Take Your Head Out of the Sand

When Riley was three, I was attending a weekly meeting to discuss A Course in Miracles. I’d found the book a couple of years prior, and dabbled. I felt better every time I picked it up and read a little. It was at this challenging point in my life that I began studying it in earnest, and it got me through a very rough time and truly informed my spirituality. It still does.

There were anywhere from a dozen to two dozen who showed up at those meetings, and at least three of us (all women) had a kid on the spectrum, though I had not faced it yet. Two men had challenging sons. I don’t know if they were diagnosed with anything or not.

I would share my troubles, week after week, about this kid that screamed and cried for no reason, and finally one day, one of the women whose own son had already been through it said to me,

“Your doctor has not helped her. You need to take your head out of the sand. This kid sounds exactly like mine did, and she is hurting.  You might want to see the doctor we see.”

Blunt.

Her son is a few years older than Riley and one for whom removing dairy and wheat had a transformative effect. He oozed pus out of his nose until his system cleared of it. He “woke up” from a foggy haze just getting those foods out of his system. They’d also done chelation and a bunch of other interventions that helped him even more. He was getting better, and she was transforming herself spiritually, working on deep forgiveness in every area of her life.

Our regular pediatrician had advised us to simply, “Tell Riley she’s making a big deal out of nothing.”

And, “Kids have tantrums, and it is up to you to set limits.”

He was clueless as to what we were really dealing with, what that little girl was living.

“She’s fine. She has advanced speech.”

At three and a half she was having panic attacks and had the self-care skills of an 18 month old, but whatever. She could talk.

“You need to take your head out of the sand.”

If it had been anyone else to tell me to “take my head out of the sand,” I would have been offended and might have turned in the opposite direction. It was shocking. It stung.

“You need to take your head out of the sand.”

But it opened a door.

I knew she was coming from a place of love. I knew she cared about me and my child. I knew her kid had gotten better. I knew he used to be “just like Riley.”

Take

your

head

out

of

the

sand.

Sometimes, it’s just the thing we need to hear.

Brain on Fire

I recently read Brain on Fire:My Month of Madness by Susannah Cahalan. It is about a young woman working as a reporter in NYC, who suddenly shows signs of psychosis. She spends over three weeks in the hospital experiencing mania, paranoia, hallucinations, catotonia, etc.

It turns out she had something called Anti-NMDA receptor encephalitis. An auto-immune condition which put her brain under attack by her own body. It was treated with IVIG, plasmapheresis and steroids.

I read this with particular interest because of Seth and his PANDAS (which is now being called PANS because it seems strep isn’t the only trigger for many children).

The doctor that initially treated Susannah Cahalan accused the 24 year old of partying too much and suffering from alcohol withdrawal, (despite the fact that she wasn’t an alcoholic). He couldn’t figure it out, so he came up with that little diagnosis.

The schizophrenia label was tossed around.

She was in really bad shape and could have very easily been permanently institutionalized. She could have easily died from her condition if a different, brilliant doctor had not taken interest in her case.

The story made my heart break for the countless people with various conditions who are misdiagnosed. It made my heart break for people for whom science has not figured things out yet.

Cahalan’s story brought into focus how truly fragile our bodies are, but also how miraculously resilient.

Her story was told from a reporter’s viewpoint, piecing together details from her month of madness from medical records, family notes, interviews with doctors and friends, etc.

It was a gripping read. There were so many parallels between what she experienced and what autistic people likely experience. For example Cahalan is able to describe the experience of acute sensory bombardment from the inside. She is able to describe the social impairment many with autism face, from the inside.

Read more about the connection between Anti-NMDA receptor encephalitis and autism here. 

As a mother continually searching for answers, this book made me want to never give up.

Spare Me Your Concern

The other day, I started reading a book recommended to me by a friend. It’s about an autism mom’s journey with her son. And before I could get very far, right there in the preface, she spoke of the poor people who are “taken advantage of” by charlatans who would steal all their money offering them various unapproved therapies and “shots” and blah blah blah.

As a seasoned bio-med mom, I can’t tell you how many times I’ve heard this. Often by people I like and respect. They don’t even know they are being offensive. They don’t even know they are talking about me. 

These are folks who tend work within the given system, on things that have been approved and accepted as standard practice by the scientific community.

