Monday, May 3, 2010
TACA real help now conference
What another great TACA event! This past weeked TACA held their Real Help Now conference in Foothill Ranch, Ca. It was very well attended and had phenomenal speakers. My husband was able to come with me which was so cool. We sat in on about 20 minutes of Dr. Kartzinel's talk and that was about it. My throat was so sore from talking and my feet beat from standing. I always love talking to other parents about Autism and their journey. Many of the parents were just starting biomed and so we got to share our story and our son's success with biomed. There were biomed "veterens" there too and I always come back with new knowledge from speaking with them. I wish I could have heard Dr. Usman's talk on biofilms. She stopped by our booth so I spoke with her about several things, including homeopathy which she uses in her practice. And as always it was SO great to see the TACA members, they are always so welcoming, so supportive and so awesome!! So, if you haven't been to a TACA event, check your local area for a group. Or if you live in Southern California, you must hook up with the chapters there. TACA's next even is their family picnic in June, I hear that is a blast.
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
ledger.
"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
virtue?"
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."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
ledger.
"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
virtue?"
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.
ORANGE COUNTY, CA
May 1, 2010
Featuring:
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 www.realhelpnowconference.com
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
TACA Real Help Now Conference for Autism in Orange County, CA
Listen, Learn & Take Action for Your Child at the Real Help Now Conference.
ORANGE COUNTY, CA
May 1, 2010
Featuring:
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 www.realhelpnowconference.com
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
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
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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!
* RECOVERY IS POSSIBLE, MY SON IS PROOF.
So welcome April, welcome another month to make more people aware of Autism and my son's incredible journey with and recovery from Autism.
* 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!
* RECOVERY IS POSSIBLE, MY SON IS PROOF.
So welcome April, welcome another month to make more people aware of Autism and my son's incredible journey with and recovery from Autism.
Wednesday, March 31, 2010
All natural Easter egg dying
This information courtesy of Better Homes and Gardens (BHG.com).
All-Natural Easter Egg Dye Recipes
Use these all-natural dye recipes made from household ingredients to create Easter eggs in beautifully subdued shades. Leave eggs soaking in the dye in the refrigerator overnight for the richest colors.
Pink
1 cup pickled beet juice and 1 tablespoon vinegar
Lavender
1 cup grape juice and 1 tablespoon vinegar
Brown
1 cup strong coffee and 1 tablespoon vinegar
Blue
Cut 1/4 head of red cabbage into chunks. Add cabbage to 4 cups boiling water. Stir in 2 tablespoons vinegar. Let cool to room temperature. Remove cabbage with a slotted spoon.
Bluish-Gray
Mix 1 cup frozen blueberries with 1 cup water. Bring to room temperature. Remove blueberries.
Dark Pink
Cut 1 medium beet into chunks. Add beet to 4 cups boiling water. Stir in 2 tablespoons vinegar. Let cool to room temperature. Remove beets.
Yellow
Remove the peel from 1 orange. Add peel to 4 cups boiling water. Stir in 2 tablespoons vinegar. Let cool to room temperature. Remove orange peel.
All-Natural Easter Egg Dye Recipes
Use these all-natural dye recipes made from household ingredients to create Easter eggs in beautifully subdued shades. Leave eggs soaking in the dye in the refrigerator overnight for the richest colors.
Pink
1 cup pickled beet juice and 1 tablespoon vinegar
Lavender
1 cup grape juice and 1 tablespoon vinegar
Brown
1 cup strong coffee and 1 tablespoon vinegar
Blue
Cut 1/4 head of red cabbage into chunks. Add cabbage to 4 cups boiling water. Stir in 2 tablespoons vinegar. Let cool to room temperature. Remove cabbage with a slotted spoon.
Bluish-Gray
Mix 1 cup frozen blueberries with 1 cup water. Bring to room temperature. Remove blueberries.
Dark Pink
Cut 1 medium beet into chunks. Add beet to 4 cups boiling water. Stir in 2 tablespoons vinegar. Let cool to room temperature. Remove beets.
Yellow
Remove the peel from 1 orange. Add peel to 4 cups boiling water. Stir in 2 tablespoons vinegar. Let cool to room temperature. Remove orange peel.
Thursday, March 18, 2010
Vegetable based icing colors and cookie/cake decorations!
Holey sweetness batman! Anyone who knows me knows that I love, love to bake and decorate cakes. I have tried over the years to use the all natural colorants found at some of the health food stores with disasterous results (think spiderman cake in a lovely pink shade rather than red). And I admit that I gave up, going back to the commercial Wilton colors and regular colored sugar sprinkles. But, the Age of Autism posted this link and I have to tell you, I am SO buying this stuff! Some of the items I have looked at do have soy which can be a concern for some, so read the ingredients. But, no LAKE colorants with aluminum, no high fructose corn syrup, hooray! Yes, it is sugar but we all need a cupcake once in a while and why should our kids have to do without the sprinkles and decorations that make them so much fun? So, for others out there wanting another option, check out their website.
