How you do anything, is how you do everything. I don’t know if that’s a direct quote, but the idea is from a Buddhist teacher who wrote a book with a similar title, which I also cannot remember exactly. What I do remember is reading that idea and how it resonated.
So I had surgery on Wednesday, was home that night, was in a lot of pain Thursday, barely remember Friday, but know I felt much, much better and by Saturday was over it. I don’t mean physically, I mean I was over it, as in – we did the whole surgery thing, now let’s get on with life, this has becoming tiresome. When I woke up on Saturday and still felt like I’d been hit broadside by a semi, I thought – I should feel well enough to get up and do things. Then I had to remind myself, it had only been two full days since I woke from the anesthesia and that this was the third day and I would feel better, eventually. With that thought in mind I wandered around and went back to bed. Sunday I was more active and yesterday I was a whirlwind of activity, comparatively speaking. But I did have to take a nap at one point and had a brutal headache. Today, determined to just “act as if” all was well, I woke with everyone else, tried to do my part in getting the children ready for school, did a load of laundry, and now, sitting here, feel exhausted again, and, it must be said, tired of feeling tired.
How you do anything is how you do everything.
So the bad news is I’m impatient, but that’s also the good news because my impatience pushes me to be active, which is a good thing after surgery as the worst thing one can do is give in to the feeling of just wanting to stay in bed… forever.
Like so many things, emotions tend to seep into everything. When I feel upbeat and full of energy everything takes on a brighter hue, people seem friendlier, minor delays and the vicissitudes of life don’t have a lasting impact. But the opposite is also true. So this morning while getting Emma ready for her school bus she said she wanted to play a game.
“Okay. What game do you want to play?” I asked.
“Imagine that game,” she answered.
“How do you play it?” I asked.
She then began to sing an Elmo song entitled – “Imagine That” and began to script the dialogue between Zooey and another Sesame Street character.
“Now we know what the – imagine that – game is,” Richard remarked.
Yep. And here’s the thing, this isn’t terrible. There’s nothing inherently wrong with her choosing to do this during the ten minutes she had left before her school bus arrived. But I felt disappointed. I had hoped she wanted to play a game. You know, a game where we actually interacted. But that’s not what Emma had in mind. And it’s okay. She wanted to sing her song and so she did.
Impatience. Acceptance. Impatience. Acceptance.
How you do anything is how you do everything.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book
Here’s another bit of Buddhist wisdom:
“What you do to others, you have done to yourself.”
It is, to my mind, the Buddhist version of the Golden Rule: Do unto others what you would have them do to you.
You mean you’ve felt the brunt of my impatience?! poor Emma has, but the good news is, I’m working on it. And while I do that I’m also sending you love. XXX
You live your full experience of Emma every day. And every day, Emma lives her full experience of you. It would be unkind to yourself to expect to be devoid of impatience. It is just part of who we are. Your self-awareness should always be a part of your journey, and part of your journey together, and I hope you do not let it bring you too much pain. (I sometimes wonder if you have to develop a more acute sense of self-awareness to compensate for Emma’s different communication and awareness skills…this must be hard.) You are doing so well, and so much good. Thanks again for sharing your journey, and Emma’s. (P.S. is it possible that by singing the song she was giving you an example of how the game is played? could it be turned into an interactive game between you?)
Hi Arianne, I’ve never posted a comment (its just not my nature:)) but I’ve been following your story, or rather Emma’s story, for so long…I feel I know you and your family (not in a stalker way I promise!) and I genuinely care about all of you, especially Emma. You see, I have a 3.5 yo son on the spectrum and your feelings about emma, life, family, etc are my feelings to a “t”….it astounds me sometimes how alike we are, so when I read your blog I feel like I’m reading my diary (if I had one!). Anyway, I feel compelled to post today b/c of the pain Emma (and you as her mom) are going through right now. I know a while back you mentioned reading the GAPS book….I just read it myself and it has changed the way I look at my son and at life. He, like Emma, eats so few things and is so picky (a carb addict beyond anything you have ever seen) BUT I am forcing him to do this diet. We have had him on the “full” GAPS diet for a week and a half and have now started the “intro diet” which I have to tell you is beyond difficult. In fact, he has not eaten a morsel in two days (and hence can’t go to school) BUT I’m telling you right now something HAS happened since we started and he IS changing (btw – we’ve done GFCF in the past and saw absolutely nothing). Even his therapists commented that something is very different about him…and in a good way. I am telling you all this b/c if for no other reason than constipation, I think you should try this diet and jump right into the “introduction diet”- 100% commitment is required- it is sooooo hard, I have spent my entire week going to markets, throwing out all of our processed foods and sugar-y things and making chicken soup, etc from absolute scratch, etc but I really truly believe this will help Emma with her constipation. I think it will also help her autism but right now, the most immediate problem is her physical pain. I know you’ve tried a million things and its so hard to keep trying new things and so easy to be let down (been there myself so many times) but I promise you this will help her…don’t ask how I know for sure, I just do! And again, I promise I am not a looney. I am a mom, ivy league educated (former) lawyer, fellow NY-er (live in Westchester now), mother of two sons, one of whom is on the spectrum. If you want to talk please email me and I will give you my number. Written only with love and concern for Emma, Dory
Sorry – one more thing I should have said. I want you to know that your blog has been such a comfort for me, there are really no words to explain what you have done for me (and for so many others too, I’m sure). I look to you as a role model for how to handle myself in the face of the unspeakable horror that is autism and all of its implications in what can be a very scary and cruel world. Your kindness, honesty, candor, empathy, conviction and strength of character is truly an inspiration. It is how I strive to be (but all to often fail)…maybe someday:) So thank you and if I can ever return the favor in some way, I hope to be able to do so….
