In June of 2012, shortly after Autism One, I had had enough of myself and my just-get-me-through-the-day lifestyle and wrote an impassioned piece about self-care for those in our community.
Shortly after, my inbox filled with messages thanking me for saying what needed to be said to many moms and dads who were struggling with their own needs and identities while caring for their high needs children. Beautiful pictures of” before and after” mamas came my way. Truly beautiful women made even more beautiful when they started caring for themselves with only a fraction of the time and effort they devoted to their children.
“Tell me, how are you doing LJ?” a reader asked.
How am I doing…how…am I…doing…
Eh, I’ll just skip that one and come back to it. Lots of messages, very little time, you know the drill! (Bury, bury, bury, stuff, stuff, stuff).
A year flew by and I never answered that question for the reader or myself. I continued the self-destructive behavior that had led me to write such an impassioned plea in the first place.
Envy for those who’d heard and acted on my words blackened my heart.
Then, summer 2013 hit. As the heat descended upon me and my three offspring, my denial grew to a point that I could no longer bear. Something had to give if our son Noah was going to get better, and at the risk of sounding dramatic—if I was going to truly live and thrive again.
Here’s what I learned over my summer vacation:
Make friends with your inner escape artist and stop living in fear.
When Noah would tantrum uncontrollably and turn to violence to be heard, I outsourced the solution to that behavior to someone else. I comforted myself with the fact that I was able to hire professionals at the highest education level to help with this and told myself he was in good hands. They weren’t my hands, but they were the next best thing. Besides, someone had to take care of that piece of my life for me, so I could do the important things.
But then our team unexpectedly quit. I could get back to work networking trying to find replacements or…not? Not never occurred to me. But, lo and behold, with new necessary medical treatments on the horizon that were not covered by insurance, I would most likely have been forced to let them go anyway. The amazing collaboration we had in place was two years in the making. They were family. Add that to a tearful resignation that ended with, “He wants so badly to be a part of this family and I can’t do that for him.”
That admission hurt more than any slap, pinch or scratch his little six-year-old hands have ever delivered.
As a result, I learned a lot of my time and thought is spent trying to find a way out of autism. I have wanted out from the day the “a” word entered our lives. My particular brand of escape looks very noble and courageous to the outside observer. I’m a champion for children; a fighter for human rights! All around badass. Right? Wrong. When faced with the prospect of long summer days with my son I found myself chasing after a stranger; someone about whom I have been writing intimately for four years. My reality forced me to come to terms with the fact that I needed to be with Noah and be present, mentally, physically and spiritually if I wanted him to get better. I needed to be with him through the tantrums, through the night, through the hysteria. Not with him wishing he would stop, not counting the minutes until it was over, not focusing on how much better it would be when he was finished, but rather journeying with him through his suffering. Until Noah, I was a fix-it-now sort of gal. Move on. Quick. Tidy. Neat little box with a smart bow. Put it on the shelf. Done. Nothing is tidy or quick about autism recovery, and my 24/7 obsession with it was taking me away from all my kids. Not because I needed it to but rather, because I wanted it to. Of course, simply identifying the escape portion of my personality does not mean I’ve mastered it. I am managing it by living in the moment as often as I can. When I learned to be with Noah through his pain and acting out, I gained an incredible insight into my own abilities. Handling our reality, finding a way to bring joy to each day for all my children, and maintaining my sanity while balancing recovery makes leading a march on Washington much less intimidating. The fear of this life dissipated when I actually began to live it. However, the practice of balancing recovery from vaccine injury with typical family life and activism takes tremendous self-discipline. I still want to be on every call, attend every meeting and speak at every event. But, my noble escape needs to be my interest, not my focus if I want the statement, “My family comes first,” to be true. I work on this constantly.
“Do you want to be right or do you want to be happy?” was the question on every pop psychologist’s lips in the 90s. It seemed you had to make a choice. In the case of parents who understand what is happening in this country regarding our food and medicine, let being right MAKE you happy and leave it at that.
As parents who understand the politics of autism and the genesis of chronic illness, we are forced to live double lives. We must traipse around society, following the rules, keeping our jobs, raising our families. To the grossly misinformed mainstream, we have a special child instead of a sick one and while that’s sad and all, we need to move on and do our thing. So we do—only we do it knowingly against the backdrop of a corrupt medical industrial complex, a government that knows full well what is happening to our children and chooses to bury the truth; all whilst proliferating chronic inflammatory and epigenetic illness by continuing their incestuous alliance with the food and drug industry. Money and power trump children and babies every time. We carry this concrete provable knowledge with us everywhere we go. Probably the worst aspect of membership in this club is we knowingly watch children we love fall victim every day. Their parents, unwilling to break from group think and read the science for themselves, will defend their choices and their child’s specialness/allergies/learning-disabilities/diabetes/arthritis/auto-inflammatory illness/autism as they continue to watch their soaps and microwave the latest nutritious, vitamin fortified, natural kid’s meals they see advertised on commercial breaks.
So, when enraged (heartbroken and uneducated=enraged) parents malign or degrade you, know that it is their lack of information and ego speaking and walk away. Just…walk…away. Please, if you retain nothing else from this piece, absorb this. It degrades you and your soul to engage on a personal level with individuals who cannot hear you. If you are on social media, drop your favorite science/study link, send them to VAERS and respectfully disengage. More often than not, you are not dialoguing with a real parent anyway, but rather a paid employee of the pharmaceutical industry. This is what they want you to do! They are paid strategists baiting you. Time spent on them is time you could be spending on yourself.
