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.
It is great that you are taking the time to not only check in/up on how Simon is doing but to also reflect on how you both are doing as parents!
As far as the running away goes, have you tried any social skills stories?
I have not used them with anyone as young as Simon (but they are out there and you can script your own and draw little pictures to go along) but that is because I work with Middle School Students.
Basically, and this is really rough (I'll be back with some links and a book title tomorrow as I am at home and that info is at work), you describe the behavior you would like to occur in a given situation in a story with short and to-the-point sentences and pictures as necessary/as you wish. I have also done this with the comic book program that came with my mac and, in the moment, have drawn pictures/written the words. ill be back with links and info.
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simon is so so so lucky to have wonderfully concerned parents like you and chris. so many great resources you have as well.
i don't have an activity, so much as a suggestion, but i work in a teacher supply store and we have many teacher resources dealing with autism. just in thumbing through them, they have many strategies in dealing with behaviors that autistic children are likely to have. you may want to check amazon for some of these great resources.
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Hey Ali! I love to hear how Simon is doing.
Regarding language skills and a very fun thing our family does at dinnertime or bedtime is "count your blessings." We all sing the "count your blessings" song (a church song) together; then we go around the table and say our favorite part of the day--what we are most thankful for. No repeating each other! Its easy; not too long; yet very memorable. Helps us remember the great day, and to be thankful, and know that God is blessing us no matter what!
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You will make it.
Chris will make it.
Simon will make it.
Keep up the good work.
It's not easy.
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I thought of you and Simon lately when doing some research on service dogs. Service Dogs of Virginia has a program using service dogs for children with autism. The beauty of it is that the only charge is your cost for accomodations during 2 weeks of hands on training with the dog, parents and child. Typically service dogs can run up to $25,000 if you have to pay out of pocket. Service Dogs of Virginia will assist out of state, with Virginia residents getting preference. But I'd be surprised if there isn't a similar organization near you.
I've attached the link.
We have just had our dog go through the first level of service training. I have MS and she is learning commands that help me use her when I need assistance getting up or need help opening a door, etc. A dog's intuition about the needs of those they bond with is an incredible thing.
http://www.servicedogsva.org/
Look under the programs link for the autism program.
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I'm a speech therapist at a school in northern Indiana and Teach Me Language is a great resource for children with autism who have verbal ability. It gives really good ideas for teaching conversation turn-taking, pretend play and even some higher level educational stuff even dealing with money. Also the sight Do2learn is has a great game for teaching emotions as well as an free access to really good printable pictures.
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I hope you don't think I'm simply a music-therapy-advertising drone, but your recent posts have made me perk up my cyber-ears. :-)
The goals that you mentioned... In my first practicum, with a small group of preschool-aged boys with autism, we worked on many of the same goals as you wish to work on with Simon, such as: social skills + turn taking, behavior management (focusing on staying-in-seat behaviors and focusing behaviors), identifying feelings, conversation skills...
For example, I used instrument, structured music-making, and activity choices for the turn-taking... Musical improvisation and turn-taking to mimic/model conversational behaviors... musical incentives and preferred activities for behavior management... Check-in songs to express how they were feeling, and to identify how other people were feeling based on their choices...
I still have the visual schedule I created, in a brightly-colored book format to focus and engage the boys during their music therapy time. You can see it here: http://www.vexedangel.com/gallery/Visuals-for-Group-with-Autism
You can click on the pics to see them larger; underneath each, I kind of explain it and what was going on when I used it. :-)
I always love to hear your approach and attitude towards this, it is always wonderful to hear how loved a child is.
Ann Marie
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Hi Ali,
So glad the eval. went well for all of you! While reading your words about speech and conversations, a song popped into my mind...one I do with my students with special needs (including autism)each morning. I admit, some kids say the say thing each day, or point to the same picture, but they are still participating in the process of turn taking. Its amazing as time goes on how they do learn how to choose different answers. So cool.
So, here goes...
"Simon, Simon what do you say?
What was fun for you today?"
It is so simple, and can be given any tune you like. Just thought I'd share. Good-luck on this new adventure!
-Erin
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Ali,
You are such a great mother, such a great woman and human being.
I admire you so much!
Yanah
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Thanks for your candor, and your ability to share about your struggles and joys as a mom. You are really doing great and are such a light.
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Thank God that little guy was born to you two! Great job!
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(((hugs))) Ali. It is so good to check in, and yet again, it's taking another turn on the road of the journey. And (to cop a phrase)... [i]it is okay[/i]. I hear the momma questioning in you, but I also hear so much love. So proud of all three of you! Hugs to Simon too, for being the very best Simon he can be!
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Your blog is such a wealth of information with regard to Autism. We spoke at CKU-Atlanta last year....my daughter is going into Speech Therapy and wants to work only with Autistic children. Since last Summer my oldest daughter has decided to get her Masters in Special Education at the University of Tampa(she just finished an undergrad degree in Special Education with ESL infusion). She wants to also ONLY work with Autistic Children. Until just a couple years ago neither one of my girls had ever known one single Autistic child. Thank you for giving my girls a Parent's perspective....your blog entries will serve to be invaluable to them as they continue their studies in this area.
Dana Smith in Virginia
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Ali, I just wanted you to know that Simon is one of the major reasons I read your blog. I spent several years teaching adapted swim lessons to autistic children all over the spectrum. I remember the constant struggle for that moment of connection. With most of the kids I worked with, it was a very rare occurrence. Every time I see a picture of Simon where he is looking at you, smiling at you, and genuinely showing the love he has for you, I can't help but get a smile on my face and a tear in my eye for how well you are doing with him. Even with all the struggles, you are raising a great kid. -Mia
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Hi Ali,
Don't want to be a "scary fan," but I wish you could know how you and your own life's journey have redirected my life. I don't have any amazing or dramatic stories, just a mom who is rolling up her sleeves everyday, trying to do the best I can for my little buddies. I've definitely lost some of myself in all of this. My everyday is so rich and meaningful with these amazing kids it's hard to admit anything but positive things. From you, I have realized how important it is to be a person as well as a mom. I am working hard to find that person and funny enough my kids love it when I do things that I love! Duh!! Anyway, my thoughts are with you and I just want you to know that you are not alone in feeling the overwhelming want to do the right things for Simon. You are a mom and that is big. Your love and persistence are enough. You are exactly what Simon needs. Take care!
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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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