Wednesday, March 17, 2010
8 facts about Autism that the media is not covering, by Holly Robinson Peete
It took me a few days of briefly scanning Facebook and seeing this on many people's pages to actually sit down and read it. So now that I have read it, what can I say? Can I get an amen? I know all about the financial stress. I also know all about the strain on siblings, and add in a step-sibling factor and it makes the situation even more tense at times. The neurotypical siblings do feel that more attention is paid (because often times the child with Autism's SAFETY is in jeopardy and so logically that HAS to happen). And I have also had the unpleasant experience of hustling the whole family out of a place, usually the zoo for whatever reason, carrying a screaming child when a meltdown ensues. Then we started tag-teaming events and I could go to the car with M while my husband stayed with the girls. Sigh.... But what can I say? I am sure families with a child with cancer feel the pull in the same way. You would not compromise their treatment and I know that we would rally around the girls if there was an issue that needed to be addressed. My motto is we give the kids what they each NEED. Families aren't about being equal but rather FAIR and at any given time the kids need something different from each of us than their siblings do. The key is to recognize what they need, when they need it. So, we also work very hard at spending alone time with the girls to help with this. And as M has gotten older and his recovery has been happening, it is not such an issue. We still struggle with the normal sibling rivalries and jealousies that will always come from realizing you are not the center of the world and actually have to share with another human being, be that toys or parent's attention. Those are never easy lessons, regardless of Autism. And the issue of strain on a marriage, yes we have felt that too. I am so blessed to have my husband by my side. We are a great team and yet we have still felt this strain over the years. I think at this point we have dealt with many of the emotions involved and have come out the other side much stronger. I know that is not always the case. The negative emotions involved can get placed on the spouse, I know because I did that at first. No bueno. But I would not want anyone else by my side and our marriage is stronger now because of it, or in spite of it, whichever you prefer. But that takes focus and work too. A while back I felt that my whole life was Autism and that really, I could not have a conversation where it did not come up. I had to work at balance and not be so consumed with Autism. But, I was in warrior mom mode. But watching, and meeting, Adam's mom from Autism, The Musical really hit home. That was me, thwarted career woman, gave up career to focus on staying home and raising my baby, get Autism diagnosis, put that Type A energy towards helping child, ignore the rest of the world. It was like looking in a mirror. I can also relate to this article in the way that Holly Robinson Peete and Jenny McCarthy bonded. Every conference I go to, I inevitably meet another mom and have a heartfelt, deep conversation about this journey, to the level that I wouldn't even share with my best friends. Mainly because they wouldn't truly understand it, they would try but really some of this journey you have to experience to fully understand. And talking to another parent can be so comforting, it lets you know you are not alone, and boy can this diagnosis be isolating at first. This is complicated issue, so many ways it can impact a family, not even getting into the extended family and how they play into this. We all do the best we can, period. I loved her section on guilt too. What can I say on that? Not enough money to do what "could" help him more, not enough time or energy to do x, y, z. How we handled situations before we even knew what Autism was and that our child had it, I could go on and on. Not sure I have fully resolved that issue so we will just leave it at that. So here is the article, as copied from the Huffington Post. I hope you enjoy it as much as I did.
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Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy's phone call shortly after her son's diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for 7 years already.
We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I'd be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she'd help spread autism awareness like nobody else could and the media would pay attention. Since that phone call, she has created a very successful platform with her powerful opinions, blogs and books on vaccine safety, diet and recovering her son among other things. It has been a courageous, controversial and fearless ride. Miss Jenny is not scared to get in the ring with the big boys!
Though I share many of same concerns, I feel compelled to shed light on the fact that families affected by autism are struggling on multiple levels. We need a shift of focus to share the spotlight with other often overshadowed issues that profoundly impact families daily.
To that end, below I highlight 8 things about autism the media is not covering enough. They are not hot-button, provocative or headline-grabbing, but with 1 in 110 children affected by autism (and rising), these issues desperately need more attention:
1. Autism Is Unaffordable
I'd love to see more media focus on how ridiculously expensive it is to treat a child with autism. You can counsel folks all day long to get early intervention, but who in the world can pay for it? Therapies can average over $100-$150 an hour - many require up to 14 or more hours a week. With insurance companies still not covering the vast amount of therapies needed, too many families are forced to pay out of pocket for much of these expenses. A 2006 Harvard study puts the average cost of services for an individual with autism is $3.2 million over his/her lifetime! A total of $35 billion a year is spent on services for individuals with autism in the U.S. The numbers have climbed since then...
Bottom line is treatment is completely and ridiculously unaffordable and can financially bring a family to its knees... even in good times.
Families live on pins and needles with hopes that they're doing the right thing. But the fact is for too many, the things we want to do are simply out of reach financially. I can think of no worse scenario than not being able to afford to help your child.
2. Parental Guilt
So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical and other treatments. But the fact is so many likely will never be "recovered" and nothing, I mean nothing, makes a parent feel more guilty than thinking you could've "fixed" your kid but... well you didn't or couldn't afford to. If you have a child who is non-verbal and severely impacted by autism, for example, and all you want to hear is him speak or just use the word "no" appropriately, it can be maddening to hear that someone else did x, y or z and now their kid is no longer on the spectrum at all. So many parents have shared with me how badly they feel about this. And although I personally have broken my butt for my son and though he has overcome many challenges we were told he would not, he still has autism. What could I have done better? Oh the guilt! Don't get me wrong, I am always elated for any child's success in this journey, but it can be very hard to swallow at times-making you feel like a failure. Just one mom's opinion, keeping it real...
Alas, accepting my son's progress or lack thereof is the key to moving forward with my head up.
3. Puberty Plus Autism Can Be a Volatile Mix
Our son is almost 13 and has entered puberty. Oftentimes kids on the spectrum can start puberty prematurely, and it can be an extremely jarring experience.
A dear friend of mine and autism "Superdaddy" explains puberty's effect on autism like this: "[Puberty is] an 'oy vey' for a normal child but it can send hormones racing in a child with autism that they don't know how to deal with."
The hormonal surge can cause violent and unpredictable behavior. Stress and depression can develop accompanied by social ostracism.
Our son has suddenly regressed recently after making so much progress, bringing us a new set of challenges we hadn't anticipated. We always always remain extremely hopeful and have been blessed beyond our wildest dreams with what he has been able to overcome to this point. But puberty has been a challenge more parents need to be prepared for. It can be a completely different dynamic at this age. Let's get that out there, please.
4. Minority Children are Diagnosed with Autism Years Later Than Other Children
There are a lot of mysteries about autism. But one thing we know, according to a study covered by CNN:
if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior.
That's why the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention. One reason these children are diagnosed later is that there are more barriers for socio-economically challenged families to access information. Certain developmental milestones are ignored, unknown or overlooked. Another part of the reason is that there are some cultural and social stigmas about mental health and a fear of talking openly or seeking help for them. So the hope often is that the child will just grow out of it. We just need way more infiltration of autism information and support in minority communities, which will hopefully result in earlier diagnosis. I've visited black churches with this message letting them know they can be extremely helpful in this effort. We can't allow the window for "age-appropriate, effective therapy" to close on these kids.
5. Autism Can Be Tough on A Marriage
Autism is not a divorce mandate. Often it can bond a family tighter. But too often the financial and/or emotional toll autism can take leaves some couples feeling distanced from each other. This was the case with our marriage. My husband and I narrowly survived statistic status. But over the last 10 years I have marveled at his ability to evolve as a father and husband during this bumpy ride that he chronicled in his new book Not My Boy! A Father, A Son, and One Family's Journey with Autism (Hyperion).
