On Friday, we had our regular quarterly meeting with Alex’s support
team. Like IEP and case conference meetings held for students, the quarterly meetings allow us as parents to discuss Alex’s progress, gain input from the
professionals who work with him, and make plans to keep him moving forward.
Since Alex is doing well, especially considering that he has been able to have
doses of three medications reduced successfully and one discontinued completely
in the past year, we anticipated that the meeting would go smoothly. In
addition, we are blessed to have fantastic support professionals who not only know how
to bring out the best in Alex, but also celebrate with us the achievements he
is making along the way.
The State of Indiana has recently begun person-centered planning with clients who have disabilities, so we knew this would be a primary focus of our meeting. Using a model called Life Course Tools (which is available online at lifecoursetools.com), the state has begun developing portfolios for “Charting the Life Course,” which is a lengthy process. Case managers are expected to discuss with individuals and their families eight life domains: daily life employment, community living, social and spirituality, healthy living, safety and security, citizenship and advocacy, supports for family, as well as supports and services. By asking various questions, the goal is to develop a plan for the future, a “life vision,” that allows a “full, inclusive, quality life in the community.”
Having read the materials online prior to our meeting, I was uncertain how Alex might answer these questions, especially since some of them seem rather abstract. However, he did amazingly well at providing the information needed to begin developing his plan for the future. With the reduction of medications, we have noted that Alex has been able to answer questions with less reliance on us to speak for him. He’s more alert and more decisive; moreover, his eye contact, volume, and speech have improved greatly. As he answered various questions, he looked at the person speaking to him, spoke up, and used complete sentences to convey clearly his ideas. His calm manner reflected his improved social skills, and his ability to express himself without asking us, “What would be good?” showed increased independence.
Noting his improved social skills, we explained that Alex is learning to use manners without constantly being reminded. When we asked him why that was important, he said that he didn’t want to be “rude” and then commented that not using manners is “disrespectful.” He displayed politeness by not interrupting others and by answering any questions asked of him, showing that he was paying attention and wanting to engage with other people. Moreover, he never complained that the meeting was taking too long, as he has at times in past meetings.
To gain insights into Alex’s priorities, his case manager asked him what kinds of things he enjoys. He listed "game shows, Walmart, Nanny’s house, and V.U." When asked for more specific details, he said that he likes The Price Is Right and Wheel of Fortune, shopping at Walmart because it’s a big store, going to his grandparents’ house because it’s “special,” and going to basketball games at Valparaiso University. His response came as no surprise to us, knowing what’s important to him. When asked what he likes to do, he said hiking at Coffee Creek (a nature preserve near our home) and going to concerts in the park. When he was asked what he’s good at, he immediately said math, and when asked about his ideal job, he said meteorologist. Some things never change; he has loved math since he was little and has told us for more than twenty years that he’d like to be a meteorologist someday. His love of numbers and weather has never waned over the years, and he clearly knows what he finds interesting. When we were asked what types of jobs we thought Alex might do someday, I mentioned that his computer skills, especially his excellent keyboarding skills, along with his attention to accuracy and details, might be used well in a job involving computer coding. His case manager seemed to think that could be a good match of his interests and abilities.
When discussing future living arrangements, his case manager asked Ed and me where we thought Alex would live “for the rest of his life”—at home with us, in a group home, or in supported living with a roommate and a caretaker in an apartment. A few years ago, we were told that Alex would likely live with us until we’re in our eighties because funding and housing for adults with disabilities is limited primarily to those with greater needs. We decided that we would make the best family life possible knowing that Alex will live with us for many years, and we are fortunate that he is quite pleasant 99.9% of the time. However, the “for the rest of his life” part of the question seems tricky.
While Ed and I confidently said, “I do” in our marriage vows with the stipulation “for as long as we both shall live” without hesitation, thinking about the rest of Alex’s life is different. For one, he is likely to outlive both of us, and we worry about who will care for him once we’re gone. In addition, autism has taught us to live one day at a time, one step at a time, one milestone at a time. Looking down the road too far can be overwhelming, thinking of all the skills to master and things to do, so we focus on accomplishing one thing at a time. Planning for the future is not the same with a child who has autism.
