So we are smack dab in the middle of winter, and we are helping my autistic adult brother move into, what we are hoping, will be his forever home.
Please understand that I have considered his safety and that I have his best interests at heart. I am sharing our story because I know there is a lack of information on how to navigate struggles families come up against as they try to gain as much independence as possible for their autistic loved-ones.
I am in no way saying that anything in my post is more right then the ways other families choose to navigate these issues. Nor am I saying that any of the things my brother struggles with are typical for others with autism.
Yes I am fearful about letting him live somewhere independently. Mom and I struggled for years with thoughts that he wasn’t capable to safely live on his own. In the end it’s something he really desires and he has stated that he won’t feel like he has accomplished his goals if he doesn’t achieve that level of independence.
***Most of the images in this post are links to Amazon products. Since everyone is a unique individual these books may or may not be appropriate for your particular situation. I encourage you to read descriptions as it will help you to determine whether or not it may be helpful for your family’s journey.***
Before you rake me over the coals for being a neglectful guardian or an over-stepping overlord consider this. If my brother was without family, the state of Pennsylvania would have said he was a legal adult and that he was good to go.
They would have given him a case manager for his paperwork, if he was lucky to come across someone to help him start that process.
Then they would have told him, possibly helped him, to find a place to live whether it was safe or not.
He would have been left mostly to his own ability to figure out how to be an adult and comply with the system. The case workers that are there to help often don’t have enough resources to keep up with the amount of people they have to serve.
If he struggled and became homeless he may have been picked up back up by the system and provided extra help, or he may have become one of the many lost souls that fail at complying with the system designed to help care for them.
My brother is an individual with his own specific strengths and things to work on. I am just sharing the ways in which we are overcoming our own personal struggles and trying to achieve the life he desires.
While I am dealing with many complex emotions of my own, moving into a community has been a dream of his and I am trying to help him reach his goals so he feels like an accomplished and successful adult. Which if that works, good for him because I often still don’t feel like an accomplished successful adult.
I am trying not to stress about everything and to just solve one issue at a time, but I still freak out here and there.
First I was stressed about all the paperwork and concerned that I would mess it up somehow and lose his spot on the waiting list. He has been on some kind of housing waiting list for over 10 years now and if I missed this chance there was no telling how long we would wait for his name to come up again.
Searching for Housing: A History
Some of the houses we had looked at didn’t meet mom and I’s standards and he felt like we were holding him back. We had a lot of discussions about safety and finding a happy place to make a good home. Because he trusted us he chose to wait so patiently for better places to open up.
He had been passed up for a different group home in the past which was such a shame because it had seemed pretty perfect for him.
They had assumed he was too independent without talking to any of his medical professionals. That was a devastating experience for all of us because we had been so hopeful.
So 8 years into our search for a good place I was told about an assisted living campus for the elderly and disabled in the next town over. Thanks Autumn!
I had lived in this town several years of my life and it’s a very nice community that I am familiar with. So we signed him up on that waiting list for when an apartment became available.
We were trying to be optimistic but were struggling because we had already waited so long, and felt he had been denied unfairly from the other assisted living place we had applied for.
While he was waiting for us to find a him a nice community to live in we decided to find him a “practice place”. He’d been on a waiting list for 8 years last time and we didn’t want to put his life “on hold” for that long again.
We found him an apartment a few doors down the street from us. It was super convenient and we saw him almost every day.
The element that was missing was the community where he could make friends and see them often. Hip-hip hooray! Only 10 short years after we 1st started looking for a home for him we finally signed his lease! He is super excited to move into his new home where he can hopefully make some good friends, and I am still apprehensive…
His last apartment had been almost right next door and with a limited amount of people. We had him close and could see him often to make sure he was doing well.
He really does desire to move into a place where he can feel independent and create the life he wants. We had wanted him to find a community and friends he could see often but, not gonna lie, that is really scary with covid ripping through our area at the moment.
We have discussed getting the vaccine for him and he is on a waiting list but neither of us feel super confident about it at this point.
I’ve read a lot and watched some videos about how it works and that has made me feel better but we are still unsure.
The more local people I see doing well after receiving the vaccine the better I feel. I told him we would chat a bit more when they called to tell me it was available. We can see how we feel with the newest information and make the decision then.
Using Tech to Stay Close
Though I have been truly terrified to move him to his own apartment during these times, we have come up with a few ways to use technology to calm some of our panicked moments.
First we are getting an Alexa Echo Show so that when I am unable to make the 12 minute drive to his new place, we can video call and see each other face to face regularly.
The Alexa Show was recommended to me by Justine, a twitter friend, after I asked for video calling tech without full access to the internet. He knows he has an electronics problem that we have worked hard to manage. Part of his diagnosis is compulsive and addictive behaviors when it comes to TV and internet.
Encouraging Health & Managing Compulsive Behaviors
We wanted something that had internet but would block dangerous sites, limit time spent, and encourage more regular sleep times. Since the Alexa has parental safety options we can set it up to encourage learning and fun with less risk of internet usage totally taking over his life.
If he still wants internet during “blocked times” he can go to the campus computer lab or to the library. I am just happy it would encourage him to leave his apartment and get some fresh air.
Yes I realize going to public spaces carries risk at this moment too and we will weigh what is best depending on what’s going on. We are able to adjust his internet settings remotely and give him more access if requested.
Encouraging Consistency & Hygiene
Why do I encourage him to keep a regular schedule? Well he needs to hold a job or he loses his medical insurance. He has Crohn’s disease and needs an IV infusion every 6 weeks that costs over a grand without insurance.
While he wants to be “his own man” (his words) he does realize he needs help to manage his needs. He is an adult by Pennsylvania law but he still needs guidance to keep his life running smoothly, to pay his bills, and to encourage healthy habits.
