When Simon was first diagnosed with autism back in January 2005, one of the recommendations from the team at CDRC was to return in a year or two for a re-evaluation. Yesterday was the day.

This visit played out much like before. Simon met with a speech therapist, an occupational therapist, a developmental pediatrician, and a child psychologist (this is an all day 8am-5pm deal). One of the issues that came up in 2005 was a lack of cooperation to complete the testing - we all hoped that they would be able to get farther this time (for a more accurate diagnosis). In the end it was a bit better, but there were still quite a few things he simply refused to do during the testing (he would become hyper-focused on some other thing in the room ie: toy and continue to ask for that rather than respond to the adult asking the questions/trying to get him to engage).

There were also things that he simply didn't understand such as the concept of pretend play with small people or being able to look at a book presented to him and tell the story to the speech therapist based on the pictures.   

We wanted this evaluation to be a check-in and a check-up. In some ways it is a second opinion on what we already know from the Early Childhood Special Education/Early Intervention specialists. His issues continue to be related to speech, behavior, muscle tone, and socialization/social skills.

As parents, Chris and I felt we also needed a check-in. Along with Simon being re-evaluated, we needed to evaluate ourselves. How are we doing? Are we doing as much as we can? What new strategies could we employ? We needed the opportunity to bounce ideas off the specialists and get more information and suggestions on how to address certain areas.

One of our main concerns all along has been nutrition. We have a super picky little guy when it comes to food and when you get down to the heart of it, some of it probably has to do with the fact that we have not been consistent in our approach to getting him to try new foods. We get tired. We get busy. We get off course. We do things that are simply easier on us (chicken nuggets again tonight, sure, sounds good to me buddy).

Some of our fears related to his growth (based on his nutrition) were alleviated by the developmental pediatrician who tested his fat content + height + weight and was able to show us on the growth chart that he is right in the middle of where he should be. A little sigh of relief there, but also a reminder again to us to get back on track. One of the things we will be doing in the coming months (as suggested by the developmental pediatrician) is visit with a nutritionist in Portland in conjunction with CDRC/OHSU. It will be another step in obtaining knowledge and strategies of different ways we can work with him.

Other goals we will be working on with Simon:
- Organizing some play dates to work on social skills + turn taking (Meg are you interested?).
- Behavior coaching/behavior management especially related to his desire to run away (which to him is simply a game of chase) - would love to find someone to work with us one on one - any one have any info on this sort of thing?
- Moving his language skills beyond simple identification to a conceptual level (looking at a picture book and being able to identify feelings) + working on reciprocity in conversation (keeping the conversation going beyond one statement question from me and one response from him). One idea the child psychologist suggested was to have a chat each night at the dinner table about each of our favorite things from the day and have that be a jumping off point for more discussion. Simon will need some coaching on this to get things going (similar to the picture story/schedule he brings home each day outlining his activities - we will probably bring this to the table to begin) but it is an opportunity to work on a bunch of different skills.

Lots of things to continue to work on as he gets ready for kindergarten. I think many of these issues will continue to be emphasized in his afternoon autism classroom (he will be in the typical classroom in the morning).

It was interesting being back in the building again. Lots of memories
flooded over me from our previous visit. On the surface I noticed how
almost everything there was the same - the toys, the color of the wall,
the furniture, the feeling in the waiting room. 

In contrast, so much has changed in our lives over the last
couple of years. Autism, politics, work. I know that I look at the world differently than I did
prior to Simon's diagnosis. There has been a softening - or maybe the correct term is an awakening - inside of me and it has impacted every piece of myself and how I see people and the world in which we live.

Simon is the same amazing, handsome, fun kid he was the day we took him in for his first evaluation. He has definitely made progress and continues to grow and develop. The child psychologist remarked more than once yesterday on how there were times during the evaluation where Simon's eye contact and connection with him were fantastic. I loved witnessing that and loved that he is a man who is in tune to those sorts of beautiful moments.

Overall, it was a good visit.

Sitting here today it is tough to put into words all the emotions and observations and thoughts that carried me throughout the eight hours we were there. For me, writing it all out continues to be a big part of how I process and organize all this information. My observations will always be a bit cloudy as I find it hard to separate the hard facts from the emotions that seem to go hand in hand with being the mama. But that is ok, I am not the doctor nor am I the evaluator. I am the mama.

As for today, today we are moving forward once again. I sense that both Chris and I are back on best behavior. I can hear it in our voices when chatting with Simon. I could see it in the choices I made at the grocery store this morning and in my meal planning for this evening.

One day at a time. One foot in front of the other.