Moreover, I wondered how our response to the living arrangements inquiry reflects upon us as parents. If we want him to live at home with us, does that make us overly protective parents or simply caring ones? If we want him to be in a supported living arrangement with a caretaker, does that make us selfish parents or simply ones who want him to be independent? As the emotional mother, I responded that we thought Alex would probably live at home with us for a long time, and we are happy to have him here. As the rational father, Ed wisely added that we want Alex to be as independent as he can be and hoped that someday he might be able to live on his own. Knowing that is ultimately what’s best for Alex, especially since we may not always be able to care for him, I agreed with Ed.
Ironically, I thought the difficult part of person-centered planning would be getting answers out of Alex, but he had less trouble responding to the questions than I did. He has developed a clear sense of his likes and dislikes and strengths and weaknesses and has learned to express what he wants and needs. However, I over think things too much and should take a cue from Alex about just answering candidly. I’m sure this process of developing his Life Course plan will make me ponder many aspects of Alex’s life, and I hope I gain more insights along the way.
Apparently, his case manager was quite pleased with how well the meeting had gone, as she told us more than once how “easy” we had made things for her and remarked that we had given her quite a bit of good information to include in Alex’s portfolio. Moreover, she commented that she rarely sees “success stories” in her field, but that Alex has, indeed, been a success story with the progress he has made. Interestingly enough, Alex’s behavioral therapist used that same phrase recently, when she told me that she will be presenting Alex’s “success story” at her company’s annual meeting next month. To think that six years ago, we were overwhelmed as to how to help Alex overcome his extreme anxiety and aggression, and that now his team views him as a rare success story is truly a blessing. As we continue to look forward to Alex’s future, whether it be in the coming days, weeks, months, or even years, we thank God for the wonderful people He has sent to help Alex and for the prayers He has answered and will continue to answer to help Alex succeed.
The State of Indiana has recently begun person-centered planning with clients who have disabilities, so we knew this would be a primary focus of our meeting. Using a model called Life Course Tools (which is available online at lifecoursetools.com), the state has begun developing portfolios for “Charting the Life Course,” which is a lengthy process. Case managers are expected to discuss with individuals and their families eight life domains: daily life employment, community living, social and spirituality, healthy living, safety and security, citizenship and advocacy, supports for family, as well as supports and services. By asking various questions, the goal is to develop a plan for the future, a “life vision,” that allows a “full, inclusive, quality life in the community.”
Having read the materials online prior to our meeting, I was uncertain how Alex might answer these questions, especially since some of them seem rather abstract. However, he did amazingly well at providing the information needed to begin developing his plan for the future. With the reduction of medications, we have noted that Alex has been able to answer questions with less reliance on us to speak for him. He’s more alert and more decisive; moreover, his eye contact, volume, and speech have improved greatly. As he answered various questions, he looked at the person speaking to him, spoke up, and used complete sentences to convey clearly his ideas. His calm manner reflected his improved social skills, and his ability to express himself without asking us, “What would be good?” showed increased independence.
Noting his improved social skills, we explained that Alex is learning to use manners without constantly being reminded. When we asked him why that was important, he said that he didn’t want to be “rude” and then commented that not using manners is “disrespectful.” He displayed politeness by not interrupting others and by answering any questions asked of him, showing that he was paying attention and wanting to engage with other people. Moreover, he never complained that the meeting was taking too long, as he has at times in past meetings.
