The Thinking Moms’ Revolution is reeling. Our very own Melanie Baldwin, AKA Booty Kicker (B.K.), now suffers with spine and liver cancer after having beaten breast cancer and bone cancer.
Melanie is an amazing woman who has changed the face of the autism and cancer cultures by telling her story to thousands as “Booty Kicker” in the Thinking Moms’ Revolution’s book Autism Beyond the Spectrum. For anyone who knows Melanie through Facebook, two words come to mind. “Faithful” and “Godly.” For those of us at TMR who know her on a more intimate level we may use use the words hilarious, witty, kind, loving, patient, and steadfast. She is the voice of reason, and sometimes opposition, but always with a clear focus in mind. She makes us all better people.
As Melanie struggles to overcome her current situation with cancer, her severely affected son Luke, still requires 24/7 care and attention as he is self-injurious and quite ill, suffering the lingering effects of severe autism. Please consider donating generously to help her family care for Luke as Melanie regains her health, and please help their family establish financial security that will help them thrive during her absence.
Please visit the GiveForward site set up for the Baldwin family here.
If you have not, you must read the blogs written by Melanie, our B. K. Her Autism and the Church series found here, here and here is truly exceptional. She is touching so many lives. Read. You won’t be disappointed.
~The Thinking Moms’ Revolution
Saturday, May 3, 2014
In describing Andrew to anyone who asks, I always call him my happy little Buddha baby. So sweet, so thoroughly happy and content. So quiet and peaceful. Even his new pediatrician noted his sweet nature and commented that "most children with this diagnosis show many more behaviors" ("behaviors") are what people call negative or unwanted behaviors of autistic children).
"We got lucky" I always say.
But did we? Is it really just luck?
Andrew lives a life in a house with nearly every element designed for his convenience and safety. He has a small cocoon of a room with all his favorite things. He lives with two siblings who worship him - his twin treats him like a little king, and Ava calls him "my treasure". His two parents are borderline obsessed with him. We love, literally, everything about him. We are like those obnoxious first time parents who think their kid is the most amazing creation ever. Everything he does is so damn cute and every milestone he hits is cause for celebration. Hell all he has to do is look at us and we praise him! And every single time his eyes meet ours we smile these huuuuuge goofy grins at him and usually coo at him how cute he is, or special, or how much we love him.
On the other hand, haha, we have these two other pretty awesome kids too. BUT we would not call them angels, nor do we praise them half as often as they see their brother be praised.
This is something that while it has always been somewhere in the back of my mind, has come to the forefront because of some reading I have been doing for my next trip to SonRise in two weeks.
The book I am reading suggests, like it's title, that "To Love is to be Happy With". Certainly we use happiness to show Andrew our love day in and day out as it is our only means to communicate with him. But what about Ava and Ben? Now, I am not suggesting they are neglected or made to feel second fiddle. They aren't. They are as enamoured with their brother's visible blossoming as we are. We spend quiet, happy time with them singularly, even if only a few minutes, daily. They are loved And they know it.
But maybe they need more. The book I am reading suggests that children, when allowed to be free of judgment, can be their best and true selves. When we teach that actions are bad and we yell or hit, the child comes to believe at some level, perhaps, that something is wrong with them.
Andrew lives a life free of judgment from his parents since SonRise. Ava and Ben don't. I am going to work hard, really, really hard to let go of my judgments of them and show them just as much total acceptance of their persons.
Frankly, Ava is my tough one. My golden hearted firecracker. Fast to react. Quick to fight. Is she so defensive / offensive because we have taught her to live on guard?
This isn't about a life free of discipline. It's not about letting them run wild. Just as when Andrew does things like eat dirt or mulch or runs down the driveway we have to stop him, all children need boundaries. Aside from physical harm, though, we pretty much let the little guy do whatever the heck he pleases. The house is set up so he can't get into any real trouble. Why not give them the safe gift?
But I think we do need to loosen up. Let them be. Let them, like their brother, blossom in a home with two parents who will unconditionally accept and love, free from judgment.
Let's see what happens.
Monday, March 3, 2014
I skipped February? Well, I suppose that is easy to do considering it's a short month and for the half of it we were battling a pretty gross stomach bug in our house.
In the midst of that Andrew clearly needed to see a doctor because his cough was pretty brutal. I thought I had cured his ear infection with homemade garlic oil drops and pulsatilla. Wrong! We did a course of antibiotics and two nebulizer treatments. They recommended treatments every four hours but he really only needed it twice and I really hate giving western meds when unnecessary now. The two doses he did get left him screaming for hours on end, bringing me back mentally to those days of his vax-injury fever. Rough place to visit.
We saw some really amazing gains last month with Andrew. He's answering questions with a yes or no, almost always responds to his name, his eye contact and level of awareness, I would classify as typical now. Or darn close. It's amazing and I oscillate between being incredibly proud and enjoying each moment to being suuuuuuper hungry for more gains.
