Today our long expected article about our family has hit the news stands. Sharon Cotliar, our reporter, originally called me 2-3 days after our local paper had an article about us. That was in June 2007. She visited with our family for 3 days the week of July the 10th.
In between then and December, when our photographer Ken stayed for 3 days, she would check in with us and assure us that even with various delays they were still very interested in our story.
We are VERY happy with the story and pictures. Sharon has captured us and our situation to perfection. Because of her limited space she cannot go into as many details as she would have liked, soooooooo I thought I fill in a bit more here.
First, any questions you have, please put them here. I will be compiling them to create a FAQ section on the main website: http://www.autismbites.com/.
The t-shirt Ammon is wearing on page 91 is of our own design, Robin did the face and I put the words with the face. We have a total of 30 different combinations. (See link for t-shirts to the left). We hope that by having our story told that we can:
1) increase the awareness and understanding of Autism.
2) from our example (we know we're not perfect) that it can give hope to other parents struggling with their marriage and children.
3) jump start our efforts to create our AutismBites Foundation. The goal is to help put funds directly into parents hands for whatever, without a lot of red tape and hoops to jump through.
4) since a lot celebrities read People also, we're hoping some will step forward to help with our fund raising efforts for the AutismBites Foundation.
Well, got to go, four of the children have been sick this week and now Robin is not feeling well. We'll do our best to update this blog and add addition info to the website that my sister-in-law is helping me with.
Dad
Friday, January 25, 2008
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40 comments:
My name is Amanda. I just read the article in People Magazine. I just want to say thank you so much for sharing your story. I cried reading the article. Especially when I saw the picture of your husband hugging your little boy. The picture reminds me of my daughter and how sometimes I just hug her tight, because it's all I can do. I too am an LDS mother of a 3 year old with autism. My husband is in the Army and has only been home fromt he time she was born until she was 6 weeks old, and again from when she was 13 months old-26 months old. He is overseas right now and due back this summer. It is hard, because he doesn't know her well. I am used to having to explain her to neighbors and strangers, but I will tell my husband about what a tough day we had, and he will say something like, "Well don't let her do that." Don't you wish it was that easy? Friends who tell me their 1 year olds know better, and why havent I taught her not to do this or that. I teach all day long, until we fall into bed exhausted. Anyway, it is just ownderful to read your blog and know that if there is anyone who understands this, you guys do. I am not alone for once. It means so much that you were willing to share. Have to go! She just poured her juice over the baby's head, lol. What can you do, but laugh, right?
I just finished reading the article of your family in People. I am an ESE teacher in Florida and teach a few students with Autism that are in an inclusion setting. They are the reason I love going to work each day. I admire their parents and teachers and families that are part of their lives. Thanks for sharing your amazing story with the world. YOU ARE AMAZING!!
I just wanted to let you know of a fantastic book that you may be interested in. It is called Gut and Psychology Syndrome by Natasha Campbell-McBride MD. It talks about how most children with Autism also have problems with the flora in their digestive track. They need more healthy bacteria. I am finding this book fascinating and very helpful.
Read about you in People. I have three boys with ASD diagnoses (8, 6, and 4), a 3 month old baby girl, and a disabled husband. Everyone tells me they don't know how I do it. I tell them I don't know either.
You guys are my heroes!
Thanks for you comments:
Amanda-I too cried at the Albertsons when I picked up out first copy yesterday. Our photographer took lots of pics and that one of me holding Ammon after his bath got me too. If you husband needs a Dad's point of view have him email me at autism_bites@yahoo.com
focus-amazing...well we just try to make it through each day. Thanks!
Amie-I'll check it out
Kate-we hear that one too, the bottom line is we have to. Thanks, you are a hero too.
I just read the article in People magazine. Wow. I was blown away by the story. I'm so glad that you have shared your story with the world. I've been Bobby's fan for quite some time....watching how he has raked your neighbor's leaves, shoveled the snow, etc. He's terrific. And you folks are terrific for your great attitudes. ("God, forgive me when I whine....")THANK YOU!!!
