Thursday, April 22, 2010

Special mothers and how they are chosen

I just love my Facebook Autism "sisters". Many of you I only know from your profile, your postings and our common thread of raising a child with special needs. You are there for me, give me strength and understand me. You get my "bad" days and can relate to what I face on a daily basis. You also understand the immense joy I get from even the smallest gain and how just one new word, new food tried or new emotion expressed can bring me to tears of pride and love for my son. And you share SO much new information. I have spent years pouring over books, online resources and talking to other moms to learn all I can. With the advent of Facebook, my ability to research has exploded exponentially and I thank you all for sharing. Here is a post from this morning, thanks to Anne Hodapp for passing this beauty on, I HAD to repost. So here's to mothers of special needs kiddos, I am sure you will relate as you read it.

The Special Mother
by Erma Bombeck

Most women becaome mothers by accident, some by choice, a
few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of
handicapped children. Did you ever wonder how mothers of
handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his
instuments for propagation with great care and deliberation. As
He observes, He instructs His angels to make notes in a giant

"Armstrong, Beth; son. Patron saint...give her Gerard. He's
used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finially He passes a name to an angel and smiles, "Give her a
handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a
mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in
a sea of self-pity and despair. Once the shock and resentment
wears off, she'll handle it."

"I watched her today. She has that feeling of self and
independence that is so rare and so necessary in a mother. You
see, the child I'm going to give her has his own world. She has
to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles,
"No matter, I can fix that. This one is perfect - she has just
enough selfishness." The angel gasps - "selfishness? is that a

God nods. "If she can't seperate herself from the child
occasionally, she'll never survive. Yes, here is a woman whom
I will bless with a child less perfect. She doesn't realize it yet,
but she is to be envied. She will never take for granted a
'spoken word'". She will never consider a 'step' ordinary. When
her child says 'Momma' for the first time, she will be present at
a miricle, and will know it!"

"I will permit her to see clearly the things I see...ignorance,
cruelty, prejudice....and allow her to rise above them. She will
never be alone. I will be at her side every minute of every day
of her life, because she is doing My work as surely as if she is
here by My side".

And what about her Patron saint? asked the angel, his pen
poised in mid-air.
God smiles, "A mirror will surfice."

Friday, April 16, 2010

TACA Real Help Now Conference May 1, 2010

If you are in the area, you do not want to miss this conference. I was at the one last fall and it was amazing. This one has even more speakers and you will never go wrong with the TACA parents! They are informed and are awesome resources! I will be at the conference on behalf of New Beginnings! So sign up today and don't forget to stop by the New Beginnings booth!


TACA Real Help Now Conference for Autism in Orange County, CA
Listen, Learn & Take Action for Your Child at the Real Help Now Conference.
May 1, 2010

Martha Herbert, MD
Tim Buie, MD
Anju Usman, MD
Jerry Kartzinel, MD

Register HERE Now- Online Registration Closes on April 29!

Searching for and finding the right information to help your child can be overwhelming for families affected by autism. The Real Help Now Conference was developed to bring the latest information on medical, dietary and legal issues for children with autism, and most importantly, help parents through the often daunting process of determining how to organize and prioritize their intervention efforts.

The Real Help Now Conference will provide two important tools for translating the information gained from the speakers into action for your child:

1. Real Help Now Workbook with step-by-step processes to help you to determine appropriate interventions and timelines for taking action in the realms of medical and dietary intervention, education, finances and home life. (Sorry, this Workbook is only available at the conference.)

2. TACA parent mentors who have been there, done that. Our experienced mentors will be on hand to to work with you one-on-one to answer your questions and share what has worked for their child.

Whether you are just starting out on the autism journey or are an experienced parent, you will learn from nationally known experts about how you can help your child at the Real Help Now Conference.

TACA strives to ensure that the focus of our conference is education and support, and to provide a safe, supportive environment for our attendees. TACA reserves the right to refuse admittance to any individual.

Registration includes light breakfast AND lunch.

