thinking thursday.

MIND

Because Tess was diagnosed with Asperger’s Syndrome a few weeks ago, I’m focusing my energy on reading more about it, learning how we can help her explore and love her different “wiring.” So you’ll see more links to information about Asperger’s information in Thinking Thursday today and in the future, I’m sure. I hope even if you aren’t touched by this uniqueness in your own life, the information will help you be more understanding of people who are.

I’ve had many big learnings in this journey, including one about the story I was telling myself about Tess. I was living a “she is broken” story while Tess is living an “I am awesome” story. You can read about that discovery here.

When I worked at an international association that focused on human resources issues, I was their vice president of international and diversity programs. Active in the disability community, I was involved in that work when the Americans with Disabilities Act (ADA) was passed. The language in that Act was that employers had to provide “reasonable accommodation” for people with disabilities. When telling a friend about the victory, he said quietly: “But why wouldn’t we ask all employees what they need to be their most successful at their jobs?”

Indeed.

I think of Tess’ diagnosis as a way into what she needs to be successful. My brain and her brain simply work on two different operating systems; the challenges are when those two systems try to interact or work together, like a PC and a Mac. It’s my job to learn about her operating system and to teach her about mine. This book is my guide.

What does Tess need to succeed? I don’t fully know yet. But I’m learning: She needs a visual calendar. She needs structure. She needs a place to go to chill out and things she can manipulate with her hands while there. She needs checklists. She needs help making and keeping friends. She needs medication, at least for now.

What do you need to thrive? What do you wish you could tell other people you need to do your best work? What keeps you from telling them? I hope you’ll leave a comment after this post with your answers to that question–and any suggestions for resources you have as we wade deeply into the world of Autism Spectrum Disorder and Asperger’s.

We just bought a used iPad for Tess (from a friend of mine from college 30 years later – isn’t the circle of life fantastic?) and while we wait for its arrival, I’ve been looking into good apps for kids with Asperger’s or High Functioning Autism. So many articles talk about its usefulness with kids who have autism that we thought it was worth a shot! I’ll let you know!

I have decided I need to consciously try to build mental resilience as I age (can you tell I have a birthday coming up soon? and that Alzheimer’s runs in my family?). So I am learning one small thing every day. So far, I’ve learned how to cut a mango, fold a fitted sheet, remove nail polish more efficiently, roll up my sleeves, make carrot juice in my Vitamix, how to choose and buy a pineapple, and how to repurpose an old cell phone into an emergency phone for my car (or other location).

I also discovered how to keep track of things I’ve ordered online. It’s a fantastic iPhone app called Slice.

BODY

In the last two weeks, I have changed my life. I spent four days with a miserable headache as I detoxed from the caffeine and sugar in Coke. I had a tiny addiction to it. I stocked my kitchen with whole foods. I primarily eat only raw vegetables and fruits until dinner, and dinner is smaller, more mindful, more clean eating. We are eating real food, not canned or boxed food. I haven’t had a Coke in two weeks, I’m drinking a lot more water. I’m juicing carrots and spinach and beets and loving it. I am determined to lower my blood pressure and go off of the blood pressure medication I’ve been on for two years. And I’m relying on this book–Coach Yourself Thin–to help me better understand patterns that have been harmful to my health.

And here’s the deal: I have more energy, feel far less depressed, my blood pressure is fantastic, I feel like moving and exercising more, and my mind is so much clearer. I’m happier. In just two weeks. I can’t wait to see what a month of this kind of mindful eating and moving will bring me.

I’m noticing healthy recipes and making them healthier, taking this (amazing!) baked oatmeal and making it vegan (Egg Replacer, Earth Balance instead of butter, and almond milk) and less sugary. Using fresh fruit and veggies to create taste sensations like this mango salsa. And yes, having pizza, but making the dough myself and using fresh tomato sauce and veggies on it rather than a frozen pizza. Food can be slower, more mindful, and more satisfying. Touching it, cutting it, having a bag of organic carrots in the fridge to nosh on–it feels like I’ve undergone a revolution.

I want to be here a long time. I want my veins to be happy veins. I want my heart to keep pumping. I want my mind to be free of the fog of sugar and processed foods.

