Skills For Life Blog
Our clients, families, and clinicians have a lot to say and we value everyone’s voice. This is a place to read about the stories, challenges and successes of our greater Skills for Life community members.
Hang In There, I Believe In You.
By: SFL Client
Hello there, forewords are awkward, so let’s get this show on the road. What you are about to read is an excerpt from an email I wrote to a provider. I am 27 and went undiagnosed my entire life until five years ago.
Growing up knowing you don’t function ‘just quite right,’ you’re not like everyone else—it feels humiliating and shameful. You try and match the code, you try and learn all the rules, but you fail and fail again until you break. (This is a general you, as this was my experience but hey maybe it’s yours too.)
Then you get the questions that I hated with a burning, fiery passion. “What do you want to work on?” followed closely by, “What do you want to tackle?” or the dreaded and embarrassing, “What do you struggle with?”
I don’t know about you, but I seriously didn’t know. That’s why I’d been brought to these providers after all right? I’d ask myself, “If I didn’t know, and YOU don’t know—well then who is ‘flying the plane’!?”
But that’s not the point, that’s not what they’re really asking. Bonkers right? After five years of multiple providers, therapy, and learning different methods, I have been able to begin learning what my needs are. What I need to find out, what my ‘happy’ looks like, what my ‘function’ looks like. It won’t match modern media or everyone else, and you know what? Good! Most neurotypicals can’t even keep up with that!
So, if you’re struggling to answer your providers’ questions, and if something below resonates with you, take it with my blessing. Finding the words to explain some of these concepts is more daunting than walking a sheer cliff, horizontally. I’ve done some of the legwork so let me toss down a ‘rope’; you deserve quality of life, we all do.
Hang in there, I believe in you.
Self-care goals. I struggle mainly with hygiene and food. Food is difficult for me to comprehend or understand when I’m hungry before I’m starving. Then I can’t find quick food or anything more filling than junk food or snacks that just leave me wandering back down to the kitchen later. I also have food issues – tactile, taste, and sensitivities. You can’t energize and get things done hungry, and I can’t figure out feeding myself.
Hygiene. This is another routine I struggle to maintain for a variety of reasons. I’m cold easily and the thermal regulation bathing requires discourages me, especially in the cold months. Once I’m in the shower, I’m fine–but it’s the GET IN THE SHOWER in a regular fashion – that I’m troubled by. This process exhausts me. Showering every day, or every other day, is too much but I conversely, the moment I feel greasy, it’s discouraging, and then I don’t want to shower even more so. I do not have room for a shower chair and have to share my bathroom with my parents.
Grooming – brushing teeth, hair, deodorant, shaving, face washing. The maintenance that is required on a daily basis is something I either forget to do, or don’t see the point in doing. For example, washing my face is too involved, messy, and exhausting.
Daily productivity and “housekeeping” tasks – managing and maintaining my room, my mail, paperwork, phone calls and all the little tasks in between. I wish these things interested me enough to hold my attention to allow me to complete at least one thing per day. Just one thing. Cleaning, sorting, doing a load of laundry – I have trouble getting these things done on a regular schedule. Therefore, the delay makes them massive, unsurpassable tasks. Then when I try to overcome them, I have the added consideration of working around my parents’ schedules or use of machines, etc. I do not have the energy.
I would like to figure out a way to hold myself accountable and pace completion of tasks in a maintainable and sustainable fashion.
As it is now, I have no daily structure. There is no mealtime, no ‘get ready’ time – I’m not going anywhere, and I don’t want to.
Currently, there is no real place for me to move about my house or to ‘change up my work zone’ and get the things done that I want to.
Most of my goals and tasks are on my computer and there’s no place for my desktop other than my bedroom. I wake up, I sometimes attempt to eat something and then I wander back upstairs. I turn the computer on and 16+ hours fly by.
I have tried structuring my week, my days, my months–if it is too rigid, my brain immediately flips to “WELL I’M ONE MINUTE OFF, ERGO WHAT’S THE POINT.” I would like to figure out ‘zones’ or a ‘step by step’ walkthrough of the day.
Discovering my ‘Recharge.’ Speaking of — I’m exhausted just typing this up after that flurry of inspiration earlier today–and what’s more important is I exhaust easily. I spend my ‘spoons’ or ‘battery’ far faster than I recharge. I have little to no capacity left for multiple things and I won’t let this be something I can’t ‘help’. I had no identity, hobbies, or self-freedom growing up. I don’t know what I like, what I’m good, at what makes me happy. But I’m tired of being tired.
Necessity is the Mother of Invention.