I want to shamelessly plug my former NFL QB's evolved, honest account of his pain of dealing with this diagnosis. His personal revelation was that he had to adjust his expectations of his son. Our hope is that Not My Boy! will help so many dads (and moms) confront these challenges without feeling so alone. Rodney has taught me that men process things so differently. I could have been more patient and empathetic with respect to that... a book like this might have offered me that insight earlier on.
Couples digging deep to find the strength and resources to take on this fight together may be rewarded by actually connecting more deeply through this journey instead of being fractured by it.
6. Autism's Effect on Siblings
We don't see too much coverage about what the siblings of autism endure.
Ruined play dates, family outings cut short due to a brother's or sister's public meltdown, feelings of neglect, life planned exclusively around the affected child, social stigma... the list goes on.
It can be devastating for a typical child to have to grow up in such an environment. Sibs are often overlooked and really need a bit of attention; parents need tips to help the siblings cope.
I'm so hopeful this will change a bit with the release of My Brother Charlie, a new children's book co-written by my daughter and me. (We've been a busy family!) Told from a sister's perspective, in My Brother Charlie Callie acknowledges that while it hasn't always been easy for her to be Charlie's twin, she advocates lovingly for her brother, letting people know about all the cool things he can do well. I pray this book will go a long way towards fostering autism acceptance among children and mainstream schools. We found it hard to believe that there wasn't already such a book in children's libraries, considering the rising number of children on the spectrum. We are thrilled that Scholastic stepped up enthusiastically to embrace this important effort.
7. Adults Living with Autism
The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood. It's my own personal recurring nightmare. We ask ourselves: How will he make it in this cruel world without me? Will he live on his own? Will he ever get married or have meaningful relationships? Who will protect his heart? Our fears in this area can consume us.
Here are a few sobering facts:
•More than 80% of adults with autism between 18 and 30 still live at home (Easter Seals)
•There is an 81% unemployment rate among adults with autism (CARD)
•78% of families are unfamiliar with agencies that could help them (CARD)
•At least 500,000 children with autism will become adults during the next decade, and they will need homes, jobs, friends and a future
The good news is many adults living with this disorder live very fulfilling lives, but too many face a variety of difficulties including anxiety, depression, anger and social isolation.
We must create meaningful respectful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. They are valuable citizens!
How glorious would it be to get more media attention on this particular issue.
And bravo to Fox Searchlight Pictures for their beautiful and enlightening film Adam, which gave great insight into what it is like for a young man with Asperger's syndrome to live and thrive on his own.
8. Autism Advocates Who Actually Have Autism:
What a concept! Rarely do you hear any stories in the media about people actually affected by autism ever weighing in on the issues surrounding it. Because people on the spectrum may seem disengaged, they hear you talking about them and can develop frustration at not being able to respond to issues that affect them. We all need to remember that...
I have had some enlightening and profound conversations with folks on the spectrum who have made it very clear that they feel completely excluded from any national autism conversation. I've had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word "cure." Many have expressed that they feel this was their destiny, that they were born this way so stop trying to "cure me." Whatever our views or personal agendas, we have to respect that.
Others have been frustrated by the polarizing issues disproportionately covered in the media and would prefer for us neuro-typicals to focus that energy towards trying to understand their world, how they see things. "Come into my world!" one 25 year old young man with Asperger's told me passionately.
My friend, 14-year-old Carly Fleischmann, has autism, and has taught me more about it through her expressive writings than I've learned in any book! You go, Carly!
I am also so grateful to HBO for recently airing the sensational Temple Grandin, finally giving us an image in the media of an adult with autism advocating beautifully and articulately for others like herself.
Bottom line: Their opinions should be heard, valued and included.
So here's to breaking off 8 rays of the media spotlight towards some other important autism issues. Families affected by autism deserve more than just fiery headlines; we deserve a 360 degree, multi-faceted conversation. Spread the word!
Holly Robinson Peete
Actress, Author, Proud Mom of Four
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Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy's phone call shortly after her son's diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for 7 years already.
We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I'd be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she'd help spread autism awareness like nobody else could and the media would pay attention. Since that phone call, she has created a very successful platform with her powerful opinions, blogs and books on vaccine safety, diet and recovering her son among other things. It has been a courageous, controversial and fearless ride. Miss Jenny is not scared to get in the ring with the big boys!
Though I share many of same concerns, I feel compelled to shed light on the fact that families affected by autism are struggling on multiple levels. We need a shift of focus to share the spotlight with other often overshadowed issues that profoundly impact families daily.
To that end, below I highlight 8 things about autism the media is not covering enough. They are not hot-button, provocative or headline-grabbing, but with 1 in 110 children affected by autism (and rising), these issues desperately need more attention:
1. Autism Is Unaffordable
I'd love to see more media focus on how ridiculously expensive it is to treat a child with autism. You can counsel folks all day long to get early intervention, but who in the world can pay for it? Therapies can average over $100-$150 an hour - many require up to 14 or more hours a week. With insurance companies still not covering the vast amount of therapies needed, too many families are forced to pay out of pocket for much of these expenses. A 2006 Harvard study puts the average cost of services for an individual with autism is $3.2 million over his/her lifetime! A total of $35 billion a year is spent on services for individuals with autism in the U.S. The numbers have climbed since then...
Bottom line is treatment is completely and ridiculously unaffordable and can financially bring a family to its knees... even in good times.
Families live on pins and needles with hopes that they're doing the right thing. But the fact is for too many, the things we want to do are simply out of reach financially. I can think of no worse scenario than not being able to afford to help your child.
2. Parental Guilt
So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical and other treatments. But the fact is so many likely will never be "recovered" and nothing, I mean nothing, makes a parent feel more guilty than thinking you could've "fixed" your kid but... well you didn't or couldn't afford to. If you have a child who is non-verbal and severely impacted by autism, for example, and all you want to hear is him speak or just use the word "no" appropriately, it can be maddening to hear that someone else did x, y or z and now their kid is no longer on the spectrum at all. So many parents have shared with me how badly they feel about this. And although I personally have broken my butt for my son and though he has overcome many challenges we were told he would not, he still has autism. What could I have done better? Oh the guilt! Don't get me wrong, I am always elated for any child's success in this journey, but it can be very hard to swallow at times-making you feel like a failure. Just one mom's opinion, keeping it real...
