So far today has been all about grocery shopping + more pumpkins + emails (playing big time catch up). This week I am trying out an entire menu from Everyday Food - took the magazine with me to the store and just went right down the list. Making this one tonight.
Chris and I wrote up the following together today as we reflected back on the show:
We had a chance to watch Jenny McCarthy (and Holly Robinson Peete) on Oprah. So many things we can relate to in both of their stories. Lots of emotions and memories as we watched. We both made comments throughout the show to one another – many in agreement and some questioning.
Here's what we think was good: continuing to talk about autism and all the different treatment options (especially the biomedical options). General awareness is so important as early intervention can make such a big difference. Being on Oprah is a huge audience and opens to door of basic information to so many more people.
For many of you who watched it may be the first time you heard about the diet (gluten/casein free – GFCF). We started the diet almost immediately after Simon was diagnosed. In many ways it simply gave us something to focus on and we figured we might as well give it a try.
In Simon's case we did not see much of a difference after removing gluten – we did notice that his runny nose stopped after removing the milk. I have read many stories (similar to Jenny's) in books (and more books) and online where removing gluten has made a huge difference in a child's behavior – including improvements in speech, eye contact, stimming, etc. If you are interested in reading more, Talk About Curing Autism Now is my favorite site for information (including a fantastic getting started guide). They also have a page with a bunch of different diet links.
The diet is challenging (and can get complicated if you need to also remove soy, corn, rice, etc – you would find this out after testing with a DAN doctor), but completely worth a try. There really is no one-size fits all approach for any of this. If you are interested in trying some of the biomedical interventions (such as the diet) I suggest you hook up with a DAN (Defeat Autism Now) doctor. It is a day to day journey to say the least.
At this time Simon is not on a gluten free diet. It may be something we will try again in the future if we begin seeing more complicated behavioral issues and/or regressions.
Another topic that came up on the show, and one that is very controversial, is the subject of a link between vaccines and autism. In Simon's case we did not notice any visible difference in him before and after his shots. But in reality we don't just don't know. No one knows. Having said that, we do not discount other parents who feel from direct personal experience that there is a link between the two. If you were to see an immediate change in your child from one day to the next with your own eyes you may suspect a link as well.
After lots of thought and discussion (and some prayers), Simon did receive his vaccinations to enter kindergarten – but only after we personally inspected the ingredient lists to confirm that they were thimerosal free (mercury-containing preservative). According to the CDC, "Today, with the exception of some Influenza (flu) vaccines, none of the vaccines used in the U.S. to protect preschool children against 12 infectious diseases contain thimerosal as a preservative." We are not anti-vaccine. We are simply parents who are trying to do the best for their child.
We do however agree with Holly Robinson Peete's comment that while the Center for Disease Control may not agree that there is conclusive evidence to suggest a link between autism and thimerosal, at least we should talk about whether a one size fits all vaccination regimen is suitable for all kids. As autism has shown us in the most personal way, these kids are all unique – every child, with autism or not, is unique. They say that if you've met one kid with autism, you've met one kid with autism…you can't draw conclusions about one by what you have seen with others. That seems to be true not only for symptoms, but for treatments as well.
No one knows what causes autism. Our guess is that it is the result of a combination of factors – perhaps exposure to something in early childhood environment that only affects those kids who have a genetic predisposition. But again, who knows?
We are not a researchers, we are simply parents to one fantastic little boy. As parents, our main focus is Simon and how we can help him be successful in his life (in whatever that will mean for him – right now he wants "to go to college" and be an astronaut). Our day to day experience is one of much joy even in the midst of all kinds of crazy challenges.
The bottom line for us: he is one awesome little kid.
As you think about leaving comments, please be respectful of one another's thoughts and opinions. These are sensitive issues with all kinds of different angles. A simple google search on any of these topics will lead to massive amounts of information producing arguments both for and against everything related to autism (enough to make you want to hide out for days rather than forge ahead).
Peace be with all of you who are on this journey right now.
![Two Peas](http://www.avantlink.com/gbi/10513/24901/21775/26723/image.jpg"width="120"height="240"style="border:0px;"alt=)
It sounds like there are many theories of what causes Autism, how to treat it and help for parents and children alike. I love that the information is out there for everyone to share (Think about how difficult it must have been for parents before the internet). Take care and enjoy that sweet little boy!
Sue
Thank you so much for sharing your thoughts on this Ali. I too watched the show. I feel the same way as you on these points. I wasn’t crazy about the show, but am glad Oprah did it for awareness.
