An ALLELUIA day.
So yesterday rocked.
Why, you may be wondering.
Because we are getting serious about getting on the right track around here.
In the afternoon we met with Simon's Autism Specialist. She was here from 3pm to 5pm and basically educated us on what we can do to help him throughout his day. Especially including some techniques for teaching him how to calm himself, giving him specific directions and choices, and mainly getting our act together with regards to a more interactive schedule.
She brought with her (and we get to keep here): 
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a picture schedule that shows month, day, date, what activities are happening in what order, and a choice wheel for when he is getting bored or a "choice" is scheduled into his activities. Once he chooses one that little square goes into the "all done" pocket. Love this idea of structured choices. -
individual activity boxes (work stations) to practice his fine motor skills. This is a series of four boxes with toys in each one that we can play with him or he can work on at the table. He moves onto the second box once he finishes the first. We are really working with him on the idea of "first this...then this" and getting some sort of compliance before moving on to the next activity. She brought a whole bag of different things that can be rotated through the boxes on a weekly basis. -
creativity activities: such as marbles with paint in a box top (Simon LOVES marbles) where he gets to get really messy and roll the marbles around and drive matchbox cars through the paint and we get to encourage more language. Lots of different things with paints and such. Teaching him how to use scissors. Just playing. You know I was loving that. I guess we really just needed someone to show us what to do with him.
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interactive activities: games that can be played to teach sharing - how to give up something that you want really bad and realize that it will come back to you. I think there are four or some games that she brought - one is a memory game where we just start with a couple cards and teach him how to match.
This lady was amazing. Chris and I were in awe of how she worked with Simon. The assertiveness in her voice. I was vigorously writing down what she was saying so I can incorporate some of the same phrases into my vocabulary. She was great with him while he had some melt-downs and throwing tantrums when he was not getting what he wanted. We would all ignore him until he started being distructive. Then she would sit him in his chair (we need to get a bean bag per her recommnedation) - she called this "moving to break" (as in take him away from whatever he is trying to destroy and have him take a break in his chair until he is calm enough to get up). She told him, "Show me you are ready. Sit in the chair to show me you are ready." and "First sit in the chair and then you can play at the table." He simply had to comply and sit in the chair for the count of three before he could move on to the next thing. She ended up walking him through it - physically showing him...but she says he will get it - we just need to be consistent.
Another suggestion she had was to create a snack box for Simon that is always available and teach him where to go when he wants a snack. Right now he just goes to the fridge and pulls out what he wants - which is not always what we want him to have. I love the idea of a snack box with water.
So that was all good.
Then last night we were able to meet with a Defeat Autism Now doctor who is seriously going to help us in getting some of the tests I read about originally. Food sensitivity testing. Yeast level testing. It was so interesting hearing him talk about autism as an injury. I am not even going to get into it on here becuase it gets a little complicated - just hearing him talk about it simplified some of it for me after all my reading, but it is still complex. He is going to help us get on the right track. Thank God. And give us some more support and backing on the diet. It has to be all or nothing and we have not been insisting on that at school (and some gluten here at home). We have to treat both dairy and gluten as if they were drugs (that is essentially how they act in his body)...with devastating effects.
So there is much more to be done. But I am feeling stronger and more confident in what I want to happen for him. And I love that Chris was able to be at both things yesterday. Having him hear about the diet stuff (which he has totally been behind the whole time) from a doctor was awesome. And I feel like we are finally getting serious...with the educational and bio-medical interventions to help get the little dude going in the right direction.
Ali - that is so awesome! I am so glad that you guys are getting the support you need. Those are some great ideas that I am going to incorporate too - the snack box idea is fabulous!!
PS - I love rolling marbles throught paint :)
Sue
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I just want to say GO ALI! I'm so impressed with all of this stuff you've been doing. I know it should go without saying because he's your child and who wouldn't want to do everything they could, right? But so many don't. And it takes a LOT of energy, time and work to do what you're doing. HUGE props to you!
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Thank you so much for posting the daily schedule-I'm going to make one of those right away for Eddie. I need to get more consistant for his sake. This will help immensely.
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that's so awesome, A! so happy that things seem to be heading to such great new levels for the three of you! :)
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The best post. Love that you are all able to move forward. Everything feels better with the support and tools to do so. Thank you for sharing on your blog as well. We all deal with different difficulties with helping our children grow, and it so helps that we all know that we are a community. Best to you and your family.
T
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That's great news, Ali!
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Ali, I'm so happy for you. Your positive attitude works wonders too... it makes all the difference in the world that you have all of these real-live references to help you on this journey.