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  1. Sandy

    2007-07-18 12:10:16 -0400

    Hi Ali & cute family-
    you're on the right track. One foot in front of the other, don't give up! I know this is way cliqueish (sp??), but truly, sometimes you have to remember, one day at a time. If you can't do one day, start with with one morning/afternoon/evening. If that doesn't work, one hour at a time. Then a brand new, one hour at a time. It's good. Give yourselves a huge pat on the back for a job well done, remember something joyful for the day, give Simon a huge hug, and move on. Take care, keep moving. I think you're doing a fabulous job. -sandy

    * edited 08/11/14 10:53AM
  2. Dana Smith

    2007-07-18 13:29:21 -0400

    * edited 08/11/14 10:53AM
  3. Kim K.

    2007-07-18 13:29:46 -0400

    I can so relate. I was at the children's hospital one hour yesterday, and two and a half today. My 5 year old, who will also be starting kindergarten in the fall, was recently diagnosed with Asberger's Syndrome. We are getting a second opinion through our state's board of disabilities/Autism division. The OT we saw for the first time yesterday, who has 17 years experience, seems to be so on top of things. She has enlightened me more on Matthew's condition in two days than most have in the last two years. My son suffers from similar problems. He has no problem with eye contact, but the conversation skills just aren't there. He also has a lot of sensory integration issues and terrible attention problems. I wish you the best with Simon. He seems like such a great little guy. If I get any great insight throughout our process of diagnosis and goal-setting, I'll let you know. Thanks for sharing.

    * edited 08/11/14 10:53AM
  4. Sheri

    2007-07-18 14:16:22 -0400

    Hang in there...parenting is the hardest job in the world. Whether your child is autistic or not...we all get lazy or forget the plans we are suppose to follow...life gets busy. Don't be hard on yourself and just feel refreshed and move on to doing the things you think you have slacked off on. But wait....in a few months, you will slack again and that is only normal. Do the best you can and it will all fall into place. Simon is lucky to have such a wonderful and caring family and that is really what all matters....not the giving in to the chicken nuggets again...we are all guilty of that.

    * edited 08/11/14 10:53AM
  5. Sarah

    2007-07-18 14:29:44 -0400

    Ali, going back for the retesting has always been stressful for me; it feels like, instead of focusing on all that Zeb IS we are pushed into focusing on what he ISN'T. Not fair really - we need the information from the testing, and it's what determines the services he'll receive (the help he will get). It just...feels 'tough' to me.
    I will say one of the BEST things my husband and I did was to find a counselor for us - someone who works a LOT with kids on the spectrum, understands them and what they can and can't do (and who knows Zeb and his strengths and weaknesses too). He has saved us so much angst. We go to him with "can we ask Zeb to..." "is it wrong to require that he...". And he REALLY HELPS US understand what we can expect, what Zeb can and can't do, and how to ask for it from him. He does not 'treat' Zeb, or work with him as a client - Roscoe and I are the clients. It has made a HUGE difference. Our counselor also goes with us to IEP meetings and advocates for us. Another HUGE help.
    And I do wish you lived close by - Zeb would love to have someone like Simon to hang out with.
    You are all doing great, keep on keepin' on.

    * edited 08/11/14 10:53AM
  6. Michele

    2007-07-18 14:52:40 -0400

    I am so with you on the autism thing. My son has PDD-NOS and I keep up with your blog mostly because you are someone I can connect with- a scrapbooker dealing with autism. So glad the reevaluation went well!

    * edited 08/11/14 10:53AM
  7. jodi

    2007-07-18 15:19:18 -0400

    Too many comments to know if your question has been answered...you may want to look into getting a one-on-one behavior specialist, who would come in and help you and Simon with his running issues.
    You and Chris are WONDERFUL!

    * edited 08/11/14 10:53AM
  8. Niffercoo

    2007-07-18 15:55:14 -0400

    Ali, I hope you see the message at the bottom of the replies! Have you looked into RDI for Simon? It's Relationship Development Intervention, and the website is www.rdiconnect.com. We are just getting started with it with my 5 year old daughter (diagnosed with PDD-NOS), and my 11 year old son (diagnosed with Asperger Syndrome). We are already seeing some really great results, especially with my 5 year old who runs away alot. Reading your note about Simon's running is what prompted me to post. We started RDI in April, and a few weeks ago, my daughter actually cried because she couldn't find ME in a crowd of people (I was right behind her but she couldn't tell because of all the people). She doesn't run off like she used to, and now when she does start to run off, she quickly turns, realizes what she's done, grins at me, and comes back -- all without a word from me! I'm not meaning to imply that it might be that simple with Simon, but I just wanted to mention RDI in case you hadn't heard of it before!
    Hang in there! I find evaluations to be the hardest days for me... it's so hard to read all of the 'stuff' when it's about your baby! You're doing great!

