Swallowing the Bitter Pill Part 3: It’s all about the Quality!

I am a sucker for a happy ending.  I am a dreamer, a hopeless romantic and forever champion of the underdog. I wish this third installment of my Bitter Pill Trilogy was a happy bubbly post about us finding the perfect home for Zach.  I wish I could tell you we found exactly what we wanted in the spot we wanted.  I wish I was telling you about how excited and happy I am about his new adventures ahead but I can’t…at least not yet.

Mike and I were clueless about the world of adult transition.  We had no idea what would be involved when we embarked on this adventure.  Needless to say we are learning a lot and we are learning that embarking on this journey means donning your battle gear and preparing for yet another fight for what is right.

When I last left you I was describing our first visit to a licensed group home. First a couple of definitions: In our area when I talk about group home I am referring to a home that is run by an agency and has strict rules and regulations that must be (at least you pray they are) followed. When I discuss a personal residence I am talking about a home that usually owned by parents (they are the landlords) and typically an agency staffs the home 24/7.

I want to make it clear that we do like the social worker that handles Zach’s case.  We know she is the mouthpiece and messenger and hates constantly giving us bad news.  That being said, I can only hope and trust that she is advocating and fighting for Zach and not trying to pressure us into taking a slot that is not appropriate.

After the initial group home referral we were ecstatic to get a placement call about a home right in our community and only about five minutes from my work.  The home was in need of two new roommates and was conveniently located right across the street from a special education teacher who still works with Zach on occasion.  We waited and waited to be able to visit and were told that the main resident was experiencing some difficulties and that we would need to hold off.  We were in no hurry so we waited…..and waited…..and waited.  Something seemed awry, we were not being told any information. Then at one of the meetings, our caseworker discussed that our agency might not provide the 24 hour care Zach would need at the personal residence due to budget cuts but she would get back to me with an answer.  Guess what?…..We are still waiting for those answers.

While waiting for answers, two new referrals come in.  Good news I am told, they are in C-Town.  My interest is peaked but quickly wanes as I am told that house number one has five elderly men in wheelchairs and he would be the sixth resident, AND he would have to share a bedroom.  I looked at the caseworker and said “OK when do we need to get a lawyer?”  “I want to look at personal residences or better yet I want us to start our own place.”  She told me that a lawyer would not help,  they had many open spots in licensed group homes where he would be taken care of and safe. She said they had “spots that needed to be filled because otherwise it cost too much money.”  I stared at her blankly and said “So in other words, no one cares about Zach’s quality of life, they just care about filling their beds!”  She looked sadly and said “Don’t say that, it makes me feel bad.”  I told her that I knew it was not her personally making these decisions…that she was just the messenger but I also said “To even suggest that our twenty year old  very active son be placed with five elderly men in wheelchairs and share a bedroom speaks volumes to the fact that his quality of life is not first on the priority list.”

The second home was also in C-town.  In fact, this home was only ten minutes from our house.  Again, this home had six residents they were several years older than Zach but very active.  The deal breaker is that he would have to share a bedroom. Our caseworker told us she would inquire about the possibility of Zach having his own room :this is a NON-NEGOTIABLE.  Zach can not share a room, it would not be fair to him or to the other resident.  Zach is up frequently, and I have no doubt he would crawl in bed or worse yet jump into his room mates bed. Not happening!   Long story short we were told that he would have to share a room or the home was a no go……….it’s a no go.

Bottom line is Zach’s quality of life is important.  It is imperative, and I will not sacrifice his quality of life in hopes to make ours better.  I am disheartened that anyone would ask us to even consider for one second anything but the best for our son.  We are lucky that we do not HAVE to make these tough decisions, other parents are not afforded the choice either because they can not cope, their child has become dangerous or because they have become ill or passed away.  We have choices and we have options.

I am tired; I am spent emotionally.  There have been a lot of tears and frustration and most days  I want to throw in the towel (actually I want to tell the agency where they can shove the towel 😉   But I know that I have to keep up the fight. The right place, the perfect place for Zach is out there.  I have to believe that.

So, sadly this is not the happy ending I had hoped to share. I guess that just means my story isn’t over. Don’t you fret, I have some irons in the fire,and some tricks up my sleeve.  This fat lady ain’t sung yet!   There will be a part 4 and it will be called “Doing the Happy Dance” instead of Swallowing the Bitter Pill.

I’m not sure when I will be able to write part 4, it seems the system is broken and we need to help give it some CPR.  So until we are presented with a home that provides all the things Zach needs to have not only a house but a home that gives him a quality life I guess we are going to keep up the good fight.  My boy deserves nothing less.

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2 thoughts on “Swallowing the Bitter Pill Part 3: It’s all about the Quality!

  1. Thank you for continuing to write this. I have referred your blog to others. I don’t always have the right words, but I think you are Mike rock!

  2. You are my pioneer. You’re absolutely right…it’s about the quality. You’re an amazing mom, and I’m so proud you are my friend💗

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