Leo in Bloom Magazine

Editors’ Note: This issue, our good friend Aulton Grubbs joined our Leos Roar! Discussion. He might not be a Leo, but we welcome his Capricorn roar on the topic of transitions.

Nick: Hi! Let’s begin roaring!! Aulton, we welcome the magnitude of your voice to our Leo’s den.

In our “Janus” issue, we’re exploring the theme of looking back and looking forward. I thought we might roar about transitions–what the in-betweens of going from one thing to another are like for us.

I’m going through a huge transition right now, moving from the house I’ve lived in for nearly 23 years to a smaller condo. Not only is this a change of surroundings, it’s also a matter of letting go of a dream. My stepmom, Gwen, bought our present house (a three-story duplex) so that I could have a separate apartment. Eventually, I hoped to have roommates and take over the house, creating the autistic version of Friends (I told people I was going to be Chandler), and Gwen would move nearby. I have had a great experience making one floor of the house my own, creating a place for me to operate independently during the periods when I’ve had staff. I’ve enjoyed decorating and feeling in charge of my life so much more fully. 

However, during the pandemic my staff contact eventually became a matter of virtual visits, and Gwen and I found ourselves living on one floor of our house. The upkeep of the building and yard was becoming overwhelming for her before this, but I’d resisted her suggestions about moving. Living together in a smaller home became more feasible during COVID, so in 2022 we began looking at condos with a wonderful realtor, we bought one last May, and after delays we now, finally have a contractor doing accessibility renovations. We’ll hopefully move in at the end of March. 

We approached every step of this as a team, with me leading and Gwen posting charts and drawings on our walls at every step of the process: lists of condos within a certain radius (which I drove by with staff and wrote comments about), my pros and cons of various neighborhoods–then of available condos from listings, the groundplan of the unit we bought and colored paper rectangles representing our furniture for me to arrange. Online I’ve searched and chosen rugs, sinks, flooring, and light fixtures. I’ve gone to tile stores and repeatedly to IKEA for storage units, met with contractors until one worked out, and picked out cabinets. Gwen bought me a foldable Clax cart so I could help move boxes with her and my staff (she sings “Claxman” to the Beatles tune), and I’m lead man in our interior design. I still feel stressed, which causes off-kilter self-regulation days or the need to take a break from planning, but I also feel empowered because nothing has been done without me and my input has directed our results.

My dream has changed to hopes of probably a single roommate in the future. I’ve been making friends with the emerging S2C community where I live, which didn’t exist 23 years ago and began forming only a few years before the pandemic. We exceed Friends in numbers, and someday some of us may pair or team up as roommates.

Although I wish our condo renovations hadn’t taken so long, I must say that the slowed down pace has allowed me to ease into such a major life event more easily. More importantly, I’ve been fortunate that I can depend on Gwen to help me figure out ways to transition and take step-by-step action that is negotiated between us and spelled out clearly.

What has helped you navigate transitions big and small?

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Aulton: I have let my mind deeply take in this idea of transition many times.  In my 18 years, I have had to make many transitions in my schooling.  Some of these transitions seemed to travel along a smooth path and others turned out to be greatly traumatic.  When viewing all these changes I continually come to the one move which had the most profound impact on my life but also offered so many challenges.  This was my move from a traditional public school to home school, so that I could tackle the challenges and triumphs of spelling to communicate.

When I was in fifth-grade a dear friend offered my mom a glimpse into a real future, for me, by way of spelling.  A dream in which my brilliant mind would be heard and respected.  My mom was so overcome with my beautiful brain that she knew the only path forward was spelling! At the beginning of this journey, we began slow but steady.  We worked, in tandem, to jump any hurdles put in my path.  My mom, determined as always, not only taught me lessons seven days a week at home, but also came to my school to teach me lessons so that I could train my skills for spelling.  The limits of me being at a school where I was only offered a true voice if my mom was present were becoming apparent. Some difficult decisions had to be confronted.  My mind and voice were imprisoned for most of the day and it was agony.  My mom knew this – we had to find a different path.

The first call my mom made was to one of my past school aides, Courtney, who has always believed in my stellar intellect and in my journey to spell.  Once she was on board, we needed to gather our tools for this new adventure.  I needed a curriculum and lessons that were conducive with the teach/ask method.  All of these choices seemed endless, and dream-like to me. For my mom, this meant an extreme amount of time and work.  For every subject that I wanted to dive headfirst into, my mom had to painstakingly read the vast pages of material and write multiple lessons for each day and for the entire week.  I will never be able to repay her for being willing to give power to my voice.

Now it was time to take full advantage of this opportunity to learn.  The steps to begin to spell were slow and arduous.  My body did not just have to wrangle control of my apraxic body, but I had to also overcome a weak body slowed by myotonic dystrophy.  These days were full of so many snags and stumbling blocks I was often disheartened, at times, believing this dream would only become a nightmare of what could have been.  My mom and Courtney constantly encouraged me, but I could feel it in their spirits they too witnessed these setbacks with fear.  At night, my mind would find dark places to curl up and cry.  All I wanted to do was communicate and I felt that this exploration might have been too much.

There had to be a light and I was willing to find it.  One of the most difficult decisions I had to make was to fight through the tiring pain spelling sometimes brought to my body.  I knew I would have to endure it so that my innermost thoughts would build strength alongside my muscles.  Once I took full control of my thoughts and pushed away the voice of doubt, I lifted my eyes to the finish line and plunged forward in full pursuit of my goals.  I saw my words fatten and expand as they were written out.  These were my words and mine alone.  They began to grow the more I nurtured them and fed them, my confidence grew.