SPIRIT

I found this talk by Jane McGonigal to be very interesting. And then I signed up for the game she talks about: SuperBetter. SuperBetter is a tool created by game designers and backed by science to help build personal resilience: the ability to stay strong, motivated and optimistic even in the face of difficulty challenges. Resilience has a powerful effect on health — by boosting physical and emotional well-being. Resilience also helps you achieve your life goals — by strengthening your social support and increasing your stamina, willpower and focus. Every aspect of the game is designed to harness the power of positive emotions and social connection for live, feel, and act better. Listen to the talk before you play the game to build up your physical, mental, emotional, and social resiliency.

VOICE

“Real generosity is doing something nice for someone who will never find out.” -Frank A. Clark

YOU

How about you? What have you read or seen of interest this week? What iPad app suggestions do you have for Tess? Leave a note and link in the comments so we can all check it out!

About Patti Digh

Patti Digh is an author, speaker, and educator who builds learning communities and gets to the heart of difficult topics. Her work over the last three decades has focused on diversity, inclusion, social justice, and living and working mindfully. She has developed diversity strategies and educational programming for major nonprofit and corporate organizations and has been a featured speaker at many national and international conferences.

46 comments to " thinking thursday. "
  • There’s a new Reading Rainbow app for iPad that looks tremendous! 
    http://gizmodo.com/5919771/reading-rainbow-might-stop-the-ipad-from-ruining-the-brains-of-all-children (I almost want an iPad myself just so I could play with it!)

  • I have a family history of alzheimers and dementia…I join Luminosity.com and am playing the “brain games” — also plan to work on my addiction to social media.  I do believe in some ways it’s made me a bit stupid and significantly reduced my attention span.  

  • Robynv

    My son was diagnosed with Asperger’s at 8. He’s a (mostly) happy 10 year old now and we have both learned so much over the past two years. 

    There are mountains of books to read, a million websites to peruse and “experts” everywhere you go. ;) For our family, we took a grain from each and found the right combination for right now. I know that will change as hormones start raging. But now that I know there is calm after the storm, I have much more patience and understanding when the sky darkens and winds start blowing again. 

    I wouldn’t change a single thing about my son, except maybe give him the ability to see that his differences are what make him who he and those differences are pretty damn awesome. 

    Tess is lucky to have you and Mr. Brilliant for parents. In some of the single sentences you’ve written, she reminds me so much of my son. These two, they won’t just do wonderful things in the world someday; they do wonderful things right now, they just do it in their own way. {hugs to both of you}

  • I highly recommend a blog written by Amy Corbin Storch, available at http://www.amalah.com. Her oldest son has Sensory Processing Disorder. I don’t know much about it, but he has challenges that sound similar to experiences Tess is having. He’s six now and has made some amazing strides that his mom documents with solid writing and humor. She writes about general, funny experiences too, like how she freaked out when a bird got in her house (maybe I just loved it because I could relate all too well :)).

    I also recommend a book written by John Elder Robison (author Augusten Burroughs’ brother). It’s called _Look Me in the Eye_ and is about his lifelong experiences with Asperger’s Syndrome.

    p.s. I tried the nail polish trick a couple days ago with great success and just this morning properly turned back my sleeves for perhaps the first time in my life. :)

    Much love to you, your family and especially Tess. :)

  • Ah! I love this, Patti! As someone who was diagnosed with 2 learning disabilities in 3rd grade, I can totally relate to Tess. She is so fortunate to have a mother like you who is willing to be accommodating. I feel like that is what helped me–my parents were such an integral part of helping me navigate my “disabilities.” Even though teachers told me I was “stupid” or “different”, my parents always told me I was incredibly intelligent, because people like Tess and I have to work twice as hard as other people. Tell Tess (if she doesn’t already) she will learn to love her “disability.” I love mine. I love that I don’t think like everyone else. Sure, it can be a struggle sometimes, but you always come out of it stronger. 

    My main piece of advice for you and your husband (and other daughter) is to advocate for Tess as much as possible right now–because she’ll need it. Eventually, she’ll be able to advocate for herself, and that is such an amazing feeling!

  • Colleen Rutledge

    One of our local professors has Asperger’s and has learned a lot through her work with livestock. Her story is amazing. Temple Grandin, at Colorado State University!   

  • Cantarah

    I loved the movie Phoebe in Wonderland and think you will too.  It’s on Netflix now.

