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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154 comments
What an amazing blog entry. I am a teacher and will have an autistic student this year. I teach 2nd grade so he has some things/routines in place. I am excited, nervous and anxious about this learning experience. I am so amazed at the spectrum that comes with austism. No two people are alike. Thanks for being so open about your family. I have learned so much from you.
Amy Cline
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Wow! I just have to say that Simon is a very fortunate little boy to have such wonderful, amazing parents.
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Ali, my prayers are with you and you family. You are an inspiration to everyone who has children. thank you for sharing these tough moments with all of us.
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One day at a time, positive thoughts, keep moving forward! You guys are doing awesome! Your great parents and it shows!!!
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The story of your family is an amazing one. Kudos to you and Chris for all of the love, patience and hardwork that you have put into the think called your life. Thanks for being willing to share your journey with us!!
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Sounds like Simon is making progress and you and Chris are doing the best you can to make his world a place he understands and connects to.
With many of the kids I work with I do a "news of the day" song where they tell me what they did that day and I tell them what I did that day. I ask specific questions or give hints to get things going or I use a picture chart to help with telling me 3 things they did that day or more specifically (with pictures) "I ate ______"
"I saw ______" etc.
I agree with previous posts too about using social stories to address the running and other behaviors. Also, always make sure his sensory system is on track when the running occurs, sometimes running is a great way to release the anxiety of a situation and to help him regulate his body.
Good luck and keep plugging along. Simon will continue to grow and develop as long as you keep loving him and pushing him and connecting with him.
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Been following your journey for the past year and although I've never dealt first hand with autism with my own five children, I have become more aware of what my children are doing because of your ups and downs. Tonight, I too will sit down and journal about my oberservations of my children and how they see the world and how I see the world so differently from being a mama too. It's not easy sharing something so emotional and private, but you've been such a great help and encouragement to so many.
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just a thought having taught in a public school that mainsteamed MANY kids on the austism spectrum into the "regular" classroom...
a student I had in third grade, Danny, had spent K in an intervention school specifically for austism, and then entered our "regular-old-public" school in first grade. each year his mom presented the students in his new class with a slide show presentation to help the students in the class understand Danny and his behaviors. The silde show had pictures of Danny doing things that all kids his age loved to do to show how he was the same as everyone else in the class(eating pizza, opening presents, playing games, etc.) Then other photos were to help explain his needs and behavior (example: pics of the things that made him upset (lawn mowers and other things that made loud sounds for instant.) It was AMAZING. the kids adored him! it really took out the fear factor that little ones can sometimes have encountering someone who might act a little different then what they are used to. My class was so helpful and understanding, so patient. I should mention she had to do the slide show while he wasnt there because he would get upset if she stayed in the room to long-just too much out of his routine! But it was so great to hear his own mother (not just the teacher) explaining that he sometimes repeats things, he might talk extra loud at times, & his other little "quirks". I just cant say enough about how powerful I think this was. Danny went on his first field trip with our class to a play no less! He had his class picture taken and even ran our class meeting by the end of the year. Okay I'm done rambling,LOL,
...hope I made my point, if you need more specifics please let me know!
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while i can't know exactly how you feel, i think i'm somewhere in the ballpark: i had a set of twins at 31 weeks - one was 2lb and the other almost 4; we have been incredibly blessed, and they are healthy and happy little girls. every year we go to CHDD at the UW (seattle) because of their high risk as preemies - physically & developmentally. i know the fear, the hope, the frustration and the doubt; i know how it feels to feel as if you maybe haven't done enough as parents and i know what it's like to be validated by 'professionals'.
so while i don't know exactly how you feel, i can nod my head, cluck my tongue, and say i understand. because i do. keep up the good work with your little man...my 3 girls send him some hugs.
tammy b
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Just wanted to write and send positive thoughts and hugs your way today.
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I'm a grad student in speech-language pathology and am working this summer as a head teacher in a classroom with students with autism/severe language impairments. I love reading about your experiences with Simon because it helps me relate better to my students' families.
My favorite technique for increasing language use is simply language expansion. I start slightly above my student's current language level (e.g. if the child simply points and says "monkey," when reading a book I would say, "Yes, monkey swinging!"). As the child picks up on the increased complexity, I kick it up a notch (e.g. "The monkey is swinging!" and then "The monkey is swinging fast!").
A tip for increasing social interaction during Simon's future play dates, if you don't already do this, is to not put out enough toys! Sometimes it pains me to do this, but it really forces the interaction if the child has to ask for a marker or the bubble wand. It really helps improve problem solving skills, as well!
Keep us updated! I love your blog!
