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.

Let the blogging begin...

Since everyone seems to be blogging I thought I would give it a try.  I have always wanted to blog but I just didn't feel I had a reason considering I facebook, twitter, and all that other stuff.  However, these past 2 weeks I have been motivated by an amazing girl who has Autism. 

Carly Fleischmann has autism and one day started typing to get her thoughts out.  Everyone has been amazed at her accomplishments. I find her completely facinating not just because of what she is doing, but because we share the inability to communcate with our son, just like her family did with her for so long. 

For more information about Carly check out her web site: http://carlysvoice.com/

Her parents tell of using motivators to increase her typing.  Our son Jake just turned 12 and speaks very little.  Most of the time he might say one or two words at a time.  Most words are because he is wanting something.  He will say milk, juice, bath, eat, please, Jeep, bike, etc.  Sometimes his request are followed by please.  Sometimes we can prompt him to say Please Mommy, or Please Daddy. 

He does write and read many words but never consistently.  This past weekend, I walked into our bathroom and on his white board was written "cap."  I quickly realized that no one else in the family wrote the word.  I later found the marker in his room. 

This lead me to the idea that I would use Jake's white board much like Carly uses her computer.  I would request that Jake write words for the items he asks for each day, such as milk, juice, chips, ice cream, hot dogs, etc.  I wrote the words on index cards in simple black and white letters and put them in a ring holder.  When Jake wanted juice, I made him write for it.  I was amazed the first time he did it. 

The first day went well.  Some words he wrote easily, some he had a harder time with.  All were recognizable.

The second day, he started to be silly like he so often does.  He started adding letters into the words and then laughing.  Sometimes if he was being really silly, I erased his word and made him do it again.  He seemed to be getting the hang of what I was wanting from him but he was also letting me know with laughing and added letters that he was in control of just how much he was going to comply with my requests.  Fortunately for me, I was the one holding the juice and ice cream. 

The second day, he wanted juice.  I said to him "you know what to do."  So he walked over to the white board and started to write.  Then he saw that the index card was showing the word Elmo.  He then picked up the index cards, flipped through them, and found the word juice.  He put the index card down beside the white board and wrote juice in clear letters.  I was amazed to say the least.  That was a moment I wish I had on video. 

As you can see, it was a nice start to a new learning style.  I'll keep you posted on how we continue.