    I’ve had my share of struggles with a daughter that “thinks different” and is sensitive in ways I am not.  We all struggle with doubt.  Learning to embrace the unique qualities of our children (and our own) – regardless of what the “normals” say or think – is a gift that grows.

     http://www.amazon.com/Phoebe-Wonderland-Felicity-Huffman/dp/B001URA5XY

  • I have always been different, and I have always related to Tess stories in your books. I think she is AWESOME. While dealing with my own stuff has generally been a private day-to-day battle, my eldest daughter (26) was recently diagnosed bipolar. She has moved home and it is mostly like trying to live with a 5 yo in a 26 yo’s body. She also thinks she is AWESOME! She dresses in bright colours and feathers and attracts attention like a beautiful magnet, all the time being afraid of how other people can hurt her and cut her down with a word. It’s not easy, but I have every faith you are the right parents for Tess.

    I am actually writing a little book about the importance of creativity for people with disabilities. Myself, I use a “painting” program called ArtRage on my computer. I know it is available for iPad at $2.99 (I think). I think it would be absolutely marvelous for Tess. I hope you can test drive it and see if she likes it.

    Take care and keep us updated as you can.

    Blessings,
    Jane

  • I love this Ted Talk by Temple Grandin called “The world needs all kinds of minds”.
    http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html

  • Thislittlepiggy5

    I know quite a few adults with Asperger’s. I didn’t even know one guy had it until I had known him for about six months…and someone had to tell me….and I’m trained as a counselor! A dear friend of mine has an adult daughter who has Asperger’s and she is a mom now…a very good mom. Another friend has an adult Asperger’s son who works at a very high tech computer design job in a far-away place. I have known Asperger’s children whose only “disability” was due to the limitations placed on them by parents or teachers. I applaud your efforts to be informed about this issue. It will help you understand Tess’ different way of perceiving things. But all people are different in their own way. I loved her “gargae saling with Dad” outfit! And I love her tiny things. And her own blog…with art! She has fashion sense, style, and creativity. She is doing some pretty amazing things right now. I know you can’t wait to see the amazing things she will do in the future.

  • Julia Atwood

    oh patti…
    I would love to talk to you about this…two of my grandsons has autism…and as a family we have done tons of research on therapies and possibilities. Both boys are gifted high functioning and adorable. But it can be challenging…and every child is different. Don’t know if you still have my number from VT 2 if not email me and I would be happy to share all we have learned as far as research and possibilities. The most important thing to start right away is a clean diet. which it sounds like you are doing. The boys are on a no gluten, no dairy and totally no processed foods, little to no sugar, and no artificial colors, no junk diet. That alone has made the most difference. I would not have believed it unless I saw it myself. So pretty much the family has changed their eating habits and they all seem more healthy for it. There are so many things to tell you…so much to read and learn and contradicting  information…easy to go into over whelm…but…I know you…and if there is anyone up for the challenge…it is you…and what an advocate for change and possibility for Tess…I look forward to talking with you…if you wish….
    Hugs, Julia
     

  • Padma Ayyagari

    This is going to be a long comment Patti, hope you don’t mind.

    My son was diagnosed with High Functioning Autism at 5 just before he started school. He didn’t know the right end of a pencil and his language at that stage predominantly was TV ads.  He used to run around on the outer circle of kids playing and repeat television ads to them. That was his interaction. Now 12 years later, he is finishing his Year 12, emotionally articulate,  is an exceptional drummer, has a school musical coming up and he is the solo drummer for the entire musical, got himself a part time job working 8hrs a week in a supermarket, is part of Air Force cadets, wants to join the Defence force, or be a professional gamer (loves his X Box) and do multimedia at college – in a nutshell, wants to try everything that he can think of because he has no limitations on himself.  
    The biggest change we made after the diagnosis was to look at the use of  everyday language in our household. We changed the sentence structures, made language very simple, one instruction at a time and a language filled with value words, and also ambiguities.  He intensely dislikes when I say ‘may be’ – because he didn’t know what a ‘may be’ looks like, but I deliberately do that  for him to get used to life’s ambiguities.  We had to become extremely patient, call his name and wait for 10 secs – because that’s how long it takes them to connect.

    We have attended an all day workshop given by Wendy Lawson (who is diagnosed with ASpergers at the age of 43 I think, and did her Phd in Autism).  I have learnt so much about Autism in her workshop than any book that I ever read. 

    Patti, I suggest you attend Temple Grandins workshop if she is giving one near you, there should be videos available of hers and her book/s also are a great source to have an insight into how they think.

    In my 17 years experience with Autism what I found is that as a primary care giver, I am a total support for my son for his emotional well being.  As much as they say that Autistic people don’t connect with others because they don’t look at you, they are completely connected with their primary care givers and rely on them totally as they try to understand themselves and their place in society.