Our genetic testing came back and to simplify: we are anxious to review with Dr. Gruber. I clearly passed down the mthfr 1298 mutation, as all 3 have it (and do does my mother). No one besides Andrew has the c677t. He has a long, long list of mutations that I am anxious to learn more about. Ben has less of a list, and Ava even less complications. This, at least, is good news. But, with them both having the mthfr 1298c, I know for sure that any further vaccines are dangerous for any of them (not to mention, for me as well). How different would our lives be if they did this kind of testing before vaccinating? To identify the kids "at risk", like mine.
Can't dwell. Can just use it to move forward and try to support his body's gene mutations as we can and restore good health for him. For all 3 of them.
In any case, I had a doc appt for myself at our old family doc two weeks ago. End of February "have you had your flu shot yet this year?" Absolutely not! "We will get you one today." Absolutely not! It's the end of February and that shit is poison. It is absolutely ridiculous. The only people I know who got the flu this year, got the shot.
Thankfully Andrew's new pedi office didn't even ask when we went in there. I am taking that as a good sign. His old doc thought it was a good idea to do their shots when he was sick because his immune system was "already working". Asshole. These new docs must actually read the science.
Saturday, January 18, 2014
My third blog post in a week?! And from my iPhone. This one's been percolating for about 24 hours.
Yesterday, I had five new autism families come to me for help. FIVE. It's usually one or two a week. When the family comes to you, you hear their story. You relive your own. You remember the frantic helplessness. You remember the longest lasting anguish imaginable. Five times yesterday.
My purpose on this planet now is to show others the way around chronic illness, and through it if they are already there.
But it's also to stay strong enough here to keep pulling myself and my son through it, and yesterday made my well run dry. Going to have to learn to balance this if this volume of numbers continues.
Andrew is walking for a day or two after a pulsatilla dose, then stopping again. Going to talk to the doc about it Monday when I bring Ava in.
I have had high-anxiety dreams this week, they are making my heart and head race and keep me on edge all day long.
Tuesday I was in the grocery store with Benjamin, picking up things to make a meal for a new-mom friend, and in the gluten free aisles ran into a mom of autism. They dabble in gluten and dairy free, but haven't gone full force . She asked if it helped and I told her diet has been our most important intervention. She looked like she wanted to ask more. I didn't offer anything. Nothing. Since when do I stay silent? How long will it haunt me that I could have sent her to Dr Gruber or TACA and I did NOTHING? Said nothing.
Am I trying so hard to be non confrontational that I am denying my truth?
It's a balancing act. Every day I post stories about sick babies and I think: how many more oft real life friends will block me on Facebook today? So in real life with this woman, I didn't want a rejection? Why does my pride even get to be a factor in the quest to save babies? So unlike me.
But it's cost me. I feel uncomfortable around most humans now: they know what I think, the articles I post, my thoughts on this blog. And it's all out there because it's such an important story to tell: autism is treatable and preventable. We are proving it. But at a cost. I can say I don't care what you think of me, but in truth, when you turn around and get your child the flu shot after the year of work I have done, it feels like a blatant rejection of me and my truth.
My feelings shouldn't matter in this. It's okay when friends agree to disagree. But this, children's health, is my purpose, and feels like my entire life, so it is difficult to not take it personally when the humans around me , sweet friends of mine, make different choices. I am isolating myself a lot, on purpose.
And I know there are people making different choices because of my truth, and that's really all I can ask for.
Some days it just gets to me.
I have given you 81 peer reviewed, published in medical journal studies that prove the vaccination/autism connection. It's not just the heavy metals/neurotoxins. It's everything about them. They change our very DNA. I have showed you the role GMOs play in our poor health. Showed you that Tylenol causes autism and asthma. I have linked you to articles that prove beyond a shadow of doubt that herd immunity is fiction, that outbreaks are cyclical. That we create new diseases with vaccinations. That the effects of even one round of antibiotics change the body forever. I really don't know what is left to question.
Part of the problem this week is that I am tired! I am taking care of ME! And exercising six days a week, for going on 3 weeks, and have already lost 6 lbs. my body is changing and I am a little more sensitive because I am hungry, and out here exposed without my ice cream crutch to make it better at the end of the day.
My heart is, as always, thankful. We are in such a good place. It's just a strange transition time.
Wednesday, January 15, 2014
So, Andrew got sick the Sunday after Christmas. The stomach bug that lasted five/six days. It was really rough. By the end, our guy was pretty weak and very tired. Within a few days of his recovery, though, we began to notice he wouldn't walk. He was parked on the couch or clinging to us til we held him. He was incredibly wobbly when we put him in the middle of the room, could barely make it to the couch. Poor boy.
His SonRise sessions occurred on his volunteers laps.