Alas, accepting my son's progress or lack thereof is the key to moving forward with my head up.
3. Puberty Plus Autism Can Be a Volatile Mix
Our son is almost 13 and has entered puberty. Oftentimes kids on the spectrum can start puberty prematurely, and it can be an extremely jarring experience.
A dear friend of mine and autism "Superdaddy" explains puberty's effect on autism like this: "[Puberty is] an 'oy vey' for a normal child but it can send hormones racing in a child with autism that they don't know how to deal with."
The hormonal surge can cause violent and unpredictable behavior. Stress and depression can develop accompanied by social ostracism.
Our son has suddenly regressed recently after making so much progress, bringing us a new set of challenges we hadn't anticipated. We always always remain extremely hopeful and have been blessed beyond our wildest dreams with what he has been able to overcome to this point. But puberty has been a challenge more parents need to be prepared for. It can be a completely different dynamic at this age. Let's get that out there, please.
4. Minority Children are Diagnosed with Autism Years Later Than Other Children
There are a lot of mysteries about autism. But one thing we know, according to a study covered by CNN:
if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior.
That's why the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention. One reason these children are diagnosed later is that there are more barriers for socio-economically challenged families to access information. Certain developmental milestones are ignored, unknown or overlooked. Another part of the reason is that there are some cultural and social stigmas about mental health and a fear of talking openly or seeking help for them. So the hope often is that the child will just grow out of it. We just need way more infiltration of autism information and support in minority communities, which will hopefully result in earlier diagnosis. I've visited black churches with this message letting them know they can be extremely helpful in this effort. We can't allow the window for "age-appropriate, effective therapy" to close on these kids.
5. Autism Can Be Tough on A Marriage
Autism is not a divorce mandate. Often it can bond a family tighter. But too often the financial and/or emotional toll autism can take leaves some couples feeling distanced from each other. This was the case with our marriage. My husband and I narrowly survived statistic status. But over the last 10 years I have marveled at his ability to evolve as a father and husband during this bumpy ride that he chronicled in his new book Not My Boy! A Father, A Son, and One Family's Journey with Autism (Hyperion).
I want to shamelessly plug my former NFL QB's evolved, honest account of his pain of dealing with this diagnosis. His personal revelation was that he had to adjust his expectations of his son. Our hope is that Not My Boy! will help so many dads (and moms) confront these challenges without feeling so alone. Rodney has taught me that men process things so differently. I could have been more patient and empathetic with respect to that... a book like this might have offered me that insight earlier on.
Couples digging deep to find the strength and resources to take on this fight together may be rewarded by actually connecting more deeply through this journey instead of being fractured by it.
6. Autism's Effect on Siblings
We don't see too much coverage about what the siblings of autism endure.
Ruined play dates, family outings cut short due to a brother's or sister's public meltdown, feelings of neglect, life planned exclusively around the affected child, social stigma... the list goes on.
It can be devastating for a typical child to have to grow up in such an environment. Sibs are often overlooked and really need a bit of attention; parents need tips to help the siblings cope.
I'm so hopeful this will change a bit with the release of My Brother Charlie, a new children's book co-written by my daughter and me. (We've been a busy family!) Told from a sister's perspective, in My Brother Charlie Callie acknowledges that while it hasn't always been easy for her to be Charlie's twin, she advocates lovingly for her brother, letting people know about all the cool things he can do well. I pray this book will go a long way towards fostering autism acceptance among children and mainstream schools. We found it hard to believe that there wasn't already such a book in children's libraries, considering the rising number of children on the spectrum. We are thrilled that Scholastic stepped up enthusiastically to embrace this important effort.
7. Adults Living with Autism
The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood. It's my own personal recurring nightmare. We ask ourselves: How will he make it in this cruel world without me? Will he live on his own? Will he ever get married or have meaningful relationships? Who will protect his heart? Our fears in this area can consume us.
Here are a few sobering facts:
•More than 80% of adults with autism between 18 and 30 still live at home (Easter Seals)
•There is an 81% unemployment rate among adults with autism (CARD)
•78% of families are unfamiliar with agencies that could help them (CARD)
•At least 500,000 children with autism will become adults during the next decade, and they will need homes, jobs, friends and a future
The good news is many adults living with this disorder live very fulfilling lives, but too many face a variety of difficulties including anxiety, depression, anger and social isolation.
We must create meaningful respectful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. They are valuable citizens!
How glorious would it be to get more media attention on this particular issue.
And bravo to Fox Searchlight Pictures for their beautiful and enlightening film Adam, which gave great insight into what it is like for a young man with Asperger's syndrome to live and thrive on his own.
8. Autism Advocates Who Actually Have Autism:
What a concept! Rarely do you hear any stories in the media about people actually affected by autism ever weighing in on the issues surrounding it. Because people on the spectrum may seem disengaged, they hear you talking about them and can develop frustration at not being able to respond to issues that affect them. We all need to remember that...
I have had some enlightening and profound conversations with folks on the spectrum who have made it very clear that they feel completely excluded from any national autism conversation. I've had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word "cure." Many have expressed that they feel this was their destiny, that they were born this way so stop trying to "cure me." Whatever our views or personal agendas, we have to respect that.
Others have been frustrated by the polarizing issues disproportionately covered in the media and would prefer for us neuro-typicals to focus that energy towards trying to understand their world, how they see things. "Come into my world!" one 25 year old young man with Asperger's told me passionately.
My friend, 14-year-old Carly Fleischmann, has autism, and has taught me more about it through her expressive writings than I've learned in any book! You go, Carly!
I am also so grateful to HBO for recently airing the sensational Temple Grandin, finally giving us an image in the media of an adult with autism advocating beautifully and articulately for others like herself.
Bottom line: Their opinions should be heard, valued and included.
So here's to breaking off 8 rays of the media spotlight towards some other important autism issues. Families affected by autism deserve more than just fiery headlines; we deserve a 360 degree, multi-faceted conversation. Spread the word!