    For me personally, meditation helped enormously to gain the patience and resilience required to deal with him on a day to day basis.  

    Research in neuroplasticity, affective neuroscience – the work of Prof. Richard Davidson (he is a pioneer in Affective neuroscience and is actively involved in Autism research) helped me a lot in understanding how their brains are wired differently and how the pathways are not connected. It just means that we mothers as primary caregivers are the most important people in their lives to make those connections in their brains, because autistic brains don’t have as developed mirror neurons as neuro typical brains do. (Research of Prof. Vilayur Ramachandran)

    Works of Simon Baren-Cohen, Rita Jordan, Uta Firth (they are all British academics) is very helpful.  Another book that is helpful and you can probably even get his consultation (He is an American) is Dr Daniel G Amen’s “Healing he Hardware of the Soul”.

     I have written a thesis as part of my Advanced Diploma drawing on and tying Prof. Davidson and Dr Amen’s work with the philosophical underpinnings of Sathya Sai Education in Human Values.  It is called “Application of Education in Human Values to Social and Emotional Learning in Autistic Spectrum Disorders – A theory”, this is the theory I have applied and continue to apply on my son and I am grateful to say that the results are huge, both on him and us as a family.

    Hope this is helpful and sorry for a lengthy comment, couldn’t help myself.

  • I understand. Discovering that I had MS meant dealing with people from one end of the “understanding” scale to the other. Too many people want to do for the person with a disability rather than helping them learn how “to do” with a disability.  We need always to remember that they need assistance in learning to function.

  • Thank you for all you do, Patti. Thank you for sharing the adventures of Tess. As a result, I know there are tons of us out here who care deeply for her.

    Oh, and I love SuperBetter!!

  • Heather

    Interesting article on VF on this bright fellow….

    Betting on the Blind SideMichael Burry always saw the world differently—due, he believed, to the childhood loss of one eye. So when the 32-year-old investor spotted the huge bubble in the subprime-mortgage bond market, in 2004, then created a way to bet against it, he wasn’t surprised that no one understood what he was doing. In an excerpt from his new book, The Big Short, the author charts Burry’s oddball maneuvers, his almost comical dealings with Goldman Sachs and other banks as the market collapsed, and the true reason for his visionary obsession.http://www.vanityfair.com/business/features/2010/04/wall-street-excerpt-201004

  • Patti–I’m pretty sure my brother–now in his late 60’s–has Aspbergers. My oldest daughter–a special ed high school teacher–was the first to in our family to suggest this. He has a very high IQ and so never fit well with children his own age..I finally asked him if he thought he might have this and he said, “yes” but doesn’t want help. He has made a life….he drives a cab and lives in a small town and has friends who tolerate his sometimes maddening behaviors. Once I realized this –my relationship with him shifted considerably–mostly I think I became more tolerant of behaviors that used to drive me nuts. For example, I used to think he wasn’t listening when we had a conversation it felt pretty one sided, but new I see he is listening, just not responding to what I say..but later he might bring it up. I can only imagine how hard it has been for him to go through life feeling so different and not knowing why. Bless you for the great parent you are and I think Tess will be so fine because of you and Mr Brillant. Unfortunately for my brother my father was pretty emotionally abusive of him and neither parent quite new what to do with such a brilliant little boy. I often wonder how different his life could have been with different parents–who were more able to help and encourage him.

  • Kat Lorden

    Isn’t it amazing how we go into learn everything we possibly can mode when our children are affected? Parent of Aspie kids checking in! I have an extensive library of books on AS. I have had “teams” of educators, therapists, psychiatrists, etc to help my kids succeed more. The more opportunity they have to learn (meaning she is going enough that this is a great advantage), the more successful a human being she will be. My best piece of advice in raising these kids is pick your non-negotiated, draw your line in the sand. The rest is just “stuff”.

    I also have been on a much healthier me journey. I went vegan 3 months ago. I was given a new bicycle. I too have more energy. Its just so cool.

    Next stop, making more time for art. after I finish my latest book I’m reading ;-)

  • Really interesting re the other languages – so now multilingualism’s an Alzheimers preventative? Woo hoo! I majored in French at university and am fluent, and also speak and read Italian and Spanish. I knew knowing other languages conferred enhanced pattern-making and abstraction abilities, but I’m delighted to know it helps with dementia and memory. What I also love, is that  it gets you inside other ways of seeing the world. I’m often astonished at the dull ways dialogue is translated in movie subtitles compared to the poetry  of the original language. 

