Wednesday, October 18, 2017

This week, I tried to see his future


The question has always been there, hanging over our lives. As Max gets older, it looms larger: Where will he live when he's an adult? Will he go to a group home or some sort of residential facility? What kind of options might exist down the road that aren't available now? Who will look after him the way Dave and I do? Or will Max always be at home with us? A few days ago, I thought I glimpsed a potential answer...but it really wasn't.

Sabrina signed up to volunteer at a local temple for a Saturday morning service for adults and young adults with disabilities. Max had speech therapy, but might attend at some point. Sabrina and I headed over, found the classroom and chatted with the woman leading the service as attendees arrived, middle-aged adults with Down syndrome and intellectual disability accompanied by aides. A lot of them lived in group homes, I found out, run by an organization in our state. 

A young woman walked in wearing a t-shirt emblazoned with "Love Love Love" in sparkly letters. The leader told me that she resembled another young woman who was her best friend and soon enough, that woman arrived and they hugged. They did look alike, and she was wearing the same shirt in a different color. At first, I wasn't sure if they were attendees or volunteers. Later, I found out they lived in a group home together. They appeared to be in their twenties and of all the adults there, they were most comparable to Max in terms of communication and social engagement. I was intrigued. 

Sabrina paired up with a woman who needed help turning the pages of the service book. Minutes later, I left and went outside to the car; I wanted Sabrina to be independent. I sat there and googled the name of the organization, and discovered that they ran 11 group homes, a supervised apartment and supported living arrangements in our area. I was floored. All this time, I never knew.

Turned out there is a group home in our town, an even bigger whoa. It took some digging but I found the address. It's located in a part of town that's fine but not especially nice, and per the Google maps appeared to be across from a park where Sabrina has played lacrosse.  I stared and stared at the photo, as if looking could tell me something. The home appeared to be well kept. But what lay inside?

The window to the classroom was open and I heard the prayers and songs drifting out, enveloping me in hope. I returned before the hour was done and stood in the back. 

One of the "love" t-shirt women was pouring cups of juice for the group. Two attendees, a man and a woman, sat in front of me next to an aide. I watched as a volunteer walked over to the woman, leaned down, grasped her shoulders, looked her in the eyes and said, "We've known each other for a long time. You know I love you, right?" The woman beamed at her. 

My eyes filled with tears and I turned my head to the side. I was overcome with emotion. I wondered if the older adults had family who visited them. I pictured Max as an adult in that room, accompanied by an aide, alone without me. It was too much to ponder. 

I wiped my eyes and turned back to watch the end of the service. The final song was about what God had created each day of the week. A man jumped up to sing it and once again, the voices in the room rose in song, especially ebullient at the end of each refrain: "And it was good."  

Most of the group headed to have lunch afterward. We couldn't stick around but going forward, Sabrina will be there for that and the afternoon program. Maybe Max, too.

On the ride home, I felt compelled to drive by the group home. But we were having a photographer come over for a family photo shoot and Sabrina needed a couple of hours to do her hair and get dressed, because: tween. 

I got there early the other morning. Sure enough, it was right across from the park I knew. I drove into the lot directly across the street, got out of my car, stood there and stared. Nobody was around. It was a gray day. The home's curtains were closed; all I could glimpse was a lit light fixture. The house was pleasant enough. Caught up in my anxiety about Max's future, though, it looked depressing. I thought of those aides in the classroom. Some had seemed warm and nice. Some had appeared to be a bit brusque, treating their clients like errant children, which perturbed me. 

Who would be there to help Max with food prep? To help him take a shower? To talk with him about his interests and engage him? To encourage independence? What friends would he have in a home? Would his therapists go there? What activities would they do? Would he miss us?

I felt increasingly anxious as I stood there. Finally, I got back into the car and drove off to do errands.

Who. 

Knows. 

I've tried looking up the other homes. My search skills are pretty good, but I managed to Google only one nondescript ranch. I'm guessing the fact that they're not easily found is purposeful, to protect residents' privacy but also potentially shield them from small-minded locals who might not appreciate having such a home in their neighborhood. I could probably find more of the houses by asking around, but I think that would be headed down an (even more) stalker-ish, obsessive road that will do me no good.