If the insults fly from someone in your family or a trusted friend, this is incredibly hard to bear gracefully. But, YOU MUST choose the high road FOR YOUR CHILD. A simple, “I understand how you feel, ****, but I have done the work (hand them copies of your research), I know what has happened to my child. I respect your choice to continue on your path, please allow me to do the same. You are important to me and I do not want this to come between us.”
As these parents take on the role of defender for their special/allergic/learning-disabled/diabetic/arthritic/auto-inflamed/autistic child, they will be harassed, dismissed and maligned by the system that made their child sick in the first place. They’ll read a package insert on the MMR just to spite you. And there on those many, many pages of adverse reactions, they will find the genesis of their child’s illness. My greatest teachers taught me how to think for myself and patiently waited for me to meet them where they were. I had to find my way, Noah’s way, for myself. View yourself as a teacher. Your students are often rebellious, undisciplined, dutiful consumers of special interest propaganda. Live by example and eventually—probably not in your time—but guaranteed, IN TIME…they will come around. If they do not, this is not your concern. You are on the trajectory of healing, hope and truth, with love and science as your foundation! Save your energy for talking to educators, medical personnel, government officials, the media and your community members.
Comparison is your enemy.
I have a delightful friend with a great family. Her kids learn foreign languages, travel the world, behave well, their home is clean and they are friendly and supportive. My life is messy. For every step forward, there are quite literally four steps back. But, my friend’s story is not my story; her children’s story is not my children’s story. Yet, on my bad days over the summer, when the escapist wanted to take control, I found myself longing to be like them. But I learned shifting my healing energy toward longing for a different life plants me firmly on the path toward bitterness. Do not compare your child to your friends’ children. Do not compare your child’s progress, lack of progress, behavior, diet, growth, speech, sleep habits, academic performance, etc., to anyone else’s child. Do not compare your spouse, your house, your bank account, the size of your ass or YOURSELF to others. We detract from the sacredness and purpose of our own journey when we do this. Our place is in our circumstance. We have to learn and grow and love and live in the truth where we are; in our skin, in our family, in our community. When your mind starts to drift toward thoughts of how great your friend’s husband is, or how some simple diet changes catapulted your friend’s bipolar child to the honor roll, remind yourself — who you are and why you are here. You have a divine purpose that is unique to you and your family. Your place is in the microcosm of our movement. We rally tirelessly for healthcare that recognizes our children and their specific medical needs as INDIVIDUALS. We know the science as though it were our DNA. So, why look at the (unknowing) herd as though their situation is somehow better? It’s not. It’s just different. It may look easier. It may in fact, be easier…but, how does this reality directly affect you and your situation? When you find yourself saying, “Who does she think she is?” Immediately follow it up with the real question. Who am I? And refrain from listing a litany of your shortcomings! Focus on what you have accomplished this year, this week, today, in this very moment, rather than on what you have not done. Our lives are HARD. Our burden is heavy, and our worries are many. We know the truth. Bite off what you can chew and focus on your many, many victories. If you have children you love, who love you back…there are many victories to behold.
Back to how the piece started. So, I plugged and plugged through my year. I participated in a ground-breaking documentary, tried to help my colleagues save the life of terribly sick child who was being abused by The Loyola Healthcare System, drove all over the country to see doctors for Noah, became Noah’s chief behaviorist, spent quality time with the neurotypical kiddos, more talks, more radio shows, more community service, more social commitments. Push, push, push, stuff, stuff, stuff.
Then in early August, the truth came a callin’ in the form of a sinus, ear, and upper respiratory infection that I could not shake. As breathing grew more and more difficult, I continued on the path of gluten, caffeine, sugar take-care-of-all-the-children-and–make-summer-fun, repeat–until I could not get out of bed without the aid of a nebulizer. I was so sick eating hurt. Coffee, my lifeline, became repugnant. The moral of the story here is, if you will not listen to that little voice when it speaks to you the first time (as it did to me in June 2012) it will come back for you. Only, after so much prodding and nagging that gentle voice turns into a blood-curdling scream.
For an entire day, I lay prostrate in a dark room listening to the rhythm of my home carrying on without me. Laughter, a few tantrums, adults talking, children complaining, meals being prepared, a pitiful White Sox game, medicine doled out. Then the guilt crept in. I felt guilty for being sick. Guilty for laying down.
What the hell is wrong with us?!?!?
Why, in so many of our minds, does responsibly caring for ourselves somehow detract from our children? Right now, we have Thinking Moms recovering from cancer, major auto-immune illnesses, circulatory conditions…you name it, we’ve got it going on. Yet we push ourselves further and further down the priority list until the blood-curdling scream forces us to halt. This notion that basic self-care is somehow self-indulgent has got to go. You know how people who come out on the other side of cancer or debilitating illness or some sort of horrific accident or tragedy find their way to gratitude? I can honestly say this illness left me feeling abundant gratitude. On my third day of sipping green tea, I actually wanted the green tea, instead of my usual sugar and dairy-drenched coffee. On day five, when I attempted to go back to my old ways (old habits, especially self-abusive ones, die hard) my body actually rejected the coffee by sending readable signals to my brain. Too much! Feeling nauseous. Holy cow, sugar crash coming! And in that moment I decided feeling better, feeling good and choosing a joyful path toward recovery for myself AS WELL AS NOAH, meant more than any momentary stress reliever. Now, I have never been one of those, “everything changed in that moment” kind of people. Slowly and with constant vigilance toward my goals, I change and grow for the better. But it requires persistent mindfulness on my part to keep the momentum going. Right now, the path is clear and I am far enough down the road that the starting point is beginning to blur. I know I can keep going for my family and for myself. Come with me (again)!
Much love and respect, The Rev