    * edited 08/11/14 10:53AM
  9. pat

    2007-07-18 17:42:20 -0400

    Hi Ali:
    i follow your blog and have recently signed up as one of your goodread buddies. I work on marquam hill in Portland; i am glad to hear that the evaluation went well. i have a wonderful colleague who is a registered dietian who has worked with special needs children for many years; my hope is that it's this dietitian who you are getting referred to. she is stellar, compassionate, reasonable and inclusive of the whole family. email me if you'd like to talk further re: pediatric nutrition....check out this other's dietitian's books; i used them alot when working with families with feeding problems (worth a look possibly...http://www.ellynsatter.com/$spindb.query.about.kelcyview) best of luck...pat

    * edited 08/11/14 10:53AM
  10. Catherine Feegel-Erhardt (Memory Makers Master 2007)

    2007-07-18 17:57:35 -0400

    simon is so blessed to have you and chris for parents! keep up the good work!
    simon, you are one cool little dude.

    * edited 08/11/14 10:53AM
  11. Mandy Steward

    2007-07-18 19:55:57 -0400

    You are doing such a great job as a mama. SUCH a great job.

    * edited 08/11/14 10:53AM
  12. Christine Bivens

    2007-07-19 00:21:16 -0400

    Hi Ali! Both my boys are on the spectrum. I've heard you mention the DAN treatments---How far have you guys gone with it? My younger guy is a SUPER picky eater, and the diets (GFCF and now SCD)have helped more than anything. We all get run down and have days where we just don't have the energy to cook something. I cook twice what we need and save the rest for one of THOSE days. Another thing that has helped us some is private OT. He gets OT at school also, but they really only focus on fine motor. His private OT has been working with him on gradually accepting new foods, and we are making some slow progress (texture is a HUGE issue). My little guy used to be a major runner, too. We put locks up high on all the screen doors, and I also got some big stop signs from the teachers store to put at his height on the doors, which really clicked with him (these guys are SO visual, aren't they?). After a while, we didn't need the signs anymore. Out in public is more of a challenge---despite the dirty looks I sometimes get, I use a harness with him. We are working on fading it out, but his safety comes first. The red light, green light game has helped, too. We also have a social worker that specifically works with people with autism come to our home and work with the boys. They listen to her a lot better than they do to me. :-) We all get worn down---you're doing a great job. If you're ever in Indy, look me up! Good luck!

    * edited 08/11/14 10:53AM
  13. Jeanine

    2007-07-19 03:07:33 -0400

    I commend you for "writing" this all out. I totally see how it must help you mentally organize the whole process. My daugher has SID (Sensory Integration Disfunction) and has just been diagnosed in the last couple months. I am still in tailspin mode - trying to learn about it, practicing my patience more than ever, reevaluating my parenting philosophy and everything that goes along with it. In addition, I am learning to become her biggest advocate and negotiating with the school board and therapists and specialists in this confusing black hole. She will go to school in August and they won't even tell us where yet! (Can you imagine preparing a 3 year old for full-time school for the first time being away from her mom and siblings - IN 2 WEEKS???? - uggg) Anyway, I am learning through you and your experiences. I admire your handle on everything and am silently cheering Simon on - all the way from Florida. Thank you for sharing as you go.

    * edited 08/11/14 10:53AM
  14. sue rood

    2007-07-19 03:34:14 -0400

    I love your realistic approach/evaluation of your day and how you deal with Simon. He is a VERY lucky young man with caring parents who are willing to work on all aspects of Simon's autism. Kudos to you and Chris!

    * edited 08/11/14 10:53AM
  15. Theresa

    2007-07-19 05:32:09 -0400

    We are getting ready to do our first evaluation at the autism center here in South Carolina. Reading your blog post helped me know what to expect. My son also has hemophilia and now I have finally come to terms with that. So now we have to tackle our next battle.

    * edited 08/11/14 10:53AM
  16. Vicki

    2007-07-19 06:15:52 -0400

    Isn't it amazing what a difference one little guy can make? Look at all the good that has come from his challenges and triumphs. Look at all the changes in you and the loved ones around you and all of us that wouldn't have given autism a second thought until we met Simon. Now it's at the top of my list. You all have touched so many lives by being open and sharing your experiences. And lets not forget how many more people are down on their knees giving a little prayer for you all. How blessed you are to have this life and how blessed is Simon to have you two as parents.

    * edited 08/11/14 10:53AM
  17. Angela

    2007-07-19 06:17:51 -0400

    I am in awe of your bravery and courage as you walk this path together. Best of luck and enjoy every moment!