I just read the article in People Magazine and I also want to say thank you for sharing your story. Many people who don't have autistic children just don't know how to relate to those of us that do. My son is 15 years old and has Asperger's. I only have one child...I just don't know how you can handle things with 6 children but the fact that you do and seeing the article really gave my heart a huge lift. I was married to my son's father for 10 1/2 years before we divorced because he just didn't know how to deal with our son and the fact that he's not like the other kids. I was married to someone else for a couple of years after that but that marriage collapsed also because he didn't know how to deal with a "special" child either. I was beginning to feel like it's just me and Dylan (my son)...alone in this world...until I saw the magazine article. I know that Dylan was put on this Earth and given to me for a very special reason...to teach me how to have more patience and tolerance. Some days it's not so easy (like today...I woke up to find my house a mess...DVD's all over the living room, Cheerios all over the floor and the kitchen chair...the house pretty much a shambles. However, when I imagine my life without my son, I would rather be picking up Cheerios and straightening up the house every day then having a life without him!!! Just hang in there! With all of the wonderful posts/comments that you all have gotten, at least you know that you're NOT ALONE in this!!! Thanks so much again for the WONDERFUL article!! Sincerely, Cheryl O'Connor
hello
My sister called and told me I should go to this web site. My husband and I have 2 boys 5 and 3 our five year old has ASD and my 3 year old they say he is likely on the spectrum somewhere. reading about your family has given me the strenght to know that i can do this. Thank you
Hello Kirton family,
I read the article in People magazine just a few minutes ago, and let me tell you, It brought tears to my eyes. I should get on my knees and thank the Lord that I only have one child with autism.
Both of you parents are to be commended. You obviously love those kids, and also have a strong bond with each other. That's wonderful. I too have a strong bond with my husband, and he and I usually are very compassionate, and also agreeable on most of the issues that come up.
Our son is 13, his name is A.J., and he keeps us hopping, up and down, constantly. If he's quiet, he's usually tearing up things, throwing things (that are NOT his) away, pouring things in the drain, or worstly, throwing poop up on the ceiling or out his bedroom window.
He is not bowel trained, we have been working with him on this, and he is stubborn in this department. Other than that, he is such a joy to be around, funny as hell, and constantly makes us laugh. He can talk, though not in conversation. He is totally echolalic, but for the most part, fairly easy to understand. He has his favorite foods, clothes & music cd's & dvds.
I think this site you've created is FANTASTIC, I will send a link to it to everyone I know. Have you thought about having your story told in a book? I wrote one, which now can not even hold a candle to your story. I hope you do, I would love to read more. In the mean time though, I'll log on to your blogs each day to see what you've written.
Your children are beautiful. Before I go, let me add this one thing, maybe two. When my son was first diagnosed, and I was in a fog about what to do next, where to go, etc.... I remember one thing someone told me.... God doesn't give anyone a challenge like this, if he doesn't think they can handle it. Also, God gives special children to special parents. Well, he must've thought you two were special x6. God Bless all of you.
Keep up the good work
Ness
Aaaahhhh - THIS is why I'm suddenly getting so much traffic from your blog! I'm off to get a copy of People today! How exciting - you're celebrities!
Just read your people article and jumped right on your website. I was so excited to see your t-shirts! I have been in countless situations where I have looked at my 8-year old daughter and asked her, "don't you wish we could just carry a sign around that says your brother has autism so that maybe people would stop staring at us like that?!" I also cried at the article - finally somebody has the guts to say that they were put on this earth to love their children. It was nice to read an article that was focused more on that then what to do, what to do, what to do. My husband and I went through some tough struggles when our son was first diagnosed and because I always feel like I NEVER DID ENOUGH FOR HIM and that he should be doing better, those articles always make me feel guilty. But thanks to your story and what you have gone through with the courts taking your babies away for a comment (which we all know we sometimes feel like venting) you have just made me feel so much better. Thank you so much for showing a more human and loving side to the parents of children with autism. you have truly made my day
By Gary Neuman
I know what's important now.
