Thanks.

Simon


I wanted to take a minute and say a public thank you for all the emails I have received over the last year about autism and about Simon. I have read stories of love and triumph and challenges; learned a ton from other mamas (and a couple dads too) & therapists & educators about daily schedules, diets, and educational toys; received so many links & infomation & files of picture schedules that I need another lifetime just to absorb it all; shed tears; and felt tremendous support.


I have connected with parents concerned about their own child's behaviors, even grandparents concerned about their grandchild. I have received emails from mamas whose children are grown - sharing words of wisdom & support & love, and emails from mamas sharing the proud accomplishments and strides their kids have made.


Thank you, from the bottom of my heart, for reaching out to me.


It was just over a year ago that Simon received his initial diagnosis of autism.


Over the last year I have had moments of denial, moments of clarity, moments of questioning, and so very many moments of joy that this awesome little boy is in our lives.


One year ago today I posted, "So, things will change around here. Pieces of our life will change." And
of course it is true - our lives have been completely altered. And you
know what, I don't think I would take one moment of it back. This is us. We have all become more us.


Here are a few new links I want to share:


• From Pam (thanks Pam): Getting The Word Out


• Sharon Sonneff wrote a very interesting and thought-provoking entry on her blog the other day: Experiencing the Mysterious


In 12 days, Simon will turn 4. We will celebrate all that makes him Simon. All the beautiful bits and pieces that we treasure about him. That we adore. That we are so very thankful for...

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62 thoughts

  1. Laura says…
    01/10/2006

    Hi Ali
    I have followed your story & Simon over the past year & Just want to say how brave you are. I have been an Early Childhood Teacher for the past 21 years & have worked with autistic children & their families as they mainstream the children into a t"typical" prek classroom. The parents who are aware, self educated about autism & open to all that it may bring & willing to try whatever to improve the richness of their child's lives seemed to have the best experience. Good luck in all that comes ahead.
    Laura

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  2. Jenn says…
    01/10/2006

    Four!! I didn't realize Simon was that close in age to my little guy (ben)! Well thank you for sharing your story with us! Prayers
    jenn

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  3. Lynne says…
    01/10/2006

    I visit your blog everyday and I just realized your son and mine were born on the very same day. I just thought that was cool, lol!
    Lynne

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  4. Robin C. says…
    01/10/2006

    Ali: I hardly ever post to the blogs I read but I read your blog daily - it is a great touchstone for me. I have two children, Rory who is 3 years old, and Fiona, who is 10 months old. I love the creative inspiration that you give me for my art but mostly I love the way that you care for Simon, for Chris, for yourself. As a young woman (36), wife, mother, attorney - Iwear so many hats but the one I love best is being a mama. I really relate to how you care for Simon and try to make sure that he is the best Simon that he can be. (Because being the best Simon is the absolute greatest thing he can be, right?) That is what I try to do for my kids and reading your blog is like a reality check - "ok it is hard for others as well - But it is worth it" Rory is struggling with some behavioral issues right now (I think a natural occurence for a 3 yr old) but I have had to really educate myself about his development because I am constantly having to advocate for him with his pre-school teachers. They want to place so many labels on him and pigeon-hole him a category so that they can handle it. It is hard being on top of all this stuff but I see you do it with Simon's autism and it is a great spirit lifter. I am a praying woman and I always include you and yours in mine. Sending good vibes your way!

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  5. stephanie tafoya says…
    01/10/2006

    love love love your site...just started my own...a bit about me...I started scrapping 11 years ago, when it was all stickers, paper, pictures (of course) and ONE company. Anyways, been doing it forever and my heart really aches to do what all you girls do...design for a company, do it for a living...I believe the old saying "good things come to those who wait" and better yet, "Do something you love and you will never work a day in your life again" just dont know how to go about it...Please let me know your thoughts! I look forward to hearing from you!

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  6. Mary says…
    01/10/2006

    My son has spina bifida and I remember vividly finding out and thinking about how my life (and my daughter's and husband's) was going to change. At the time I thought I was losing my "perfect" life and I dreaded the change.
    Now, he's two and he's smart and funny and he just might walk within the next year. I never thought my "imperfect" life could be this perfect.

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  7. Colby says…
    01/10/2006

    So glad that things have come full circle for you this past year, and you have this perspective one year later after the original news. You are so strong, Ali. God bless you all!

    Reply 0 Replies
  8. Deanna B. says…
    01/10/2006

    Ali, I remember going back through your archives because I discovered your blog a little while after all of this was diagnosed. I have never had any friends or family have any life changing news with their children. I remember reading this, and where you mentioned you and Chris crying yourselves to sleep... I "put myself" where you are, and I couldn't help but cry as a mother too. You are such a testimony to me even though I don't know you personally. It's a pleasure just to hear how pleased and proud you are of him. I appreciate that you would even share it with us as you have this year. God bless!

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  9. jen says…
    01/10/2006

    ahhh...ali...he's such a cutie! it has been an experience watching this process that your family has been going through. so glad that you have so much support, understanding and inspiration all around you!!

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  10. Lori R says…
    01/10/2006

    Ali-thank you for sharing so honestly and caringly. My Ben has beeen diagnosed for 15 yrs. now, embrace the ride. Children with Asperbers are very special and wonderful humans. You are blessed with Simon.