Ali-
I too read your blog as a crafter but have come to feel so much closer to you as a “friend and neighbor” because you take the time to share your personal side. I love the simple and respectful way you explain things that are usually quite complicated. Things that are often “heated” when discussed in other arenas appear “softer” as you explain. You have a way with people, with words and with seeing things that few possess and this is either a special gift or a talent that few possess- I hope you cherish that and just want to let you know how much I appreciate it. My hope and prayer is that you and Chris always maintain your realistic approach and “common sense” rationale while continuing to deal with Simon’s autism. It is hard for people in this modern day and age to accept the reality which is we know very little (and understand still less) about this phenomenon. In this day and age of so many medical miracles grasping that concept can be so frustrating! Keep doing what you are doing. Raise awareness, continue the fund-raising efforts and political rallying for this cause. Simon, and other children like Simon, deserve it-will grow to appreciate it. There are many of us out there who see what you are doign and respect and support what you do. You are a God-send to Simon, as his parents. To the cause, as role models. And to us as mentors. If I were to never scrap agan, I’d still be grateful for this hobby having provided me with the opportunity to have met you (and Chris).
My nephew wasnt diagnosed until he was 6…I think as youve also said. Early intervention is most important. No he struggles day to day in school she has tried private, and two different public schools. I also believe when Autism is so profound now there should be a program based for these children to help them through school and maintain the ability to learn and grow just like any other child.
Simon is so very lucky to have you and your husband as parents. You are caring, sensitive and aware. That is so very important to any child.
What I liked about the comments you made here on your blog and on Oprah is that all of these children who have autism are different. As a high school science teacher I have taught several students with autism. And I can honestly say that these kids are as unique and as different from each other as all kids are. There is no “one size fits all” way to teach these children. I have also been blessed by these students who remind me that there is always another way to look at a (science) problem.
Hi Ali and Chris,
When I first heard of you, I thought wow I can learn a lot about scrapbooking from her (techniques, style, pattterns, etc) but after reading your blog for a couple of months now I have learned so much more. You are really a teacher of life and an eye opener. Because of you, I am learning a lot about “Going Green” and applying it in our everyday life. I commend you for approaching these obstacles in your life with a open mind and an opened heart. You are wonderful parents and Simon is one lucky kid. Have a wonderful week and I can’t wait to meet you at CKU in Orlando in October.
Hi Ali and Chris,
When I first heard of you, I thought wow I can learn a lot about scrapbooking from her (techniques, style, pattterns, etc) but after reading your blog for a couple of months now I have learned so much more. You are really a teacher of life and an eye opener. Because of you, I am learning a lot about “Going Green” and applying it in our everyday life. I commend you for approaching these obstacles in your life with a open mind and an opened heart. You are wonderful parents and Simon is one lucky kid. Have a wonderful week and I can’t wait to meet you at CKU in Orlando in October.
Hi Ali and Chris,
When I first heard of you, I thought wow I can learn a lot about scrapbooking from her (techniques, style, pattterns, etc) but after reading your blog for a couple of months now I have learned so much more. You are really a teacher of life and an eye opener. Because of you, I am learning a lot about “Going Green” and applying it in our everyday life. I commend you for approaching these obstacles in your life with a open mind and an opened heart. You are wonderful parents and Simon is one lucky kid. Have a wonderful week and I can’t wait to meet you at CKU in Orlando in October.
I was trained and worked as an ABA tutor for about 4 years, and so was put into a new world of autism pretty early in my life. I agree with everything you said..and just want you to know how grateful I am that you have put so much information(correct) out there for others willing and wanting to know more about autism. What special people this disorder affects…hope an answer is found soon! Or a lot of answers!
You are one fabulous Mom and person, Ali. So glad I got to meet you in person… our guys are special guys. We are again in the midst of a struggle with Caleb and I am considering adding fish oil back in as I really think it did help… but you are right- different things help different kids. I love your outlook on life… and Simon’s.
Bless you.
JE
Thanks Ali for your comments. I was curious what your take was on the show. Children are all so unique! http://www.raisingsmallsouls.com/wp-content/themes/179/aschool0832.html
A friend shared this slide show with me and it was touching.
Ali & Chris,
As a person that is not a parent of a child with Autism but knows many parents that are, I appreciate your blog entry. Well said and as always, speaking from the heart.
Best to your family on this journey.