I've taxied children to violin, swimming, piano, baseball, hockey, and parties.
I've run through the streets drenched with sweat, holding the back of a childs bicycle.
I've jumped with sheer joy when I let go, and saw the bike continue on it's own.
I've had children's songs race through my mind for hours at a time.
I've romanticly danced with my Wife to Barney tunes.
I've built castles, pizza, tunnells, and mud pies at the beach.
I've pushed a swing a million times.
I've cupped the small, warm fingers of my child in my hand.
I've crept into my children's rooms to watch them sleep.
I've found my shoes fifty feet from where I left them, filled with little men, pennies, and tissues.
I've made my children cry, and have cried for them.
I've read the same story no less than a thousand times.
I've dressed moving targets.
I've checked for monsters under beds and in closets.
I've spent nights with bottles, medicines, sheet changes after accidents,
diapers, and hugging scared kids after nightmares.
I've changed over three thousand diapers.
I've gotten goosebumps from watching the smiling faces of my children.
I've stayed in the most luxurious hotels alone, dying to get back home.
I've prayed.....A lot!
Now, don't get me wrong, there have been moments when I've dreamt of luxurious baths and exquisite sleep with a quiet, long breakfast while reading a whole dry newspaper.
I've remembered having money in my pocket.
I've longed to be bored.
I've wished that kid would stop poking me in my sleep.
But I am a Parent, see, and I know what's important now.
Congratulations on the article in People's Magazine. I am so happy that you are telling your story and letting people know of the love that you both have for your children.
I am a grandmother and caretaker of 2 grandchildren diagnosed with autism spectrum disorder as well as both having bowel issues and the oldest (girl age 7) with asthma recently. Dad is in the Navy and was gone when daughter was diagnosed so mom came to live with us as she was expecting her second child. Little miss was diagnosed by Child Find and is also seeing a developmental pediatrician. We felt our grandson was doing well then it seemed he began to show symptoms at the age a little before the age of 2 of autistic spectrum disorder. He speaks yet does not talk to us. He is very aggressive and has violent terrible tantrums including hitting kicking and tearing at us. He has started having staring seizures. I get so tired of people staring at them when they are out but when I see them they are beautiful, unique, children that were dealt a pretty difficult hand. We love them, we will do what we can to help them, but I feel not enough is being done to find help for parents and families and the children without fighting tooth and nail for every little thing. I plan on buying the tshirts they are amazing! I know at times people must think we are harming the children when they begin screaming due to fears (thunder, pans clattering, balloons popping, or simply ill temper that day) The oldest is coming along so great at school and attends and autistic only class that has proven to be a gift as she is communicating more, is fully toilet trained, and has shown she has quite a gift of singing and artistic and is amazing with a computer. Our little guy is 3 and he is very delayed mostly because the military is not the quickest when it comes to getting referrals out and he suffers for it. He needs a lot of services but we do what we can..and yes we get annoyed with them, we get frustrated with them, and we need a break sometimes! We are all human after all. However to imagine them not being with us is unthinkable. We tried for SSI for them but mom and dad were told Dad makes too much money in the Navy (HA thats a laugh) They need so much that we simply cant afford. Their mom works 2 jobs to try to just get essentials and wants them on the Gluten free diet but its so expensive. Her sister, who has Down Syndrome..cosmic dice strikes again.. is on it as she has Celiac Sprue so Im really capable of knowing what they would need. I look at your family and think what an amazing couple you are and very real. Its such a joy to know there are people out there like us who are not trying to be anything but the best parents and grandparents we can. its so important to have a support network for parents and families of kids with autism. No one gets "it" unless they have been there or are there. Bless you all..Bless ALL of us!
SOOO excited to hear about your family. We have 7 children, 4 are ASD. It is so nice to hear of other larger ASD families. I haven't read the mag. article yet, but will very soon! Blessings!