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  11. Robin Weiss says…
    01/10/2006

    Ah the joys and complexities of loving a little one... Simon is lucky to have you and Chris for parents. That you noticed. That you cared. Just remember the smiles and hugs on the days that all that seem to come are tears. It is worth it!

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  12. Lori Hudson says…
    01/10/2006

    Regarding eating in restaurants with kids. I have 3 young ones and we ALWAYS go to loud restaurants. People don't notice your kids talking and wiggling when they are trying to talk over the noise around them. I don't know what you have in your area, but I am talking about places such as TGI Fridays, Bennigans or Macarroni Grill - family type restaurants with bars. This is why we haven't had chinese food in about 7 years! Chinese restaurants are pretty quiet.

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  13. Andrea W. says…
    01/10/2006

    the first thought that came to my mind after reading your entry was...
    "Praise God for Simon!"

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  14. Moriah Bettencourt says…
    01/10/2006

    Happy (early) Birthday to Simon. My son Alex has lots of special needs & I can totally relate to not wanting to change that & celebrating the parts that make him, him.
    When Alex was born he had a cleft lip. Something so visible, my Dh was really sad about it. We dealt with a lot of stares & horrified looks when we would try to take him out, it was really upsetting. But I have to say when he was 8 months old & it was time for his repair surgery the night before I sat up by myself & cried & cried. I was so sad & felt a little guilty that we were going to change the face that God gave him, in essence telling him how he was born was not good enough. In reality though I KNEW we had to repair it, he would not want it unrepaired when he was older plus all the eating & dental issues. But I did have a melancholy feeling about fixing that precious little face when in my heart he was never broken.

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  15. Sharon Kile says…
    01/10/2006

    Thank you for this wonderful journal and journey into your everyday life. Although I don't know how it feels to live with Austism. My DD turns 18 in April and I knew the minute she started Kindergarten that she would "Not stay on Task" (ADD)..She never has, I wouldn't have it any other way. She is beautiful energetic and brilliant.

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  16. Milena says…
    01/10/2006

    You writing ability amazes me, I feel so blessed to know people like you exist in this world. You are such a great mom and your post made me cry. What a Beautiful Little Dude! He will be one beautiful Man inside and out because of you and Chris.

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  17. emilyruth says…
    01/10/2006

    you three are so lucky to have each other...thanks for sharing with us...you are a gem:)

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  18. Jaime Warren says…
    01/10/2006

    This post brought tears to my eyes. I have gone through those same emotions over and over again. My daughter Jillian has made great progress...and I am thankful for it. But I will never forget those first emotions. I will never forget how our lives changed. Like you, I am thankful for it. It has made our family what it is today. Thanks Ali for reminding me of that.
    -Jaime

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  19. Lasting Memories Scrapbooking (Julie & Barbara) says…
    01/10/2006

    Hi Ali,
    We are a scrapbook store in NY, about an hour north of NYC. Several of our customers took your album tract at CKU Stamford and absolutely loved your work. We are anxious to have you teach at our store if you can possibly fit us into your busy schedule. Look forward to hearing from you.
    Julie & Barbara
    845-621-3119
    46 Miller Road
    Mahopac, NY 10541
    lastingmemories@suscom.net

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  20. Kass says…
    01/10/2006

    Ali, although I haven't met you in person yet, I can see from your posts and your work that Simon is the luckiest boy in the world to have you as his Mama. You are amazing in what you do and your attitude to LIFE. You are an inspiration in every way.
    Kass

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  21. Jennie says…
    01/10/2006

    Just look at those gorgeous big brown eyes, what a cutie. I hope he is getting all excited about his birthday.

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  22. shannon c says…
    01/10/2006

    Cute thing...I just clicked on your blog and Simon's picture came up. My youngest son stopped what he was doing and just started at the picture. I told him, "That's Simon." He had such a big smile. Isn't it sweet how children respond to each other?

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  23. Erin says…
    01/10/2006

    Ali,
    Just felt compelled to say thanks for sharing your journey of autism with us. It makes me feel proud to be a teacher of young children with autism and other "abilities," and excited to do my best each day. Looking forward to going to work tomorrow to see "MY" kids. Thanks...
    Hugs,
    Erin

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  24. Jackie says…
    01/10/2006

    Ali - This post brought me a few tears - and also made me want to reach out to you. I think you are amazing for all the feelings, stories and ideas you share. Whenever I read your blog, I smile with you, learn from you, occasionally cry with you, and always get totally inspired by you...not just your work but for the person you are. I just wanted to send you and Chris peace and blessings as you prepare to celebrate Simon's birthday! Enjoy the wonderful day!
    Jackie

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  25. jenny h says…
    01/10/2006

    Ali - as so many others have said, thank you for being so honest and real - about life, about work, about motherhood, about all else you share in your blog. You are such an inspiration! We have a 5 year old son who was diagnosed with cerebral palsy at age 18 months. I too remember my husband and I crying ourselves to sleep around that time. But, we picked up the pieces, did research and became the best advocate for our son as possible! Have you ever read the Erma Bombeck piece about being a mother of a child with a disability? Here's a link, I know it's all over the internet... http://www.downsyn.com/bombeck.html It has given me peace and comfort these past few years. Thanks again for all you share --Jenny

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