Ali Edwards Capture life. Create art.

September 24, 2007

Today is Monday + thoughts on Oprah.

Pumpkins

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.

Comments

  • 1.
    cheryl said…

    As the Mother of 4, I read your blog as a crafter,I am inspired by your journey as an artist,mother of Simon, Wife of Chris, for all
    that you share, day by day, I say…
    Cheers, Ali.
    You are an inspiration.
    Life Artists Unite.
    Be Blessed.

  • 2.
    Taylor said…

    Hi Ali,
    Have you and Chris tried Applied Behavior Analysis (ABA) therapy with Simon? Being a parent of a child with autism, I’m sure you have probably heard of this/tried it or other specialists have probably recommended this to you. I have used it in treatment with my patients with autism and other PDD and have found it to be fairly efficacious. It has received extensive study and has demonstrated especially promising results for promoting language development and appropriate social behavior.
    Just thought I would throw that out there.
    May God bless you and your family.

  • 3.
    Cate said…

    Simon is so lucky to have such great parents! I would find it all so overwhelming, but you take it all on and forge forward like a trooper! You’re definitely an inspiration to many others!! Hugs!

  • 4.
    Marlene Chamberlin said…

    wow, what amazing parents you two are.. You are doing eveything for the little guy and promoting awareness is the biggest thing ever!!!!

  • 5.
    JoAnn said…

    you are amazing, and you are so well spoken. having a platform like this with so many readers gives you a unique opportunity to share your views with many people from one subpopulation that almost is completely made up of women. congrats to you on always thinking about your words. you use them, and their power well- and we are all lucky to hear them.

  • 6.
    Tran said…

    I watched the show last night (when I should be sleeping and getting up early for work). I thought it was interesting. Her book will be on my “to read” list. My boyfriend’s Uncle has a child who has autism. They did some sort of blood test for allergies and sticks to a very strict diet. That was the first time I ever heard of the concept (about 6 years ago).

  • 7.
    Lynn said…

    Ali – I wanted to say good luck with the week worth of menus! I have wanted to try that so many time but there is always one or two days that the kids (6,5, &3) will not eat or can not eat.

  • 8.
    melissa w said…

    Thank you Ali. I do not have an autistic child but I do have a Bi Polar one. I know they are different but thanks for the feeling I am not alone on this journey of raising a child that is not the norm.

  • 9.
    Dawn said…

    I so respect and admire your courage.

  • 10.
    Brenda said…

    Hi Ali,
    I don’t really know you know you but you are Ali Edwards so to crafters you are a friend. I had a chance to sort of meet you and Simon from Colorful Creations with Donna Downey this past Saturday. I think Simon is such a Gem and you are such a Jewel! You are Blessed with each other. I appreciate that you use the forums you have available to teach and educate us about Autism and about just genuine pure untarnished love. You are Beautiful! We have all learned a lot of crafting ideas from you but so much more. Thank You for sharing who you are with the rest of us!

  • 11.
    Deb Wisker said…

    As always, very well said in a very dignified and insightful way. I am passing this on to my sister who has a daughter who is Simon’s age, is also autistic and a beautiful, beautiful little girl.
    Thanks for being the person you are. You will be leaving quite a legacy behind, whether you know it or not.

  • 12.
    Melissa said…

    Ali, thank you for sharing what it is that you are doing to make your life with Simon the best that it can be. Like you said, each person/diagnosis is different and there is no one thing to make everyone better. That is the journey we are to take in life, to learn from each step forward and backwards, to embrace each unique trait, and most of all to enjoy it. You are an inspiration to do just that. Thank You for being so open and honest with your personal story. It truly is an education.

  • 13.
    Stephanie said…

    I think you are one awesome mom and dad to Simon, Ali and Chris. And I bet you are right – he is one awesome little kid. Darn cute too! Thanks so much for sharing this part of your life…it is truly touching.