I started to worry, we had a naturopath appt scheduled but it kept getting moved due to a burst pipe in her new office. As we approached two weeks of him not walking, I was extremely concerned.
On Monday we finally went to our DAN/ND. I relayed the story above to her, and she smiled and said, easy! He needs pulsatilla!
I had pulsatilla in my cabinet. We use it to ward off colds and for Bens extraordinary clinginess/shyness when it gets bad. We popped two in Andrews mouth and the appointment continued.
I carried him out to the waiting room and went for his coat and was paying, and he was gone!!! He had run down the hall to his doctor's office. Ha!! It works quickly!
We had to re- dose him yesterday again, but today he is up on his feet like nothing ever happened.
Next on my "to become an expert in" list, homeopathy.
Saturday, January 11, 2014
This week marks our one year autism anniversary. Just as on the day of diagnosis, there will be no tears or sadness. But for entirely different reasons. On his day of diagnosis, I was all cried out. We needed the label to have access to services. It didn't mean anything. I had cried for months about losing the Andrew I knew. I don't have to tell you about my intense grief -- you already read it.
Today, a year later, there are no tears because I am content. I have learned that autism isn't a life sentence. I have learned so much to help Andrew's symptoms, there are days he hardly seems fitting of the diagnosis. Today I celebrate so much of my life because the people in it , those there before and now these amazing friends I have met since, are gifts I wouldn't have otherwise. My marriage has never been stronger. My outlook has never been more positive. I celebrate each day and little progression so much, nothing goes unnoticed, which is a pretty awesome way to spend my days. Celebrating my kids and our steps forward.
On this 1-year anniversary of autism I am thankful we are on the road to recovery. His ATEC (evaluation to determine severity of affliction) was 106 a year ago (anything over 104 is severe ), and today it's 35. And that means on his 2 year anniversary of diagnosis, he could easily be recovered.
Well, not easily. It's a crapload of work. The research hours, the food, the supplementation, the therapy and the attitude take a toooooon of work.
But a medically healthy boy at the finish line? I would do it for my whole life if I had to.
And I am discovering, meanwhile, that I have a crazy powerful mind. The more often I am in my attitudinal best zone, the cooler my life becomes. Parking spaces open up for me. A card comes on the mail or a beautiful message from a dear friend is posted in my Facebook wall. My favorite song comes on the radio. Children obey. God, the universe, call it what you want, it's all the same, delivers gifts to those whose eyes and hearts are open to receiving them. It's a really cool place too be. And it's what I strive to be in daily.
I am back on the diet and exercise regimen I was on before autism came. It's so easy compared to the first time. I know where I am headed and what it takes to get there.
All from an autism diagnosis, one year ago this week.
Sunday, December 15, 2013
I am thankful for this road I have travelled, because had I not walked it, I wouldn't have seen the things I have seen or met the people I have met...
This phrase has been in the forefront of my mind this week.
Let me tell you, that from the place of deep fear and am get that I lived in to this place of thankfulness, what a difference it makes in my quality of life.
And it isn't even a choice anymore to focus on the positive. It's all there is: these autism moms who are in my life and understand everything about me, to the good in the community that surrounds me, to the miracle of Andrews undeniable recovery happening before my eyes each day--- there's just so much good, it's what I am swimming in.
Truly, I think, what if he never became autistic? And life carried on the path I was on. Sure, I would have been spared a lot of grief and heartache, but things weren't perfect. Life has challenges and we were deep in ours before autism came. And I had very little perspective compared to now. Autism has made us all healthier and happier. Ha! Can you imagine?
Oh yes there are days I am mad. I hate mandatory flu shots and I get very frustrated with some of the very evident damage that has been done to our bodies before I woke the hell up. It's hard because I know my children are growing up in a scary, poisonous world and I certainly did not give them the best shot at healthy lives ---especially Ava, who lived the longest with my poor decision making. All I can hope for is that she will make better choices for herself and her family some day. My children will know the truth and can be informed, powerful decision makers in their lives.
So, I am thankful. Still. Maybe not zen like October, but thankful. I cannot imagine my life without my fellow autism moms. I have just entered this circle of powerful, amazing women who I have known less than a month and yet they are already a second family. Because they know. More on this, later :)
Andrew. Andrew has had a hell of a month. He is now on 5- MTHF five days a week and has finished two vaccine clears. One more to go. He is blossoming, literally, before our eyes. He is curious and is actively exploring everything. He spends NO time each day isming. None. From most hours of his day two months ago to no hours. He hugged Ben. He seems totally enchanted by Ava. His sleep is the best it's ever been. He's so social. He still prefers the quiet of his SonRise room to the chaos of the living room, but quite frankly, so do I. He's rediscovering his love of books. But instead of stimming on the turning pages he is looking at the pictures and following points to items on the pages. He loves his SonRise volunteers and is thriving in this type of therapy.