Today I met with a group of adult self-advocates to share The Art of Setting and Achieving Goals. I talked with them and answered questions for nearly two hours – all-too short a time – this subject could be explored all day! Because most of them had one-to-one staff, I addressed all of my ideas to the group as a whole, sharing the importance of creating doable process steps to creating and following through on goals. We talked about big goals and little goals, and how our successes in achieving our goals makes us feel. We laughed a lot too; I like to add humor to my shares.
Giving an example of one of my own (past) process steps to attaining goals with and for my own son, I shared how writing a mission statement – as any corporation would do – is a first bold indelible step to declaring exactly what we want when we set a goal for ourselves. I shared the following mission statement I wrote in 1991 for my son when he was 3 years old.
Taylor will live as independently as possible, fully-included in his community, with whatever supports he needs to be successful. He will be surrounded by people who love him and whom he loves.
This declarative statement was so powerful, it kept me on track for 22 years. Whenever I saw myself lowering the bar, faltering in my expectations of Taylor, or being sidetracked at IEPs and IPPs by what “they” wanted me to do, I referred to this statement for personal support, strength and clarity to keep me focused on the goal. For over two decades, I followed that mission, because I truly believed in it – even when others didn’t.
The conversation turned lively as the group and I brainstormed ideas for reaching our goals, including research; talking with others with similar goals who’ve achieved success; role playing; video modeling; drawing/painting a goal; creating a vision board; writing social stories and other ideas. We talked about process steps, discussing what they were and how to break them down into more simple steps.
AN AGREEABLE BUNCH
This was a most agreeable, if not rambunctious group of amazing adults. Even those who initially slumped in their seats had a spark of intrigue in their eyes as the group as a whole got jazzed about possibilities. Most had high ideals for their personal goals, knowing exactly what they wanted, yet a few had no idea what a good goal might be for them, or how to achieve it.
“Well, let’s talk more specifically about the goals you do have. This might help others in the group.” I prompted.
“I want to work at my job on my own – without support staff!” said Hunter, turning to his caregiver.
“I want to get a job,” said Sarah with a big smile.
“I want to be happy,” said Rachel.”
“I want more hours at the movie theater where I work…” offered Nick.
“Are you role playing with staff about how to interview ?” I asked Sarah.
“A little…” she replied.
“I have an idea you might consider, Sarah. What if you practice in the mirror to see yourself, which will help you gain confidence?” adding, “You might also try videotaping yourself, with staff asking you questions an interviewer might ask. Then you can review the footage to see what an interviewer might see?”
Sarah put her head down, shaking her head “no.” In that moment, I realized that while Sarah was delighted about the idea of getting a job, she lacked the confidence to believe in herself to help her to land one. I imagined she had little support to help her with strategies that would grow her self-confidence.
I turned the conversation toward the idea of self-empowerment and the ability to believing in ourselves enough to allow our prospective goals come to life. Though this is a high, if not conceptual ideal, the smiles on their faces told me they got it. Some of the participants actually began to sit more erect; to smile brighter; to raise their brows.
“You are powerful!” I boomed.
“What if you knew you were awesome? How might that feel for you?”
Heads bobbed up and down. The volume in the room rose high. “Great,” “wonderful,” “I’d like that,” were some of the excited utterances I heard. An older woman whom I imagined had once lived in an institution due to her age and level of disabilities, had no language and was not able to speak with me – but her crooked smile and sparkling eyes said it all. I could feel her palpable joy run through me as we nodded to one another; her seeing that someone might think her to be powerful and awesome.
I smiled at her and said “You are indeed awesome!”
Then, turning to Hunter, I probed “Have you ever asked your boss if you could work alone?”
Like Sarah, he put his head down and replied “No. I never did… I haven’t figured out what to say.”
Here is a capable man who designs T-shirts and posters for his company and so far, nobody, including himself, has given him support to ask for more responsibility let alone the support he needs to grow further. It caused me to wonder how much money his company made off of his designs… Hmmmmmmmmmm… I turned to Hunter’s staff member who was sitting next to him – the one who shadows him at work.