By: SFL Parent
My daughter hates to drive. And yet, she drives to work three days a week. Getting there was not easy, and it took years, but “real life” was what finally made it happen.
As my daughter approached her mid-teen years, we were not sure whether she would ever be able to drive. Would her anxiety and processing style get in the way? Emma sometimes “freezes” when she is unsure of the next step. Might that be a danger to Emma and to others? When Emma was 17, she got her learner’s permit. She tells me that her motivation at that time was that “everyone in my grade was getting one.” We practiced driving in some parking lots and then we ventured onto some quiet side streets. I chose the locations carefully, taking into consideration how busy the streets would be at certain times of the day. We decided to have her take driving lessons with Adaptive Driving in Dedham, because they specialize in teaching people with disabilities. It turned out that technically, she’s a pretty darned-good driver!
Over the next year or so, I made it my mission to have Emma drive anywhere we went that I knew would be feasible and safe for her. I thought about things like left-hand turns and her anxiety level. I thought about how easy it would be to park at our destination. I made sure I told her the exact route ahead of time. I assured her that I wouldn’t choose a route that I knew she couldn’t manage. She was often not happy when I handed her the keys. I had to push her, but not overwhelm her. I wanted to prepare her for her driving test but more importantly, help her become more comfortable independently accessing her community. I wanted her to be able to drive to a grocery store, the library and hopefully, a future job. We both put a lot of time and work into mastering local driving. Now, Emma’s motivation was getting her license. Looking back at that time, she tells me that she wanted to be able to tell her friends (and FaceBook) that she had achieved this goal. She’s not a person who generally follows the crowd, but this happened to be a strong motivator for her, which worked in our favor.
I made sure to schedule her driving test mid-day during the summer, when traffic would be lightest. We practiced driving in the area where the test would take place. On the day of the test, Emma was extremely anxious. She was so anxious that she backed over a traffic cone at the onset of the test. This alone would probably have flustered many a new driver, but Emma powered on and got her license that day. She possesses an admirable ability to stay on track when the stakes are high, despite her sometimes-debilitating anxiety.
Emma was now a licensed driver, but I started to realize that her motivation to actually drive wasn’t as high as her motivation to be able to say she had her license. She lost interest in practicing. It also became apparent that she was highly resistant to driving solo, without me in the car. She was so resistant, that even when we went to a nearby and familiar parking lot, she would not drive 20 feet with me standing outside the car. It seemed that her progress was going to stop here, after all the effort that she had put into getting to this point. And so, for the most part, driving was no longer important to Emma.
During this time, Emma was moving from her public high school to a new transition program at the Ivy Street School in Brookline, which became our main focus for the next several years. While there, Emma worked with Jane, who became one of the most important people in Emma’s life. We were thrilled to hear that Emma could continue her work with Jane through Skills for Life after she left Ivy Street.
Fast forward to 2016, when Emma had now completed her time at the Ivy Street School and, with help from Jane, found a job. Because her job was in another town, Emma was either getting rides to work with her job coach or her parents. We had practiced the route a few times, but always with me in the car. I had finally convinced Emma to drive around our block solo, but she had only done this a few times and interestingly, only late at night, which I believe is connected to how self-conscience my daughter is.
One day, after Emma had been at her job for quite a few months, she approached me with her cell phone in her hand, looking like a deer in the headlights. Her boss needed her to come in right away, as someone was going home sick. Due to my job at home, it was impossible for me to leave at that time. Instead of offering up suggestions, I silently shrugged my shoulders, which as a “mom who wants to solve everything,” was not easy!
Emma went upstairs, got into her work clothes, came downstairs, got into the car and left – with no fanfare. She just did it. My daughter drove to the next town, all by herself. Both because she likes her job, and because she was needed. After she left, I didn’t know whether to panic or do a ‘happy dance’ – so, I did a little of both. But it was all okay. When I think of how my daughter has reached some of her achievements, I think of the phrase “necessity is the mother of invention.”
Emma still drives to work every morning even though she doesn’t like it. It often makes her nervous and she will probably never drive on a highway, but that’s okay. Her motivation is her job and to a lesser degree, fitting in with her co-workers. And every time I see her leaving our driveway, I am filled with pride. She is a remarkable young woman.
