Evaluations.
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.
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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We used to have to trade a bite for a bite. Try a bite of food and then Branch could have a bite of a preferred food. (Branch loved mac and cheese). He tried it and then got his bite of mac and cheese. The only thing he couldn't eat was eggs due to texture issues that would make him gag.
He still likes to eat starches the best, but he is willing to try new foods without fighting and understands his body needs good foods to grow. (now at 16) :)
Hugs and keep on trying, you'll find the system that works best for Simon and don't ever forget THE MAMA IS SMART...if something doesn't feel right, don't do it.
Have fun with it!
Laura
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Hi Ali!
I am thinking of you and your family! I can only imagine the roller coaster of emotions you had today!
I'm sure all three of you were exhausted at the end of the day!
You and Chris sound like amazing parents. You are exposing Simon to so many things and giving him the gift of loving parents!!
I think all of us parents get tired and busy! You are doing a great job!! Believe in yourself - you know Simon best!!
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Oh, dear Ali...I so know some of these thoughts and feelings. Simon sounds like he is doing really well. I know you and Chris do SO WELL at celebrating all the little things. Evaluations are hard...so emotional. As you say, they bring up so many feelings and reactions. Huge hugs to you and your family on this journey. You are in my heart tonight:)
Cheers
Kari
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Sending thoughts of peace, love and encouragment your way.
You once told me to remember to be kind to myself and I would like to return the favour.
Appointments like yours bring everything right back front and center - don't get discouraged - just focus on what you have learned and where you can go from here.
You have such a marvelous little family. It's a privilege to see the way you grow and the way you love.
Warmest wishes,
Alexandra
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Wow. Two years. And so much to process. And look how much good you have done! Not only for your own flesh and blood but in raising awareness about autism by sharing your experiences, feelings and observations. Not to mention all the money you've raised.
I always come here for inspiration and you never disappoint.
Not just inspiration but big rich doses of humanity served up with heart.
Thank you. It's good stuff.
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Hang in there, Ali. Slow and steady wins the race. :0)
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Hi Ali,
I always enjoy reading your blog as a fan of your work and as a mother of a five year old son with autism. We have done a lot of work (and continue to) on social skills, eating, and the big one for us, running away. It has taken tremendous effort and work but we have seen amazing progress. If you would like to email me, I would be happy to share more information with you.
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Ali, you all have learned so much and are helping so many people.
I don't remember you mentioning if you are familiar with the Floortime/DIR approach (http://www.floortime.org/index.php). Just thought you might want to check it out. It's great for the social and language aspects of autism. Good luck and keep hangin in there!
Nancy
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congrats, good job and good luck.
you've done great thusfar, the future should be no different.
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Hi. Here in New Zealand we have been using music therapy with my son Max and his Autism. One of the things you mentioned is the lack of being able to identify emotions, and thru music on the piano we have begun teaching him this. He now can identify happy, sad, angry. They use the music and also a matched photo of the emotion with a song. Gosh hope that makes sense :-) Good Luck.
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Hi Ali
When my girls were younger, we'd play this game in front of the mirror when brushing our teeth or hair - 'Show me a happy face' or sad or grumpy... at 9 and 11 we still occassionally play and usually get toothpast all over the mirror from lauging so hard.
I second the post from Nina about a scrapbook featuring Simon. My 9 yo is struggling with emotional issues related to her disabled Dad. She has trouble identifying her emotions and recognizing when she's having fun/happy times. Her psychologist recommended a scrapbook with photos of her in various moods (good and everything inbetween!) It's been successful beyond expectations and something she has chosen to continue herself.
thank you for sharing your family's journey - hugs for putting yourselves out there to be a voice for Simon.
;0) from one chicken nugget mom to another!
(ketchup + nuggets = protein, carb and veg right??)
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Simon is progressing and it's great that others can see that also. I guess I'm just shocked at the time element. 8 hrs. That is a tremendous amount of time for such a little one to be in the same place being evaluated, etc. Even if it was broken up into time segments. I'm sure everyone was tired by the time the evaluation period was over. I have a picky eater also. He didn't eat a thing tonight. I try not to stress and it is hard to incorporate new things onto the plate when they don't eat them for the 30 times before the time they actually tried the food. Thanks for blogging you are an inspiration to myself and many others.
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Your love, patience, candor and strength are such a great example for us all.
Many continued blessings to you all.
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Ali,
I've been teaching special ed for a dozen years, and I can't tell you how much your pictures, layouts and stories of Simon mean to me. You have shown the world that all kids, no matter what challenges they face, are still KIDS at the heart of it. Don't take this the wrong way, but you've shown he is mostly like any other kid, and that's what all kids with challenges want the most - to be seen as any other kid. (stepping down from soapbox now)
I'm sure you will share the reports you've gotten with his teachers, but please make sure to spend some time talking with them about the findings and your own concerns. I have a daughter that didn't speak until she was 3 and a half, so I've been on both sides of the conference table. Even though I've been in the business for a long time, her teachers gave me many fabulous ideas to use at home when I was stuck.
Also, use your parent rights when you need to. If you think he needs one on one services to address some of your concerns, push for it. I pushed for one on one speech instead of group, because I knew in my heart that's what my daughter needed. She still has some quirks, but now after two years of special ed preschool, she's scoring on the average range and we just exited her from services. You and Chris know him best, that's why special ed parents have so many rights. Use them when you need to.
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be the best, positive, encouraging mama out there and you'll be satisfied with you and your little guy! you do one heck of a job.
as for the food, come on...all mamas get in these ruts. nice to know i'm not alone in this complex world!
take good care of yourself. you'll then be able to best take care of him and chris! smile lots!
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