We personally believe the scientific community is decades behind, and corrupt, so we have forged our own path. Our motto has always been if it isn’t going to hurt, and it has the potential of helping we would give it a try if we could.

What annoys me about people who “feel sorry about those of us being duped” is the superior attitude. The “I know better than you” about your path. The idea that I could be taken advantage of is condescending. I’m not new to town. I have two bachelor’s degrees, one of them in nursing. My husband is a hospital pharmacist(with a chemistry degree before that). We research the hell out of every intervention we try and we often know more than our physicians.

My child was one of the best responders to MB12 shots that our doctor (who people from all over the world brought their children to see) had ever seen. Overnight she went from screaming non-stop to screaming, oh maybe 20% of the time. That little bit right there saved our lives. We think it is cruel to work on behavior only and ignore what may be going on biologically within the child to cause behavior problems. When she felt better, she did better. The shots helped. Many interventions have helped.

Yes, we have spent a fortune on our children over the last decade. They are our priority. Some interventions have not worked, but you know what? It was worth it to try. It was worth it to hope. Many things have worked, and worked quickly to help our kids. Every practitioner had their heart in it. They weren’t hiding behind a curtain greedily rubbing their hands together, waiting to steal our money. (Well, one was but she was a straight up behaviorist with all the credentials, covered by insurance).

Every autism parent I know wonders if there wasn’t something more they could have done to help their child.

I should have worked harder with him when he was two. 

I should have got her involved in social skills groups when she was ten.

I shouldn’t let him sit in front of the TV all weekend (or computer), I should make him be more social.

I should have made him use the facilitated communication device. 

I should have mainstreamed him. 

I shouldn’t have mainstreamed her.

Are parents who “feel sorry” for those of us using bio-med therapies for our kids perhaps suffering a version of this? Is looking at us like we’re some sort of sad sacks that have been duped a way to appease their own what ifs?

Maybe. Maybe not.

Whatever their reasons, I do wish they’d be more careful about expressing broad sweeping pity for parents like me.

We’d all do better to consider the possibility we might be wrong.

 

Hiding Dietary Supplements for Children in Foods

It wasn’t until last year that Riley could swallow capsules and pills. For many years our mornings and evenings were spent grinding supplements and medications with a mortar and pestle, and mixing them in food and hoping our kids wouldn’t give us too much trouble taking them. In the following video, my dear friend Betsy Hicks of Elementals Living (they are linked on my sidebar) demonstrates how to disguise magnesium supplements in chocolate wafers.

Betsy has such an ease about her, giving presentations in person and on camera. She knows her stuff. She’s a whiz at fermented foods. Plus, she’s pretty. For more of her videos on nutrition for healthy living and special needs click here. You can order supplements from Elementals Living too, if you are in the market for them. They send them out quick to you.

100% Huggable

I am feeling moved to write about the Berard Auditory Integration Therapy Riley received when she was little. When I have those little winks to share something, I tend to think there is a reason.

This little baby was debilitated by certain noises. Her life sucked because of it. We all walked on eggshells, waiting for the next auditory assault (a sneeze, a baby crying, etc.) and the horrifying screams that would come as she writhed in pain.

We did Berard training at McLean Speech and Language in the DC area. They know what they are doing. Unfortunately, not every practitioner does. She had two 10-day rounds. It cost us a fortune. Big gains each time, not only in reduced sound sensitivity, but also in balance.

In the photo above, Riley is wearing her then favorite shirt. It had a Care Bear on it and said 100% Huggable. At the time Riley would allow hugs but had never hugged anyone on her own initiative. The third day into the therapy, Riley went in the door of McLean Speech and Language and walked up to Susan Glaub, the therapist that was doing the treatment, and hugged her around the legs. She also began to wake up from sleep without screaming, which was a first.

The woman that brought Berard Auditory Integration Training to the US is Annabel Stehli. Her daughter had autism, and then she didn’t. She credits the auditory training for the change. Back when Riley was tiny and suffering, I found her books so inspiring. One is titled Dancing in the Rain. Another is The Sound of a Miracle.  I didn’t know she had a third book out in 2010, The Sound of Falling Snow. It is about children who have recovered from autism. I plan on getting it.