  • 14.
    Karen said…

    My kids have been lucky enough to go to a govt primary school that specialises in both gifted kids as well as kids that require one on one help and small class environments for those who find school a challenge. Both groups are also integrated throughout the school classes so that they are not made to feel outsiders. It is interesting to talk to parents of these kids as a wide variety of strategies (both behavioural and dietry) that help keep balance in their lives.

  • 15.
    Kristina said…

    Thank you for sharing your experiences and thoughts in such a compassionate way. You and Chris sound like wonderful parents and of course, Simon sounds like a wonderful boy.

  • 16.
    Lisa Spiegel said…

    Ali, thank you so much for sharing your very personal journey with all of us blog readers. There are so many people who have benefited from your honesty and thoughtfulness. Simon is so lucky to have you for his mom (and Chris, too!).

  • 17.
    greta said…

    peace, indeed!
    Blessings to you
    and your beautiful family.

  • 18.
    KellieC said…

    Hi Ali,
    I think you guys have a great viewpoint. You are parents wanting to do the very best for your child to improve his life as much as possible and you are open to exploring suggestions and possibilities. I think your comments here show an intelligence and patience that is commendable.
    We have a daughter with Cystic Fibrosis, and, as you explained with Autism, no two suffers are the same either. Like you, we are willing to explore new possibilities,but it is often frustrating when sometimes, there are no real answers and lots of guesswork.
    I’m sure Simon benefits greatly from having such loving and dedicated parents!

  • 19.
    Peg Graham said…

    Ali- after watching Autism Speaks first, then seeing Jenny on 20/20, my husband and I realize that our 3 yr old son, Porter, might be in the Autism Spectrum and is being overlooked, due to someone with not all the knowledge labeling him as just Developmentally Delayed….since he also has other conditions such as Hyphohidrotic Ectodermal Dysplasia (w/ a B cell dysfunction).
    I don’t want him to miss the opening for all the Early Intervention he needs. Right now he has Special Ed Teacher for only 1 hour each week…since he is ‘home bound’ due to his central line and over heating issues.
    Any suggestions are welcome! We love reading about Simon and his wonderful growth. Rock on girl!
    P.S. Porter’s story is long, but if you ever have a chance..please read some history about Porter here on my blog link: http://pegola.typepad.com/photographs_and_memories/porterhealth/index.html
    HUGS!
    The Graham’s

  • 20.
    elizabeth said…

    We had the pork + apples/leeks tonight from Everyday Food and it was fantastic (and wildly easy, even for someone like me who would rather do many other things besides cook dinner).
    I like the idea that if you’ve met one kid with autism, you’ve met one kid with autism. That’s a pretty good reminder for meeting anyone!

  • 21.
    Nadia said…

    bottom line, your awesome little kid has AWESOME parents! give him a hug for me!

  • 22.
    Cathy said…

    great post ali and chris.
    just want to wish you and simon love.

  • 23.
    Megan said…

    Ali
    One of the things that happens as you move through this life is that you come to realize at some point that there really is SO little in life that is one-size-fits-all. Really, all we can do is educate ourselves and always be open to WHATEVER comes along, and try to view it as just another fork, rather than a roadblock. You are really doing wonderful things for those of us with no direct autism connection…I find myself seeking information “just because”…and who’s to know I will not need it someday. I do know that the whole subject of food allergies by-and-large is under-studied in infants and children…My own kids had several issues that were rectified by my self-education on the subject. Thank you for putting your newly-learned info out there, and thank you too for encouraging kindness in the discussion of it all. You are one awesome mama. :)

  • 24.
    Cindy said…

    You always speak so simply but eloquently about this issue (and others). It is clear that yours is a voice from the heart and soul. Thanks again for sharing.

  • 25.
    Amy Zarrella said…

    (((hugs))) and so much respect and love to you and Chris and that little dude!

  • 26.
    dbugsma said…

    we are just entering the journey…the road is confusing right now, not knowing which way to go.
    thanks for the information.
    thanks for being open about your journey.
    thanks for sharing it all.