Holly Robinson Peete
Actress, Author, Proud Mom of Four
Tuesday, March 16, 2010
Gluten free pierogies, gluten free chicken nuggets and gluten free Udi's bread
We had a chance to try some new products lately and I figured I would share what we thought of them. First up, the much anticipated Udi's bread. From what I have read, this is the holy grail of gluten free breads. Because of its egg content, we opted not to give it to M. While we do give him some products with egg, I really did not want to get him hooked on a product that could potentially be an issue on an ongoing basis. We use the Gluten Free Creations white baguette for him in his school lunches. But, my husband and I ate our sack lunch at his field trip. The texture of this bread is much like that of sourdough bread. But just the texture, not the taste. It was DELISH! I would highly recommend this bread. This will be a staple in our house now. You cannot tell this bread is gluten free in my opinion! I wish the slices (and loaf) were bigger but hey, I will take what I can get! We bought this from the Gluten Free Country Store but I hear you can also get this at Sprouts.
Next up, gluten free pierogies. Also a must try in my opinion. They were delicious, had a great texture and really good flavor. The only negative was that I like my pierogies sauteed with olive oil and onions. I first boiled them as per the instructions. Then when they were done I sauteed them. The dough was really ripping easily so we didn't saute them too long. So that was the main difference between these and ones with gluten. I found these at the Gluten Free Country Store.
Last up, Garrett County chicken nuggets, in the shape of dinosaurs. I do not buy a lot of processed meats. This bag said gluten and dairy free as well as no preservatives. I decided to give them a try because hey, we all need some convenience options once in a while. The kids LOVED them and so did I. Now, I have to disclose that last year there was some controversy over this brand (and their mother company) testing very high for gluten even though they list their products as gluten free. As a result Whole Foods had pulled them from their shelves after repeated customer complaints. From what I read on other blogs, they have corrected the problem but, buyer beware. If you have a child who is very sensitive, it may be worth a call to them yourself. My kids showed no reaction, nor did I but that doesn't mean your child won't. My son has also been very unreactive to infractions (a bite of a real Twinkie at school, before his Winkie could be given to him, another parent at school gave him a regular Twinkie and he promptly took a bite). I feel that his Respen-A has helped tremendously because previously even a small bite would have ended in behavioral outbursts, aggression, tantruming, etc. He had no reaction after the Twinkie. So, it could be that he was not reactive for that reason. My daughter has eczema flares when she gets gluten and immediately starts scratching her feet, that did not happen with these but you should be aware of what has happened in the past. I found these at Sprouts.
So, for what's it is worth, our reviews of a few gluten free products. I hope it helps!
Arsenic in apple juice
I blogged on this last year but it is worth reporting the latest data since apple juice is so widely consumed by children. This is not such a huge issue for our house since apple juice feeds yeast so we don't do apple juice. And, learning what I have about nutrition, we don't do any juice that is pasteurized, why bother? Many of the good, healthy properties (i.e. the reasons why you drink juice) are destroyed in the pasteurization process. So, we have a juicer and make our own fresh juice when we want it. But, this is a huge concern overall, especially the blase attitude of "oh well, it really won't hurt you". We take that attitude a lot and yet we cannot ignore the rise in disease and disorders, including Autism. We cannot live in a bubble and yet when we can avoid putting toxic chemicals into our bodies, I think we should, especially into our young children who are still growing and developing.
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Study Finds Arsenic in Apple Juice
by Helena Bottemiller | Mar 16, 2010
A study released yesterday found over 25 percent of apple juice boxes tested contained concerning levels of arsenic, a heavy metal known to cause various types of cancer.
Florida's St. Petersburg Times commissioned an independent lab to test several nationally-recognized brands--Motts, Apple & Eve Organics, Walmart's Great Value, Nestle's Juicy Juice, Minute Maid, Tree Top, Target's Market Pantry--as well as a Tampa Bay company that supplies schools in the area.
The Times reported Monday that samples from three brands--Motts, Apple & Eve Organics, and Walmart's Great Value label--were found to have arsenic levels above the U.S. Food and Drug Administration's (FDA's) level of concern.
The Environmental Protection Agency (EPA) has an established limit for arsenic in drinking water: 10 parts per billion (ppb), the same standard set by the World Health Organization. The FDA does not have a similar limit for fruit juice, but, according to the Times, the agency told fruit juice companies that arsenic levels over 23 parts per billion (ppb) would be at a "level of concern."
Motts, Apple & Eve Organics, and Walmart's juice were found to contain between 25 and 35 ppb of arsenic. Juicy Juice, Minute Maid, Tree Top, and Target's Market Pantry did not surpass the FDA's so-called "level of concern" for juice, but each surpassed the EPA's allowable limit for arsenic in drinking water, with 12 to 24 ppb.
Only the Tampa brand, which supplies directly to local schools, was found to have undectable levels of the heavy metal.
Though the study's findings will likely be alarming to many consumers, especially those with young children, FDA officials are not currently concerned about the public health risk.
"We don't have any evidence at this point to say that we feel there's a risk issue that you need to be mindful of," said P. Michael Bolger, FDA's chief of chemical hazards assessment, told the Times.
Although arsenic is naturally occuring, prevalent element, and minimal exposure cannot be avoided, there is strong public health evidence that suggests it is a good idea to limit arsenic intake.
How does arsenic get into apple juice?
Because arsenic is found in soil and ground water, there is bound to be trace levels of it in most food and beverage products, but not all of that arsenic is naturally occurring. Arsenic-based herbicides were commonly used in U.S. agricultural production until 1970, when more effective chemicals became available (though the chemical is still used in domestic chicken feed as a growth enhancer).
According to Charles Benbrook, a leading scientist at the Organic Center in Oregon, arsenic-based chemicals are still being used on many apple orchards abroad, and past chemical use on the fields can cause arsenic contamination.
"If the orchard was planted on a field that was treated six or eight or 10 times over the last 30 years, it would build up to a high level," explained Benbrook.
Over 60 percent of apple juice, made from concentrate, consumed in the U.S. is made from apples grown in China and much of the rest is made from apples grown in Chile, Argentina, and Turkey, according to the Times.
Several leading arsenic scientists believe additional precautions should be taken to minimize arsenic levels in juice, which is widely consumed by young children especially vulnerable to exposure.
"(Juices) ought to meet the drinking water standards," Allan Smith, director of the Arsenic Health Effects Research Program at the University of California Berkeley told the Times. "If they don't, that's where the pressure should go."
For more information on arsenic exposure, see the Department of Health and Human Services Website.