Maybe your child is suffering from sound sensitivity. Maybe you know someone who needs help? I can’t say it will work for you, but it might. I know at least two adults that did the therapy and felt it helped them. It was worth it for us. It was a big deal and vastly improved the quality of Riley’s life. Sound doesn’t bother her any more.

And there you have it.

BTW….she’s 12 now and still 100% huggable. Always has been, always will be.

Helicopter Mom

It’s not that there is a shortage of things to write about. There are always a million things going on, only a teeny portion of which ends up here on the ole blog. Finding time has been the challenge. Doing the Specific Carb Diet consumes a lot of my life. We are eating really, really well. The kids are on board, Riley especially loves every single bit of anything I offer her to eat. Seth is less enthusiastic, but he is supportive and does not complain. After all, his health is the impetus for doing this, and he wants his PANDAS gone. His tics are a lot better. Not gone, but almost undetectable to anyone who doesn’t know him. Right now it’s a very soft, vocal throat clearing and that’s it. No body movements. He has a hard time getting his words out. It’s not a stutter over individual words, it’s a whole sentence stutter. Especially when he is excited to say something, it takes a long time to get a sentence out of his mouth. But, it was only a few months ago that his ribs and jaw ached from the constant clenching so he’s obviously doing much better.

We stopped his IVIG after a six month trial. He definitely did not get sick as much while he was getting it, but it was just a band-aid, not getting to the bottom of why his immune system is compromised and not actually healing it, which is the real goal here. He had two bad reactions, and it was traumatic for him and the whole IV thing is so invasive. It was worth a try. I have been spending every waking moment researching a new therapy that shows promise though I am hesitant to even mention it here because it is the cause for huge fights between the “bio-med” world and the “ND” world and I have been there, done that, and don’t need all the fury blasted my way.

I don’t fit neatly into either group. For the uninitiated, “Bio-med” people treat their kids medically and try to cure autism and tend to see it as a tragedy. The so called “ND” (neuro-diverse) people believe autism is just a different way of being and we should not attempt to “cure” it.

I believe the autism epidemic and the increase in other related auto-immune disorders are a result of a genetic pre-disposition, and environmental triggers with an overzealous vaccine schedule being a big player(though not the only player, for example our food supply is sick). We’re now up to one in 55 boys in the U.S. DID YOU GET THAT? (And if you are adamant that vaccines have nothing to do with it, I assume you have read very little on the subject, and that what you have read has been spoon fed to you by agencies that are bought and paid for by the pharmaceutical industry. A short list will be added to the end of this post so you can do more homework and be more informed if you choose to be). I believe that when kids with autism act out, it is because they are physically and emotionally hurting. I believe their behavior is trying to tell us something and is a call for help. I believe working on behavior without addressing the underlying reasons for the behavior is cruel. I tried my best to do my little part to educate people on this when Riley was little, and mostly people don’t want to hear it. I tired of bashing my head against the wall and stopped trying to convince anyone of anything. Rattling the cage was getting me nowhere and taking away from my ability to actually be present with my children. I am quite a sensitive person myself, and my constant anger was negatively affecting my health. I feared there would be nothing left of me to care for my kids if I didn’t back off. There is a new website called The Thinking Mom’s Revolution which has taken up the cause if you are interested in reading more from bio-med moms in the trenches. These women are full of heart.

While I believe autism is born of environmental injury, I also believe there is more going on than meets the eye, on a spiritual level. I believe souls are more powerful than we give them credit for. I believe on a soul level we all know what we are getting ourselves into. My daughter is powerful. My daughter has been my greatest gift. She has transformed me in every way. She has made me a better person. She has taught so many people so much in her young life as I write about her and share her with people, and as she moves about the world in her own beautiful way. She is not an accident or a tragedy or a mistake. She is not “broken.”

I also know it might be hard to wax so poetically about her if she were the poop smearing, hair pulling out, bashing head into walls kind of autistic person. If she never said “mama” or “I love you.” If she had no way of telling me where it hurts.

She did send me into panic attacks early on with her near constant screaming…which led us to seek out bio-med therapies to try to help her. You know that parable about the people on the roof in the flood and they keep refusing help because they are waiting for God to save them? They send away boats and helicopters etc., and they wind up drowning and after death ask God, “Why didn’t you help me?” and God’s all…. I sent you the ‘effing boat, and the helicopter,etc.. That’s right, my God can sling it like a sailor(we all make God in our own image). And She’s sent a lot of help which we’ve gratefully accepted. We’ve done a ton of bio-med therapies. Most have been helpful. Some miraculously so (Berard Auditory Training, methyl B12 injections).

