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.
Ali, you're amazing! It's great to hear that Simon is doing so well and making improvements all the time. Thank you for sharing your life with us :)
Sign in or sign up to comment.
good mama :) well done!
Sign in or sign up to comment.
wish you lived close to us, my boys would love to play! they would be peas in a pod, brown hair and eyes and into some of the same things Simon is in to. You are doing great! Keep it up!
Sign in or sign up to comment.
I have to be honest, I didn't read through all the responses, so if this has been suggested sorry to repeat.
For my two boys (6 and 4 yrs old), we used a book titled "How Do Dinosaurs Eat Their Food?" It really helped them to "try just one little bite" of new foods. They also have clean their rooms, get well and bedtime books.
Sign in or sign up to comment.
Hi! (waving from Seattle) Congrats on getting through a reeeeeallly long eval, and I'm so glad that you got a lot out of it! My little guy Noah, born a couple weeks after Simon, also has autism, and there are a couple things that popped up for me reading your great post:
a) I'm guessing sensory issues have a lot to do with Simon's picky eating, since sensory issues are so woven into our kids' landscapes. Any food therapists/OTs in your area that specialize in this? I know you were trying to get him to eat meat, so it's likely you've looked into this.
b) One of the best things we're doing is that we're hooked up with the behavioralists (behaviorists?) at UW Autism Center. And it's amazing, it's like having your own little answer center for your kid. I'll ask, "Noah's doing X, Y, and Z, how can we redirect him?" And I'll get a bunch of answers. She's observed at his school and we've had quite a few epiphanies from there as well. It's a program for ages up to 7 years old, and if anyone has a great understanding of autism, it's them. They also have the same program in Tacoma.
Lastly, Ali, it's so helpful to so many of us when you write about Simon's journey, and YOUR journey as his mom. I know exactly how tough it can be at times, and how mind-blowingly amazing it can at times too. Your ability to write honestly about your experiences is a gift to us all. Thank you!
Sign in or sign up to comment.
You are amazing!!
Sign in or sign up to comment.
Thanks for sharing all that information and your feelings...very eye opening and well written, I could feel your emotions and imagine how this journey has been for you. It is so informative to hear this side of autism for a teacher (I am a SAHM, but a first grade teacher too - once a teacher always a teacher)....You are such a cute family, lucky to have each other....as I was reading, I just wished we lived closer, so we could have a playdate! Congratulations on your success and good luck with your dinners (food and conversation)...It sounds like you are all doing a fantastic job!!
Sign in or sign up to comment.
Love you Ali...
Yes, you are the mama...and an incredible human being as well...They say that everything happens for a reason, people come and go in and out of your lives at the times that they are suppposed to; what a blessing for Simon that he came into yours and Chris's. Hearing the positive outcome from your meeting makes me want to do the happy dance...to Simon Webbe's "coming around again" I hope that you, Chris and Simon enjoy it as much as I do...
Sign in or sign up to comment.
Once again you soooo inspire me! There is something about your tone, your simplicity, your style, it is very inviting, and the reason I keep coming back to your blog. You uplift me just by sharing your daily life. Simon is the luckiest kid to have parents that adore and truly care about every detail of his life. Best of luck with everything you need to do....I know you will be successful...you rock!
Sign in or sign up to comment.
Ali,
If dinner is stress time (introducing new foods, reminders to eat, etc) be sure you don't also try to get him to discuss. its too many demands on him at once. Think of each of these as a skill to learn, concentrate on grapsing certain skills before trying to combine them.
This does not mean silence at dinner, it means different expectations -- consider what you want to emphasize: food choice? conversation? manners? dinner is a really important time but there are other opportunities, too.
Finding those in your day is tough, but really worth the effort. I know you may feel like everything is an effort. Parenting an autistic child is an exercise in constant creativity. It can be difficult and frustrating -- often times I have just wanted to throw up my hands and say, will someone just tell me what to do!!
Then I calm down and remember that autism means being different, thinking different, reacting different. Research is minimal in what to do as these kids grow up. and sometimes we are the ones who need to lead the way.
congratulations on a great visit! its too bad they do it in 8 hours like that -- your little guy probably doesn't even stay at school that long so it is not vary realistic to expect much of him. Our docs have a different approach. 2 hour appointments spread over 2 weeks. it is a lot more driving, but the results is less stress on the kids. something to consider when you need to do another check up.
Jen
Sign in or sign up to comment.
Hey, Ali. Thank you for your post. That helped me pull together some thoughts that have been running through my head the last few weeks.