I was wonering what type of therapy/remediation you do with your children?
(I am a mom to 3, my middle was dx'd with severe autism in May'05. He is making amazing progress)
I think the story in people was wonderful.My son was diagnosed 2 weeks ago with pdd-nos.He is two and a half.I wsh all of you the best of luck.Also the t shirts are great i had to get some they are perfect for him to wear when we go out and get the stares!God bless
Thank you for your wonderful story. You have 6 amazing children with many abilities. Yes, I said abilities. I am a special education teacher and have a background in teaching children with autism. These children see the world through different eyes. I worked with a student who was non-verbal but if you tapped a tune on his leg he would hum that tune. Amazing child he was only 3 at that time.
God has a plan for you as parents and for these children. Be strong and place your faith and trust in his hands.
In Christ Love,
Lisa
I am so glad that you were published in the magazine. I bought the magazine just to read your article. I have six children and two girls with autism. I read your article and kept telling my husband, " See, they are just like us!" I have cleaned up so much feces from walls, put sheets on over and over, and finally, we screwed curtains on a piece of board with 8 screws into the wall so they would stop pulling the curatains off of the window because they would never keep their clothes on. I feel for you and wanted to reach out and touch your heart with the biggest hug I could find as I know the pain every day of waking up to autism. My oldest has been diagnosed now for 5 years. She is medicated and without that medication, I personally think I would lose it because she is very manic, violent, and just unmanageable. My second one has been diagnosed now for almost four years. She is so sweet and I hate how autism has stolen her away. She didn't used to be theway she is now. But I love them so very much. I would just die without my children. They have taught me what matters most - the little things. The victories. They have changed my and our lives for the better.
If I could write to you all out there everyday, take courage and know that everything is for a reason. We don't understand it now but we will better by and by. Though it hurts so much at times, and you may cry in the private place in your life, God makes no mistakes.
Caregivers - please take out some time even if it is 10 minutes and so something for you to revitalize yourself to love some more.
Mothers and Fathers - don't beat yourself up for the mistakes we make along the way, just keep moving forward!
I'm a retired teacher and just read the article. You are doing a wonderful job!! I just think more help should be available to you. Does your Church help you? You do so need better housing. Is there no agency that would help you with housing? Would someone in the Church have a better house for you? How about Home Help from the School District? Please go through the phone book and call every agency that could possibly provide you with help and ask the Church for help.God bless you!
Read the article in People Mag and I think you are living saints!Maybe going on welfare would benefit you-you would qualify for Sec. 8 and HUD housing and lots of other benefits and Dad could be home. I mean this very sincerely. The 3 youngest kids need to be worked with in the home. I pray to God you get all the help you can.
I read about your 6 children with autism and laughed its such a breathe of fresh air to see that not only am I myself going threw these issues but as well my best friend and she has a boy that is 8 and boy its intertaining at times and down right hilaroud to watch her with him. He throws his toy duck in the skillet while she is making tacos and then when hes done doing that its onto the hext thing to tear the hell out of and that would have been her coach which is rested in peace at this time.LOL But her walls and floors have all ben destroyed by him he is eight. He now gets under the bed in the morning and hangs onto the bed post and she is underthe bed for a half a hour trying to get him out. Its so so funny. She to makes a joke out of it and people look at her like what in the world lady? One morning he also did not want to go to school and locked her out of her car. I laughed so hard i cried. But now he is as cal, as it gets she has found new meds that are working for him.
But god bless you both. You have such a wonderful husband Robin.. He is i mean that. :)
Darlene, Kansas
You have a great site! I just read your People article and had to check your site out. I read your posts and just have to shake my head and laugh with empathy. We've got 5 kids, 4 with ASD's, 1 with ADHD. Thanks for keeping it real and giving other families your wonderful perspectives. I'll be adding youtomy daily reading. When I have the time which is usually after 10:00 - if the 4 year old sleeps. We've ended up using Benadryl to regulate her sleep patterns per her doctor's advice and thank you Lord for the miracle of medication and a goodnights sleep.It's amazing how much better one can parent when you've got 6+ hours under your belt.