Lourdes
Ali, I could say a lot but I won’t, just from one Mum of a child with special needs (not Autism) to another I know what its like, I know we’re doing the best we can and we should be so proud of that cos we’ve both got really great little guys. Hugs x
You and Chris seem like such wonderful parents. You are doing a terrific job. Have a wonderful day!
Hi Ali,
I really enjoyed reading your post today. Thanks!
Julia
Your family’s dealing with Autism and mine is dealing with Diabetes, but the questions and discoveries are similar in the quest for what’s best for our little ones. Your post got me thinking about the Flu shot(boy will I be asking questions at the next Dr. visit)because my little one gets them yearly for her compromised immune system, and maybe just maybe we should look into the gluten free diet(couldn’t hurt).
Thanks for stirring my brain!
ali,
as always, thanks for the great inspiration, and for sharing your story. you give all of us mamas out there a little “push” every day to really think hard about our kids and what we can be doing for them each and every day, whether they’re affected with autism or not.
You are AWESOME! Simon is one lucky little guy to have you as his mom (and Chris as his dad)!
Hey Ali,
Just wanted to say thank you, again.
My 18 year-old Asperger’s child graduated from high school with a regular diploma. He is now in a job training program, getting his first paycheck next Friday.
And he has a girlfriend.
Who would have thought, all those years ago? I am so proud of what he has and is accomplishing.
He IS one awesome kid.
I believe my nephew has Aspergers, which from what I can tell is a form of autism. My sister-in-law thinks it’s cute when he flaps his arms and just describes him as “wild”. He social skills are definitely that of the description of a child with Aspergers. He’s almost 3 and everything I read says early detection is the best. I cannot seem to find a way to talk to her about it. No one wants to hear that something might be different about their child. How did you and Chris come to the decision that Simon needed to be evaluated? (if you don’t mind sharing) Any suggestions?
Thank you for all the links and information!
For me watching Oprah was a little hard. I have a DAN doctor and my son is on the gluten free diet. I buy vitamins that he needs and the school he is in provides Therepy. I agree that Jen is doing a great job of getting the word out there. But there just is no help for families that children have Autism. I could do so much more for him is I had finacial help. The goverment offers nothing for me to get him help. So it comes down to the fact that I can not push my son to his limit because I can not afford to and that is just very aggravating to me.
Jennifer
Just wanted to let you know that one of the girls on America’s Next Top Model this season has Asberger’s Syndrome. When they asked her in her interview, what she was diagnosed with at 12, wehat she has, she said it’s a mild form of Autism.
And there she is, competeing for America’s Next Top Model! I am rooting for her.
Hi Ali-
Just as Simon was made perfect and wonderful for you and Chris,so were you made for him. God is not capable of making a mistake. Treasure your child and the time you have with him while he is little–he is precious in OUR sight as well.
We love you!
Your Cali-friend,
ana-maria
INCREDIBLE PEOPLE ARE ALL AROUND US -
YOU AND YOUR BLOGGERS!!!!
THANK YOU TIME AND TIME AGAIN.
I just wanted to say that I think you and your husband are amazing people with such strength. I can not begin to relate to this topic, I only wanted to let you know that being a faithful reader of your blog I think all 3 of you are pretty great and are so blessed to have one another. Hugs to all of you!
(((HUGS))) love you guys
I watched the show and I felt the same way about most of it. As a mother of two young children I have been careful about the vaccines they receive. Striving for thimerosal free and staggering them so they are not exposed to more than three vaccines at once. Just as a precaution and to ease my mind a little. I love the balance you share on the subject and the loving way you (and your husband)are advocating for this disease. Having never met a child with Autism I do look forward tot he day when i can meet one and realize the uniqueness that lies within. A life wanting to succeed like any child!
Ali–
I want to commend you for speaking from your heart. You are one true genuine soul who has your head on as square as it could be, and are doing the world some good, one blog post at a time. Thanks so much for being such an awesome person! And many good luck wishes for every milestone in Simon’s life. So glad you are sharing it with us.
So well written and insightful. I also watched the show and it got me talking to my girlfriends. Thanks for sharing your thoughts as a mother to a child with Autism. As a mother of a newborn, I certainly want to be aware of environmental factors, early intervention and symtoms/treatment programs of Autism. It was nice to hear your well written response. Thank you for being so open and sharing. Sara
Great thoughts, words, and attitudes. Simon will be blessed in life because of those people around him, particularily his parents.
Simon is one lucky boy to have such fantastic parents are you! Enjoy him and every day. Thanks for sharing your blog with us. Hang in there and take care of each other. We so appreciate you speaking from your heart. You are loved!
