The Critter & The Creator

critter & creator

Ever since we moved to California, I’ve been seeking some sort of community for my son Adam, who, as many of you know, has Down syndrome. I haven’t had much luck.

Most of our neighbors are wild animals, and there’s no well-developed special-needs program among the bobcats and the bears I’ve met so far. Even nearby towns don’t have many activities for people with special needs.

It finally occurred to me that I wasn’t walking my talk in this area. I’ve been feeling like a defeated little critter, unable to access an existing program or structure that would meet my family’s needs. Instead, I need to start thinking like a Creator, and simply make what I want.

Each of us is both a small, vulnerable critter and a vast, powerful Creator. When we stop feeling victimized or abandoned and resolve to design and build stuff, we align our identity with our Creator-selves. Instead of persecuted critters, we become heroes on a quest. A difficult quest, to be sure, but that’s how it’s supposed to be.

I have no idea how to convene a community for Adam. I’m just beginning to imagine what it will look like. But that turns my brain into a guided missile. The more I accept the role of Creator, the more I’ll notice all sorts of people and ideas that might help me. Then my job is to try, fail, learn from my mistakes, and repeat, until my imagined goal begins to take shape in the physical world.

This month, I challenge you to stop feeling like a victimized critter, and beginning to think of yourself as the Creator of your heart’s desires. Stick to it, and you’ll soon see that whatever you’re trying to build outside is just a byproduct. The clear thought and hard work of aligning with your Creator self will empower you, fulfill you, and teach you what you truly are. And that, it turns out, was the real goal all along.

30 replies
  1. Diane
    Diane says:

    Hi Martha. I too have decided I need to become the creator for my sons future. So many adults with disabilities are not being utilized to their full potential. My other more severe handicapped son lives in a village/home with wonderful programs ( with a full functional bakery, restaurant and schooling. My goal is to find or create a working, successful business so our adults find their purpose. Please keep me informed with your efforts. Thanks

  2. Sandra Seneca
    Sandra Seneca says:

    Hi Martha: I love your work. I teach at a university in China. I think I am somehow on the right path in life and I believe I will find my way through my intuition. But your post about starting a community for Adam really touched me. Why? Because I am the only ESL teacher in my accounting department and because there are never teachers in this department, there are no textbooks at all. This would be fine if my classes weren’t 50 students and all of various levels. I perused a number of textbooks but students told me they had them in high school.
    I gave up.
    I am now making my own English as a Second Language textbook complete with illustrations and my own knowledge of the language.
    You are right, sometimes you just have to let your creative side take over and solve the problem.
    I will scan my first chapter on Wednesday. I am sure the ladies in the printing shop will be screaming when they have to see what they print. But I know I can make this book as well if not better than anyone else.
    You are, once again, so right!!!!!

  3. Bernie
    Bernie says:

    Hi Martha
    Just brilliant timing!! Last night I came back from a wild hearts retreat with Peggy Dylan and I know finding you via FYC took me there, today I take the keys for The Barefoot Sanctuary a home for all the things I want to do in my home town yoga meditation dance etc and to get to this point I had to become the creator but in those seconds after I got up this morning and a bit of fear creep in and I felt small again I read this blog!! Thankyou and I’m off inspired to Create!!

  4. Shadi
    Shadi says:

    I live in Britain and though the Brits are (comparing to my own culture of origin), much more advanced in their understanding of disabilities of all sorts, I still get that funny (not exactly funny haha, but funny “you must be joking!”) treatment in the public arena. I’m on a wheelchair and apart from some free-spirited children, I have managed to scare and confuse whole load of people just by giggling and enjoying my existance. I can hear them saying “why aren’t you sad? There’s hardly anything out there for you.” So now I think I’m ready to change a few minds. At least about the physically challenged (since I think I have a little authority in this field). Once my illness took a visible and tangible grip on some of my physical functions I opted for a very early retirement. But a few years later on and my children in the university, I eally miss using my many potentials for the job market. But there’s very little solid offerings out there. And all this because of the very wrong assumptions about disability. So Like Diane, but from the other side the pond and maybe a little different in ambition, I’m looking for suggestions. Dear Martha how can we educate people to see beyond disability. Not all of us can be paralympian or Helen Keller or any other sort of awe-inspiring champion. But we can take part and be productive.

  5. Jackie
    Jackie says:

    There are more special needs adults out there than you realize. Look around and talk to people who have developed programs in other places. Talk to the public school special education teams to see who is graduating from their 21 year old transition programs. You may have to go wider than a specific program built to Adam’s needs, but if you build it, they will come. As a speech/language clinician in the public schools, I can promise that.

  6. Alyson Davies
    Alyson Davies says:

    Dear Martha,
    I have so admired you, dating from when I first heard of you through your story of Adam.
    I look forward to another inspiring story of what you have done!
    Thank you

  7. Mary
    Mary says:

    There is no force more powerful and determined than a mother seeking assistance for her child with a disability. I know – been there and still doing it. My son is 31 and I love being the Creator for all that is good in his life. With the help of the main Creator, of course. Keep going Martha!