  • 27.
    amy said…

    Ali, you and Chris are probably some of the most fantastic parents, and your outlook on life and what it brings is so inspirational. Simon is one lucky little boy!

  • 28.
    angela said…

    Ali, i just want to tell you that you inspire me, both with your artistry and your parenting. i am so glad you do not hide for days :D
    angie

  • 29.
    Mary Jo said…

    As the mother of a son who was diagnosed with Sensory Integration Disorder, my main goal has been to help him be as successful in life as he can possibly be as well.
    Although upon reflection I think that would be my main goal no matter what for any of my children. There are so many things to be fearful of these days and I don’t want to get to caught up in worrying, worrying, worrying. Hard not to some days though. Recently, I am just trying to stay as positive as possible.
    Thanks for the link to the recipe! I liked the looks of several of the recipes I saw actually :0)

  • 30.
    Beth said…

    Awareness, awareness, awareness. Thank you Oprah and thank you Ali.

  • 31.
    Heidi said…

    Seems like everyone is talking about this powerful Oprah episode. Kudos for these people for going on public tv and telling there stories. It sounds like it touched many people. And one thing in life is, we are never alone, though it may feel that way. Thanks for being so open about your trials and good times.

  • 32.
    Laurie said…

    Ali,
    I am so inspired by your outlook on autism, Simon and everyday life. I love that in the end it is not about autism, but about Simon. While my son does not have autism, but a rare neuro-genetic disorder, everything I do is not about the syndrome, but about him. I love how you say that you are just two parents trying to do the very best you can for that amazing little boy! I wish more parents would understand that instead of entering into a nasty debate about whether vaccinations are okay or not. Each parent needs to make their choices based on their child and the information they have. When our son was first diagnosed, I spoke to you and you really gave me a great way to view a lot of the information that was streaming in about our son with evaluations and all. Thank you so much!

  • 33.
    Deirdre said…

    Well said. I enjoyed the Oprah show on the topic, if only because it emphasized listening to the parents—for mothers to listen to their own gut feeling, for doctors and teachers to listen to the viewpoint only the parents can provide.
    I have two first cousins who each have a son with autism. One has always said from the start, “We lost him the day of his MMR shot.” I don’t know if it contained mercury or not—my sense is that for some immune systems, for some with a genetic predisposition, at 18 months that shot may just be too much.
    Of the two boys, one has made amazing progress and is able to communicate and attend a mainstream classroom, while still dealing with daily challenges. The other beautiful boy has not made that kind of progress. I know both families have used every resource available to them, have put all their energy into helping their sons.
    You got it exactly right: every child (with austism or not) is unique. As parents we all struggle to figure out what our children need most from us. I love the sharing of stories and information, especially when offered freely, without pressure or judgment. You do that so beautifully here. Thank you.

  • 34.
    pennythequeen said…

    I taught children with autism for many years. I just love the way they look at the world and see it in the truest of ways. They are incredibly bright and full of knowledge. I miss teaching them, Im in 2nd grade now.
    What wonderful parents Simon has been blessed with, he is a lucky little boy.
    May the peace of God be with you all.
    tootle loo,

  • 35.
    maryjo said…

    you are an incredible person. peace ali. xo-maryjo

  • 36.
    Heather Ales said…

    Ali, thank you so very much for sharing so much of your personal life with us. I gave birth to a beautiful boy, 5 years ago today, and placed him for adoption – with the most perfect parents for him. He was diagnosed this past year with Asbergers Syndrome. Reading your blog has given me a small glimpse of what they (his incredible parents) may possibly be going through as they work to finding a solution for his learning and growing. Thank you for sharing your thoughts, opinions, and feelings. Though I don’t have any children of my own, reading about the path you and Chris have chosen to take with Simon helps me feel included in my sons life.

  • 37.
    heatherle said…

    So glad that autism is being spoken of now more and more. So much work to do. We had K registration and assessment interviews earlier this month, and a child who had obvious physical signs of a disability came in with a future student. The child’s caretaker said that “He wouldn’t be able to do school” even though he was the right age! Just because he had some sort of spectrum disorder/neurological issue/something-something! Wish that people would really be aware of what is out there, and the only way the ever will be is if more and more people are open about life likeeyou a Chrrs. Kepp up the good fight!

