So here’s my week in a nutshell. My parents, who planned to move in to help us with our son Noah’s growing medical needs while balancing the schedules and demands of our neurotypical children, finally sold their house after a year of trying. Three days later, my mother received news that she has a tumor in her lung and is also in need of heart surgery. Most disturbing is the fact that neither of these issues can be dealt with until she has exploratory procedures done on her kidneys, which she had been warned several months earlier were “compromised” as the result of high-dose antibiotics she was given for a sepsis infection.
Then we have Noah’s regression and what I am calling the temporary loss of potty training skills that I am absolutely certain we will regain shortly. He has also not slept past 5:30 consistently for the past two months, and we have seen the resurgence of night waking episodes that entail long bouts with hyperactivity and require parental soothing.
Then while watching my kiddos play outside yesterday, I was bitten or pinched or whatever it is that ladybugs do to people. Thought nothing of it of course—until my neck swelled with two large bumps that then migrated to my arm, hand and soon hives engulfed my br…
Let me stop right here. Are you sick of me yet?
Because let me tell you, I am. The sound of my own voice telling it, the heavy feeling in my hands typing it out, the rehashing of my reality–though truthful it may be–drags me (and my family) down into the all too familiar pit of cyclical self-pity. It’s a nasty, dark place where recovery becomes an out-of-reach dream rather than a practical reality; and the language of learned hopelessness and helplessness that supports spiritual impoverishment becomes an established, unquestioned way of life.
Since journeying into the world of self-care upon the advice of my sage thinking mom friends, it occurs to me to ask myself, “Am I the only person who has had a week like this?” Absolutely not. Events like this are happening to innocent Thinking and Pre-Thinking Moms (there is no such thing as a non-thinking mom, just pre-thinkers whose own circumstances will soon lead them in search of knowledge) going about the business of raising their families and recovering their kids all over the globe.
I’m not special. But, I have over the course of the past several months of soul searching and physical healing developed various ways for dealing with this sort of adversity. The following are a few uber-simple things you can do that cost little or no money and can help your mind, body and soul stay focused on PEACE (what every TM needs most!), hope, joy and recovery.
#1 Make Your Space.
You have to carve out a nook or corner in your home that is just for you. This, while it may sound idealistic or self-indulgent, is necessary. I do not care if you live in an 1100 square foot flat or a sprawling Victorian. My entire house is autism: barricaded pantries, safety gates, bungee cords, security locks and remnants of thrown meals can be viewed from every room in my home. In fact, right now I am staring at a spoonful of Pentasa and sunflower butter that was chucked above my office door. It’s been sitting there for two weeks; layered on top of the SCD bone broth that covers the Enfamil that covers the Gerber’s “organic” baby carrot sauce. Noah has always had one hell of an arm, no doubt about that.
When his regression set in and my own attitude hit a plateau, a friend recommended that I clean out my closet to symbolically transition from our old life to the new one that I envisioned for our family. I took what she said to heart and spent a couple of hours getting rid of the clothes I have not worn in over two years as well as anything that no longer fit. This eliminated 75% of my wardrobe and made room for many other things! I went shopping in my garage and found a cabinet for my essential oils and a small shelf for books. NO BOOKS about autism allowed in this space except for Will Stillman’s, The Autism God Connection. For me, only books about spirituality, art and philosophy. A few framed pictures of artwork my kiddos made adorn the walls. I have a beautiful cross made by my friend Billy Tommey and other meaningful mementos that would otherwise be destroyed if not under lock and key. It’s just big enough that I can squeeze in, do yoga and even light a candle. When I am exhausted from cleaning up poop and stripping beds, I sit down on that closet floor and put on one fabulous glittery gold shoe, (Lulu Townsend, on sale for 23.00 originally 189.00) and remind myself the foot in that shoe, as well as the foot nestled in the torn up monkey slipper beside it belong to the same person. And even in the midst of my present circumstance–I am elegant. Say it with me my poop-weary, fried, monkey slipper, ratty-robe-wearing sistahs…
“I am elegant. My path is noble and this journey carries magic. I am a very important part of history. I am not alone. We are well.”
#2 A Little ACV Goes A Loooong Way.