For more conference information please go to

Tuesday, April 13, 2010

Autism RECOVERY Awareness

It dawned on me yesterday after a phone call with the mother of one of my son's classmates. Maybe my best contribution to Autism Awareness month comes in the form of recovery information and hope to others. That is what I try and accomplish all year long. But, as my previous posts have stated, I worry that the message of Autism Awareness is being missed by those it really needs to target. But yet again, I had another parent who sees my child in the classroom environment on a weekly basis and who did not realize my son has a diagnosis of Autism. She asked me about the chart that gets filled out at the end of the day with him and marked how supportive the children are about it. When he earns all of his stickers for doing his tasks you always hear "Great job" and "Way to go" from the other kids. I want to cry when I hear it. There is so much love and compassion in that class, in that school. The children are always encouraged to support one another and think of the whole, not the individual. This mom said that she saw the sticker on my car, a National Autism Association Autism ribbon magnet. The fact that we have gotten to the point where the only way someone really knows we have been affected by Autism is by the sticker on my car is a pretty darn cool thing! I got to explain yet again how different life was just 3 short years ago when our wonderful school we attend was NOT an option. How he was non verbal, would not play, would not make eye contact. I did not hear the "I love yous" and the "Thanks mom, you're the best" like I do now. There was screaming and overstimulation in its place. Birthday parties were avoided and excuses made, knowing those environments were just too much. We still have our "days" and yet even neurotypical children do too. I know when my son is "on the verge" and we can divert those meltdowns much easier now. This past weekend was filled with school carnivals and trips to the zoo. We could never have done both in a single weekend, or stayed as long at either places. Huge steps that I consider major victories for my son. Maybe this is the better message. Yes Autism is rising but no it is not a life sentence. There ARE things you can do to change the course of Autism. I do not say every child will have the same success as my son. Some kids will respond better, some not as well. But isn't it worth the try? So I challenge those out there that Autism is not a hopeless diagnosis. I say that the journey takes you into a world you never knew existed. I have learned about healthy eating, supplements that support and nourish the body and eliminating the daily toxins that can negatively impact our health. Changing those things CAN change the course of Autism and I think that is what I really want people to know. Sometimes people don't wake up until they are immersed in our world. And with rates now 1 in 91, more people will be joining this club. So hopefully as they do, they realize they can make changes. I certainly hope that people wake up earlier and we see a decline in Autism, but until that happens, at least maybe people can read our story and find hope in recovery.

Saturday, April 10, 2010

Dr. Andrew Wakefield’s Interview by Dr. Mercola on His MMR Study

Here is a wonderful opportunity to hear Dr. Wakefield speak about his side of the MMR controversy and the Lancet retraction. He has repeatedly offered to debate this subject even with Paul Offit (I heard this challenge myself at the 2008 DAN! conference). Hmmm, wonder why Paul Offit will not take him up on that challenge so we can hear both sides???? There are 10 videos in total but well worth the time to watch and hear both of these wonderful physicians.

Dr. Andrew Wakefield’s Interview on His MMR Study

Monday, April 5, 2010

What is Autism Awareness??

April is Autism Awareness month but for who? Is it really for others out there? I always wonder that. Those affected by Autism are aware, boy are we aware. And really I wonder if I would have listened when I was pregnant, when maybe I could have made changes that would have changed our trajectory? Would I have listened as a new parent? Now I look back and things are SO clear. A fussy baby who had a really hard time nursing (low tone) and who was very reactive to formula (dairy intolerance). I see the sensory issues that made trips to the grocery store excruciating (for him and me). I felt like a failure as a parent, the most important job I could imagine. I recognized how he "changed" after each immunization and my pediatrician replied that he had never heard that before. The child who had started to sleep a full night immediately STOPPED sleeping on the night of his 4 months shots. It would take months for the effects of immunizations to fade and then we were due for the next ones. I remember how my son's eyes would go to my hairline rather than my eyes at 3 months of age. What could I say to a new parent to make them "aware"? I wonder what Autism Awareness is really about? How many people are really listening that aren't already impacted by Autism? I see our food supply in sad, sad shape. I see us pushing even more immunizations than we ever had (did you hear about the new Yeast infection vaccine, I AM SERIOUS HERE), I see more toxins in our world than EVER before. Everything is antibacterial, everything is made with bleach or chemicals. There are no real ingredients everywhere. Most people subsist off fast food or pre-packaged meals. Those in the Autism community make old fashioned bone broth, fermented foods, give probiotics nightly and supplements like cod liver oil. We have gone "back to basics" to heal our children. Many are finding relief from their physical ailments and ironically enough, their Autism symptoms are also fading. It never fails, when I tell M's story I usually get one person who says "so he really didn't have Autism then if he doesn't have it now". I have to chuckle inside. If I could give you a snapshot of my life 3 years ago......the lengths we went to to keep our son safe and us sane. No sleep, sensory seeking, food craving (mainly wheat and dairy *ding, ding, ding*), meltdowns (from food intolerances, yeast and bacterial imbalances), mouthing EVERYTHING, not playing with kids, no eye contact, no language, etc. Many cannot conceive of it watching him today, playing with kids, talking to excess, making friends, telling me he loves me. At the rate Autism is growing, more families will go down the same path. I educate many on this path to what biomed is from a family's perspective. But what if real awareness is getting to prospective moms and dads? I am sad to say I would have probably said "oh that won't happen to MY child". The problem is, no one thinks it will happen to their child and yet Autism is now 1 in 91. So who's child will it be next?