The path I took to handle this big transition is useful for any change, big or small.  The first thing you need to do is make a confident choice to be determined to find your way into a better situation.  You may have to envision it.  If the transition is particularly challenging and feels withering to your soul, allow time to grieve.  Finally, there may be hurdles within in the transition.  Try to jump or go around them, because no transition is worth it if it comes without any sweat.  The transitions we all face might be easier when we have support moving through them.  I wish you all a happy changing of seasons, whatever that means in your life

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Danny: Thank you for sharing, Nick and Aulton. This is a huge question!

For me, a current transition is toward more financial autonomy. My family struggled for many years with money, and of course as a disabled person, I also face obstacles to being financially comfortable. I think society doesn’t realize how limited the options are for disabled folks to earn money while retaining access to needed services.

Also, I have pretty much no formal education. And my work must be done with a communication support person, so it is two people’s labor that needs to be compensated. So it is not simple to envision being financially secure.

This year, I am determined to do my best to earn what I can and save some money. I am so grateful for the services in California for disabled folks, but I want to build up as much as I can in case I want or need to move out of state or country one day. We are so tethered to where our benefits are.

So I am working to shift my mindset from one of feeling stuck to being empowered to seek gainful work. I am working to announce my goals even if they seem ambitious, and trusting my new community to help me form a professional network. I am trusting that I can do this.

Having a responsive support team has been helpful in this shift. I am also doing research on how to be financially savvy. I am setting up structures in my life to help organize this journey. And I am shedding old mindsets about my limitations and about money being mystifying and confusing. Having a strong sense of my long-term goals and also having a dedicated support team helps me navigate this.

It is one of many recent transitions in my recent life. How do you choose which transitions to embark upon in a world of many possibilities? 

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Aulton: When I sit and consider all the different transitional possibilities I could embark on in my life, my mind is filled with overwhelming swirls of self-doubt. I know I need to calm my head with gentle words of affirmation and start again.  I take the time to communicate with my heart and search for the transition that will offer me the greatest spiritual lift.  Sometimes this transition seems large and others small, but they all have been significant in my physical and mental wellbeing.  Take the time to talk to your heart, it will let you know how much you can handle.

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Nick: You two have mentioned many hurdles that we face! Aulton is so right that we have to be true to our hearts: making decisions about the transitions we need to clear hurdles by considering what nourishes our souls, benefits our well-being, and is something we can handle personally, as well as with the resources we have which, Danny points out, are too often limited. The scope of our lives is intensely constrained by the amount and level of communication support we receive. It’s costly to train staff or natural supports (family, friends) to learn Spelling to Communicate (S2C) and become communication/regulation partners (CRPs). Plus, not every communication relationship is fluent or comfortable enough to support an intensely creative working relationship. 

Education is a particularly high hurdle. It’s impressive to be an autodidact, but there is more to be learned than we possibly can teach ourselves. Aulton, you and your mom have put an amazing amount of effort into your educational transition! Danny, in spite of its frustrations, you display the hard-earned gains of being largely self-taught. As an older speller who began communicating with facilitated communication (FC) in 1991, I was fortunate that FC was accepted (at the time) in the schools I went to, and eventually I was able to earn a community-college associates degree, thanks to the CRP support of many educational assistants and my stepmom. Now I am challenging the coordination of my eyes, brain, and hands by transitioning to independent typing with S2C.

Danny, you bring up the glaring problem we have as adults not only of transitioning to a life of interesting and gainful employment for ourselves, but also of how to employ those who support us in doing this work. Many of us have bodies (or mind/body disconnects) that have little chance of becoming financially gainful, and our talents as writers . . . well, even neurotypical writers have a hard time making a living at it! Saving money is a little easier now that there are ABLE accounts, but how useful is this if we can’t earn money and/or have to pay

for the training and/or staffing hours of our CRPs?

Eventually, we also must face the transition to independent living and to pioneering models of what this can look like when it involves people who need communication support 24/7. At some times, perhaps this could be basic and need-based. However, for significant periods of the day, one-on-one CRPs are essential so we CAN work, as well as be able to socialize and pursue hobbies and interests. Education, employment, financial security, living independently–well, the transition to all of this is beyond us to figure out as individuals and our families. We need society and the nature of disability services to transition with us!!

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Aulton: I agree that disabilities services need to transition with us.  CRPs are an essential tool for all of us to communicate.  By not allowing us easy and affordable access to this resource we are pushed back into silence.  And I know I speak for many non-speaking autistic individuals, this is hell! Having the ability to communicate with others is our right in life, liberty, and the pursuit of happiness.  Without this crucial CRP we have no way of obtaining any of the goals listed.  To succeed in education, employment, financial security, and living independently we need communication. To convey our thoughts and ideas we must be able to spell and to spell most of us need the skilled assistance of our amazing CRPs. This conversation could be a wonderful springboard into a mass campaign for spellers to be provided CRPs through the state and paid through the state.  It is time to spread the idea with the voices now provided to us.  With our gifted talent in language may we let our voices be heard from every corner of this magnificent spelling world.

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Danny: Wow, I love the scope of this thread! It is a good reminder that many transitions are needed before nonspeakers have the support they need on a broad scale. These can be daunting when seen head-on, enough to inspire despair. But I also find courage from looking back and seeing all I have survived. It is like a momentum that I get from looking to the past, like a spring being pulled back and ready to leap forward.

This has been great! I am okay to wrap it up here unless you have more to add. Thank you both!