drink soda, consume caffeine, or take medications while I was pregnant.  I did not drink beer and I love beer. 

I did take my prenatal vitamins regularly and we did plan for this amazing life event called children. 

Our son was born with Down syndrome that had not been realized prior to delivery.  Not that a diagnosis of Down syndrome would have matter to us.  Before he was two years old, we noticed he was not like all the other kids with Down syndrome.  He was more like the kids we knew who had autism.

Flash forward to his elementary years when we finally received an autism diagnosis.  Even prior to the official diagnosis, autism ruled our lives.  We knew even if the schools and doctors did not want to acknowledge the obvious.  “It isn’t a matter of IF he will talk, it is a matter of WHEN” said one of our teachers.  Sixteen years later and he is considered non-verbal.  He says some words, uses a communication device, and also uses some sign language.  And yet the ability to communicate still creates distress and frustration for our boy.

This past weekend we had the worst meltdown to date.  It involved, hitting, kicking, scratching, trying to bite, banging his head, broken toilet, damage to our home, and a lot of tears.  Monday, we were notified that a room at a care facility had opened up.  This was NOT something we were ready to consider.  At least I was not ready.

 

I cried for days prior to making the appointment.  We finally agreed we would look.  I wish I could say that the places were amazing and I could see our son living there happily ever after. 

What I will say is that walking in the homes of these 12 people who require 24 hour supports made me want to throw up.  Both places smelled of pee.  All the people tried to make each place seem like a viable option.  I was not buying it.  After touring the first place and as my husband was asking questions, I burst out crying and asked to leave.  Why does this seem easier for him than me?  Why does this even seem like an option?  I felt like both places were not anything more than an institution within the walls of a home.  THIS IS NOT WHAT I PLANNED FOR MY CHILD!

He is 16 years old!  Most parents are struggling with their teenage boys wanting fast cars, girlfriends, smoking, sneaking out.  Honestly, I would take those struggles any day if I never had to consider a placement option for my son.  I want my son with me!  I want to kiss him goodnight EVERY night, not just when I go to visit.  Making a decision to put my child there is a goodbye I am not ready for. 

Is that fair to my spouse?  Are we both going to resent each other later either way? 

I totally get that this would allow us to maybe spend quality time with our child, and allow us to have a chance to breath.  But just thinking about this option leaves me unable to breath.  Does it get easier?  Why are there not more options?  Why is it so hard to just get help within our home?  I can’t do this, at least not yet. 

There has to be a way to keep our family together and still get help.  I can’t stop searching for the answer because I am not ready for this option.