  • Liz

    Hi Patti,
    Love your posts. Something you may want to look at is the work of Dr Natasha Campbell McBride – tremendous success has been reported for the autism spectrum with her GAPS protocol. It comes down to healing “and sealing” the gut. I’m a trained nutritionist and her work brings together a lot of advanced insights. Now, it’s not vegan….but in my opinion you can modify it to accommodate needs.

  • Linda T. Marsh

    Hi Patti,

    Congratulations for being proactive!  Having a direction, both for Tess, and for your health, IS awesome. 

    This link is for the Briefing for the 2E Newsletter (which is free).  2E means twice exceptional – gifted, with other realities such as Asperger’s, autism, PANDAS, dyslexia, OCD, ADHD, etc.  It frequently has links to articles on Asperger’s.  They also have a subscription newsletter.  http://campaign.r20.constantcontact.com/render?llr=8n75yxbab&v=0013dcFqZEsrWmk-hjMzprJAwdqF-lFL0oPKnTnqZX2f7MKDsm_Alq_P5Z8o559yHdha5ojwHO7zkzicf93x_Z8c52eLde2hCxsx81nIAghxhveCqYvi4ythIldDqal-lwL_Z2hIH_fKOvEAGiPZEW1qQ%3D%3D

    Wrightslaw has a good website for being proactive with regards to IEP’s and other school issues – what to do and what not to do.

    Science Daily also has articles on Autism and Asperger’s research.  Email subscription is free. 

    And if you utilize the free service called Trapit, you can get articles on neuroscience compiled daily and sent to your email address.

    I was talking with a psychologist today at Lake Junaluska, who lives in Columbia, Georgia and works with veterans at the VA who have PTSD.  She was telling me how useful “tapping” is in relieving stress.  I told her about Drew having PANDAS, and she thought it could be useful.  You might check out Youtube to see some demonstrations on how to do it.

    Like you, I have been on a whole foods regimen.  Recent lab work was great, I’m losing weight, and BP was 106/60 (!!!).  Dr. Mark Hyman’s books “Ultrametabolism” and “The Blood Sugar Solution” have been very helpful.

    Loving our time here in Asheville!  You’re lucky to be raising Tess in such a great environment, and she’s fortunate to have you and Mr. B.  It truly helps to have highly intelligent parents who are proactive and loving.

    My regards,
    Linda Marsh

  • Clara Boza

    It’s wonderful to see all of the responses from folks who have thoughts and recommendations about resources for Tess. She is at the center of a very special circle of love.

     My “of most interest this week” item is old news, but thrilling for me. I’m nearly through Susan Cain’s book ‘Quiet: The Power of Introverts in a World that Can’t Stop Talking.” I see myself in every page, and wonder how different my life might have been if my parents–and I, for that matter–had understood that I wasn’t just some odd, quiet, bookish kid that they took to be anti-social, but simply had–you put it so beautifully recently–a slight different “operating system.” I spent nearly all my life in “extrovert” jobs, trying to fit my square self into round holes and draining myself in the process.

    I mention this because I’m sending big virtual bouquets of flowers to you and your family for appreciating the wonder that is Tess, in all her uniqueness.

  • Jan Sturtevant

    Oh my. So much to say, and it’s past my bedtime. I posted Jane’s TED talk on FB with a note about the connection I have with her inlaws. I’d known about SuperBetter–not by name, though–and had not pursued it. Maybe because I was too wrapped up in fighting my own depression. I am reading her book and I will start the game: you’ve inspired me! Of course it’s not the first time that has happened. :-)

    I read all the comments and I”m so happy for you to have all these suggestions and support. I agree that Tess was born to the best parents for learning and growing through this. And I understand the relief that comes with knowing, with having a name for this constellation of behaviors. Your  realization that your ‘story’ for Tess was that she is broken, while hers is that she’s awesome resonated profoundly with me. I’m only beginning to explore the story I’ve told myself about my life. 

    At 64, I’m not sure just what I need to thrive. I’m going to explore that, too, thanks to your framing the questions for me. I’m so grateful for all you share with us.

    Oh: I too have concerns  (my PC euphemism for fears) about Alzheimer’s since my mother has it. I’m touring homes for her now and readying my house for my dad to move in with me. You commented that this is a hard and “potent” time. Yes and yes and yes. And maybe I will take a conversational Spanish class.

