The End is in Sight

Callie girl turned 18 almost a month ago.  That means we now have 3 adults with intellectual disabilities living under our roof. Three adults who will need a place to live and people to care for them for the rest of their lives. Chad, our oldest, is 44 and has lived with us since he was adopted at the age of 8 at then end of 1982. He’s lived with us for 36 years, longer than any of our other children. He is not A child, but he is OUR child.

As we began to think about moving our kids in to adult living situations we contemplated many scenarios. When Chad moved in he was very, very busy, not yet toilet trained and he would run away from us on the regular. We thought – if we can just make it till he’s 16 we could look for a group home. Then he aged and mellowed and we got a little better at this parenting gig and 36 years later, here we are.

A week ago we heard of a group home opening that sounded like a possible fit for Chad and  we scheduled a tour. As we got ready to go our emotions started getting away from us. 36 years ago we were counting the time till he could go and now we felt like we were in a tug of war – he should go but we don’t want him to, we’re not ready for him to. It wasn’t the order in which we saw these three moving out. Chad is by far the easiest to live with now. He goes to an amazing day program and we just thought he’d be the last to move out. It also wasn’t a good fit. It just didn’t feel right. Thankfully we have a social worker who assured us we didn’t need to jump at the first opening that came up. She assured us when we find the right place we will know. Hopefully she is right and we’ll be ready.

Every morning he and our dog Ruby connect and as I watch them it reminds me how much I’ll miss him.

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Every day since 1983 we have picked out his clothes, helped him dress, made his food, showered him and brushed his teeth, tucked him in to bed, done his laundry, cleaned up his messes, gone to IEP’s, taken him to countless dental, doctor and therapy appointments, met with social workers and made plans, gone to movies, shopping, special olympics practices and meets, redirected his unacceptable behaviors, taught him as many tasks as he could master and have attempted and continue to attempt to teach him many he never will.

We knew some day we would have to “retire” from these daily tasks, but the reality of that being sooner rather than later is hitting us. The reality of having to trust someone besides  the two of us to care for him, for them, as we have all these years is hitting us. It’s the hardest thing the we, as parents of kid’s who are vulnerable and dependent on others, are going to have to do and that is coming from someone who has survived the death of our Shannon, who was severely disabled. It may sound weird, but we got to finish caring for her. We were able to care for her to the end. We will not be able to do that with the three that still live with us. We are going to have to trust others to do that and we are still trying to wrap our minds around that.

 

Be More like William and Callie

On Thursday we went to court to procure guardianship for Callie. The closer we got to her 18th birthday the more we were dreading it. We’ve been through this process 4 times before and our last time was just 2 years ago so we know the drill. The drill being to expect lots of waiting in places where volume matters, stillness matters, control of behavior matters. All things that Callie wasn’t able to control. That was before medical cannabis(BMC).

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We arrived about 40 minutes early  because we always think the early bird gets to go first. Not necessarily. So Callie and I walked upstairs and all around the courthouse area where we could walk. She’s a speed walker so that took about 10 minutes. We sat back on our bench, Daddy-O was on one and Callie and I on the other.  I ran to the bathroom after our speed walk and when I came back a young man was sitting next to her. He was impeccably dressed in a stylish suit, with a slick new attache case in his lap, polished and groomed from the top of his head to his shined shoes. He chose to sit by Callie. No stranger ever choses to sit by Callie.

Callie immediately engaged him in conversation about her roller coasters and he was all in for conversation. They chatted about roller coasters off and on and we discovered his name was William, he was a brand spanking new lawyer and this would be his first case in court. Don’t know exactly what his case was, but this courtroom is for guardianship, which he was definitely not there for, and probate/estate cases. 

At one point Callie looked him up and down and told him he looked like a magician and William thanked her. We all chatted for probably 15-20 minutes and it was time to enter the courtroom so we parted our ways.

The courtroom was already crowded as we waited as long as possible but there was a place where we could sit with Callie between us. Now the courtroom, in case you’ve been lucky enough to avoid one, is like old day libraries – quiet. Whispery quiet. Callie is not a whispery kinda girl and she is generally only good with her own noise, not anyone else’s. There were also parents there with a daughter who would occasionally make noises. Callie kept looking over, but when we reassured her the girl was okay Callie accepted that. A reminder – never would have happened BMC.

Now I know judges have important jobs. We’d had this judge before. I appreciated how he talked respectfully with the adults who had intellectual disabilities and included them in the conversation. However, this judge made this packed courtroom wait at least 10 minutes before he arrived. That may not seem like much to most people but here’s the thing, most of the parents who were there were tap-dancing and holding their breathe that their adult children’s behavior would stay in check while they waited. He also did not apologize for his lateness and as a real stickler for promptness, I think that’s just rude behavior. Judges should not be above the law, including the law of civility. Ever. 

Six other families went before us and every time we waited for the clerks to call the next name Callie would ask – am I next? Thankfully the actual process took only about 3-5 min. per family. A court visitor had visited every person, generally a physician’s report had been submitted, it’s really just formality and frankly an area our judicial system could streamline. There may be some situations where a court date seems reasonable, but for the vast majority the adults we families are seeking guardianship for, the need is clear and there are more pressing matters which need attention, in my opinion.

When it was finally our turn Callie sat at one table with the county appointed lawyer representing her, someone neither of us had every met, and we sat at our table with our county appointed lawyer, someone we’ve met because she handles all these cases for our county at no cost to us. I don’t know if that’s the case everywhere, but we certainly appreciate it. She answered the judges questions about whether she wanted her mom and dad to continue to help her make decisions  and such with a firm yes. Whew. She held a roller coaster picture, but didn’t attempt to discuss it. Whew. I should probably mention that we had given her a little bump in her MC(medical cannabis) for this occasion.

When we were dismissed we rushed out the door. My only regret is that I wasn’t able to thank William and wish him well on his first case and his future career. Later I mentioned to Daddy-O how cool it was that William chose to sit by Callie and spent the time to talk with Callie. He looked at me, paused, then said, I think William was pretty lucky to have Callie to take his mind off of how nervous he was about his first case. How right he was and how quick I am to worry about whether she’s “bothering” someone or is being inappropriate. However, William clearly found her to be someone worthy of his attention as well as Callie found William worthy of hers.

It did make me smile to imagine that every time William thinks about his first case he will remember Callie with the hot pink ear protectors who love roller coasters. I’m pretty sure William is just the kind of lawyer we need in this world.