Sunday, April 4, 2010

Autism 24/7 by Cathy Jameson

I saw this Age of Autism post on Facebook and as I read it aloud to my husband, we both wondered if this was my life I had written about. So many similarities but I guess that is what we find when we did deeper into the Autism community. I also blog about this journey, speak to other parents about our journey, what has worked, what a biomed approach is from a parents perspective and try and help as many people as I can. That means blogging, sending and receiving emails and sometimes too many "please go out and play so I can finish this" statements. I too have neurotypical children that struggle with so much attention and focus on Autism, and the guilt that goes along with it. I thought Cathy's piece below was very well written. As we move through April which is Autism Awareness Month, I too wish the people making decisions on our state and federal budgets would truly be more aware. I have a child with Autism, I am aware. But so many are not. They don't know what helps these kids and what they have said "works" actually DOESN'T work for my child. We never did ABA, we did Floortime. I don't do medications to modify behaviors. Come on people, THERE ARE OTHER OPTIONS. And there is no judgement here, people do the best they can at any given time. But, those options are not for me or my son. But, what we have tried, Methyl B-12, Respen-A, LDN, other supplements, along with traditional therapies have been VERY successful in bringing him to a wonderful place of healing and progress, we are blessed and thankful EVERYDAY for that. So here is Cathy's piece, beautifully written, grab your tissues and get ready.

Autism Awareness Month: From A 24/7 Autism Mom
By Cathy Jameson

I was in the kitchen one afternoon searching through my emails when my oldest daughter walked in. She had just been outside on a gloriously sunny day with instructions to play until I come and get you. ‘Get back out there,’ I said while keeping my eyes locked on the internet. I needed the outside playtime to last hoping it would buy me some time to veg out, get some computer “work” done and to have a moment of silence from our constantly-busy schedule. ‘I have to use the bathroom,’ Fiona said while hurrying away.

Shaking my head at myself and the ever-growing list of things I needed to get done, I craned my neck and went back to searching for whatever it was I was looking for. I wanted to reply to an email before I was pulled in another direction. It’s nearly impossible for me to complete a full task in one sitting but I was determined to get this one done. Scratch that chance.

Fiona walked back by the kitchen as I had my hands hovering ready to type. “Mom,” she started. Ugh. Can’t I have any peace and quiet around here?! “Yes,” I answered as sweetly as I could. “Mom, when are you going to be done with all this autism stuff?”

Stabbed. Stabbed with guilt. My heart broken and my head hanging even lower, I raised it to look Fiona square in the eye and asked, “Why?” Fiona had her hand on the doorknob already and was about to jet back into the backyard. I didn’t want to be gruff or give her a long-winded, over her head answer so I asked her a question back. “Do you want me to stop reading about it?” Fiona looked at me with wide eyes, “NO!” she said emphatically. I went on, “Do you want me to stop writing about it?” “No, Mom. I just wanted to know when it’s going to be all done.” Fiona is eight. She’s only known her brother Ronan to be who he is with all his behaviors. She lives through the hours of therapy, the miles of driving, the pages of books, magazine and websites I read. She is very aware of the many things we do to make Ronan’s life easier so all of our lives are manageable. Fiona needed a quick, pat you on the back answer that promised only good things.

I took a breath and replied, “Oh, I guess I’ll be done when things get better for us, for Ronan and for other kids like him. It stinks that I have to do all this and I’m sorry it takes so much time. “Okay,” Fiona said. “Can you come outside? You said you would.” More stabbing pain in my heart. “I’ll be right there.”

This month is autism awareness month. I haven’t looked it up yet but I wonder who came up with a whole month to celebrate being aware of autism. Why are we celebrating being aware? Why can’t the whole month be dedicated to promoting the therapies that provide scientifically proven strategies to help those on the spectrum? Why can’t at least one day be dedicated to offering free or reduced rates for therapy trials? Why can’t one week be set aside for politicians who voted against insurance coverage for effective but unbelievably expensive therapies that work but are so financially out of reach to come live with a family with multiple children on the spectrum? Their vote could save a child, their lifetime, their parents’ marriage.