  • 38.
    Susan Beth Breuner said…

    Ali -
    I do not have an autistic child, but I think you spoke beautifully for your child and all other children, autistic or not. Thank you for that. Our family has several opportunities to interact with families who have children with autism and many other conditions. We love them all. Our 7 yr old son is learning so much by these interactions, and children of all functioning levels are an enrichment to our lives. You are so right to stress how special each child is.

  • 39.
    Tara said…

    My daughter didn’t have autistic reactions to the MMR vaccination, but she did have a MAJOR health complication.
    At 15 months, we had her vaccinated with the MMR shot. Four days later, her kidneys were completely shut down. It seems her body had some reaction to the shot (or possibly an overdose of the vaccination) and her kidneys were slowly shutting down over those four days.
    She started peritoneal dialysis when she was 2 years old (through her abdominal cavity and I was able to provide her treatment at home while she slept). She had numerous hospitalizations for congestive heart failure, respiratory failure, numerous surgeries for catheter placements and removals.
    In May of 2006, her physician noticed that her blood wasn’t getting cleaned properly and we would have to start hemodialysis, which is where her blood is removed from her body and cleaned via an “artificial kidney”. She gets this treatment 4 times a week for 4-5 hour treatments each. The only clinic that will service her is an hour from our house. This is because she is a pediatric patient.
    In June of 2006, her physician decided that she needed to have both of her kidneys removed to see if we could regulate a high blood pressure problem that was arising. Unfortunately, it did nothing.
    In September of 2006, Eryn suffered a stroke and seizures. Her blood pressure got so high that her brain began to bleed. She was hospitalized for a month and a half and was released in fair health with some unresolved blood pressure problems.
    In December of 2006, she suffered another stroke. This one seemed much worse on all of the scans, yet she has had no residual effects of the stroke.
    She is currently awaiting a kidney transplant. She has been on the list for quite a while, but her “number” hasn’t seemed to come up yet.
    This has been very trying on our family.
    I understand (although not fully since we don’t have any problems with autism) what you are going through health wise with Simon.
    I’m glad to see you standing up for your son. You and Chris are the best role models that little boy could ever have.
    My prayers and thoughts are always with you.

  • 40.
    Susan Hessler said…

    Hi again Ali and family,
    I wholeheartedly agree with your conclusions. I found reading about Jenny McCarthy’s son difficult (I read about her in People) because nothing so far has made a HUGE difference for Nathaniel – and I’m a little jealous of their success, while completely wishing them every good thing.
    Every child is unique – struggling with autism or not. And, every family is unique. I am grateful for many things that are unique to our situation, and taking a life habit from you, Ali, here are some things I’m grateful for:
    Nathaniel is healthy and happy.
    Our big family, full of joy and good humor, and abundant love for each other.
    Friends who have found it in their hearts to purposely include our entire family in events and celebrations, even when that means hiding every phone in their house.
    Your blog and scrapbook pages, sharing that we all struggle, we all love our children, we are all human.
    And finally, hope. I close no doors for my hopes for my son’s future. I don’t know. But I hope.
    I wish Simon and Nathaniel, and every child out there struggling with autism, every good and perfect thing….and peace.
    Susan
    PS. Thanks so much for opening up your life and sharing with us. It is precious to me to be reminded from time to time that I am not alone.