When she was at her worst, I used to sit in Riley’s room at night, on a rocker, meditating as she slept, envisioning her in white light, calling all angels, “Help my child. Help her.” I would alternate between beseeching, and visualizing her well. I would talk to her soul-to-soul, “Riley, haven’t we had enough of this yet?”

And I heard, “We are healing together.” I had the distinct feeling she was holding out for me. She was transforming me. She was teaching me unconditional love. She was teaching me that people act out when they hurt. That goes for little bitties with autism. That goes for alcoholic parents. That goes for everyone. She was cracking open my heart.

Hearts are being cracked open all over the place at alarming rates, and it hurts. Transformation can be brutal.

I am not the same as I was before autism hit our family. It has been painful. And it has been a gift. AND, I will continue to do what I can to heal my children, and heal myself.

‘Cause when God sends a helicopter? You don’t have to ask me twice. I’m grabbing my family and hopping on.

Resources for you if you are interested in being more informed:  

*MMR Ruling/Daily Mail

*Evidence of Harm, David Kirby

*Healing the New Childhood Epidemics, Kenneth Bock

*http://www.safeminds.org/government-affairs/foia/simpsonwood.html

*http://www.rescuepost.com/files/prenatal-thimerosal-and-neurotransmitter-imbalances-in-rats.pdf

 

*http://sanevax.org/adverse-events-following-12-and-18-month-vaccinations-a-population-based-self-controlled-case-series-analysis/

* http://www.ncbi.nlm.nih.gov/pubmed/16988466

*What Your Doctor May Not Tell You About Children’s Vaccinations

*Vaccine Epidemic

*http://sanevax.org/

* Hannah Poling Case/CBS News

*http://www.ageofautism.com/science/

 

 

 

She Even Bought Me Breakfast!

What does author, mother of three girls with autism, and autism advocate Kim Stagliano have in common with the guys in the Cleveland cover band Almost Famous? Besides fake Slash’s curly hair?

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Both were on Fox News this morning. It was bizarre. There was the band, singing Save a Horse, Ride a Cowboy (BTW….Seth always thought the lyrics of that one were “Shave a horse, ride a cowboy”) and in the middle of the sexified raunchy song, they stopped immediately and cut to Kim. And then they showed a picture of poop.

Kim looked smashing in her plaid wool suit. Ultra poised and dignified, in stark contrast to the band,(not that there is anything wrong with dressing up like Slash, Elvis, Poison or AC/DC if it brings you joy).

We tweeted during the show and within an hour Kim and I were having breakfast at Tommy’s, a wonderful Cleveland establishment. Always a pleasure to see her and have time to talk. We packed family, books, autism triumphs, tragedies and puzzles, and lots of laughs into our conversation and enjoyed a kid free meal together. Then she was off to be keynote speaker at an autism conference held here today.

Tomorrow she has a book signing at The Learned Owl in Hudson at 1PM. If you are in the area, do attend. She never disappoints.

She’s superwoman.

Go, Kim Go!

A Better Day

No phenols in 24 hours and an extra long soak in epsom salts and Riley is a new person today.

Happy. Playing. So engaged, dancing to Alvin & the Chipmonks in her room.

Not one tear. Not one scream today.    

Trying not to beat myself up for dropping the ball with the phenols. Trying not to cringe imagining certain people reading my last profanity laden post.  Not taking it down though because seriously, that’s what it’s like sometimes. I try to stay positive, but I’m only ever posting a mere fraction of our lives. Sometimes it is just a lot to deal with.

I finally went to bed at 5:30 AM and slept ’til 10:00AM. When I woke, Todd came up to greet me, hugged me. He’d read it,

“You got the poison out, huh?”

Yes. That’s exactly it.  

Spent the afternoon with Seth planning a mother/son overnight for next weekend. He is so excited. We really need some one on one. We’re going to an indoor water park. I wanted camping, but he got to pick. He promises me, “We’ll camp next time.”