So, I know the crazy lengths you will go to, ensuring your kiddos eat well. But, what do you do for YOU? If you can’t give up the Diet Coke and Doritos, no harm no foul!
Oh quit cringing, Purists! Everyone gets there in their own time!
Just start each day with a glass of clean water with a teaspoon of Bragg’s apple cider vinegar. If all these articles about fermenting and GAPS diet have you reaching for a vermillion Gatorade and cold cut combo at Subway, stop looking at the big picture and focus on what LITTLE things you can do today and build from there. Our children do not recover overnight and neither do we. I am just now getting into fermenting, thanks to Jane Casey, author of Eat it and Beat It and Julie Matthews, Founder of Nourishing Hope. The benefits of ACV far outweigh the initial taste. Now I even add it to my weekend cocktail if I’m the weekend mixologist on duty. Which brings me to the best kept secret on the planet:
#3 Green’s Gluten Free Quest Tripel Ale.
No, I am not advocating alcohol to solve your problems. I am saying when you feel like you want to enjoy a refreshing adult beverage of your choice when the sun goes down and the kiddies settle in, Green’s is the way to go! It’s a crisp blonde that tastes like a cross between a pale ale and Champagne. And it’s only 8 bucks a bottle. It’s so light that if I make a really spectacular juice combo, I mix it in. Oh, and speaking of juicing…
#4 JUICE! JUICE! JUICE!
If you feel like garbage, you are depressed, your kid is tanking and you add to all that a week like the one I opened with—YOUR health, not just that of your extended family and children, could be in jeopardy. I say that not to scare you but rather to impart the knowledge that little steps at self-care make a huge difference when it comes to the big picture moments. As parents, we take on, magnify, and hold ourselves responsible for everything that happens in our children’s lives at all times. We do this and it makes us physically sick, mentally exhausted and emotionally drained. Juicing helps. You do not have to own one of those fancy fandango vitamixes everyone is talking about either. I have a Breville that works just fine. Now, it’s not magic juice. You don’t swallow celery, ginger, kale and lemon and suddenly sparkle with resplendent brilliance as though you were the subject of an Orbit gum commercial. I had to juice at least 4 times a week for three weeks before my body was smart enough—and my mind’s connection to my body was strong enough—to recognize the benefits. If the thought of juicing sounds good but the mess, family resistance and reality have you shoving it back into the “someday” category, I suggest an exchange with our Sunshine. In the heart of my darkest days I complained to her about my weight situation which was seemingly out of control. “LJ, think about it. You can do anything for 21 days.” It took me 7 months from the time she said that for me to absorb it. But it stuck with me all that time. I am 25 lbs lighter now, much healthier, and to quote my husband, “glowing and so alive.”
THIS IS WHAT WE WANT, right?
To feel alive and vital and relevant in the midst of the political, medical and personal hurricane that is iatrogenic autism/chronic illness. If there is really something you want to do and you believe it will improve the quality of your life (which DIRECTLY improves the quality of your family’s lives!) you can do it for 21 days. After that, if it has the desired effect it becomes a habit. Another great Sunshine-ism: “Eventually, working out and taking care of yourself becomes your addiction”. I will never forget the first morning I woke up craving green tea and anticipating (with joy) what I would be juicing at 4:00 that day. 4:00 equals snap time, the time of day I normally headed for a cup of coffee the size of my face and the secret stash of peanut butter pretzels above the oven. Now I juice, try on my skinny jeans and do yoga with my 5 year old, Liam. It’s just a matter of time before Noah will be downward dogging too.
#5 Surround Yourself With Real Friends.
Not just friends who will bitch alongside you, but rather friends who know you well enough to pull you out when you are heading into the darkness (see Sunshine, above). This is particularly imperative with autism parents because our journey is truly more difficult than most, (especially when we are in full possession of the scientific and medical data that clearly indicates how and why our children are sick). Our daily lives are very stressful, as we live in a society that denies they were harmed, preaches they should be loved and accepted, while simultaneously writing policies and changing the definition of their “mental illness” so they can be legally discriminated against medically and educationally. This truth is a fundamental violation of our civil rights. Of course it’s enough to turn anyone into Maxine. We need to be around people who get this. They need to walk with us lovingly and respectfully, and we need to do the same for them as they walk their path. Focusing on others helps us take our minds off our own problems, even if just for a little while.