To gain insights into Alex’s priorities, his case manager asked him what kinds of things he enjoys. He listed "game shows, Walmart, Nanny’s house, and V.U." When asked for more specific details, he said that he likes The Price Is Right and Wheel of Fortune, shopping at Walmart because it’s a big store, going to his grandparents’ house because it’s “special,” and going to basketball games at Valparaiso University. His response came as no surprise to us, knowing what’s important to him. When asked what he likes to do, he said hiking at Coffee Creek (a nature preserve near our home) and going to concerts in the park. When he was asked what he’s good at, he immediately said math, and when asked about his ideal job, he said meteorologist. Some things never change; he has loved math since he was little and has told us for more than twenty years that he’d like to be a meteorologist someday. His love of numbers and weather has never waned over the years, and he clearly knows what he finds interesting. When we were asked what types of jobs we thought Alex might do someday, I mentioned that his computer skills, especially his excellent keyboarding skills, along with his attention to accuracy and details, might be used well in a job involving computer coding. His case manager seemed to think that could be a good match of his interests and abilities.
When discussing future living arrangements, his case manager asked Ed and me where we thought Alex would live “for the rest of his life”—at home with us, in a group home, or in supported living with a roommate and a caretaker in an apartment. A few years ago, we were told that Alex would likely live with us until we’re in our eighties because funding and housing for adults with disabilities is limited primarily to those with greater needs. We decided that we would make the best family life possible knowing that Alex will live with us for many years, and we are fortunate that he is quite pleasant 99.9% of the time. However, the “for the rest of his life” part of the question seems tricky.
While Ed and I confidently said, “I do” in our marriage vows with the stipulation “for as long as we both shall live” without hesitation, thinking about the rest of Alex’s life is different. For one, he is likely to outlive both of us, and we worry about who will care for him once we’re gone. In addition, autism has taught us to live one day at a time, one step at a time, one milestone at a time. Looking down the road too far can be overwhelming, thinking of all the skills to master and things to do, so we focus on accomplishing one thing at a time. Planning for the future is not the same with a child who has autism.
Moreover, I wondered how our response to the living arrangements inquiry reflects upon us as parents. If we want him to live at home with us, does that make us overly protective parents or simply caring ones? If we want him to be in a supported living arrangement with a caretaker, does that make us selfish parents or simply ones who want him to be independent? As the emotional mother, I responded that we thought Alex would probably live at home with us for a long time, and we are happy to have him here. As the rational father, Ed wisely added that we want Alex to be as independent as he can be and hoped that someday he might be able to live on his own. Knowing that is ultimately what’s best for Alex, especially since we may not always be able to care for him, I agreed with Ed.
Ironically, I thought the difficult part of person-centered planning would be getting answers out of Alex, but he had less trouble responding to the questions than I did. He has developed a clear sense of his likes and dislikes and strengths and weaknesses and has learned to express what he wants and needs. However, I over think things too much and should take a cue from Alex about just answering candidly. I’m sure this process of developing his Life Course plan will make me ponder many aspects of Alex’s life, and I hope I gain more insights along the way.
Apparently, his case manager was quite pleased with how well the meeting had gone, as she told us more than once how “easy” we had made things for her and remarked that we had given her quite a bit of good information to include in Alex’s portfolio. Moreover, she commented that she rarely sees “success stories” in her field, but that Alex has, indeed, been a success story with the progress he has made. Interestingly enough, Alex’s behavioral therapist used that same phrase recently, when she told me that she will be presenting Alex’s “success story” at her company’s annual meeting next month. To think that six years ago, we were overwhelmed as to how to help Alex overcome his extreme anxiety and aggression, and that now his team views him as a rare success story is truly a blessing. As we continue to look forward to Alex’s future, whether it be in the coming days, weeks, months, or even years, we thank God for the wonderful people He has sent to help Alex and for the prayers He has answered and will continue to answer to help Alex succeed.
“May He grant your heart’s desires and make all your plans
succeed. May we shout for joy when we hear of your victory and raise a victory
banner in the name of our God. May the Lord answer all your prayers.” Psalm
20:4-5
2 comments:
Wonderful to hear! I think about you all a lot, and I’m always sending the best mojo your way. ❤️
Thanks, K.C., for your kind words and good wishes! Your friendship and support mean more than you know.
Love,
Pam
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