Tags: apple juice, arsenic
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Study Finds Arsenic in Apple Juice
by Helena Bottemiller | Mar 16, 2010
A study released yesterday found over 25 percent of apple juice boxes tested contained concerning levels of arsenic, a heavy metal known to cause various types of cancer.
Florida's St. Petersburg Times commissioned an independent lab to test several nationally-recognized brands--Motts, Apple & Eve Organics, Walmart's Great Value, Nestle's Juicy Juice, Minute Maid, Tree Top, Target's Market Pantry--as well as a Tampa Bay company that supplies schools in the area.
The Times reported Monday that samples from three brands--Motts, Apple & Eve Organics, and Walmart's Great Value label--were found to have arsenic levels above the U.S. Food and Drug Administration's (FDA's) level of concern.
The Environmental Protection Agency (EPA) has an established limit for arsenic in drinking water: 10 parts per billion (ppb), the same standard set by the World Health Organization. The FDA does not have a similar limit for fruit juice, but, according to the Times, the agency told fruit juice companies that arsenic levels over 23 parts per billion (ppb) would be at a "level of concern."
Motts, Apple & Eve Organics, and Walmart's juice were found to contain between 25 and 35 ppb of arsenic. Juicy Juice, Minute Maid, Tree Top, and Target's Market Pantry did not surpass the FDA's so-called "level of concern" for juice, but each surpassed the EPA's allowable limit for arsenic in drinking water, with 12 to 24 ppb.
Only the Tampa brand, which supplies directly to local schools, was found to have undectable levels of the heavy metal.
Though the study's findings will likely be alarming to many consumers, especially those with young children, FDA officials are not currently concerned about the public health risk.
"We don't have any evidence at this point to say that we feel there's a risk issue that you need to be mindful of," said P. Michael Bolger, FDA's chief of chemical hazards assessment, told the Times.
Although arsenic is naturally occuring, prevalent element, and minimal exposure cannot be avoided, there is strong public health evidence that suggests it is a good idea to limit arsenic intake.
How does arsenic get into apple juice?
Because arsenic is found in soil and ground water, there is bound to be trace levels of it in most food and beverage products, but not all of that arsenic is naturally occurring. Arsenic-based herbicides were commonly used in U.S. agricultural production until 1970, when more effective chemicals became available (though the chemical is still used in domestic chicken feed as a growth enhancer).
According to Charles Benbrook, a leading scientist at the Organic Center in Oregon, arsenic-based chemicals are still being used on many apple orchards abroad, and past chemical use on the fields can cause arsenic contamination.
"If the orchard was planted on a field that was treated six or eight or 10 times over the last 30 years, it would build up to a high level," explained Benbrook.
Over 60 percent of apple juice, made from concentrate, consumed in the U.S. is made from apples grown in China and much of the rest is made from apples grown in Chile, Argentina, and Turkey, according to the Times.
Several leading arsenic scientists believe additional precautions should be taken to minimize arsenic levels in juice, which is widely consumed by young children especially vulnerable to exposure.
"(Juices) ought to meet the drinking water standards," Allan Smith, director of the Arsenic Health Effects Research Program at the University of California Berkeley told the Times. "If they don't, that's where the pressure should go."
For more information on arsenic exposure, see the Department of Health and Human Services Website.
Tags: apple juice, arsenic
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Thursday, March 11, 2010
Gluten Free Country Store
OK folks, I am feeling better and getting back to my old self finally. As such, had to run some errands today after dropping the kids at school. My first stop was the Gluten Free Country Store in Gilbert, AZ. I had heard about them but had not been in personally. When I was sick, I realized we needed "Winkies" (GFCF version of a Twinkie) for M at school for a cactus snack they were doing. Dear hubby was going to stop by Gluten Free Creations in Phoenix while he was out and about at work. Well, taking care of me, the kids, the house, etc. and guess what? Winkies got forgotten! The internal alarm goes off in my head at 5:00 pm the night before we need them. I quickly look some stuff up on my phone and see that the Gluten Free Country Store is now carrying many of the items from Gluten Free Creations. I quickly call them, speak to the owner Gary who tells me, yes, they do have Winkies and even better, they were open until 8:00 pm that night! Wow, a 10 minute car ride versus a 30 minute one, dear hubby loads the kids up, runs to the store and the snack is saved for dear M. One gold star for Gluten Free Country Store. So needless to say, I was anxious to get in there myself. I did today and I was not sorry. Not only are they expanding, adding in another freezer for more Gluten Free Creations items but I even found some new stuff! M's diet is more restricted than ours but since the whole fam is now GF as well, I have missed things like bean burritos and yes, even Pierogies! I could not believe my eyes, Pierogies? I had to buy some. And they carry the So Delicious Coconut milk we use (and it was CHEAPER than our co-op Azure Standard!). They had many, many mixes for do-it-yourselfers and a good array of premade items as well. They even carry the little snacky items that can be hard to find like gummy worms, jelly beans and fruit snacks, all gluten free. And Gary even said he wants to bring in vitamins and supplements! We are talking about him bringing in New Beginnings stuff. So, all you loyal New Beginnings users may not have to wait for your monthly shipments or if you are running low on an item, you may have a local source for that. Wouldn't THAT be nice? We all know that a special diet means more money, more time, more miles driving to find things. I think it is just fabulous that we have a great new resource closer to us in the East Valley! They even carry the much acclaimed Udi's bread. I have read really good things about this bread, that it is soft and spongie just like wheat bread. I am excited to try it and the pierogies. I will let everyone know how we like them. But for us, it is time to get ready for a field trip tomorrow so now I have my gluten free bread for our sack lunches tomorrow. And, if anyone out there needs some gluten free items, look no further than the Gluten Free Country Store, you will be glad you did! Click HERE for their website.
Monday, March 1, 2010
Respen-A Q & A
I apologize to all my blog followers, I have been very ill for well over a week now. I am feeling a little better but realize now too much stress and taking too many things on really have negatively impacted my health. So, I will be reducing my online time overall. I will still keep this blog going, don't get me wrong, but I have to reduce my work load at this point.
But, over the course of the week and a half or so, some great questions have come in about Respen-A and thankfully, a developer of the product, Elaine De Lack, has been reading my blog and the comments and have been answering them. Who better to get this info from but from the main person, so thank you Elaine! I am going to post the questions here so everyone can see them, not just those to read past posts and their comments so here goes.
