Disclaimer of some sort- this is a blog post that I hope reads as if I were sitting in a coffee shop talking to you and wanting you to have comforting information.
This morning I had a phone call with a parent of a friend of a friend type situation far away from me and here is what I wanted them to know before we even got on the phone. I wish they knew what I knew so that they can stop feeling that dark cloud about what their child's future looks like and get off the merry go around of nice and well-meaning but unfortunately and ultimately incompetent professionals who are trying to direct you to helpful interventions for the more-common-than-you-think needs of your family member. You are NOT ALONE on your journey- sad to say many parents are reinventing the wheel with you as you experience your struggles of navigating finding the right supports. Did you know that almost everyone will need support at some point in their lives to get by? Hearing aids, glasses, canes, walkers, on and on. So here it goes:
I want to say this point and in writing so you can look back and read this again and again if needed- my understanding based on my 40 + years on the planet and 26 years in education and behavioral services:
When people do not fit the BOX or when they behave in ways that is viewed by the community as weird or undesirable or unacceptable or ineffective- people are blamed as though there is something inside them or wrong with them. They are a bad human or have a defect. Like a widget stamped out of the machine wrong in the factory.
Maya Angelou says something to the effect of "Someone may be a better dancer, writer, jumper, they may be prettier, or better at math. But, we are all human. No one is a better human."
In fact- this idea (that one is a defect) absolutely is wrong and can be dehumanizing and can really lead to emotional struggle by all involved. One might get a better perspective about labels with this: Labels* are NOT a natural phenomena and were made up in psychology and the medical field to give an insurance code for billing and they bring some type of comfort for those who want a word to understand these points on the continuum of neurodiversity. But at the end of the day, we are all slightly different from one another on layering and dynamic aspects and the goal really needs to be how do we arrange the environment so this precious person in their unique body has (hopefully fair not always looking the same) access to fully participate and engage with enthusiasm and at times cope with what the world throws at them that just so happens to NOT gel with their unique system. When we do this (provide the right supports at the right time) you get AMAZING and REMARKABLE outcomes such as what we know of Helen Keller, Wilma Rudolf, and Harriet Tubman. Their stories and countless others are real and happen. And these stories shouldn't have to be amazing outliers, we have the teaching technology (researched methods) to make this a normal regular occurrence. Applied Behavior Analysis and Instructional Design are two areas of study where this technology exists for us to leverage knowledge to help people in an effective and efficient manner.
Many professionals are out there who will share their opinions about how this person doesn't can't won't and will never. You may have had heard this on your journey already- and for that I am sorry. Take that type of advice with a grain of salt. Never say never- any potential you see- you are more likely to be right about than a professional who spent an infinitesimal amount time relative to you as caregiver parent or family member. At the same time, I am not suggesting any mean criticism of a professional trying to do their very best for you. But, there is no time anyone has to waste. This person has important learning and contributing to do.
When a client comes to me- I communicate 1) I am happy to see you 2) I want you here 3) Let’s start learning 4) I cannot wait to see where WE get you because the sky is the limit when your toolbox is stuffed and open to adding more 5) If I cannot help you I need to let your parents know right away so you are not on the merry go round with me- not with me- I refuse- but just because that teaching is not in my toolbox does not mean it is not in someone else's- you are too precious a being for me to waste your time. Keep doing you and there is someone out there who can help you.
And if your experience has included:
1) labeling or prompts to get a label to solve the problem or a primary solution to the problem
2) have been told doesn't cant won't will never esp. on global outcomes and future performances
3) not welcomed to learn at their level as they are now
4) repeating tasks with no progress
5) has a program with no vision of great outcomes
6) offering narrow solutions (possibly medication only) without interviewing about current lifestyle needs (sleep, eating, etc.) and environment and without suggestions for environmental supports
Then I would consider the possibility that the person you are advocating for is NOT in an appropriate learning environment. Therefore, I would highly consider finding a learning environment that has a philosophy that the right environment makes a big if not all the difference for any individual! Just because each one of us has a different point on the continuum of neurodiversity whether you label it or not, does not mean we have a point on the line where we can say NOPE, ding ding ding, you cannot learn, you are that bad of an egg. All people can learn.
Finding such a professional or agency might be hard depending on where you live. But finding a competent BCBA, can be a great first step to building a team of supports to making a major positive impact on someone learning to navigate life in their community. Be relentless in your search- insist on competence- when you find it- you know it- you will feel joy and relief. This person in need of help needs you to be a creative problem solver. Lastly, they need all of their adults to hold strong and be a team and seek their own supports through tough challenges. Communication is key- about your grieving, your frustrations, your ideas, your plans, the plan. It is a lot but easier with partners. Support groups have research suggesting it improves health.
Watch the whole documentary on stress by National Geographic or just from min 39-45 about research on support groups.
Enjoy any positive no matter how small (nothing is trivial- small leads to big), aim high, envision great and beautiful opportunities and best of luck.
Maybe this speaks to you:
*This is not suggesting labels are useless or not helpful or not real. They need to be used correctly- starting with an accurate diagnosis which is obviously difficult to give and get. A diagnosis or label is a way to get a person needing help services by having a team outline strengths exhaustively, needs precisely and align those to an individually designed plan that includes arranging supports and removing barriers as appropriate. All of those components need to be based on analyzing the environment through strategic review of history, interview of those people of importance, assessment of skills, and observations that capture trends and typical performances. Conversely, the label itself can never tell people what that person needs.