Our 7-year-old son, Jackson, does not have autism, but he has battled severe allergies, asthma and ezcema since the age of four months. We have been to more doctors than I can count - some helpful, some not so.
When he was three, we spent two weeks at National Jewish Medical Center in Denver, a hospital that specializes in conditions such as his. When we were there, we finally felt understood, finally felt that we were getting Jackson the help he so deserved. It was a transforming experince for Jackson and for our family. In the intervening years, we have gone up and down in our commitment to everything they taught us - we get busy, we get tired, we had a second child.
In September, Jackson and I are going back to Denver for a reevaluation, restesting and to discuss possible solutions to his current challenges. I was telling my husband this morning, the feelings you articulated about being back really describe what I think I will feel when we get there. I hope and pray this will be a time of positive updates, as well as learning and recommitment to helping him feel the best he can feel.
Thank you for helping me pull my thoughts together.
Sign in or sign up to comment.
Hi Ali, I would've emailed you, but couldn't seem to find an address. Your explanations/scenario sound so familiar, as my nephew has Asperger's Syndrome. Lots of the same symptoms and goings-on as what you describe. But, as you said... one day at a time, one step at a time. The amazing times w/ him are out-weighing the challenging times. He's so fun--some of the things he says and does--makes me just wanna write everything down!
I have 3 boys and they play well with their cousin. They have just come to an understanding and completely adjust to his ways. Kids are so resiliant! They all play together super well--issues and all.
So I'm in Springfield with my boys (younger two are 8 and 10) and they'd love to have a playdate with Simon! :) They do really well with my nephew and his high-functioning autism.
You are a WONDERFUL mama Ali! You and Chris keep up the awesome work! I'll be praying for ya on those challenging days, and for extra energy too. :)
~Camille
Sign in or sign up to comment.
Hey Ali - shout out from Salem. Just wanted to say you are doing an amazing job with Simon. I just met my man's 4 year old nephew, who was also diagnosed with Autism - and these kids really continue to amaze me all the time! Though his nephew does not speak or recognize emotion - he is definitely one of the smartest kids I have ever met! I don't get to see him very much or know what they go through on a day to day basis so it's great to read about Simon and have a little insight to what they might be facing.
I will continue to have your family in my thoughts
-Lex
Sign in or sign up to comment.
Hi Ali,
Wow! I can definitely relate to this post. My son is a few years older than yours and I have been where you are several times, a lot of mixed emotions.Just remember that Simon is in a happy, supportive home and is progressing thanks to you, Chris and your support system.
As a parent of a autistic child I thought that I would share a few things to look into.
First, Links to Language. It is a language and communication program developed by a speech pathologist specifically for autistic children. Using physical items (plastic animals, people, furniture, etc.) you teach him the elements of language nouns, verbs, prepositions, pronouns... sentence structure...asking and answering WH questions and so on. Once he has the elements of language then you work on conversational skills. Listening to and retelling the story of a book is specifically addressed. The therapist understood how concrete our kids are and built the progam using that as a strength. you build his language block by block at his pace.
I used this with my son and he went from almost nonverbal, some nouns and a handful of verbs to full conversation. I know several other families that have used it with great success. I took the classes through the Orange County Department of Education in Southern California. They train their therapst and teachers with this program. The lead Speech therapist Instrustor flies in from I believe Mass. I know that she teaches in other areas of the country.
The thing that I love about this program was that I could administer it myself. Ideally you have a therapist work for a half hour session per week and then you do 3-4 25 min. sessions at home. I never had a therapist because of where I live but we did a remarkable job on our own.
Second, the running and eating issues can be addressed with ABA training. Look for a book by Karen Pryor, she worked with B.F. Skinner and developed the training programs used to train whales and dolphins. Her book is a little paperback, less than 10 dollars. It outlines the ten principles of Opperant Behavior Modification. You will be amazed at what you can do with behavior modification. Personally I don't go for 40 hour weeks doing ABA in a little room. I think that it needs to occur as it would in the real world, my personal oppinion.
If you would like more info feel free to contact me.
Sign in or sign up to comment.
Hi Ali
every time you write about autisim I feel like i want to comment about something, but I'm just not sure exactly what to say. Autisim will always be something very close to my heart. I usued to teach preschool about 8 years ago and had a severly autistic child in my class. Everytime you talk about Simon, I'm flooded with memories of Nicholas. And I'm reminded how that one little boy changed my life.
Anyways, i just wanted to let you know (as many others have said) you and Chris are doing the best you can. And your worries are really no different than any other parent. I think we all worry if our children are eating right and if we're being the best examples, or if we're encouraging the right behaviors. Simon is so lucky to have parents like you.