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Ali,
You are truly a remarkable person, I have total faith in you, and your ability to nuture all things around you. Everyday when I read your blog I am inspired by how you look at the world around you, and how you react to it. I believe that Simon will continue to grow and mature, because he has wonderful parents like you and Chris.
Thank-you for sharing your life with us.
Dara Cohen
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There are parents out there who would throw their hands up and say there's nothing to be done. You and Chris are doing so much for Simon. Please don't beat yourself up about the slacking off. You're not machines and you can't perform at 100% all the time. You're doing the best you can and that's all anyone, including Simon, can ask of you. Some day he's going to look back and say "Thank you, Mama!"
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Karen C.. those are called Social Stories. I work in an Autism Program and we write multiple social stories EVERY day. We work with boys (haven't had a girl yet) that are elementary aged, and two programs that help with the visual element of it, are Board Maker and Pix Writer. Pix Writer takes what you type and adds an icon above the word. Board Maker puts picture Icons on the page and you can add words that you want. It also comes in handy for making schedules or what have you. We write social stories for everything from behavior, social situations with peers, pre-teaching of a skill, and for any activity that is new or different.
For running away, we'd do two. One that went along the lines of "Today Simon ran away. Running away is not OK. Running away is dangerous. Simon needs to stay with adults. Simon needs to be safe!" Then we'd do another one, that we'd go over with Simon every time we were going out into the world. "Today we are going to _______________. At ___________, Simon will walk with adults. Simon will be safe. Simon will not run away. Running away is dangerous. No running away!"
We actually have a student who is entering 4th grade in the fall who used to be a runner. We couldn't even take him out on the playground without him taking off. It took a lot of work, and a lot of physical hand holding the whole time he was outside from his aide.. but he doesn't run anymore. I bet Simon outgrows this. Keep up the good work. You and Chris are doing a wonderful job!
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Ali...I feel compelled to say, "you are doing a wonderful job". I do not know you. I do not know your husband. I do not know Simon. I do know though, that you speak of Simon in such a loving and caring way and you should be commended. God Bless your sweet little family...
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once again, so much of our life with Jake is mirrored in your words. I think we're probably one year ahead of you in the process...and in your words...it is good. It is all good, I promise. A struggle, yes, but all good in the end. you rock, Ali...thanks for being so real in sharing your heart with us!
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Thanks for posting your experience here Ali. I've commented here before because my own son (age 13) has autism and I can relate so much to the things you are saying here.
We also have times where we need to "check in" and re-evaluate ourselves as well and those times always are helpful (but a little hard also). We find that we have some of the same struggles year after year, but also so many accomplishments. Make sure to pat yourself on the back (and of course Simon also!) for his improvements and forward progress.
Sometimes it is hard to see growth when it is right in front of us, and that is why it is nice when a professional can say "wow, his eye contact has really improved" - you know how meaningful those small triumps can be!
Thanks for sharing the journey with your readers. You do so much for autism awareness!
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I agree with Erin, Ali. My 4 yo was given the choice to do whatever he wanted with me the other evening before bed and he chose to lay down on my bed and talk with me! We snuggled, we talked (he chose a topic then I chose a topic, etc.)...we had a blast! (One of the topics I chose was about Clifford, the Big Red Dog. What would we do if we had a big dog like Clifford? etc.) My oldest son, who is 9 and who I believe has Aspergers, always wants me to stay after reading together in his bed in the evening to "just talk." We always eat our meals together (I homeschool) so we talk all the time, but it just seems right before bed they feel like talking the most.
Just my thoughts, Ali... All the best to you and your family!
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Ali,
Our Tristan has spina bifida with hydrocephlus, we used to go to clinic every year for a long day of assessment. (Now we go to the services that are the most impact, neurosurgery, orthoped, urology the eye Dr).
On clinic days I always felt like each service was only seeing the part of Tristan that they dealt with and in a magnified sense, the ortho dr would comment on his muscle tone, weakness, the urologist would talk about his bladder, in each of their 15 minutes they would make thier "part" of Tristan seem like the big issue, no one ever seemed to look at the whole kid, the kid who makes amazing strides each day at home, school and in his world which is so much bigger than that clinic room for a day. Of course in the strange enviroment of the clinic with strange people too close, too intrusive no one does thier best. (I know my BP goes up up up when I go to get it checked.
Simon is much bigger, much greater than all his parts) I marvel at the richness of your family life together. He is truly not the only little person in the world to want Chicken nuggets 3 x a day.
Hang in there and remember the guy you see, in the world you share is the big picture!
love, gail L
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You are the perfect mother for Simon. Be gentle on yourself and remember you know what your son needs/feels & will eat anyday of the week. You are moving with him and giving him what he needs as a parent. Thank you for being open and vulnerable with your journey. Your humble spirit speaks volumes to just how perfect a mother you are for him!
I celebrate that!
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