Leanne
Hey Ali!
I’ve been reading your blog for a while, but have never posted. I enjoy reading about you and your family.
I am a school social worker in a large school system in the south. I wanted to comment on your statement that Simon wants to go to college. I work in the Special Education department with high school students. The majority of my time is spent helping student to transition from high school to whatever is next in their lives (work, post-secondary ed., community involvement). I know it is a long time away for little Simon, but I just want to encourage you. Obviously, I can’t tell you what Simon’s potential is for the future. However, I know so many students don’t even consider college because they “are Special Ed.” or they just don’t know that it is a possibility. I run College Prep groups for students in our high schools to encourage them to consider the possibilities. The groups are for any student who receives Special Education services, but wants to go to a technical school, community college or four-year university. There are so many things that students need to know to make this happen. The biggest thing is teaching them about self-advocacy. It is a big change to go from a public high school and IDEIA to a post-secondary environment and the ADA. Students need to know that they can receive similar services, but it is now their responsibility to self-advocate and get those services. If they don’t say something, most likely, no one is going to come looking for them. There are also some colleges in the northeast that are doing exciting things with getting students with disabilities on campus with their peers.
Anyway…I say all that to say…even though it seems like a long time away…it is possible!!! You seem like a very progressive and “on top of it” parent. So, I’m sure you already know that, but I just wanted to send some encouragement your way.
If you have any questions, I did enter my e-mail. Please feel free to drop me a line!
Best Wishes!
by changing the life of ONE child, as you do for Simon every day for the best, you and Chris CHANGE the WORLD.
You’re all fabulous.
hi ali, i just wanted to compliment you on your post. i also watched the oprah show and i did feel some of the comments were very stongly stated and there is not a one size fits all to any person, child or adult, autism or not. hopefully they will find a cause/cure/treatments for these children, but hopefully the people watching these shows do not only see in black and white, but research all treatments, therapies, vaccines and discuss these with their healthcare professional and not only listen to one persons’ opinion. i have met you in person ( at save, in the poconos ) and thought you were an awesome person, but your last post really sealed my opinion. you have a very calming, thoughtful approach to your comments and are very educated about your child, but yet realize that people will be reading your posts and some may think “well if it works for ali, then it will work for me” and i respect that you put it out there with such raw honesty that this is what is working for simon. god bless.
I think have mentioned this before, but I do a karate class for special needs children. The key being that usually they just need a stairstep to mainstream into a regular class. I have had countless kids on the autism spectrum. Every single one was and is different. Breaking sterotypes around the board. Some with sensory integration dysfunction, some who are stemming constantly, some who run up to me in the middle of class to scratch my back in case it itched. (and yes thats true, thats how sweet this kid is) One thing I have learned from all these kids….they are all different except one thing…they are all hard workers…maybe because they have always had to work a little harder to accomplish things. I think it is so valuable that there is so much interest in finding causes and cures but I am so glad that you pointed out there is no one way. Just like I tell my kids in class “We all have things to work on even big people” If you look at the kids they don’t want to judge one another they just want to understand.
Oh and Im super jealous that you were able to meet Obama…man thats awesome.
A beautiful, sensitive, poignant entry – what a gift you have given those of us who read your blog and those of us who care about children. As a teacher who has known many wonderful boys and girls – each unique and amazing, those labelled and those not, I am inspired by your way of looking at things. I initially started reading your blog because of your “life artistry”. I continue to read it because the inspiration I glean from it touches me in so many ways. Thank you.
Hi Ali, Chris and Simon
As a mother of a child who has Aspergers, Sensory Integration Dysfunction and an anxiety disorder I would just like to say how much I enjoy reading you blog (as I have done for some time now) and gain much information and inspiration from you all. My son was only diagnosed last year at the age of 8 so very late and every day is a challenge as he is so unpredictable but like you I love him to bits and celebrate his uniqueness and incredible talents. I also have another younger son who has none of these issues and he is such a great brother and son and is so understanding of his big brother. I am very lucky to have them both and to be able to capture their life through photography and craft, and also to live in Sydney Australia where it is hard to feel anything but blessed. Just wanted to say thanks for sharing your life and loves with us all.
Cheers
Jane
Thanks for having the courage to put this out there. I know it feels scary to open up about these topics – but it needs to be said.
thank you!!!
