Ali Edwards Capture life. Create art.

January 9, 2005

Autism.

Last week, on Thursday, January 6th, Simon was diagnosed with autism. We had been on a waiting list for nearly six months for an appointment and evaluation at Child Development And Rehabilitation Center (CDRC). This is a division of Oregon Health Sciences University with an office at the University of Oregon. During our time at the center we met with a developmental pediatrician, a child psychologist, a speech pathologist, an occupational therapist, and a social worker. After testing (or attempting to test) Simon in a variety of areas the team met together to gather their findings.

Their findings were as follows: Probable Autism Spectrum Disorder with severe language delays, now echoing in Early Intervention supports; affection, engagement, testing performance all pretty much on his terms, did not cooperate with standardized testing except for mild to motor delays, poor direction following; dislikes confinement or hand holding, little awareness of danger, lots of sorting, stacking, lining up, doors need to be closed, transitions difficult, lots of sensory issues, limited imaginative play

Hearing someone tell you that your child has autism is devastating. Even though we had some suspicions, by the time we finally had our appointment scheduled we had ruled it out…or pushed it out of our minds as a possible reason for many of Simon’s delays. There are so many ways he does not seem autistic…and many ways that it is reasonable to understand why he is placed on the spectrum.

Thursday night we took Simon swimming. Everything was the same but everything was completely different at the same time. Our lives are forever altered in that one instant. Chris and I both cried as we fell asleep on Thursday night.

Friday morning I work up, and after dropping Simon off at school, headed to Border’s and bought four books. I have almost finished 2 by this evening. Now I have a hunger for information…for what to do next. How to help Simon…how to arrange therapy…what direction to head.

One of the first things we are doing is putting him on a Gluten (wheat) Free/Casein (dairy) Free diet. To read more specifically why we are implementing this diet you can read the following: An Experiemental Intervention For Autism. From the two books I read this weekend I am convinced that this is something that must be attempted first and foremost – and will occur in conjunction with behavioral and other types of therapies. We hope to be meeting with our Early Intervention connection this next week in order to move towards what is next…in addition to the speech therapy we have already scheduled prior to learning of the diagnosis.

So things will change around here. Pieces of our life will change.

Chris and I are good. We will stand in solidarity with Simon in this new diet. I imagine that my scrapbooking will take a backseat for some time as we journey down this road. There are so many things to be done…things to keep up with…to make sure that he is receiving the best possible care, therapy, and that we are doing everything in our power to initiate a recovery.

There is so much more to say I am sure and more autism links to be added. Thanks for the love that I know you are sending our way…it is so appreciated.

Comments

  • 1.
    Amy said…

    Ali, much love, thoughts and prayers sent your way.

  • 2.
    m said…

    I just found you a couple of months ago and have so enjoyed reading. Of course, my prayers are with you … Simon obviously has a great mom and that in and of itself goes a long way.

  • 3.
    Dawne said…

    Ali, your family will be in my thoughts and prayers.

  • 4.
    Kim said…

    Ali, you & your family will be in my thoughts.

  • 5.
    Shannon said…

    I think of you many times throughout the day. You are such wonderful parents. Love to you all.

  • 6.
    tempestdelfuego said…

    I also found your site a little while ago. I have been inspired by your writings, work, etc. Simon is in my thoughts and prayers; he has wonderful parents.

  • 7.
    Candace Swails said…

    Ali, I recently found you on 2ps and you inspired me to start scrapbooking!! Today at work, I have free time and decided to do a search for you to see if you had a website, and wow – found this. Please know that I will keep you and your family in my prayers. Remember two most important prayers “Help Me” and “Thank You”.
    Peace,
    Candace

  • 8.
    Amanda said…

    Ali, I am and will continue to think about and pray for you guys. I know you are awesome parents. You can’t help but see it in the love and caring and devotion both you and Chirs show Simon and each other. It shows–it translates in your beautiful pictures and thoughtful writing. Your strengths will help Simon on this journey. He is the same beautiful boy today that he was last Monday and the Lord will be faithful in showing you ways to continue loving and shepharding your delightful little boy.
    Blessings,
    Amanda

  • 9.
    Tracy said…

    thinking of you all…

  • 10.
    CarmenP said…

    Oh dear heart — I am saddened by this news, but I know that God is with you and Chris and Simon, and that He loves you and will help chart you through the waters ahead. E-mail or pop by (you know what I mean) any time, okay? Love ya.
    Carmen.