“Could you support Hunter… brainstorm together, write down and rehearse what he could say to his boss?” adding “We do not want to make our goals so big we can’t realistically meet them. How often do you step outside while Hunter is working?”
“Occasionally for short periods,” he replied.
“You have a great opportunity here, Hunter.” I was excited by this possibility for Hunter.
Believing that small steps lead to big accomplishments, I added “What if you asked your boss if you could work without supports for just one hour to see how it goes? Then, with a small success, you might be able to build on a bigger successes.”
Again, with shoulders hunched, Hunter looked down at the floor. “I guess so.”
More and more it was evident that the idea of believing in ourselves was missing for these individuals. Believing in ourselves is critical to the process of making and achieving goals, right? And then, just as my mind was chanting they need to find a way to believe in themselves… WHAM! Something happened that shifted the entire conversation.
MY LIFE… NOT YOURS
A man in his mid-thirties, Steve, shouted out “My goal is to get married!”
Next to him sat his girlfriend, Pam who quickly added, “I’m conserved. But I want to make decisions for myself. We want to get married and live in Santa Clarita and learn how to ride the bus out there. We want to be together.”
Her words, slow, then fast, then slow, then anxious – yet full of anticipation, made me momentarily still. I am not often caught off guard and freeze when talking in front of a group of people. I was in awe. I was blown away. I was sad – even angry. I wondered: why do we, as parents and society, not believe in possibilities enough?
Could a marriage not work out? Of course – as it is for so-called “normal” relationships. Could marriage be hard for a couple with special needs? Of course. But who are “we” to not keep the “I” in IEP, or the “S” or “self” in self-determination and self advocacy up front and center in all efforts to support individuals with disabilities?
This couple’s story made my heart sick. They have been together for two years, but have to “steal” away time just to be together. They must work with staff, transportation and other relative issues just to see each other. And this is just SO WRONG!
After further in-depth conversation about their circumstances this is what I saw for them and the group in general:
- They were born in a time when society and the “system” told their parents they would never amount to much. In believing this, their parents continue to hold on to old ideas and beliefs about what is and is not possible for their adult children.
- Holding on to old, limiting ideas, oppresses the very people we say we want to help empower. An “old school” view of I know what is best for you is outdated, lazy and – albeit with what I assume are good intentions – does not support inclusion and self determination.
- While not all decisions can be made by those with disabilities because of safety, health, cognitive or other reasons, why is it all or nothing for so many who can? Why do we not try harder to understand and elicit their wants, needs and desires – especially those who have no voice or are cognitively more challenged?
- This couple may indeed need conservatorships (I really can’t say,) but what I saw was two relatively articulate and focused adults who knew what they wanted.
- They are not sufficiently supported in the process steps to making decisions for themselves. What about a limited conservatorship aligned with demonstrations of small successes? What about being “allowed” to get married even if they are fully conserved? Would that be a bad thing?
- Steve helps to run this advocacy group! If he can do that, what else can he do?
- As a child, Pam’s parents were told she would never read or write. Today she told me “I do both very well now as an adult. I can read and write!”
- If she can do that, what else can Pam do? Why does fully conserving her necessarily mean limiting her liberties to love and make her own choices – and even mistakes?
- I see (and in this case, imagine) that their respective parents mean well and are concerned for their welfare and safety, but why do they not support and respect this couple’s right to live their own lives? This goes for others in the room with their own issues as well.
- This couple was willing (they said so) to do the work it takes to learn about marriage; what makes it successful; and how to go about creating that vision for themselves. Couldn’t staff help them with this process? Coaching, counseling, reading books, etc.?
- Because the “system” and the parents do not believe in these very capable adults, in turn they are conflicted by the dream they have to be together and their belief in themselves. It was clear that others in the room were also affected by naysayers and gate keepers – though one staff member told me in the parking lot when I was leaving that with respect to this couple, he felt they could be married and have success – which was my intuitive and observational hit without really knowing them as he does.