Finding residential placement isn't easy in our state. I've heard of parents pooling resources, including funding from their states; purchasing homes for their adult children; and staffing them with aides. Or perhaps Max will choose to live at home, and Dave and I will spend our retirement visiting fire stations around the world with him. (Yes, I've mulled over that, too.) In my fantasies, Max is living on his own or with a friend, but I am dubious mainly because of the life-skills help he needs. 

What I do know is that Dave and I will be there, when the time comes, to research the heck out of all possibilities—residences, along with supportive organizations and parents who've been there, done that. We have pushed and fought and paved the way for Max for these past 15 years, and will do the same for housing when the times comes, guided by both his needs and wishes. Hopefully, he will advocate for himself as well. 

What I also know—the common sense that forces that anxiety monster to stop rearing its head—is that Max will be OK. It's impossible to even guess what his capabilities will be as an adult but no matter what, he will still be that charming, cheerful, good-natured yet determined person. He will find his place in the world because he always has. 

To paraphrase that line from the prayer-service song: "And it will be good."

20 comments:

  1. Oh Ellen. Like every other parent reading this, I want to hug you and tell you that it will be OK. Because, it will. There are families who have paved the way with organizations like PLAN Institute (see US groups here) http://planinstitute.ca/what-we-do/leadership/inspired-by-plan/ - these are orgs that help families plan a GOOD LIFE for their children with disabilities after we die. The model is based on the core belief that loving relationships keep our children safe and engaged in their community, no matter where they live. Sustaining those loving relationships over the lifetime of our kids is the challenge that PLAN and other similar organizations have addressed. Our Nick lives in a nearby care home and we talk to him several times each day (Nick is in charge of a family/friends NHL hockey betting pool so has to update the daily scores with my husband LOL) and we see him at his home or ours at least once a week. Sometimes he's too busy for us. When he's not well (as in the last four months when he was in the hospital), we hover beside him. Max may well be able to live independently with his own support staff coming in daily as needed. He will have a rich life because you and your husband will build it for him, just as you have built a great childhood for him now. Expanding Max's personal support network to include neighbours and friends (including other fans of fire stations!) will be important. Rest your heart, but do begin to envision a future that is wonderful for Max and for your family. DON'T begin envisioning that future based on what's available for people with disabilities in your community currently. Imagine the best, Mon-Fri for work or programmes and weekends for fun and family. I hug you! xoxox

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    1. I am sorry, Donna, I did not know Nick was in the hospital—I hope he is fully healed, I love that he is running the betting pool. Your words are a virtual hug, because I found them so comforting and heartening. And your advice is excellent. THANK YOU.

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  2. I came to the comments to offer nothing more than the pablum that you will figure it out, something you know.

    How amazing to see Donna's comment above.

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  3. This is a very timely post for me (indirectly)...Last month it was made public that a house on the street where I formerly lived for a decade (we moved three months ago) was purchased with the intention of being made a group home for six adults with Autism and/or Cerebral Palsy. There was an article in one of our local newspapers with a multitude of negative comments from my former neighbors who are protesting having a group home on the street saying it will create unnecessary traffic and also affect other homes' resale values. I was saddened I lived in close proximity to such intolerance. In fact, the people who live across the street from what will be the group home have just listed their home for sale in response. The silver lining, is in response to the article, many others in the community spoke out in support of the group home and a follow up article, a much more positive one, was published. I can only imagine the anxiety you feel being faced with the prospect of having to find a living situation for Max when he is an adult. But you and Dave are amazing parents, and I have no doubt you will find the best possible place for him.

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    1. How awful to hear about the response of some people to the group home, and how great to hear about those who came to its defense. Thanks for the nice words about Dave and me; I know that we will always try our best for Max but still, yes, the great unknown is unsettling. I've gotten some great leads on places and groups on my Facebook page, and starting a list has felt good. I always feel better when I make lists. It's like therapy!

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  4. I'm not sure what is available in your state, but in California we have In Home Support Services (IHSS) which can provide up to 283 hours a month of help with things like shopping, cleaning, personal care, and protective supervision (for people with intellectual disabilities or severe mental illness). These hours can sometimes be supplemented with hours paid for by the regional center or provided by fanily or friends to allow an adult with a disability to live independently or in a shared apartment situation but with the help and supervision they need.