  8. Nellie
    Nellie says:

    Not a circumstance that I was drawn to this site and this was the first blog. I want to encourage you to dream…dream big for your son and a community that he is fulfilled and feels a part of. I have a passion working with people that have special needs and helping them to dream big. I have had many happy stories. There is a reason your son is there, perhaps you/he will start something new. Blessings in your endeavors, may light and ease flow to you both.

  9. Colleen
    Colleen says:

    I join you in imagining true community for all-how about developing a creative arts guild? A tour company that arranges vacations for people who have challenges? A specialized non-profit that provides opportunities to educate the local community to be less “fear” based about our differences? A wellness program specially designed to improve the life, diet and health of participants? I, too, after working a lifetime in the field, am trying to reframe what supports are relevant for people with IDD. State and Federally funded programs have created a system that forces us to create a volume of paperwork that pretty much matches each clients body weight annually- with limited positive outcomes or joy. I’m willing to take a leap with you and offer my open heart that has untapped passion for all that can be…..

  10. Kris
    Kris says:

    Thank you so much for posting this. I read it at the perfect time. I had just received what I considered devastating news from a school who likely won’t accept my child into its school even though I am certain it will be the very best fit for him. All they see is his extra needs. All I see is his potential. I believe that this school is what he needs to keep doors open as well as open new doors. I just know this school will be blown away by his abilities when they get to know him, and once they get over their stereotypical views of autism. So yes. I am devastated. But my crying jag is over. I am honouring my wounded critter, pity party that I am now having. And I am looking forward to getting into Creator mode. From one extra-needs Mom to another, thank you Martha for reminding me that when God closes a door, maybe he doesn’t open a window. Maybe he just wants you to blow a hole through the effing wall. Peace up!

  11. Cassandra Rose
    Cassandra Rose says:

    Hi Martha,

    I am your neighbor down in Santa Barbara.. I was in social work before a pioneer in preventive whole person medicine and my latest evolution the past 20 yrs of silicon valley science and technology etc..

    Social work is what you seeking for Adam… Social work which is social science.. is now coming back into vague as so many are displaced today since needs were never met.

    I am seeking similar to what you are . Very much appreciate your insighful analogy as it is frustrating that everywhere not just SB county but all of USA is so behind the times in what can be actuality with our knowledge today… The Technology is here but not utilized.

    I am a Deaf person… looking into resources for me in Santa Barbara since I am new here.. I found 2 groups that are excellent organizations to expanded on making life respond to the person.. rather then the person working it.. is what they need !!

    Jeannette Duncan who founded this group is based in
    San Luis Obispo Jeanette Duncan – President If Jeanette is not aware of who you are already.. she will be excited you are in her community and I am sure she will have resources for you and Adam !

    The Mission of Peoples’ Self-Help Housing is to provide affordable housing and programs leading to
    self-sufficiency for low-income families, seniors, and other special needs groups on California’s Central Coast
    Opening Doors. Building Neighborhoods. Improving Lives.
    Peoples’ Self-Help Housing

    Over 40 Years of Providing Affordable Housing in San Luis Obispo, Santa Barbara, and Ventura Counties
    San Luis Obispo Office
    3533 Empleo Street
    San Luis Obispo
    CA, 93401
    (805) 781-3088
    FAX:(805) 544-1901

    Santa Barbara Office
    26 E. Victoria Street
    Santa Barbara
    CA, 93101
    (805) 699-7220
    FAX: (805) 962-8152
    The Mission of Peoples’ Self-Help Housing is to provide affordable housing and programs leading to
    self-sufficiency for low-income families, seniors, and other special needs groups on California’s Central Coast.

  12. Cassandra Rose
    Cassandra Rose says:

    This group is in San Luis Obispo too… It was created by special need students At Berkley U and is very helpful. Jo Black the director of tri county ILRC for 23 yrs is very accessible and commited to helping.. Very active

    This would be the place to find other familes like you and Adam in your area ! They have been a super resource for me.

    The Independent Living Resource Center is a public-benefit, nonprofit organization that promotes the Independent Living (IL) philosophy and its tenets of full access, equal opportunity, and maximum success and self-sufficiency for all people with disabilities.

    Like all California independent living centers, ILRC is consumer-driven and consumer-led, meaning that the majority of its board and staff members have a disability themselves. Staff uses their collective knowledge, experiences and ideas to support consumers in their efforts to live as independently as possible.

    Santa Maria Office
    Santa Barbara North County
    327 E. Plaza Drive, #3A
    Santa Maria, CA 93454
    (805) 925-0015 Voice/Text (TTY)
    (805) 349-2416 Fax
    (805) 354-5948 Video Phone

    It is part of this larger advocacy group for people with special needs…
    California Foundation for Independent Living Centers (CFILC) started as a peer support mechanism for executive directors of the fledgling Independent Living Centers in California (ILC) in 1976. Originally the directors were the usual representatives who went to Sacramento to educate public policy makers on issues affecting persons with disabilities.