    I’m sending my love and very best wishes for your journey with Tess. I’m so glad to know her through you.

    xo

  • Sandshell

    Patti – it doesn’t surprise me to hear of Tess’s diagnosis. But I want you to know I am an elementary teacher and there is so much to love about children with aspergers. They are usually some of my favorite children. Their mind’s are so interesting. The best thing to do is make sure Tess gets understanding teachers who work well with the “different” wiring and have positive patience. That will make life so much easier for both of you. Good luck. Things will be fine!

  • Edie

    As odd as it may initially sound, I am glad Tess got this identified early and that she has you and Mr. B for parents. My stepson was not dxed until two days after his 18th birthday and he did NOT get the supports and modifications he needed from the NC school system, and he will never get back those years when he could have benefited from acknowledgement and understanding. I often wish he had come into my life earlier… but that is fruitless thinking. Two of the simplest things we did for him early on were 1) buy kneadable erasers by the industrial box load; they were invaluable to him for fidgeting and having someway to occupy his hands and helped to divert his anxiety. The second was that I made him a weighted blanket from muslin and marbles, with various covers that could be washed. They really help him to decompress when he is seeking that deep sensation and can’t verbalize what it is that he needs. We continue to advocate/fight for the services he needs to be as independent as possible and recognize that he will probably never be able to live or work independently and that NC politics being what they are that we will always have to look out for him and others of different brain and body wirings….

  • Aloha Patti,

    Thank you for continuing to share Tess’ story and your own.  My nephew is currently taking part in a 3 month program called Brain Balance.  My sister would be happy to share any information with you if you wanted to speak to someone who’s currently involved in the program. Here’s the link: http://www.brainbalancecenters.com/

    Much love, mangoes & pineapples!  :)

  • Edie

    Oh, and another thought that was enormously helpful to our family… we took my stepson and his favorite of our dogs (we had 5 at the time, now 4) to Clicker Training. It was really pretty cool – it helped us all understand how short, concrete statements and rewards helped both the human and the dog to understand exactly what was being asked of them. My brain is *so* abstract (to the point of distraction, really) that I can’t even begin to imagine how his thought process works. It helped us “meet in the middle.” And it was good for the dogs, too.

  • mj

    Our 12 year old just read “Born on a Blue Day” by Daniel Tammet, perhaps Tess would be interested. 

  • Playcrane

    Go to http://www.selfesteemshop.com to get their contact info. This independent bookstore is run by a play therapist/social worker named Dee Dee. She is so helpful when it comes to suggesting book-related resources. Just tell her what you need and that Jodi Crane sent ya. (She and I share a fondness for children’s picture books. It’s a highlight for me to see her at conferences.)

  • sarah

    I would recommend “The Highly Sensitive Child” by Elaine Aron. I haven’t read this book, but I’ve read “The Highly Sensitive Person” and it’s been helpful in understanding sensitivity and over-stimulation and what to do about it. She also has a website: http://www.hsperson.com. :)

  • […] writer, and teacher extraordinaire, Patti Digh wrote a great blog post a few days ago.  Writing about her daughter, Tess, who was recently diagnosed with Asperger’s […]

  • Lila

    Patti, if you ever feel you might need a “support group” and can’t find one (I can’t believe there isn’t one in Asheville) I have a friend whose son has Asperger’s (he must be in his 20s by now) and I’m sure she would be happy to share her journey with you.

  • Tabrams

    Patti, I think a diagnosis can put a point into space and give you a place to start… I also have found that receiving a diagnosis can be really a tough phase. Please feel supported and hugged–with confidence that you WILL handle this and tenderness for those *moments* that sometimes come along.

    My son has Non-verbal Learning Disorder (sort of Asperger’s cousin.) Receiving his diagnosis was hard at times, but living with him has been wonderful. He needs to separate input from output (he cannot listen and take notes.) He needs processing time. Sometimes he needs an interpreter of what people might mean.  He works to find his niche in any situation… but he usually manages with or without my anxiety.

    As you say we all have needs, strengths, learning styles and preferences. I need lots of information to handle stress… and lots of conversation. I am an interactive learner. Frankly I was afraid to ask someone to talk through things with me (especially math) because I felt foolish… mostly I am over this, but it took years. Age does bring perspective sometimes! 

    I know much more about myself and about life because disability requires a full-immersion experience–the drive-through path is absolutely quicker and slicker, but it doesn’t require the same relationship with the process… That relationship has turned out to be precious to me.

    Peace. And congrats on your healthy choosings!

    PS there is a visual schedule app.