#6 Forgive Yourself and Others.
The other day Noah woke up at 4:30. I was simply not prepared or ready for the intense hyperactivity and verbal aggression that ensued. I lay in bed alongside a screaming stimming child, hoping against all hope he may tucker himself out and catch just a few more zzz’s before our Saturday was to begin. But, 4:30 turned into 5:30, into 6:30…into 7:00. And then I snapped. I hissed. I asked him why he couldn’t just stop and how he could continue this for so long knowing what it was doing to me. Clearly, normal moms do not beg and plead with their seven year olds to stop dropping their iphone and cars on the tile over and over and over again until they are literally sobbing incoherently. With all that happened this week, I just couldn’t take one more thing. And while this is a “normal” thing, in many autism households, this week, with everything else, I was simply ill prepared. I needed to go to bed Friday night having had someone tell me what was to come.
“LJ, when you and Dave hit the hot tub for your 15 minutes of adult time before you pass out, don’t drink anything. Don’t do any research after Dave falls asleep. Go straight to bed. You will be up an hour and a half before the sun comes up. You will be jumped on repeatedly and head-butted. Your husband, who you think is at the gym, whose name you will be cursing will actually be asleep in the in-law suite because he woke up in the middle of the night and didn’t want to disturb you. He won’t hear a thing, until you realize his car is in the garage and you hunt him down like a maniacal lunatic with tears streaming down your face, begging him to take over. You will then go to church, walk the trail, drink a huge cup of tea, and return home ready to start your day…all before 9:00 a.m.”
I recount this story, not just because it brings me back to the beginning, but, also because I did something very different after this episode than I normally do. I told Noah I was sorry for the way I acted, and unprompted he replied, “I am so sorry too, mommy.”
And then I proceeded to the BIG THING. I actually REALLY forgave myself. I didn’t walk around all day punishing myself for losing it. I didn’t call myself a terrible mother and tell everyone who crossed my path (as I am prone to do) how much I sucked that morning. I was honest when people came over later that day.
We had a morning from hell. But, we’re better now.
I also did not feel sorry for myself. Big difference between being sorry for a regrettable action and releasing it and feeling sorry for oneself and remaining in a dull, low-lying vibrational state of self-pity.
I also spent longer than usual in my closet on Saturday, because I could. There was another adult on duty, and I deserved it. After a few minutes, as the nasties that had transpired began to wash away and the gold shoe was doing its trick, I started to pray for the people who harmed my son. The doctor who refused to acknowledge his diarrhea that escalated to such a serious issue that at the age of seven, he cannot eat solid food. He will most likely be on maintenance medication for his autistic enteritis and severe esophagitis for the rest of his life. I prayed for her because I know my Noah is not the only child this happened to. I know so many kids who are quite ill and whose pediatricians did not catch the signs or mislabeled them with benign terms like “toddler diarrhea” or “fever” instead of investigating what happened.
During the course of that prayer time, I forgave this doctor. I do not believe she is a bad person. I believe she, like so many members of the medical community, will be sincerely devastated when they are allowed to read the science for themselves. I feel badly for my son and our situation, but, I never claimed to be a specialist in medicine, advertising my competence and knowledge with regard to immunological science. I never gave a child with a cold, 8 shots. I cannot imagine the pain she will endure when the seed of real knowledge takes root. So, I prayed for her. I prayed that she has a loving family and kind, understanding friends who will help her deal with this truth. And, forgiving her, as every major religious doctrine advertises, freed me–much like Noah’s potty training relapse– temporarily. It is an ongoing discipline. It is hard. But, I, like all of you, am no stranger to hard work. I want to be well. I want my children to be well. It is worth it.
I close with intentions and prayers for you, dear Thinker. I hope you find that nook, pantry, closet, corner, crawl space and make it your own. I pray you stretch and appreciate being alive, after you’ve juiced with a friend or had a guilt-free cocktail and released any anger you have. I hope you feel proud for the hard day’s work you’ve put in, grateful for the beautiful children you are molding and recovering, and fall into bed appreciating your inner and outer elegance. You are loved by the children you work so hard for…and by all of us Thinkers! THANK YOU FOR BEING YOU!
Love, The Rev
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