Autism Moves Out

Strap in, Ladies and Gentlemen…it’s going to be a heck of a ride.

In my very first post on this blog, I tentatively put out there my impossible dream of one day finding a house for CJ…somewhere he could live as independently as possible, and build a life that would last even after I’m gone.

April 2, 2013 – I posted my impossible dream.

February 29, 2020 – CJ moved into his new house.

Seven years.  Seven years of mainstreaming and therapy and football and registering for the Selective Service, being prom king, becoming his own avatar, graduating from high school, getting a job, entering the Inspire day program, being interviewed on Fox News, and going to “college.”  Seven years of carving out a path for my son without being sure where we were going.

Almost a year ago, I found out that Inspire might be setting up a group home.  It wasn’t a sure thing, even though it looked promising.   The county had  a house that had been used as a group home prior, and was willing to lease it to Inspire at a small cost. The house was 2 miles away from our home.  It was the right size, the right location, the right organization and the right timing.

Suddenly, I and several other parents has our laser sights set on that house.

We, along with the Inspire representatives, marched down to the county commission meeting, where it would be decided if we would receive the lease on the house.  Oh, how we wanted that lease.  We all got up  and spoke.  We explained.  We laid it out.  We held up photos.  We teared up.  I, who normally love public speaking, was shaking and streaming tears as we tried to make the commissioners see what a difference this house would make for our families. 

The commission listened.  When they could finally get a word in, they told us we were waaaay over selling ourselves – they had us on the docket to approve. YES!  We got the lease and left the building triumphant.

The house had already been remodeled.  It was nearly move-in ready.  But the first step was to start an application list for people interested in living in the house.  CJ was one of the first people on the list.

The end?

Not quite….

We applied for funding with the state.  That application process takes weeks, at best.  Meanwhile,  the house was completely finished.  There was an open house for the public.   We picked out CJ’s room.  And we’re waiting and waiting…on pins and needles for the state to answer us. 

They finally answer. 

Funding is denied. 

It seems that CJ has done so well assimilating, that the state feels he really doesn’t qualify for needing an independent home.  Because we’ve been successful in integrating him into the community, he doesn’t qualify to join the community.

We are devastated.  The logic is terrible.  We are now right back to looking down the barrel of a half life for CJ, trapped with his parents in a house until they age and die, and then the prospect of an institution in his middle age.

What’s it all been for?  How could this even be possible?

There is an appeals process.  But how do I even try, one more time, to fight the fight to stand up for my son?  What would make a difference?  My congressman?  Members of the community who know CJ?  His doctors?  A lawyer?  My coordinator suggested starting by resubmitting the paperwork with some additional information about how CJ cannot safely be alone.   Fortunately, I know just the person…a person who knows CJ better than most and who is an expert in her academic field of special education.  One magnificent letter from this amazing person combined with a reapplication, and we resubmitted.

Meanwhile, the house is filling up.  The rooms get filled one by one.  The room we picked out gets taken.  And then there was one….one room left.  Still no answer from the state.  My level of anxiety was off the charts. I aged five years. 

And then it came.  The phone call we have been waiting 24 years for.  The funding came through.  He can move out.  He can move in.  And he got the last single room in the house. 

In the end, the impossible was kind of ordinary.  The room was already furnished so we just moved in clothes and a TV.  It took longer to get the TV set up than to move everything else in.  It took so long that CJ finally told us to “get out”.  I politely asked if he would like me to remain and finish setting up the TV or get out.  He graciously said, “You can do it”. 

Thank you, son.

As we drove away, I expected waves of emotions and some sadness.  Instead, I felt nothing but relief and happiness.  He was perfectly happy there. 

When he’s OK, I’m OK.

I get text updates and/or phone calls everyday from someone at the house.  He is happy.  He is  eating what everyone else is eating.  He sat perfectly still while they shaved him.  He even got a haircut without me there.   

I tried calling him yesterday, but he had a visitor.  The baseball coach from the high school had come by to visit, so he couldn’t talk.  He was too busy to talk to his mother.

Awesome!

He will yell “Hi!” and “I love you!” back at me, but he has much more interesting things to do.

And so this chapter comes to an end.  And I know this is just the beginning of a new chapter.  Oh, what a chapter it’s going to be!