Wait! Even better…what if for one full week we had a program that would help the world understand how aware some of us already are? What if we opened our homes to a complete stranger, better yet, the politician who had the chance to open more doors for families but didn’t, or a lobbyist who stuffed big pharma into the pockets of said politicians, or a clueless celebrity who fronts for a group that promotes harmful-to-kids science, or a high-power news commentator who contemptuously condemns us parents? Let’s throw in that pesky neighbor too who thinks the only cure for our child is better discipline. That person would be morphed into a child or young adult on the spectrum for a week. Each morphed person would exemplify one of the negative associations of autism, the ones that are all but forgotten on the awareness campaign. The morphed person would experience a 24-hour glimpse of the 365-day “awareness” we already live.

Here’s a line up of what they might expect:

Monday is Poop Smearing Day. Everyone don your rubber gloves, your surgical jumpsuits and your clothes pins to hold your nose! Come to the toxic dump that is the child’s bedroom and witness the rainbow of stench that can be pooped out of a seven-year olds’ bum. Seven is way too old to be in diapers but add sensory issues, medical maladies and lack of awareness when a stinky poo comes out and you’ve got the makings of a Crapisode. Don’t forget to air out the place when you leave for the day.

Tuesday is Non-Verbal Try to Communicate Day. You have a voice but only vowel sounds are emitted. The person you are talking to can hear you but has no clue what you are saying since you sound like Charlie Brown’s teacher. See if you can order a hamburger and a shake. You will surely get the deer in the headlights look all day long. Your behaviors, negative ones, will increase as the day goes which will add to your frustration and your caretakers’ stress level. Good luck with making friends.

Wednesday is Over-Stimulation Day. Mom’s got to get some shopping done. Problem is, she can’t find someone to watch you. Your issues are too intense for the neighborhood teenage babysitter and the government agency that used to help has no more money to offer respite. You get to tagalong to the local vision-exploding, ear-piercing, can’t breathe without gasping for air sensory overload experience. Mom settles for more catalog shopping while hoisting you over her shoulder and scurrying out of the mall before she’s asked to leave because you freaked out in the tiny changing room with the flickering fluorescent lights. Mom looks like a dumpy dump in her too-large catalog shirts that she can barely afford but at least you’re safe at home with her from now on.

Thursday is Total Tantrum Day. You want to watch ‘Elmo’s World’ again but the DVD is scratched and your movie is worthless. You might as well use it as a coaster. Dad can’t find a replacement movie so you’re left to deal with the disappointment. The only way you know how to deal is to throw a tantrum. Mom is crying in the corner while Dad looks on eBay for the special edition DVD. It’s going to cost just as much as one speech therapy session since it’s the only one left on the planet and it’s a boxed edition signed by every character on Sesame Street. Dad enters his credit card number hoping he gets a raise at the end of the year to pay off the debt. You still tantrum even though the movie is purchased. It won’t be delivered until next week. Mom quietly puts her ear plugs in and wipes a constant flow of tears from her eyes.

Friday is Find Me Day. You ran out of the house when no one was looking. Mom was in the shower when you slipped away. The house was too quiet as she got her robe on—she knew you were gone and ran out of the house with the cell phone, 9-1-1 already dialed. Thankfully you were only 2 streets away in your own neighborhood. A retired man who was walking his dog spotted you in your dirty diaper and waited with you until the police arrived. Mom grabs you in a full hug and can’t speak. She sobs heavily while you try to push her away. It’s too hot for you to be hugged, that’s why you were only wearing your diaper when you left.

Saturday is So You Think You Can Swim Day. I won’t even go into details about the events of that day since it sends shivers across the autism community parents to think about the ‘what ifs’ when there is a body of water near their child. Half-emerged, fully clothed bodies are not a pretty picture.

Sunday is Sit and Wiggle Day. You thought it was a day of rest but your family once again attempts to make it to Sunday services. Dad manhandles you to sit still while kids a few pews back stare at you wondering what the heck is wrong with you. Mom keeps her eyes on the altar wishing you could just for once, sit at church without causing a scene. The pastor keeps preaching but can’t help but stare at you every few outbursts. He silently prays for you and your dedicated parents.

I would imagine more “awareness” would help those perfect strangers if they could live for just a few moments in our children’s world. It may actually convince them to do something. These people need to learn how and where the autism community lives so they can offer real help that works. We’re not asking for everything to be perfect. We’re not asking for our children to be the center of their attention, their only priority. We’re asking for action. We’re asking for help. We’re asking for hope. We’re asking for it now.