Take care!
I just saw your article this weekend, and had to visit your site. I have a 4 1/2 year old boy with PDD-NOS (possibly to be upped to autistic disorder), and a 2 year old boy who is going to be evaluated soon.
Good bless you for being great parents to your kids! You are inspirational.
I also read the article in the People magazine. I went back and read your blog from the beginning. I laugh that your 11/20/07 post asked for comments...you have your hands full of comments now, I'm sure!
I wanted to say that I truly appreciate your honesty and candor in your blog. Not everyone can open up their lives and their family so candidly for the world to see. I love that you write your entries the way you feel them...with honesty, humor and humility. I do not have kids at present but when I do, I hope to have the love and laughter that your house holds.
I have seen the lengths a parent of an autistic child must go to in order to keep their child protected and safe. I can only imagine what it must be like taking care of six. I wish you all the luck (and praise!) in the world.
Your family is amazing. I read your story and it truly touched me. Your family's spirit is so strong and if not in this life, in the next each one of your children will be made whole and will thank you for all of your sacrifice and love in their behalf. May God bless you with the strength and courage to find joy each day.
I just finished your article in People magazine and had to come check out your site. I have a 6 year old son with autism. He is non-verbal and not even close to potty trained. He is also a destruction machine. There are no curtians in my house because I gave up after he tore them down a million times. I just wanted to say that reading about your family touched my heart and made tears roll down my face. My heart aches for you and the challenges you face, as I know the struggle with just one child with autism. I send love your way.
Kirton's you are an inspiration. God please give you strength and courage and peace.
Thank you, thank you for getting this information out there. I have 3 children, my middle one has ASD, as well as profound hearing loss in one ear, and speech apraxia. He is my hero. I am so hopeful now that Autism is making more and more headlines, and it seems more research is coming to light.
I just read your article in People magazine. Its funny because i dont usually buy it. It seems like there is so much emphasis on autism now and maybe that is because i notice it more being a mother of a four year old autistic son. my husband and i have both been reluctant to put the label of autism on our child. but i feel that stories like yours do help. I never feel sorry for my sons condition and i dont want people to look at him with pity. I hate the looks people give us when he does one of his quirky little behaviors but I never say "sorry hes autistic,"though I say it in my head I cant let that be an excuse for him for the rest of his life.I commend you for your bravery and positive outlook on life and can only imagine what it must be like to have 6 children let alone all with some form of autism. Nephi is the one who reminds me most of my little guy. even in his pictures i see there similar mannerisms. you have a great looking family. keep on keeping on and goodluck with everything.
Wow! Your story is an amazing one! I cannot imagine the day to day struggle of parenting your children! My son has autism; we've been dealing with the day to day realities of autism for close to 6 years...I soooo appreciate what you are trying to accomplish through your foundation! Truly, I don't think there are other foundations doing the same thing: most of them are all about research. Which IS great, b/c a cure would be FABULOUS; but, there are soooo many families struggling with the financial realities of autism. We have a 2nd mortgage on our house due to it...and we just have one child...I cannot imagine the struggle you face. God bless you!
My oldest child was just diagnosed with Asperger's syndrome. I was so excited to read about your family in People! I'm always itching to find anything I can on the subject, and it was enlightening reading the article about your family. It's amazing how you guys make it work! Congratulations to you on your family, which is beautiful, and the wonderful work you are doing! Thank you!
Dear Hope4jackson:
You are sooooooo right, most people have no clue that Autism is financially DEVASTATING for family's. I'm sure that if we had a mortgage, we'd have a second one too by now. Tell anyone and everyone about our AutismBites Foundation. We NEED to get it going. For the better of Autistic family's AND for the good of our great country. Good luck and may God bless!