  • 11.
    Irma said…

    Been thinking about you Ali. Sending good thoughts and prayers that you find the wisdom to find the right path for you and your little family.

  • 12.
    Johanna said…

    http://www.abchomeopathy.com/c.php/18

  • 13.
    Sherri Winstead said…

    OH Ali……your blog about Simon being diagnosed with autism has just brought me to tears. NOT because I feel “sorry” for you as you well know what a JOY our children are, but mainly b/c it brought me back in time to when Seth was three and also diagnosed with autism. We tried the diet, AND IT DOES WORK, but unfortunately with budget household constraints, it became very difficult for our family…yet he did start speaking when we started……it does help! I will do it again when I am able!! Anyway–it just brought me back to a time that I can’t believe we went through
    I remember getting the diagnosis, holding it together, yet..I ALREADY KNEW why would I be so sad inside? I knew it before the doctors told me , yet…..after I was told adn while waiting for Seth to be called back for a routine Fragile X blood test, I felt OUTSIDE of myself looking in. It is THE WEIRDEST thing to explain, but it’s exactly how I felt…and then now just 2 years later…WOW what hope i HAVE FOR YOu, what Joy!! I mean there’s issues of COURSE, but my goodness this child talks non stop (UMM BUT we still struggle with getting him to STAY at teh dinner table and he STILL limits his food b/c we are not on the diet and…umm.eh likes to STAND in the chair, but….outsid eof that, hahahah)…we are great! He is no longer in occupational therapy for sensory issues and only gets speech once a week at school. Praise God b/c it use to be at school and twice a week outside of school..it’s hard…It is. IT’s life.
    So thanks for sharing your story!!!!!!!!!!!!!!!!!!!!

  • 14.
    Hillary said…

    I read your entry with interest … my 3 YO is autistic. Even though we kind-of Knew, it was still heartbreaking to hear when we got the diagnosis. A lot can happen between now and Kindergarten, and all the interventions will benefit Simon.
    We did the gluten-free, casein-free diet for 3 months, and we didn’t notice any improvement in Colin, so we stopped. It is certainly worth trying, and definitely provides benefit in many kids.
    My 6YO had a PDD diagnosis for 3 years. She was just re-evaluated and she lost the diagnosis, although she still has pragmatic language issues.
    Be well-Hillary

  • 15.
    Jenny Alvers said…

    Ali, Simon is such a beautiful gift to you and Chris, what a precious child. I understand your rollercoaster ride of emotions as I am helping to raise my autistic grandson. He is starting First grade this year and is doing OK, but there are always adjustments. Cade was not diagnosed until he was half way thru his pre-k year. He is a twin, his sister has no special needs and is very protective of her brother. He did great in kinderten last year, and seems to have a really concerned teacher for first grade. He is in a manistreaned classroom with a special ed teacher in there for part of the day and a paraprofessional in with him also(My next door neighbor!) The twins mom (my daughter) is a special ed reading teacher in 7th grade, so we make sure he gets what he needs from his teachers.
    We are both such lucky women to have our special boys and to share the bonds of love and trust that we build with them. They are both so perfect in their own ways, I could not ask for a more precious gift!

  • 16.
    Lusi Austin said…

    Hi Ali :)
    My name is Lusi Austin and I remember reading on your blog many times about your beautiful son Simon’s journey with autism. I know this is such an old post to be commenting on but I sat here and cried as i re-read it.
    Our middle child, a gorgeous 4 year old little boy named Elijah, is waiting to be assessed for ASD. It’s still early days for us. We have waited 8 months already and are at the point now, after much personal research (+prayer!) that we know that one thing he has is a sensory processing disorder. He has been on a *safe diet* for 6 months.
    We have cried and i guess grieved in a way and now we are at the place of research. Your *hunger for information* hit me in the heart b/c that is the exact stage we are up to at present.
    I’m attending an amazing specialist’s conference here tomorrow (im in australia) by Sue Larkey and i can’t wait! It will be my first connection with the autism community here face to face :)
    We have had so much fabulous support from Elijah’s preschool and from our church too so we are so encouraged.
    Thank YOU Ali for sharing so openly. I can not adequately express how touched I have been tonight by reading your blog posts.
    Our life will change too – pieces of our life – but we are so thankful that we can start to get tools to help our precious boy understand the world in which he lives and for us to understand how to communicate with him in the ways best for him.
    Much love and many blessings to you guys Ali,
    Lusi x

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