- As a special needs community, we ask for “acceptance,” but digging deeper, what about those in our own community not believing in possibilities? This includes parents, caregivers, teachers, me, you, etc., who go with the path of least resistance and don’t raise the bar of hopeful expectations.
- Some would rather over-protect and metaphorically strangle life, rather than let the flower bloom for fear of… (fill in the blank.)
- While not all people with disabilities can make their own decisions and do need others to make decisions for them, this group was full of those who can and should be making (many) of their own decisions – and even their own mistakes!
As I sit here passionately banging away on the keys of my laptop about this topic, my heart both sings and sighs. I have been guilty of not believing in BIG dreams for my own son. Though I had lots of dreams and goals, including independent living for him as an adult – I was fearful of daring to dream too big.
Just before Taylor turned 15, all that changed. One day out of the blue, he told me about his dream of making a movie. I was surprised to hear this. I knew he perseverated on film, but to make a film? After hearing him out, I immediately shut him down.
“You can’t do that! You have to go to film school. You are only 14. You need money to make a film.”
Bla, bla, bla, bla.
As I was saying those words to him, I glanced over and caught the discouraged look in his eyes. He believed every word I said – after all, I was his mother, his guide, his relative truth. And then, the voice in my head screamed “Yea, Keri, and they said he might never walk or talk.” I turned to Taylor, and said the following:
I BELIEVE IN YOU
“Taylor, every word I just said is a lie. You can make a film. I don’t know how to do it, but I will help you and we’ll figure it out together. What do you want to make a film about?”
We agreed upon the subject of autism – which we both knew well. A week later – as universal law allows, we met Joey Travolta who ended up mentoring Taylor in the art of filmmaking. Every step of the way, with calculation, together we wrote, researched, and worked on the process steps of each goal to making his film. His film became “our” film and through it we forged an entirely new relationship.
WHAT IS NORMAL ANYWAY?
Normal People Scare Me, a 90 minute documentary film about autism went on to win numerous awards. The film took me and Taylor all over the world to share autism with others. It helped Taylor to learn to talk with others, to answer questions and to share his inner world, among so many other positive things. He learned the nuances of traveling, of doing television and radio interviews. He stood proudly to many a standing ovation, beaming with pride.
Normal People Scare Me continues to be used today in universities, high schools and other organizations as a teaching tool. My kid followed his dream to make a film, and his dream changed both of our lives forever.
Two decades after writing that first mission statement, today at 25, Taylor lives in his own apartment with limited supports. He is a very wise and capable young man who continues to learn how to problem solve. Much of what it took for him to get to where is today was all about The Art of Believing.
A couple of weeks ago, Taylor asked that I not attend his annual IPP (Individual Program Plan) meeting.
“I can handle this myself, mom.”
Was I nervous? Yes.
Did I really want to go? Yes. After all, he is my son, and people pay me to go to their IEPs and IPPs.
Did I go? NO! I knew if things went South, we could always call another meeting.
Taylor knew what he wanted. We had worked his whole life to get him to where he is today. He was asking for his ultimate independence, and that was a promise I made long ago. Would turn my back on the goal I had set all those years ago? No, I could not – even with this all-important annual meeting.
THE MOST POWERFUL MESSAGE… IT’S YOUR LIFE
This was a moment in time when I could show my son I respected all of his hard work. I helped him (and he eagerly agreed) to write a list of his goals he could present at his meeting, and he allowed me to share my ideas and even used some of them. In his list, we covered what he wanted to accomplish; what he wanted to say, and how he might say it. We’re working on his email skills, so I emailed a draft of our list to him. And in the end, I was able to show him in the most powerful message of all: I believe in you!
The outcome? The meeting went great; amazing even! Taylor did a stellar job. He got what he wanted and needed, and he is happy with the outcome. And I am a proud momma bear:>)
AND SO I SAY TO YOU WHO LOVE SOMEONE WITH SPECIAL NEEDS…
Let our children fail, fall and learn to get up on their own – while we – those who love them most – are alive to support, love and nurture them through the challenges of real life. Grace them – as you yourself have been graced – with the ability to make mistakes, fail, succeed, grow and triumph.