Ali- As a parent your words “every child, with autism or not, is unique” are what bond us all together. Weather its health issues or education or emotional issues each of our children is a unique being and as Mom’s I think we can all empathize in the struggle to find what the best course of action is for our individual child. Thank you for putting into words for all of us parents (living with autism or not) that life is a day to day journey.
Hey Ali, as a son with ADHD I know the struggles a mom with a ‘not so perfect’ kid can endure.
YOU are the best thing for Simon, he’s so lucky to have a mom like you. Hang in there I know it’s a struggle and although I may not have faced the same struggle as you it’s been a difficult journey for us too. Especially for my DD who has to figure out how to deal with the ever changing moods of her brother! For the first time ever my son is doing tremdously in school (8th grade) and seems to have taken ‘ownership’ of his illness and learning differences.
You’ll have your highs and lows as I’m sure you know. Hang in there! I think of you and Simon often (and Chris of course!)
Ali,
I can not imagine what it is you and Chris have gone through and have yet to go through where Simon is concerned. He is so lucky to have two loving and caring parents that are so willing to strive and look for anything new on the subject and willing to try new things out just to see if they work. Maybe someday the answers will be found about how and why Autism is hitting our children, but until it is, my prayers and thoughts are with your family and all the other families that deal with similar situations on a daily basis. God bless you all!
Each time I visit, I’m inspired by your posts — from pumpkins to your rational and eloquent approach to autism. You amaze me.
My 9-year-old son is on the spectrum, at the high-functioning end, officially diagnosed last year. I think “highly functional” is so often misleading. He’s highly functional when he’s on the GF diet. It was when he went off the diet that we pursued the conventional medicine approach and landed at our diagnosis. When he was exposed to high amounts of gluten during a vacation, he became almost catatonic. It was scary. I’ve always approached health issues via alternative medicine. When his “quirks” developed — not being able to tolerate the vacuum cleaner or someone touching him — I took him to a naturopath who suggested that gluten was affecting his auto-immune system and neurological function. Off gluten he was fine. So I came into this journey through the back door, so to speak.
The MMR? You’re so right in saying that it’s different for everyone, even those who don’t have autism. The one-vaccination-for-all approach probably does need close examination. I noticed more sensitivity issues after the MMR and, oddly, that my son no longer is bitten by mosquitoes. Sometimes I think, “Should I write the CDC about the mosquito dilemma?” Honestly, he would get covered in bites anytime we took him outside, but only before the MMR — ever since, absolutely nothing. Hmmm. As you said, each child is unique — and thank you so much for pointing that out!
Ali- wonderful words of wisdom. thanks.
Thought-provoking, respectful and very well-balanced… your post is perfect, Ali. Thanks for sharing your thoughts, and be assured, from someone who has walked along a similar path as your family, I think you and Chris are doing a wonderful job for Simon. He is a lucky boy, and you guys are pretty darned lucky to have such a great guy.
I am passing your blog onto my sister-in-law who has a five year old daughter (Anna) with autism. My niece is such a blessing to us all. Thank you for sharing your life with so many people. Much love for you and your family.
I agree with the, “Simon is awesome” part – that’s about all I am absolutely sure of on this subject!
His smitten Aunt, Liz
Hi Ali… I always enjoy so much your sharing your son with us in the scrapbooking world. He is an awesome example of a sweet loving child. Autism is a part of him and I love that you take the heartaches and triumphs and give them a voice by putting them on your blog. I have the greatest admiration for all the families that live with autism …thank you for giving so many a small peek at the delight your child brings despite the challenges. Thank you also for all the helpful links to areas that may help others.
I have two children, both have had most of their shots. Ultimately, we felt that it was a wise decision to better protect them from more serious illnesses.
However, we did have a bad reaction with our second’s four month old round of shots, that totaled seven vaccines at once! The reaction was frightening enough that I would not do the whole round of shots again at his six month check-up but opted instead to do one at a time. Thankfully our doctor was open to whatever we wanted to do and never pressured us to get all the shots at one time. What a difference getting just one at a time! I wish I’d done it with my first. It makes for a lot of trips to the doctor’s office but no fevers, no sleepiness, no fussiness, no lack of eating…zero side effects! (When my son had his four month shots he screamed for hours, his leg blew up, he slept for 12 hours straight and I had a hard time waking him…very, very scary!)
One shot at a time has been amazing…And if there had been a reaction we could have better tracked which vaccine was causing the problem. Personally, I think they give too many shots at once and for some children, I believe it can be dangerous.
Completely my opinion, based on my experience. It’s obviously smart to discuss options with your own doctor.