  • Janna Zonder

    Patti, I’m so happy that you and John now have a diagnosis. I think of you all often, and know that you will be able to help Tess sort it all out and that she will thrive. How wonderful that you have Catherine Faherty as a friend and resource. (How wonderful for all of us who know her!) You’re in my heart and thoughts, as are both of your beautiful daughters.

  • Kimberly

    Hi,
    I pray you all find peace, balance and support. Remember getting a dx is like the start of a new race. Pace yourselves as it is a marathon not a sprint. With the improved instant access to information it is possible to become overwhelmed by information. One baby step at a time. She is still the same child you had before, getting a diagnosis is a way to identify symptoms to assist with finding ways to try to help support. Naming something can be helpful in understanding and explaining. May she find hope in knowing her brain simply runs differently and there are helpful things that can be done to help it run more efficiently in a world with many other kinds of brains who have to work to be their own best too. Kim

  • Kimberly Shepherd

    Wow – I so appreciate this post, Patti, particularly as your prior view of Tess as living a “she is broken” story is one I know too well.  The comments below are going to be resources for me as I travel the journey of childhood with Girlie, who has ADHD and is profoundly gifted and also has some other challenges that have yet to be identified. I’m grateful to know you and be proxy to know a bit about Tess and to be able to use your experiences and wisdom to guide me. Thank you for your candor and your authenticity, as always.

  • The Curious Incident of the Dog in the Nighttime and A Mango Shaped Space (both fiction and truth).
    Love her, love yourself, love Mr. Brilliant and remember…it is not your fault. I didn’t think my now 23 year old son would live to see THREE because it was so frustrating to deal and cope. He made it. He even went to Japan for an entire college semester by himself. It took hard work for him and us…We had him earn poker chips by making eye contact, initiating conversations and learning his friend’s names, along with other activities….when he was 15! He came to hate the poker chips so much that he practiced the behaviors until they came easier to him. He also took Theater/Acting classes all 4 years of HS. He says it is easier to “pretend a role” when he is in an uncomfortable social situation. this is getting too long…just know that you love her and she loves you and Dad. Give yourselves a break. I remember screaming at my husband in the front yard: “I can’t go on explaining him to the WORLD!”…he was about 8 at the time. 
    Breathe in and breathe out…and keep putting one foot in front of the other, while Tess dances her own beautiful life around you. love love love

  • Talyaa Liera

    My younger son has Down syndrome. He is 8. While Asperger’s is nothing like DS, I don’t think they are miles apart, either. I choose to believe that people are being born into this world who see things differently from the rest of us. I choose to believe that there is much the rest of us can learn from these amazing different-seers. I choose to believe that the world is a far richer place when we all learn to see the world in the myriad beautiful ways that there are.

    I have heard very good things happening for children on the autism spectrum who are exposed to Waldorf education. Also I’ve read anecdotal evidence that children do very well learning the form of martial arts I practice called Oom Yung Doe. http://www.oomyungdoe-ne.com/ishan-autism-testimonial/

    Much love to you.

  • My favorite people in the world are on the spectrum!  Someone once asked me “why” (you know our favorite question).  Why are there so many more  kiddos on the spectrum than there use to be?  Without thinking I said “so, that we will teach differently.”  I am a better educator and human being for knowing and loving children with autism.

    your partner

  • Amanda

    Ipad apps are great and I am sure you’ll get a lot of suggestions–you are so wise and such an amazing soul— thanks for sharing your story with us.    As a 12 year veteran teacher of tots with special needs, I think you will find ABA /PBS (applied behavioral analysis/positive behavior support) to be valuable resources if you haven’t stumbled on that already.  We are with you (all).

  • Carolynn Anctil

    I personally find a great deal of comfort and strength in simply knowing what’s going on.  Interesting, as you listed all the things Tess needs to operate comfortably, I nodded to all but one of them.   It would seem that she and I have a lot in common.  

    It’s a very impressive list of changes you’ve been making in your life.   As for me, I’m working on making a few of my creative ideas tangible, with a goal toward marketing them soon.  It’s a giant step outside my comfort zone, yet I’m nibbling away at it bit by bit and being patient with myself (a new concept).  The most rewarding thing I’ve accomplished so far is my tenacity to continue in spite of the endless obstacles that have been presenting themselves.  It’s a great exercise in creativity just coming up with solutions!  