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Q: Do you need a camera/video on your computer to participate in a webinar or do you just type your questions?
Also...if your child is using respen-a do they have to stop taking vitamin D3? (it is in my child's multi) Thank you!
Sorry...one more question. What type of calcium (and how much) do you give your son with the respen-a? Thank you! Walker
A: Hello Walker,
You do not need a webcamera on your computer to participate in the webinar. You can simply listen using your speakers and ask questions using a microphone that is attached to your computer or you can type in your questions or you can call the call in number that is given to you and you can listen in on your telephone and ask questions via your telephone as well. If you hae unlimited long distance this is the best so that you don't get feedback through your speakers. We encourage everyone to ask questions, or share comments as we are learning from you as well. In a universe that is in constant motion, everything is constantly changing, so my motto is, the day I think I know it all is the dumbest day of my life.
We had our first webinar on February 23rd and it went well I thought but we had trouble getting through the slides once someone asked a question. We are going to record and archive these webinars on our website so that people can go back and listen or people who weren't able to attend the webinar can still listen to them. So to make the recordings flow well, we are going to go through the slide presentation at the beginning of the webinar and then open it up for questions and it can be any questions, they don't have to be on the subject the slide presentation was on. Dr. Starr will be available as well as myself for questions.
The other thing I realized is that we need to break the slide presentations down thoroughly dissecting each symptom or topic. Many of the trends in medicine have come about from a marketing campaign because of a new patent and that doesn't necessarily mean they will or are producing the best health outcomes. I plan to expose these trends as well as they pertain to the various topics we will be covering. This way people can make informed decisions as to what treatments they want to pursue. So as for your question regarding vitamin D3 which is a topic we will be discussing during one of our webinars that came about from the new patent for cholecalciferol years ago, the answer is no. The amount of vitamin D3 which is usually about 400 IU is fine. It is the large doses of vitamin D3 that can decrease the effect of Respen-A.
As for your calcium question, we are going to discuss in depth the calcium issue this Tuesday, March 2. If you would like an invitation to the webinar, just email me at elaine@edmsllc.com and I will email you an invite. But in short, the answer to your question is we have found most people do the best with calcium carbonate but there have been a handful that need the calcium citrate instead. Because the majority do the best with the calcium carbonate, that is what the pharmacy sends out for free with the first prescription of Respen-A. We are working to get this in a capsule form so that people can open the capsule and mix the powder inside the capsule with applesauce or pudding or something their child likes to eat. We had this supplement in a capsule originally but it also contained copper and zinc. We don't want to contribute to the high copper levels autistic children have so we are getting a new formulation made that doesn't have copper or zinc but it will have some magnesium in a 4;1 ratio of calcium to magnesium. How you know if your child is absorbing the form of calcium they are using is if they display increased aggressiveness or irritability then they most likely aren't absorbing the calcium well and you should switch to another form of calcium such as calcium citrate. If it was the calcium you should see an improvement in the aggression and irritability within 1-2 days of changing the calcium. If your child is happy, in a good mood but showing hyperactivity, this usually isn't a calcium issue, but rather a sign that the dose of Respen-A is too high and cutting the disc in half usually resolves this.
Elaine DeLack
A: Hi Walker, as my own note, we've been using the liquid calcium and the powdered magnesium citrate from New Beginnings Nutritional for my son and he is doing wonderfully on them both. For more info on the calcium, click HERE and for more info on the magnesium, click HERE. And, since the flu has been running through our home, I have once again pulled out the vitamin D to supplement my son to try and fight this bug as he has now shown signs of having. This is day 2 of large dose supplementation and have not noticed a regression from our Respen-A gains. I do not intend to make this a long term thing but I also believe that D3 can be a powerful ally against the flu so I am using it on him now. I will tell you how it goes in the next few days. Thanks! Terri
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Q: Are these webinars on the Autism Action site? Or will my e mail request be acceptable? Tawyna
A: Hi Tawnya,
The webinars are done through our GoToWebinar (GoToMeeting) so you will need to send me an email requesting an invitation. My email is elaine@edmsllc.com In the very near future we will have a webinar page on our website where you can request an invitation and listen to recorded archived webinars. Our website is www.respen-a.com
By the way, we will be presenting at the AutismOne conference in Chicago May 24-30.
Elaine DeLack
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Q: I can't wait to hear more about this. If i get this prescribed, could I ship with you or can they ship to AZ now? Shari
A: Hi Shari, yes we finally can ship into AZ. There are only 5 states we can't ship into now, and they are Vermont, Arkansas, Kentucky, Louisiana, Nebraska, and North Carolina. We are working to get a pharmacy on board that is licensed in these states as well. To be licensed in the various states the pharmacy has to take the law exam in each state and pay a fee. Unfortunately to expand to get Respen-A available in more states, the pharmacies demanded a higher price or they weren't going to continue to make the product. The discs are very time intensive to make. So the price has gone up to $82 for a month's supply. I am working on a means to make the discs easier and so maybe in the future we will be able to get the price to come down some. I am limiting the number of pharmacies that make the Respen-A so that I can better insure the quality of the product.
Elaine DeLack
A: Hi Shari - here is the name and phone number of the pharmacy that can ship to AZ now:
Key Pharmacy, 206-878-3900. They are in Seattle. Terri
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Q: Hi- I am the mom of a 7 yo with Aspergers- we see dr. Rossignol in Melbourne Fl-- and I just spoke with Elaine this evening about Respen-A. It's really heartening to hear of positive results. I am really hoping for improved social behavior and lessened sensory issues. I am considering relocating to Tuscon and was told that I have to live in the Foothills school district. I was hoping you might know something about the schools in this area? Also, Syndion is not on my list of "suppies", what is it? Thanks!
Terri
A: Hi Terri! I don't know anything about school districts in the Tucson area, I am sorry. If you need info on Phoenix area schools I can give you some info. Syndion is a comprehensive multivitamin, multimineral designed for kids on the spectrum. It helps normalize sulfation and methylation pathways and help the body detox. Click HERE to read more. It is formulated by Jim Adams out of ASU, I love this product for my son!