As I was in my son's therapist's office today, I read the People magazine article. I can't tell how much your article touched and helped me. The most interesting was about autism could be linked with missing a piece of a chromosome. I have chosen not to have anymore children because it is very difficult raising my son (PPD-NOS) and I'm afraid that I could be the one that passed this disorder to him. But I will say that I am an advocate for my son, as well as, other autistic children. Thank you for sharing your story and showing the world that our children are great, too.
Yes your story is tragic, but why did you continue to have children if this is such a burden to you at times? My mother has been a caretaker for my brother for 52 years, he is in a wheelchair, has asthma, cebral palsy. He has become violent with each of the family members, but she doesn't complain or ask for handouts like everyone else! She has to change diapers on him daily, give treatments, cannot leave the house unless someone is there with him....but she doesn't whine like the rest of you! Suck it and get some birth control!
I think your family, your website and your entire outlook on the world is beautiful. I am the mother of a three year old boy who has autism. He is such a blessing. I know just what you mean. I honestly feel as though I am looking into heaven when i look into his eyes. the autistic mind is an amazing gift that teaches the rest of of how to live better. But, there are parts of the day, tantrums, terrors, and confusion that I am working to releive my son from. Last year, at 2, he completely lost language, hand flapped, stred into space. screamed all night long etc.... I then discovered the bodyecology diet at www.bodyecologydiet.com, which we have been on for just over a year. his progress is phenomenal. I also discovered that many of my ailments Candida, joint pain, exaustion, digestive disorders were all related to my son's autism. we both follow the diet and have impeccable energy, mental clarity, and much less stereotypical autsim behavior. The diet focusses on the gut brain relationship (you can look at Gut and Brain psychology Syndrome by Dr. natasha campbell mcbride) body ecology heals the gut do thatthe brain can heal. we are so happy with it. We are in a completely different place than we were last year.
I am also a part of a support group called BEDROK www.BEDROKcommunity.org. the mothers on this board have carried me through our journey toward recovery.
autism Today -- genious Tomorrow --I love that. You are doing a fabulous job. If I can help you in any way at all please don't hesitate to contact me.
Gina Laverde McDermott
ginalaverde@hotmail.com
[quote] 3) jump start our efforts to create our AutismBites Foundation. The goal is to help put funds directly into parents hands for whatever, without a lot of red tape and hoops to jump through [end quote]
It certainly reads nice.
How do you intend to achieve this third of four goals for your non-profit organization?
What criteria are you setting in order for people to access the Autism Bites funds?
Will you be funding only families who agree with Autism Speaks or all families who apply for funding regardless of how they feel about Autism Speaks?
Inquiring minds want to know.
Please can someone tell us whoch People magazine day that was. I'm in Canada and writing a book about my 21 year old autistic son who moves to his own apartment next week. I have come a long way you know? My kid was mute till 9 years old. i focus a lot on their safety. Check out my safety blog.
http://autismsafeswim.blogspot.com/
Hi,
I read your article on People Magazine and I am so touched at your story. I work with many families with autistic children, and I can feel the difficulty of raising one, two, or three children... but this is the first time I have heard of a story of more than four - let alone six! Still, my heart and prayers goes straight to you and your family. Autism is no disease, it's a disorder, but it can take a strong toll on what we might call "normal" livelihood. But I am happy that you are championing this and loving your children in every way.
God bless you!
I was so happy to see the program about this wonderful family. It really let us see that we are not alone and others struggle too. I am a grandmother to 3 wonderful children all of whom have learning issues and one has pdd. We have been searching for a good place to raise the children that offers us excellent services...and right now we are in a good school but we definately want more for the children. I didn't realize that with my granddaughters diagnosis at 4 it will take longer here to get my grandson diagnosed with anything and forever to get my littlest one who is 16 months diagnosed if she needs it. None of this is easy...the looks from others isn't fun, and even i find myself wondering...why cnt you just be normal...and then i realize that this is normal for us.
This is definately a blessing from our Father...now we just have to take care of these gifts as best we can. nice to know there is support out there.
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