  13. Cari King
    Cari King says:

    Hi Martha. I’ve been a big fan of yours for quite some time. Whenever I read your books, articles and posts, it is always a thought provoking, soul searching and inspiring moment for me. This article of yours definitely resonates with me too. Thank you so much for sharing your inner and outer life journey. It’s a joy. A treasure. A comfort to know that I’m not alone on this walk. I don’t have any ideas or connections for you, on this quest for creating a community for Adam & you. I have all the faith and positive energy for you though!! Sending you lots of both and lots of hugs!! Take care and have a great day!!

  14. Gail Harris
    Gail Harris says:

    Hi Martha, I read your posts often, and this one touched me deeply. Yes, I am a mother and have had some challenges with my son. But more than that I am moved by how you always teach by example, and here, in particular. You are a world leader, yet this post, through your vulnerability shows how you are like the rest of us, and more importantly, how we are ALL more alike than different. You didn’t just say it, you SHOWED it. That is a real gift to the world, and I’m sure to yourself as well. When we give we receive tenfold. Thanks. Keep up the great work. I wish you the best with your quest for your son, and I’m sure that you will succeed!!! From reading the posts i see that you already have.

  15. Nicole Dauz
    Nicole Dauz says:

    Your blog brought me to tears – my friend sent it to me at exactly the right time. My daughter has global developmental delay and is only five years old, so I am just learning that I need to be her voice, advocate and most of all a Creator! God bless you and all the work you do.

  16. Rachel
    Rachel says:

    You have an inclusive community right up the coast from you, in west coast Canada. I work with people with special needs. If you’re planning a vacation, please be in touch. I’m an educator, writer, Naturopath and Yoga teacher here in Tofino, BC. We have wild, cold water surf here! I can put you in touch with a group who can take Adam surfing with his wet suit on…I can include him in my Yoga classes. I believe you’re a person before you’re a disability. So, my version of life is fully inclusive. I have and loved all your books. Martha, I quote you all the time to people I work with. You are soooo loved and celebrated!!! Thanks for reaching out. One day, I hope I can reside in Cali near you! Please connect if you feel like it: 250.725.8801 xxoo Rachel

  17. Deborah Cleere
    Deborah Cleere says:

    Martha, there is an awesome group called The Ranch. They are creating a destination for people of all abilities to come and work Ina supported environment. It’s in SLO. Their gardens are up and running, and they are selling lavender and I don’t know what else! Check them out on Facebook . I’ll check and forward the link. Adam would be so welcome there, and he might enjoy the outdoor experience since he is such a nature lover.
    I work in special ed and I share your desire to create welcoming communities where people of all abilities are contributors. We need more of this!
    Love always to you and your amazing son.

  18. Amy Dietrich Hernandez
    Amy Dietrich Hernandez says:

    Oh, Martha! You always seems to know what I am thinking! Ever since I received Expecting Adam as a gift while I was pregnant with my own son with Ds (in 1999), I have been picking up your books here and there and usually have found what I needed. I love following this blog. Thank you!

    And this could not have come at a better time for me. I am in the midst of trying to get my (now, almost 15 year old) son included at his high school. They keep telling me that it can’t work, but I know it can! It has for others, in other places! I need to open their minds and my Charles and I need to blaze a path right through their doubts for others to follow.

    Thank you, thank you, soul sister.

  19. Luz
    Luz says:

    I am mexican. I just want to congratulate you on your article “The talents of Down Syndrome” in I have a baby girl with Down Syndrome, she is three months old. Your words have helped me to see our life different, where the future is waiting for us with a wonderfull life. I would like to receive to DS information from you.
    Best regards,

  20. Patty Comeford Adams
    Patty Comeford Adams says:

    My DIL who had metastatic breast cancer and was bedridden created the most amazing community for herself on-line. Being so sick, she was often bedridden. It was of great help and comfort to her and has been of great comfort to all of her family after her death. When she died she had over 15K followers, was written up in NY Times, New Yorker ,Time Mag etc. . On-line can work. xo

  21. Maria
    Maria says:

    Good Morning Martha,

    Hope you are reacclimating yourself bit by bit to your new surroundings. It is a major change that takes time, maybe several years till you and the environment accommodate each other and Adam. You’ve been quieter in your notes since the move so I feel the change is a lot to absorb and to sort out. Being quiet and patient with yourself ain’t so easy. Encouraging you as you encourage all of your readers. Here’s looking at you kid!

  22. Alice
    Alice says:

    Thank you for this. I am moving with my husband and 23 yr. old son, who also has DS to a community that does not have near the opportunities we have currently in our city. This scares me but also excites me to see what I can cobble together for us!

  23. Ida Rose Florez
    Ida Rose Florez says:

    Needed this today! It’s been open on in a browser tab to read for a few days and just haven’t gotten there…totally swamped this week. This post was such a great reminder that I’m the creator of my life and destiny. Thanks Martha!

  24. Karen
    Karen says:

    Great post! I'm a speech pathologist who has worked with children and adults. I would love to help! Whatever takes shape should be wonderful and fun for Adam!

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