    Tied in with the above goal, I also, just today, bought my own domain name.  Yay!  and, gulp.  I’m feeling very much out of my depth and have decided to just breath for a day or two and then tackle the next step, actually linking it to and establishing a website.  So, lots of learning here, too.  It’s exhausting, yet exhilarating, all in the same breath.

    I don’t have any experience with this syndrome, however, I have every confidence in you and your family’s ability to provide the best possible environment for Tess.  My very best to you all.

  • Karla

    I have heard from parents that the term “aspergers” is no longer… that this condition will be again under the label of “autism”.

  • Claudia Snowden

    Wonderful information and support here. Author Elizabeth Moon wrote an award-winning book “The Speed of Dark.” She too has a son with spectrum, and writes the story as she imagines he would experience it. A profound example of the creativity that emerges in the world surrounding people with special abilities. Corragio, Patti. I am confident that your lives will be enriched and that your writing will become even more powerful (if such a thing is possible).

  • PEGGY ASHMAN

    I am coming in on this discussion late, it took me that long to gather myself to respond.  I am so touched by everyone’s outpouring of love and suggestions.  I am not sure I have but one of those in a moment.  I am so impressed by what you mentioned Patti, the bit about what is it that we need to do our best work (paraphrasing) an important question that rarely gets asked of us.  I have found myself striving diligently to live an authentic life as a licensed minister, Reiki Master, Author, Artist, Mom, Wife, Sister, etc.  Most of the people in my sphere see me as being gregarious and an extrovert and the reality is, nothing could be further from the truth.  I have hurt people’s feelings unintentionally because I cannot embrace the high level of interaction that is required for close personal relationships.  Gratefully the big exception is with my husband of 25 years.  He understands my need to decompress, hide, not interact or socialize.  He supports my desire to hide up to a point with a nudge when I am becoming to far inside my head.  When I decided to become a Reiki practitioner (alternative energy healing modality) I felt set free from so many things that never came together inside my world.  The energy of awkward social situations was finally released and love was put in the space it previously occupied.  Reiki is an effective tool for many who struggle making sense of their experience here in this space and in this time of highly charged and frequently changing energy.  I highly recommend it.

    About Tess.  I always wanted to know growing up why I did not see, think or feel the way that others did about any number of vital and mundane things.  I so wanted to be like everyone else but despite my best efforts I could not.  It is my thought that the wonderful folks like Tess come here as teachers.  As an educator shared in these comments that those with Asperger’s are some of her favorite students.  This is not to diminish the challenge that comes with raising this beautiful child but it is a rallying cry for all of us.  Painting on silk and being a Reiki master has provided me with opportunity after opportunity to look at situations and people and their lives on a level that I never had before.  The joyous experience of reading about this beautiful girl, Tess, that we have all taken into our hearts provides us with the chance to look at our own circle of bi-peds and to see them at their essence.  Just like some of the photos that you take of your Tess show her spirit shining beautifully outside of herself.  We can look around us with keen eyes and pure hearts and see what there is to be learned by those around us.  Tess will be our inspiration.  As she inspires us, may she be blessed with courage and the knowledge that she is loved beyond measure and may this knowledge have her stand tall and proud to be the teacher that she is to so many.  And so it is.

  • Michelle

    Patti, I have to tell you that you are a part of my day, seriously. I havent read your blog, but I have you on my FB, so I see your personal postsI think you are brilliant.. I have your book Creative and life is a verb. Love them. I just think you are wonderful, and funny, and witty. I love the posts about Tess. I think she is a very cool little girl. I have a nephew her age. I have an almost 6 yr old myself. I just recently saw someone post info for you about ASPERGERS,and it made me wonder why?I had missed your post about the dx. I just have to say: WOW. my son was diagnosed with autism, this past March. I am struggling to “help” him— to say the least. I myself, am an “older” mom (45) and some days don’t know what I am doing. and lack patience.etc. I just wanted to tell you that you inspire me, with the eat clean and your writing. I wish you and your family the very best.I also want you say I think John is pretty cool too. i will continue to read your blog, as I feel I will learn from you as you learn! Thank you!

  • Delia Lloyd

    I love how you talk about Aspberger’s Patti. I have many friends and relatives who share this diagnosis and/or have kids who do. And I think it is, as you so beautifully express it, about getting what you need to succeed. Thanks for framing it this way. I plan to share.

    Delia Lloyd
    http://www.realdelia.com

  • […] On a serious note, I loved the fabulous Patti Digh’s take on discovering that her daughter had Asperger’s Syndrome over on the blog 37 […]

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