Every year about this time we attend Ryan’s annual ISP (Individual Service Plan) meeting.
In this meeting we discuss how he’s done over the past year and his goal for the upcoming year. For those who haven’t been following my blog, let me give you some history and information.
Ryan is our oldest son. He is 31 years old (yes, I have a 31-year-old and a 3-year-old). Ryan has autism and functions at the lower end of the spectrum. He is non-verbal and has a related seizure disorder. He is also a client of Charleston Transitional Facility (CTF) in Charleston, IL and resides with 6 roommates and full-time staff in one of CTF’s homes.
CTF isn’t the first agency to provide services for Ryan. We began applying for post-high school services before Ryan graduated. We also began looking at agencies who could provide work and residential services. The first agency was a no-go, primarily because they were having severe financial difficulties. Eventually, they closed their doors. The second agency was decent. It was close to our home, they seemed willing to work with us and were up to the challenge of assisting Ryan in meeting his full-potential. We completed the necessary paperwork and began to slowly transition him into his new home with the agency. All went well in the beginning, but over a 4 year period, things went downhill. It became increasingly evident that the agency was not in business to provide services that were in the best need of all their clients. For those clients that were more challenging, like Ryan, they were big believers in getting psychiatrists involved to help medicate those clients into compliance. We were in a tough spot because not medicating Ryan meant no services with the agency and no services put Ryan at risk of losing his funding for services. However, as time went on we lost the Ryan we knew to stronger and stronger medications. We HATED it. We felt caught! We were in a system that held us prisoner. Ryan needed services. We could not pay the thousands of dollars it would cost us out-of-pocket to pay for these services and we could no longer provide for his daily needs at home. His needs were just too many for two people. We were at a loss on what to do.
Then one day the agency asked us to come for a meeting. It took them all of 5 minutes to tell us they were discontinuing Ryan’s services. His needs were just too much for the agency and all their attempts to medicate him into compliance weren’t working. They needed to do what was best in order to keep their staff and Ryan was detrimental to their cause.
We left that meeting in fear. We had no idea what we were going to do. We had a little girl at home and one on the way. We had absolutely no idea how we could possibly bring Ryan home and care for him with two little ones at home. We knew we had to do everything we could to find a new agency before Ryan lost all his funding for services so I immediately began scouring the internet trying to find any agency within the State of Illinois that knew anything at all about Autism and might be willing to accept Ryan as a client.
As the parent of an adult child with autism, there is this weird disconnect between the part of me that is always responsible for caring for my child and the part of me that realizes it is in everyone’s best interest for my child to move on and be cared for by a staff of individuals who are better equipped to provide a level of care I can no longer provide. I also realize that my child deserves to have his own life away from mom and dad just like every other ‘normal’ adult child. There is a lot of emotion involved, especially as I searched for a new agency.
By that afternoon I had made contact with three potential agencies.
We started with another agency closer to our home. We went to visit. We stalked to the director, supervisors and staff. We took Ryan for visits, but after a few visits it became increasingly clear that this agency did not have enough experience and would not be able to meet his needs, so we moved on.
Our next stop was a meeting with the director and management at CTF. The hurdle we had to jump was the fact that the agency was over 2 hours away from our home. How could we stop in for visits? How could we see Ryan as often as possible? Ultimately, we realized that finding an agency that we could work with and an agency that could provide good services to Ryan was the most important thing so we made the drive and sat in yet another meeting. The difference this time was leaving that meeting with a true feeling of optimism. This was the first agency we had ever spoken with that ‘got it.’ It was very evident that they understood. They understood autism. They understood our frustration. They understood our concern. We didn’t know for sure this would work out, we weren’t absolutely sure they believed we were being honest about our concerns and complaints about his current agency, but we felt good about how things went when we left.
We also knew that the next steps in the process were vital and while still feeling optimistic, we were also fearful that this could end up being yet another dead-end.
The first thing that had to happen was a visit with Ryan at his current home. We meet her at his home along with the site manager. To say this meeting went well was an understatment. The site manager couldn’t have done any more to prove to this woman just how much they didn’t understand Ryan or autism. A short time into the visit she felt CTF would be a much better program for Ryan and they wanted to work with us and more importantly they wanted to work with Ryan. This was the light at the end of a very dark tunnel.
Fast forward to yesterday. Ryan has been with CTF for 3 years and there have been many ups and downs. Two things have remained consistent are thhe agency’s committment to Ryan and Ryan’s consistent improvement during the time he’s been there
Yesterday we sat in another meeting listening to each staff member in attendance talk about Ryan as we set his goals for the upcoming year. We were not hearing stories of a man under the influence of strong medications meant to drug him into compliance. We are no longer seeing a man unhappy and lashing out as he tries everything he can to find a way of communicating his wants, needs and feelings to those around him. We weren’t hearing about a man sitting with staff in a house or apartment, away from others. Instead, we were hearing about Ryan. We were hearing stories him going shopping and to movies. We were hearing about his successful days at day training. We were hearing how he has put 20 lbs on over the last year (for me 20 extra pounds would not be a good thing, for him it’s a great thing). We heard about stories of staff asking to be his one-on-one. We heard about the plans staff have for adding more supports to make his life easier and better. We heard the staff member as she leaned toward me se she said sincerely, “He’s my favorite.”
The Ryan who was once hidden away by an agency and held hostage by a system that doesn’t work for the good of those who need it most, has broken through the barriers. He has been given a new lease on life and he is doing better than we had hoped. We have Ryan back and look forward to seeing him grow into the best Ryan he can be.
Thank you CTF for being part of Team Ryan!!!!!
This was so heart warming to read. To know that there are people out there who care and genuinely want to help others reach their full potential is great. To read about movie outings and shopping… wonderful!! xx Long may Ryan continue to have a good life with these amazing people who are letting him be himself! x
Thanks Alison! An individual’s disability should never be an excuse for poor quality of life. I didn’t know how grateful I would be to the first agency for terminating services, but am now so happy they did. Ryan is in a better place in so many ways.
And from the sounds of it he is having a much better life, experiencing life, as he should! You are a good parent. x
His quality of life is tremendously better and it is making all of us happy, especially Ryan.
Great to hear Deb, you know how much I love that kid!
I do know how you feel about Ryan. To know Ryan is to love Ryan. The transformation he’s made over the last couple of years is fantastic, but he still likes A-1 sauce.