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    1. I just looked this up and yes, it exists in our state, although I know that funding for programs in our state is not great and that there are long wait lists—all the better for me to start poking around now and gathering information. Thank you for this.

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  5. I have no doubt that you will find a wonderful situation for Max when the time comes. You are an amazing parent and a fierce advocate for Max and you have always secured the best care, treatments, and therapies for him. You have filled his life with meaning, happiness, love, laughter and learning and I know you will figure out something that allows Max to have all of these things Throughout his life. And don't forget that Sabrina and Ben love him too and will always make sure he is happy and fulfilled and surrounded with love. And Max will always have friends because he is charming and sweet and fun to be around. I would be the last person to tell you not to worry because I worry about everything, but you should trust in your own power to create a wonderful future for Max.

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    1. I read this late last night and teared up, in a good way. And I just reread it and teared up again...in a good way. So beautifully said, and so true about Max and the support he will have down the road—and the way he attracts people to him. He has that gift. xoxo

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  6. As the mom of an autstic young adult I have the same concerns. My son's problems are mainly economic--he can manage his life--he drives, he works a $10 per hour job, but itt has irregular hours, he is my chauffer and go-for but he doesn't earn enough to support himself and right now I don't see that changing. He has said he is going to take care of me and my husband when we get old, and I believe him. Hoepfully there is enough money left when we are done to support him for the rest of his life.

    On the one hand, he has no desire to move out, we are happy to have him here and he is a contributing member of our family. On the other hand, I've heard there are advantages to getting them settled somewhere else--basically so they don't lose their family and their home in close succession.

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    1. Oh, I seriously hope he can find higher-paying work that's full-time. He sounds like a competent and thoughtful young man.

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  7. A topic ever in my thoughts as my daughter is 18 now...terrifying for so many reasons. I watched my beloved Grandmother treated horribly for the 8 months she had to go into nursing home...people can be amazingly caring or amazingly callous and it's a toss up. Good post to follow though for all the comments and suggestions

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    1. I am so sorry that happened to your grandma. What is WRONG with people?! I understand how that would trigger concern about the care your daughter will receive, but now that you have dealt with that unfortunate situation, it seems like you would have a better sense of what to look out for in a residential placement.

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  8. There's no right or wrong way to do this. However, I would suggest that in addition to looking at how a residential program looks and feels, think about its structure and the power relationships it maintains. Max might need a lot of help from paid professionals, and you want them to be kind and dedicated. But also think about whether Max would have any authority to change things if and when he runs into a staff member who ISN'T nice or dedicated. He might live in a "group home," run by an agency, but would he have adequate space of his own, where he could have privacy, where people would have to knock before coming in? Would he own his own furniture and sheets, eating utensils, and other stuff adults typically own? Would he be able to choose who he lives with, or choose to live alone if that's what he wants. These are fundamentals that are as important as incident records, background checks, and community reputation in judging residential support programs. And, if you don't see what you and Max feel good about, ask and push for exactly what you want.

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    1. While Dave and I will someday be doing the legwork for housing options/residential programs, rest assured that Max's wants and wishes will lead the way. I am obviously just starting this journey (if only the "pondering" phase), but these are excellent questions to keep in mind and I'm adding them to my list of options and food for thought. Thanks for your guidance and wisdom, Andrew, as always. It's invaluable.

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  9. Oh this pulls at so. many. heartstrings. My daughter is only three and these are things that torment me even now, I can't imagine what it will be like as she gets older. I don't have much to say in terms of comfort and support, but look forward to seeing how you navigate this in the future.


    Paige
    http://thehappyflammily.com

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    1. Paige, yes, but also consider all the other options that are going to exist when she is older.

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  10. Part of making sure Max gets more of what he wants will probably start with guardianship - how much, what kind will he need (if any). In Missouri it is easier to add-to then take-from. With my son who just turned 15, I need to start doing my research. Adding to that I turn 60 (yikes!) in January.

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    1. Thanks, Janet. We already went through that process, so one giant thing, down, and a bazillion more giant things to go!

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Thanks for sharing!



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