Back in my own house, Fiona ran to the swing set to play. I had a brief moment of letting everything go. I almost quit advocating. I almost retired my keyboard from all the writing I do. I almost took off my ‘Special Needs Mom’ hat to put on a ‘Just a Mommy’ hat. In the blink of an eye I could have ended a calling in this community. Fiona only wanted an answer and happily, was satisfied with the one I offered. She said I should keep writing because she loves to hear that my stories are being read by other people.

That afternoon, I closed the laptop. I went outside to enjoy my children, watching them crawl all over the playground my husband built. It has slides, swings, monkey bars. It has the potential for a whole lot of fun. I shouldn’t just peek out the window at my children while they play but most days I do. I stay too long on the computer or call other warrior parents. I’m afraid of where my son’s future may be if I don’t do something now which means a lot of networking and asking questions. If I don’t learn now how to navigate an antiquated system not ready to handle the large population of children like Ronan, how will he survive as an adult?

But, before I let my own four walls cave in, I have to also remember that I have typical children that need their fun-loving, still-swinging, barely-fitting down the slide while galloping over to the trampoline to jump till my thighs burn Mommy.

I got out that day to be with my children. There’s enough autism action going on over here in my home. Can you do the same for someone in your community? Do you have time to advocate or volunteer with a local group that supports families in need? Do you have a chance to donate services or assistance to make a child more successful now? If you can imagine that cleaning up poop parties are bad when made by a seven-year old, add ten years to that with an almost-grown man and his poop. Get out and adopt a family that you can help now. Autism awareness is so old hat. Look around your community and learn what local families need. You will not be disappointed in how far your acts of kindness and commitment will go.


Cathy Jameson is a Contributing Editor to Age of Autism. She also runs the AoA FaceBook fanpage.

Thursday, April 1, 2010

April is Autism Awareness Month

So April is Autism Awareness Month. It is always Autism Awareness Month in our house. And this reality will be more and more common for other families too, I am sad to say. Autism is the leading childhood disorder and the numbers continue to rise. The frustrating thing for many is that there are things you can do to dramatically help your child both medically and behaviorally. We support a biomedical approach 100% because it has worked for our child. The notion of putting healthy foods without fillers, preservatives, dyes, trans fats, high fructose corn syrup, soy, and allergenic foods was not such a stretch for us to understand and agree to. It made sense once I learned more about true health and wellness. Food is our foundation, period. Then supplements can fill in the gaps and provide additional support. Understanding the underlying medical issues my son faces really helped in his recovery. Addressing yeast overgrowth, bacterial overgrowth, auto-immunity and inflammation all helped him "recover" and be able to communicate more effectively and reduced many of his Autistic symptoms. Treatments like Methyl B-12 injections, Low Dose Naltrexone (LDN) and Respen-A have really been "wow" therapies for our son. As a result of what we have learned, our whole family is healthier and for that I am grateful. Autism is a journey, not just for the child affected but for the whole family. Each family approaches their response to Autism differently and I respect that. Here are some of the things we've learned along the way:

* Once you know one child with Autism, you know one child with Autism. Each are so different, in their challenges, strengths and weaknesses. Please do not lump them all together.
* It can bring you to places emotionally you never though possible, for the better and worse.
* It requires a lot of passion and a lot of humor to deal with some of the stuff you will inevitably deal with.
* I am a better person, parent and spouse because of it, or in spite of it.
* Always expect the unexpected and BE PREPARED. Snacks, changes of clothes, a weighted blanket and a brush for the Wilbarger Brushing Protocol were staples in our car for a looooong time.
* Don't question yourself when it comes to your child. Parent's intuition is real and many times, you ARE the only person who knows the ins and outs of your child. Believe in yourself.
* Don't let ANYONE push you around when it comes to your child. Don't take mediocre doctors, therapists or teachers. Your child deserves to be treated with respect and caring, period.
* Behaviors aren't just behavioral. Sometimes medical issues and sensory issues can be the root cause of many behavioral issues. Address those things and you can resolve the behaviors.
* Trust your child. Even nonverbal children will give you signs of a "bad fit" for therapists, etc. It can be scary trusting your child to a host of people who are supposed to be "helping". Look for cues and act on instincts. Our children are more susceptible to abuse because many cannot communicate well.
* Do what works for your family, period. Try things and see if your child responds.
* Never stop learning, questioning, fighting, your child is worth it!

So welcome April, welcome another month to make more people aware of Autism and my son's incredible journey with and recovery from Autism.