But, over the course of the week and a half or so, some great questions have come in about Respen-A and thankfully, a developer of the product, Elaine De Lack, has been reading my blog and the comments and have been answering them. Who better to get this info from but from the main person, so thank you Elaine! I am going to post the questions here so everyone can see them, not just those to read past posts and their comments so here goes.
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Q: Do you need a camera/video on your computer to participate in a webinar or do you just type your questions?
Also...if your child is using respen-a do they have to stop taking vitamin D3? (it is in my child's multi) Thank you!
Sorry...one more question. What type of calcium (and how much) do you give your son with the respen-a? Thank you! Walker
A: Hello Walker,
You do not need a webcamera on your computer to participate in the webinar. You can simply listen using your speakers and ask questions using a microphone that is attached to your computer or you can type in your questions or you can call the call in number that is given to you and you can listen in on your telephone and ask questions via your telephone as well. If you hae unlimited long distance this is the best so that you don't get feedback through your speakers. We encourage everyone to ask questions, or share comments as we are learning from you as well. In a universe that is in constant motion, everything is constantly changing, so my motto is, the day I think I know it all is the dumbest day of my life.
We had our first webinar on February 23rd and it went well I thought but we had trouble getting through the slides once someone asked a question. We are going to record and archive these webinars on our website so that people can go back and listen or people who weren't able to attend the webinar can still listen to them. So to make the recordings flow well, we are going to go through the slide presentation at the beginning of the webinar and then open it up for questions and it can be any questions, they don't have to be on the subject the slide presentation was on. Dr. Starr will be available as well as myself for questions.
The other thing I realized is that we need to break the slide presentations down thoroughly dissecting each symptom or topic. Many of the trends in medicine have come about from a marketing campaign because of a new patent and that doesn't necessarily mean they will or are producing the best health outcomes. I plan to expose these trends as well as they pertain to the various topics we will be covering. This way people can make informed decisions as to what treatments they want to pursue. So as for your question regarding vitamin D3 which is a topic we will be discussing during one of our webinars that came about from the new patent for cholecalciferol years ago, the answer is no. The amount of vitamin D3 which is usually about 400 IU is fine. It is the large doses of vitamin D3 that can decrease the effect of Respen-A.
As for your calcium question, we are going to discuss in depth the calcium issue this Tuesday, March 2. If you would like an invitation to the webinar, just email me at elaine@edmsllc.com and I will email you an invite. But in short, the answer to your question is we have found most people do the best with calcium carbonate but there have been a handful that need the calcium citrate instead. Because the majority do the best with the calcium carbonate, that is what the pharmacy sends out for free with the first prescription of Respen-A. We are working to get this in a capsule form so that people can open the capsule and mix the powder inside the capsule with applesauce or pudding or something their child likes to eat. We had this supplement in a capsule originally but it also contained copper and zinc. We don't want to contribute to the high copper levels autistic children have so we are getting a new formulation made that doesn't have copper or zinc but it will have some magnesium in a 4;1 ratio of calcium to magnesium. How you know if your child is absorbing the form of calcium they are using is if they display increased aggressiveness or irritability then they most likely aren't absorbing the calcium well and you should switch to another form of calcium such as calcium citrate. If it was the calcium you should see an improvement in the aggression and irritability within 1-2 days of changing the calcium. If your child is happy, in a good mood but showing hyperactivity, this usually isn't a calcium issue, but rather a sign that the dose of Respen-A is too high and cutting the disc in half usually resolves this.
Elaine DeLack
A: Hi Walker, as my own note, we've been using the liquid calcium and the powdered magnesium citrate from New Beginnings Nutritional for my son and he is doing wonderfully on them both. For more info on the calcium, click HERE and for more info on the magnesium, click HERE. And, since the flu has been running through our home, I have once again pulled out the vitamin D to supplement my son to try and fight this bug as he has now shown signs of having. This is day 2 of large dose supplementation and have not noticed a regression from our Respen-A gains. I do not intend to make this a long term thing but I also believe that D3 can be a powerful ally against the flu so I am using it on him now. I will tell you how it goes in the next few days. Thanks! Terri
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Q: Are these webinars on the Autism Action site? Or will my e mail request be acceptable? Tawyna
A: Hi Tawnya,
The webinars are done through our GoToWebinar (GoToMeeting) so you will need to send me an email requesting an invitation. My email is elaine@edmsllc.com In the very near future we will have a webinar page on our website where you can request an invitation and listen to recorded archived webinars. Our website is www.respen-a.com
By the way, we will be presenting at the AutismOne conference in Chicago May 24-30.
Elaine DeLack
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Q: I can't wait to hear more about this. If i get this prescribed, could I ship with you or can they ship to AZ now? Shari
A: Hi Shari, yes we finally can ship into AZ. There are only 5 states we can't ship into now, and they are Vermont, Arkansas, Kentucky, Louisiana, Nebraska, and North Carolina. We are working to get a pharmacy on board that is licensed in these states as well. To be licensed in the various states the pharmacy has to take the law exam in each state and pay a fee. Unfortunately to expand to get Respen-A available in more states, the pharmacies demanded a higher price or they weren't going to continue to make the product. The discs are very time intensive to make. So the price has gone up to $82 for a month's supply. I am working on a means to make the discs easier and so maybe in the future we will be able to get the price to come down some. I am limiting the number of pharmacies that make the Respen-A so that I can better insure the quality of the product.
Elaine DeLack
A: Hi Shari - here is the name and phone number of the pharmacy that can ship to AZ now:
Key Pharmacy, 206-878-3900. They are in Seattle. Terri
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Q: Hi- I am the mom of a 7 yo with Aspergers- we see dr. Rossignol in Melbourne Fl-- and I just spoke with Elaine this evening about Respen-A. It's really heartening to hear of positive results. I am really hoping for improved social behavior and lessened sensory issues. I am considering relocating to Tuscon and was told that I have to live in the Foothills school district. I was hoping you might know something about the schools in this area? Also, Syndion is not on my list of "suppies", what is it? Thanks!
Terri
A: Hi Terri! I don't know anything about school districts in the Tucson area, I am sorry. If you need info on Phoenix area schools I can give you some info. Syndion is a comprehensive multivitamin, multimineral designed for kids on the spectrum. It helps normalize sulfation and methylation pathways and help the body detox. Click HERE to read more. It is formulated by Jim Adams out of ASU, I love this product for my son!
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