    * edited 08/11/14 10:53AM
  18. Aimee Confer

    2007-07-19 09:21:18 -0400

    I know that you have so many of these comments to read. It is amazing to me that you have time to read all of them but there are so many good suggestions in there. There was one about social scripting that was really good. I have used that before and it worked with 2 students in my 2nd grade class. I thought I would make a suggestion of my own and I hope it helps you, Chris, and Simon.
    I was thinking about getting Simon to talk about his feelings as you mentioned that was something you wanted him to do. If you go to a teacher store they often have emotions posters. On the poster is pictures of real children making different faces based on the emotion they are feeling.
    Since it is so difficult for many children to you could review the poster with him. Then use the poster to help him express himself. When you are excited, surprised, angry, sad, etc. Point to the picture and say the word. Then say why you are sad. You could have Simon point to the picture of how he is feeling. If it is too overwhelming for him to look at the whole poster and decide you can cut the poster apart and use just a few emotions at a time.
    I hope that this suggestion helps you. I read your blog whenever you post and I find you so inspiring and positive. I hope I can help you as much as you help me keep a positive outlook on life.
    Thank you!

    * edited 08/11/14 10:53AM
  19. Renee Carpenter

    2007-07-22 15:34:14 -0400

    Ali, Simon is lucky to have fantastic parents such as you and Chris. Keep what you are doing, because all we all really need is love.

    * edited 08/11/14 10:53AM
  20. christine

    2007-07-22 16:40:16 -0400

    My girls just went through their annual evaluations for EI - even though we technically have only 6 weeks left before we age out. Your post reminded me of the evals we went through for preschool earlier this year. I was so stressed out, especially when my Sara wouldn't perform for the evaluators - I was practically in tears. My girls are picky eaters too - I'm hoping that being in school will help with that (peer pressure and all). My therapists recommended a feeding clinic in New Jersey that has worked wonders with kids on the spectrum.
    You're doing a great job, girl - always know that.

    * edited 08/11/14 10:53AM
  21. Lezlie

    2007-07-22 18:20:09 -0400

    Simon is blessed to have such wonderful parents like you and Chris, as you are blessed to have him. :)

    * edited 08/11/14 10:53AM
  22. Louanne Miron

    2007-07-23 15:50:38 -0400

    Hi Ali,
    I just wanted to let you know that your thoughts, ideas and perspective on the world of Autism are truly inspiring. I am the mother of a wonderful 4 year old boy named Julien who happens to be autistic. He and Simon are so similar in their challenges and victories that it is almost eerie. I applaud you for the constant need to help Simon be the best that he can be. I can see that your hard work is paying off, since he seems to be doing so well.
    I just got into scrapbooking about 5 months ago and I was introduced to your blog from a friend who is a huge fan of yours. I can definitely see why she raves about you. You do beautiful work. But you've inspired me not only on scrapbooking, but also in the way you relate to your son. Thank you for that.
    Julien and I are about to start a social story all about running away, stopping and waiting for a University study we are involved in. We'll give you more details if you are interested. Until then, keep up the fantastic work. Just remember that even though our children need the constant stimulation from various therapies, I believe that they learn the most by observing what is happening around them and the example you show them. They may not show it, but they are paying attention. Thanks again for the inspiration.

    * edited 08/11/14 10:53AM
  23. BevS97

    2007-07-23 23:05:07 -0400

    I was just reading about this dvd for kids with autism on another website, and I thought it might be off interest to you.
    It's a kids program designed to teach about emotions. I thought it looked quite interesting.

    * edited 08/11/14 10:53AM
  24. Amy B.

    2007-08-06 11:31:39 -0400

    Ali, I read your blog for the scrapping as well as the ASD portion, as I have similar things going on in my life. My ds is 4, and was dx'd about 18 months ago, so we too just had his 1 year eval soon, and I can sure relate to what you go through!! Hugs to you guys for doing what you can, and striving to do even more!! It's not always easy, but you give me even more hope, and I love to read your updates and see the layouts with Simon in them!
    Thanks for sharing your stories so openly - I hope to do the same some day!

    * edited 08/11/14 10:53AM
  25. Wendi

    2007-08-06 19:50:06 -0400

    Ali you are amazing. I am so happy the you are so public about Simon's Autism. My son was diagnosed April of 2005. I just recently went back to work for a little R&R. I work at Green Tangerines scrapbook store in CA. I was introduced to your site by some of our customers. My son and I travel to Oregon City 2 times a year to see his Autism Doctor. Doctor John Green is an amazing man that has helped many children recover from autism. I don't know if my son ever will, but he is still young, and we all have high hopes for him. Be strong and remember that you are not alone. Being a mother is a challenge, being a mother of an Autistic child is a journey filled with many rewards that most mothers never get to experience. Enjoy every moment as I see you do in every page you share with us.

    * edited 08/11/14 10:53AM
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