You are a good momma.
Sign in or sign up to comment.
Just look at how many people love you!
Sign in or sign up to comment.
Ali,
Thank you for sharing this remarkable story. Simon is one blessed boy to have such committed, loving parents.
Remember, there are many, many people in the world who care deeply about you and your family. Even if we've never met you, we still carry you with us in our hearts.
Sign in or sign up to comment.
I know you are getting so many comments - but thought I would add some resources we have found to be helpful. My nine year old son has ADHD and we have been working with him for four years. I know ADHD is different than autism, but there are some similarities. I recently became certified as a CHADD trainer for their Parent to Parent classes. We had an amazing instructor come in and teach us behavior coaching and management - he was amazing. He works with children in the school district and is on CHADD's national board. He had so many great strategies for behavior coaching - I can't put it into words. I have worked with several ADHD experts through the years and read so much - and this guy was a fountain of knowledge. I came home and put into place two ideas and the results were amazing. His name is Terry Illes and he works in the South Jordan School District in Utah. He is amazing. He is very approachable and teaches people across the country how to motivate and be positive with their children. I have some of his handouts that may be helpful - let me know and I will be glad to email them to you.
Another site I have found to be very helpful is: http://www.bbbautism.com/behavior_management_strategies.htm
All the best to you and your precious family. It is such a blessing to all of us that you are so open with your experience - - your post and the kind comments from many are quite a blessing to those of us struggling with similar issues in our families.
Sign in or sign up to comment.
Ali, the way you express yourself and your feelings are so heartfelt that I felt as if we were having a one on one conversation. From what I read, you and Chris have a concrete understanding of what you have to do as parents and that is half the battle. We are all fans of you not only because of scrapbooking but also because you are a tremendous human being. God Bless always...
Sign in or sign up to comment.
You always have such a wonderful, positive way of looking at things... sometimes, I too, need to remember and actually remind myself... its okay to feel... I'm mom... and worry, etc...
Why is it that when they get the diagnosis, we tend to forget that we are not the teacher , therapist, nurse, etc... (and yet some times all of these! lol) but that we are their mothers first and foremost...
You have such a great grasp of that...
Congrats to you, Dh and Simon on all that you have accomplished...
My husband Jon and I look at eval days as a kind of birthday... not to focus on what he can't still do but to remmeber how far he has come, and celebrate the person he is to become...
God bless you guys...
Kim
Sign in or sign up to comment.
Ali, thanks for being so open and sharing your journey with us. You truly are doing a service for all children and families with autism when you inform the rest of us and help us to see the journey that you are on. As a teacher, I am a better teacher and person because you share your insights and celebrations. The 3 of you are a fantastic family. God sure did bring you together in a special way to do some special things! ((( HUGS)))
Sign in or sign up to comment.
Ali, thank you for sharing so much of your life with us. Hearing about Simon's (and yours & Chris') journey helps us all so much, whether we have a child with special needs or not. One of my twin boys has Down syndrome, but some of the issues (eye contact, running away, speech issues) are the same. The yearly trip to the developmental ped is an emotional roller coaster, but as long as we see progress then we know we're on the right track. Don't beat yourself up too much, you are doing a great job. We came to the conclusion pretty quickly that "you get the family you are meant to have" and I think that is true of Simon, he has the best mom and dad he could have picked! You are all very lucky.
Sign in or sign up to comment.
I can understand your worries about food so good. I am also struggling with that again and again. But I think parents like us, who are aware of the facts of nutrition and pay attention to it, are on the right path. And having chicken nuggets in between is just so ok!
You are such a special person, caring so much for your family and especially for Simon. You are doing a great job!
Sign in or sign up to comment.
You are an awesome MAMA - your heart is in the right place.....
Sign in or sign up to comment.
Hi again. Wow, what a touchstone day. I am always impressed by the depth of specialists and programs available in your area. We have nothing like you describe here, and I often wonder at the information about Nathaniel we don't know.
Food is hard. I find the end of the day the most difficult time to struggle - and food is always a struggle. Still, we are working on changing our diet gradually - without a big change that would provoke a big resistance. Fresh, local foods, and I am drawn to organic. It's so hard to know what matters with autism, but I'm finding myself feeling more and more protective about what my family eats. Just finished Barbara Kingsolver's book - wow!
Thanks for sharing your story and reminding me that we are not alone. There are families all over struggling and thriving as they work out their lives. And, thanks for reminding me that my role is "mama". I can do that! And, so can you!
Susan
Sign in or sign up to comment.