ps: email is email@example.com if you want to discuss GAPS or anything else
Thank you Dory, what kind, thoughtful comments you’ve made. I read the GAPS book, bought the recipe book, even spoke with someone from the organization who sends the books to people. I spent hours on the website, read everything I could find on it and spoke to a number of doctors and then decided to go with a naturopath who has her on seven different supplements. We did a revised diet, which I posted extensively about. It was incredibly restrictive, much more than the GFCF and finally after she refused to eat, dropped more than 10% of her body weight with absolutely no change, we finally after two months or whatever it was, said, no more. It was too difficult and too stressful for our family, for Emma, for everyone. I have read about people who are sure it has helped their child and I am thrilled it has for your son, (it is what all of us dream!) but having spoken to countless specialists, doctors, etc, I just don’t have it in me. I am exhausted. I am tired of fighting something that I have seen on her brain scans. Her brain is not like a neuro-typical brain. I cannot and do not speak for anyone else’s child, just mine, no diet in this world will change that fact. At best if there were some sort of food allergy/intolerance we might see something, but everyone who has seen this with their child says the same thing – it happened fairly quickly. Emma barely ate – for almost an entire week, there was little if any change in anything, including her constipation! I do appreciate your writing, it was so kind of you to reach out and I took your words as I believe they were intended – from a mom who loves her kid trying to share information with another mom. Thank you for that and keep me updated. I would love to hear how it goes and what changes you continue to see. It is wonderful to hear those stories. Thanks again, Dory.
With kindness and friendship,
Ariane- I really understand where you are coming from (although maybe I can’t completely because I haven’t been going through this as long as you so I can only imagine I guess) and I read all your posts about the diet you implemented (e.g. the special eggs you had to order, etc, etc). So just two last points and then I won’t say another word, promise…I just would feel guilty if I didn’t so please forgive me:) 1. My son has been tested for 97 allergies and sensitivities and didn’t come up positive for a single one (although muscle testing is telling a different story) and yet he is still being affected by the GAPS diet. 2. To your point about Emma’s brain scan – I remember reading a little in the book (imo the author should have devoted more time and pages to this part) about how a damaged gut (which clearly Emma has) over time can alter the nervous system and brain and can actually make it look very different from a NT brain in scans (larger in size often and just different) – and the bigger and more positive point she made was that the brain can change and regenerate with the restoration of a healthy gut. Ok, thats it. Sorry again. I’m the least pushy person ever so this is such a leap out of my comfort zone, I can’t even tell you. I just really want to do something to help Emma (and you) and I am blown away by this book and its implications for our kids and our society.
PS: Ever heard of or tried NAET?
We never did NAET. We began it years ago when Em was first diagnosed, but then were doing so many other things we stopped, particularly as she didn’t test positive for any allergies or intolerances by the people who were going to do it. They recommended it as a kind of “preventative measure” more than a necessity. My aunt swears it helped her with a couple of her allergies, though.
Ariane- Sorry for the late reply about the NAET. Not sure you’ll even see this unless you get comments directly sent to you but anyway… We are doing NAET now at the same time we are doing GAPS. I have heard amazing stories about NAET and saw on youtube a segment from a Long Island news show where a few guests had had amazing results from NAET…one child had been fully autistic and the other was ADHD….both recovered and parents swear up and down it was NAET. Anyway, my son is testing weak to many things even though all of his extensive allergy testing and sensitivity testing has come back normal. I would disbelieve it (being the skeptical NY-er that I am) but for the fact that they are using me as the surrogate and I am doing my damn-dest to keep them from pushing my arm down, and with some of those vials it just falls right over…its absolutely the craziest thing I have ever done but this stuff makes you crazy, doesn’t it?! Anyway, I just wanted to put it out there in case you or one of your readers/friends is interested in pursuing. (My NAET practitioner works in Mt. Kisco (where I see her) and in NYC as well.) Unlike the diet, NAET isn’t all that hard or time-consuming so at least it has that going for it:)
PS: We still continue to be amazed and surprised by the changes we see in our son since starting GAPS. We have such a long way to go and no guarantees that we’ll get there but unlike EVERYTHING ELSE we’ve ever tried, at least I know with ABSOLUTE CERTAINTY that its HELPING…and it only took ONE week for me to figure this out (unlike the GFCF diet which you have to do for 6 months they say before you can definitely say it does nothing!). He has lost all stims (verbal and physical), all hyper-activity (he is back to being the calm boy he was as a baby…at least most of the time!), has increased focus, increased use of expressive language, better articulation, better eye contact, absolutely ZERO sensory seeking (this was a huge issue for him), no more OCD-like behavior. He is still super picky about food, anal about arranging things, he can’t speak in sentences (not even close) and isn’t yet aware of how to be appropriately social with others (would be content to only interact with me all day long…a momma’s boy!) BUT if you had seen him a month ago and today you would not believe it was the same child.
PPS: Hope Emma is feeling better from her stomach bug:)
PPPS: If you ever want to discuss NAET, GAPS or any other treatments, please email me: firstname.lastname@example.org
Thanks so much for the update, Dory. It’s wonderful to hear that both the GAPS diet AND NAET are working! Really wonderful news.
Emma is doing really well, thank you for your thoughts. Keep me posted as time goes by. Love hearing about other people’s journey.