  • 41.
    Jacquelin G said…

    This is such a difficult question. . . we are the parents of four children – two fabulous boys with autism – Ben who is 8 and has Asperger’s Syndrome, and Joshua, who is 5 (just started kindie!!) who is also on the spectrum with PDD-NOS. We also have 2 fabulous girls – Hannah 11 and Emily 7 who are neuro typical. Every day I feel blessed to have each of their unique selves as a part of our family – teaching me and helping me to grow and learn as a parent & as a human!
    They were all immunized – largely because I spent a great deal of time in Africa and saw first hand the consequences of a measles epidemic. Altho I try not to walk the path of “what if”, I do wonder if there are things I could have done differently before and after my guys were born that would have resulted in a different outcome for them. I have mostly come to be at peace with the fact that I will never know and my path for now is to raise these great kids and learn from and with them. That’s enough for me, for now. Thanks for your insight and wisdom!
    jacquelin

  • 42.
    bombaygirl said…

    Another beautiful and thoughtful post, along with a respectful disclaimer. I wish there were more bloggers like you. It is true…there is not one-size-fits-all cure here, and we are all just parents trying to do our best for our little ones. The blog owner sets the tone, and I love that all the comments so far have been polite and respectful back! Thanks Ali.

  • 43.
    Dalne said…

    I admire your commitment to your son and to the cause of autism. You have created so much understanding and insight by sharing your knowledge and personal experience. THANK YOU for sharing from the heART!

  • 44.
    Dalne said…

    I admire your commitment to your son and to the cause of autism. You have created so much understanding for and insight to this condition. THANK YOU for sharing from your heART!

  • 45.

    I admire you. Simon is lucky to have you. You are a great mother, a great woman and a great wife. I love to read you. I love to read your love for him, your respect for all of us and your faith in life.

  • 46.
    Giorgina Neilson said…

    Hi Ali,
    You continue to amaze me everyday I read your blog, you are able to cram so very much into life for the sake of what’s good you are an inspiration to me to keep on going. Please write a post on your Hypothyroidism, I suffer from Graves and find it very difficult in my day to day life.

  • 47.
    Lu said…

    Hi Ali, I’ve got yet more advice for you – I’m sure you’ve heard it all by now cos Lord knows as a mother of an autistic child I have!!! Just another thought about diet. My son Blayd is PDDNOS and we found the biggest improvement in him was to try him on a diet called FAILSAFE (free of additives, low in salicylates, amines and flavour enhancers). The site is http://www.fedupwithfoodadditives.info
    The diet was devised by a lovely lady called Sue Dengate and for us it was what saved our marriage, my son’s life (he was on medication that made him suicidally depressed at age 10) and our family in general. I had no idea that the very fruits and vegetables I was giving him were full of naturally occuring chemicals called salicylates that he is acutely sensitive to. V.hard learning curve but we did get amazing results and we know if we let that slip he goes right back to some extreme behaviours like head-banging, self-harm, social withdrawal and violent tantrums. Each child is so different so I know you’ll take what you hear with a grain of salt and do what you think is best which is what we all do in these circumstances. Just thought I’d add my two cents worth because I only found the FAILSAFE diet by accident and it could have saved us years of heartache so I figure it might be at least worth a try. Take care and keep doing what you do best. Love, Lu

  • 48.
    cheryl said…

    Simon is so blessed to have you and Chris as parents. I really respect you both for having the courage to speak on Simon’s journey. Thank you.

  • 49.
    Lanne said…

    Beautifully and thoughtfully written. We have not immunised my son (we live in Australia)… not immunising was hard.. really hard… I have had personal experience as a teacher with children who were affected from immunisations (not saying autism but def behavior modifactions and an apparent turning back in time of their skills and abilities).. it scared me senseless. Of course.. the diseases scare me too but 18 doctors later I am only here the blah blah blah not… answers to my questions.. not a supportive listening ear. Not an ounce of reassurance. So he remains unvaccinated…scary.
    Thank you for being such a wonderful advocate for SImon. You are all so lucky to have one another.. and congratulations on the shining star he is.. as a result of your love and patience.

  • 50.
    LaurenC said…

    I started reading your blog for artistic inspiration….and I find so much of that every day when I come here to read your words.
    But I never banked on finding inspiration for so much more. I don’t have kids myself, but I have a cousin with Autism and the knowledge you share here gets me thinking on so many different topics.
    You are more than an artistic inspiration. And you should never doubt that for a second. Thanks for sharing your life with all of us.

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