Transitions are defining moments in a person’s life that shape who they become and the direction that their life takes. Change, whether planned or unplanned, can be difficult to adapt to as routines are often disrupted, which can lead to feelings of discomfort and anxiety. For many of us, the last several months during the global pandemic have been just that; a time that, due to unexpected and unforeseen circumstances, we’ve been challenged to drastically change how we live and work in society and how we interact with others. Whether or not we were prepared for it, we were all thrown a major life curveball that forced us to slow down and adjust to a new normal. What we are experiencing now is so deeply human and is shared amongst all of us. Collectively, we are going through an unprecedented transition: a period of change, uncertainty, and vulnerability. Similarly, for every adolescent, their transition to adulthood is also unprecedented in their own life and can be challenging to navigate. Every person’s transition is unique, as their background, skill set, and supports all play a pivotal role in their experience.
Transitions, whether they are a single, life-changing event or a gradual development, contribute greatly to a young adult’s lived experience and help them develop lifelong tools for self-management, emotional control, and coping. For me, my transition to adulthood came unexpectedly when Hurricane Katrina hit my hometown of New Orleans in August 2005. Coincidentally, a few days prior to Katrina’s arrival I left New Orleans to participate in a high school semester abroad program, which spared me from witnessing the destruction that ravaged my once lively, colorful and eccentric city. Being across the globe during the aftermath of Katrina left me torn between two realities: one of new experiences and learning in my abroad program to one of fear and anxiety for my family and friends struggling back home. My family was considered one of lucky ones, dealing only with material losses and the floodwaters only reaching several feet into our home. My community was devastated, friends were scattered around the country and it was unclear if the city would survive this catastrophic event. Although my family was able to rebuild our home over the next year, the impact of Katrina remained in our lives, as it became the catalyst for our departure from the city within a short span of time. First my grandparents relocated, not able to withstand another hurricane, then my sister left for college, and finally my parents decided to leave as well to coincide with my departure for college the following year. In a sense, we were all permanently evacuating, knowing that another hurricane would follow in Katrina’s wake. My experience during Hurricane Katrina became my unique transition to adulthood; an opportunity to overcome a difficult situation, face a new reality, and grow as an individual.
I left New Orleans with a strong sense of purpose to begin studying in Boston to become an occupational therapist, a profession deeply rooted in themes of adaptation, creativity, change, and independence. I had discovered occupational therapy a few years before, while volunteering at a camp for children with special needs. During this experience, I saw firsthand how adaptation, imagination and community can help someone participate in activities that were otherwise not accessible to them. I saw firsthand how OT can play a role in impacting a person’s life for the better and helping them achieve goals that did not seem possible. I returned to be a counselor at the camp for several summers, my passion for OT evolving as I continued to learn new ways that OT could help a person live their life to the fullest. Throughout college, graduate school and my ongoing professional journey, I’ve had the opportunity to work with many wonderful mentors in diverse settings that ultimately led me to my current role at Ivy Street and Skills for Life. Working closely with young adults in preparation for their transition has reminded me to look back at my own and to remember that change during adolescence, whether planned or unplanned, can be hard. Especially now, amid a global pandemic, it may seem impossible to plan for a successful transition, with so much uncertainty and fear surrounding the future. As I remember challenging moments in my own transition, I teach my students to focus on the aspects that they are able to control, utilize strategies to adapt, and continue to participate and pursue their chosen meaningful activities. Supporting young adults through their transition and finding their own path to success has reinvigorated the sense of purpose that initially brought me to Boston to become an OT many years ago. Working in the field of transition as an OT became a link to my past, to my childhood experiences in New Orleans and all the people and events that contributed to me getting to this point.
There are a few things I’ve learned both from my own transitions and through my role as an OT working with young adults at Ivy Street and Skills for Life that are important to share:
- Transitions, whether they are planned or unplanned, can be daunting. We are asked to step outside of our comfort zone into uncharted territory. Remember that it’s OK to ask for help and recognize that there will be many ups and downs throughout the process.
- The human spirit is capable of handling change and adapting to it. You are stronger than you think. Change can be overwhelming and disappointment along the way can make it difficult to see the light at the end of the tunnel. The mantra, “this too shall pass”, shows us that even the most challenging moments don’t last forever.
- When things that we cannot control force us to make changes to our plan, we can learn to adapt, adjust our expectations and utilize coping skills to create a new plan. Use your resources to find creative solutions to help you keep forging ahead.
- Always keep in mind the personal and/or professional goals you are working towards. When life throws you a curveball, it can be easy to forget about your goals and enter “survival mode”. Once the initial shock passes, take some time to refocus and identify new ways to make progress towards your goals.
- Live life to the fullest! We are only given one opportunity to live a life to enjoy and be proud of. Amid important transitions, unexpected catastrophe, global pandemics, and everything in between, remember to participate in activities that bring you joy and meaning.