Mom and I walked the fine line of helping him find as much independence as he was able to manage, while still keeping his health and wellness intact.
Now he is moving on to his 2nd apartment and a new, more independent, phase. I am unfortunately navigating this without mom. I’m try to keep in mind what mom and dad would have wanted and I seek out ways to make him happy and keep him healthy.
We plan to add a relaxed schedule and chore list to the Alexa, which he may or may not follow depending on the day, but it will help remind him about daily hygiene and things like washing his sheets.
These digital reminders are helpful. He doesn’t enjoy hearing someone tell him he should do tasks (who does?) but he does respond well to schedules, especially when served through an electronic medium.
Tech for Food Safety, Current Events, Health Checks, & Entertainment
The Alexa will also be good for looking up recipes and any for any food questions he might have. He loves to cook but has some trouble with cooking food safely at times.
Alexa and other resources can help him to determine how long food is good for and to find meat temperature safety charts. We also have a meat safety temperature chart printed for him to hang in his apartment. He can also ask Alexa about the weather, listen to music, and see song lyrics which he enjoys.
Video calling will allow us to chat about food and I can also see his face and see how he is doing.
Autism manifests in so many different ways. He has limited body awareness, a high-pain tolerance due to some nerve damage, and might not notice he is ill unless he has very obvious symptoms.
I want to be able to see him just in case he becomes ill and did not recognize the symptoms himself. My plan is to keep a close eye during corona and if he becomes ill I can bring him back home for a week or 2 to make sure he recovers well.
Tech for Helping Him Get Around & Get Home
The other tech we are going to rely on is is GPS tracking that is often used by parents for keeping an eye on their kids. Yes I know this feels a little creepy and like an invasion of privacy but he will have the security of knowing we can find him quickly in an emergency.
We may not need this tech forever but while he is finding his way around this new town we can help get him back to a familiar area if he gets lost.
I can’t tell you how much I’d be freaking out if he called me telling me he didn’t know where he was and asking me for help I couldn’t give without knowing his location.
I also am printing him a map of the town so that he can get familiar and find his was to different places in the early days.
The GPS locator is still a good idea in case he gets “turned around”. So we solved 2 of my biggest fears and he just seems genuinely happy about moving to the next phase of his life.
What Comes Next?
He has moved to a different county so we transferred some of his case files over. He lost his job through our last county’s job program in March due to closures from covid and decreases in funding for that program. I am hoping we will be able to find a job program that he loves in this new county.
We also need to figure out bus schedules, transfer his medical records to a closer doctor, and buy him some furniture that will fit in his new apartment.
I’ll be getting rid of his old apartment’s furniture that won’t work in the new place and helping him set-up his new apartment. We will be sorting through clothes that don’t fit anymore so he can fit most of it in his closet, and I need to get shelves to house his DVD and book collections.
I am also looking into hiring someone to come clean on a monthly or bi-monthly basis because he isn’t the best “deep cleaner”. If we don’t end up being able to afford that I’ll come over to help clean periodically.
I am looking forward to a time where I am not filling out a million papers but that probably won’t be for at least 6 months or so. I certainly appreciate the effort my mom put in all those years.
It’s not an easy system to navigate but she always did an amazing job. I miss laughing with her about all the red tape and hoops we jumped through together. We went through difficult application processes for years just to be told that he was too high-functioning to get any help.
While he is an intelligent person his life skills aren’t what society expects. He had a government program “job coach” one time who said she would never work with him again.
This was absolutely the wrong way to handle her disappointment, but she was frustrated that she taught him all the things and then he didn’t manage to complete things as expected.
This is a theme that mom and I came up against over and over again, and I will miss being able to commiserate with her at the irony of jumping through hoops to get him into programs that promise to help and later give up on him.
I am not looking forward to having to sign him up for different job programs for them to tell me nothing is suitable.
Social programs require him to have a job, and jobs require him to follow societal rules or get fired. Guess what? He isn’t good at understanding or following societal rules, and without help he struggles to comply with the system provided to help him.
There are a million books dedicated to understanding autistic children but very few of them help to navigate daily living for an adult with autism and how to meet the requirements of the system designed to care for them.
I will continue to be his advocate and big sister, help him to reach the goals he sets for himself, and to create the life he wants and one that he will truly enjoy.
We will keep looking for work that we think suits his skills. I wish he could get hired to do voices for cartoons. I think he would both love it and truly excel in this field!
We are also working on creating children’s books together but I still have to work a day job, be a parent to my 3, assist with his needs, and countless other life things.
I doubt I can accomplish book writing and illustration any time soon. So we will keep on trying with the local jobs until we can get our book business going.
I know I should feel incredibly excited for the strides we have made for him recently but I am struggling with the complexity of my feelings.
Not having my mom to discuss pros and cons of different decisions makes me both sad and nervous. I am very happy that he is ecstatic about moving into his “forever home” and I am not letting my internal freak-out ruin his moment.
Now that I have some of my biggest fears addressed, we have a plan, and my anxiety is some-what controlled I am going to try to be more optimistic about the job thing (and try not to be a spaz about all the things that aren’t settled yet).
I keep telling myself he is happy and excited and everything will work out like it’s supposed to, amen.
While autism and life goals are different for everyone I hope that reading about our experience will help others consider ways to help their loved-ones achieve their goals as safely and as supported as possible.
My brother likes reading a lot and in the past when he was struggling to understand why we shared certain advice we always went to books to help him get the answers he was having trouble “hearing” from us. It can be a complex relationship but we have always supported each other and found joy in learning from one another.
If you have any resources or advice on working toward more independence please share. If it is a resource for him and it is in book form you get extra brownie points!
Thanks for reading with me today! I hope that some of the information in this post helps others discover new ideas to help grow and live a great life.