Thanks so much for your kind comments and loving thoughts. Have a good weekend everyone.

xo

It Might Be the Juice

1:48 AM and I’m up because I need a fucking cup of tea. It’s a crutch in times of stress. Not the tea, the swearing.

Wiped out, I went to bed at 10:00PM and tried to sleep. It didn’t take, because my baby girl is having a really hard go of it and I’m losing faith. My heart aches.

Todd worked late, came in to bed I don’t know around 12:30? 1:00?

He’s the only one who truly understands and I want to turn to him but I equally don’t want to, a million reasons why. A few sobs on his chest and I push him away.  

“I’m so sorry,” he says.

“If we really create our own reality, there is something seriously wrong with me,” I say.

He can’t help but laugh. I don’t.  

I tell him my darkest thoughts and he does not judge. 

Visions of her future that do not look good at all. Twisted wishes of her dying before us, because the idea of my precious girl winding up living in a psychiatric ward or on the streets is unbearable to me.

We go over the last couple of weeks. What’s different? Why is she so out of her mind?

Another horrid day at clay class. They are making Dr. Seuss houses and she had poured over her books all week, planning it in her head. She wanted to be there. She wanted to do it. No one is forcing Riley to go to fucking clay class. She flipped out attempting to roll out her first slab. She isn’t coordinated enough to do it easily on her own, but she refuses help. She didn’t want to look like a baby. Then she had a meltdown. Same story, different day. 

It’s a small homeschool class, just five other kids, sweet, sweet kids, who are kind and understanding but the blood curdling screaming was starting to upset them. They were cringing. It wouldn’t stop. I took her in the hall, and she couldn’t stop. I tried to take her down the hall, away from the class and she fought me. 

When she was tiny you could pick her up and remove her. Now, she is up to my chin. I resorted to dragging her by the arm, kicking and screaming down the hall, and Jingle did not like it. She BARKED furiously at me. She thought I was hurting Riley.    

In a brilliant grasp of sarcasm mid-meltdown Riley screamed,

“WHY DON’T YOU JUST PUT A DIAPER ON ME! PUT ME IN MY CRIB! I’M NOTHING BUT A BIG BABY! I’M THE ONLY ONE WHO NEEDS HELP!”

I am so sick of having to be the room parent. The coach. The chaperon. Always there. Talking her off the ledge. She doesn’t want to need me and frankly, I could fucking do without it too Riley. 

Could it be the phenols? Every couple of years we get kicked in the ass with phenols. How is it I forget?

Phenols are those wonderfully healthy anti-oxidant good for your heart things found in lots of fruits, tomato sauce, red wine, etc. She does not tolerate them well if taken in high doses over time.

She’s been chugging apple juice.

The giant two gallon jug of apple juice from Whole Foods we bought a couple of weeks ago was so good we bought another the next week. To help keep her hydrated, you know, after the recent severe ’bout of constipation

Could it be, like Dr. Seuss’s The Cat in the Hat Comes Back, we’ve one giant mess creating another, bigger one?   

I wait ’til his first snores, then slink off downstairs for my tea.

While it steeps, I pour the fucking apple juice down the drain.

Elementals Living

Recently, I spent an evening in Peurto Rico with two love birds.

Betsy is mom to three children, one of whom is a teenage boy with autism. Her husband John is a physician who uses holistic biomedical therapies to help kids on the spectrum obtain optimum health. They live in Wisconsin. We were celebrating Betsy’s birthday, the day the picture above was taken.

Dr. John spends time early in the morning visualizing each patient he will be seeing, in their full perfection. Betsy oversees the day-to-day operations of their practice, Elementals Living and organizes national conferences and retreats on wellness-related issues. She’s also just finished a book on solutions for picky eating, and has a resume a mile long with one impressive accomplishment after the other! I’ll be writing more about her picky eating book here soon.

It is wonderful to meet another autism mom, who understands and seriously applies Law of Attraction principles to her life. I have so enjoyed getting to know her better over the last several months and to finally meet her in person on the cruise.

If you are looking for a bio-med doc in the Wisconsin area, John might be your guy. 

They also run a store out of their practice where you can buy all kinds of supplements, holistic remedies, books, special foods for special diets, etc.  

Do check it out!

P.S. I’ve put the store on my blog roll for future reference.