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Hi Ali,
I read your blog often, but this is my first time responding. I am working on a masters degree in early childhood education with a specialization in young children with disabilities. I just finished a semester working with preschoolers with disabilities. It sounds like my school district uses a lot of the same techniques your specialist showed you. Our kids have workstations. We also use the picture schedule boards with our kids and they are awesome. The kids I worked with had the routine on using them downpat in no time, and I'm sure Simon will, too.
I'm by no means an expert, but if you ever want to chat, feel free to email me.
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Ali, it's so good to hear that things are beginning to happen for Simon and you and Chris. You are to be commended for your persistence in getting him the help he needs and for providing him with two parents who support what he needs to grow and mature.
I know it must be hard but it will be so worth it.
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Congrats on the great things happening!! You, Simon and Chris will be so much happier now that the help is there and you can move forward.
I love the board idea and have been thinking about coming up with something for my 2 yr old similar to this. It gives me a great starting point.
Thanks for sharing, as always, Ali!
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Ali,
This is my first time reading your bolg (found it via Andrea @ Superhero Journal). I felt I had to congradulate you on working so hard for your son. My daughter was born with very severe food allergies, and it took my husband and I a long time to find her the help she needed (and we needed, too). I don't think anything is harder than being a consistant parent, so you deserve a big congrats for dong the right thing for your son!
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Isn't is such a wonderful feeling? Our older son has been diagnosed with an anxiety disorder and is being evaluated for hyperactivity. The first time we met with a psychologist who was able to give is specific direction as to how to handle certain situations was really a life-changing moment for us. Six months later, both my husband and I, as well as our son are much happier people. It just takes that one person who can show what changes to make and how to make them happen. And by the the way, several things you write about (things to do chart, accessible snack bowl) were also suggestions that were made to us as well. Doesn't it make you feel as though you are no longer spinning your wheels?
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Very cool, Ali.
We have tried PECS but found that Andy enjoyed chewing the pieces and just moving them around. (roll the eyes) Another thing that worked for a while was just taking digital pics of household items, including food, and laminating and putting magnets on the back. I also typed the name of the object which helped them to be more verbal with their choices.
If Simon is a chewer, I have some good suggestions.
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I'm so glad to hear that you are figuring out....love those Ah Hah moments!
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SO awesome, Ali. All of it. Can't wait to discuss further this weekend. :)
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this is wonderful news, ali! i can hear the note of increased confidence on your "voice." good for you...and good for simon, too.
r.
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WOW Ali such great news and glad to hear such optimism in your voice. Great that Chris was there too. It makes a big difference. My Dh has come to all of my neurolgist appts and drug appts and it helps a lot. We have one of those boards at school for teachers that have autistic children in their classrooms- they are such a great system and they really help.
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Sunday night on CNN they are showing a special about Autism. It is supposed to be very good, and it was nominated for an Academy Award. It comes on at 8p ET and here's a link:
http://www.cnn.com/CNN/Programs/presents/
It is called "Autism is a World: A look from the Inside". It is all about a girl with autism and she tells her story.
I thought you might be interested.
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Yeah for your good day of empowerment! Doesn't it feel good to have tools that put you back in control of autism vs. at it's whim?? We have the bean bags too:) The groovie thing about the suggestions the lady gave - they are normal. I love that. We so seek out normal stuff for David to help him cope, etc. Trampoline, pillow fights, bean bags, super tight hugs - all stuff that doesn't look wierd to his friends:) And hello - how brilliant for any kid is that schedule?? We were suppossed to do this one and never did b/c I couldn't really get a picture of what it should look like in my head - thanks for posting it:) kellicrowe
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WOW! I'm feeling totally motivated -- for what, I'm not sure. Just seeing the pecs and the schedule are giving me goosebumps (used to teach elementary students, some having been diagnosed with autism...). You're awesome to dig right in and face it all head-on. Simon's a lucky guy. You're lucky parents -- love that you're seeking the support.
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Ali, what a joy it is to read about the success you are having and the resources you have found to help you. I wanted to pass on one additional book for you, in the event you haven't heard of this one. A boy in my daughter's class has autism, and his parents firmly believed that diet was the key. His mom researched and eventually wrote this book. Here is a link to the book and and article about her. I'm sure you have plenty to read on diet stuff, but thought I'd pass this along in case you had not heard of it. :-)
http://www.enzymestuff.com/enzymebookorder.htm
http://www.autisticsociety.org/article8.html
Janet
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that is so great...
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That's great- sounds like you got a ton of super ideas and even better that she had all the stuff with her so you can start right away. Also great that you found a doc that you like- that can make all the difference in the world.
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hey ali~guess it was brought to you..but any hint as to where the awesome chart was from?? that is just what we need for our three year old! :)
congrats on the new schedule! :)
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I haven't posted on your blog in ages, but I read everyday. It makes me smile to read posts like this showing your love and devotion for that sweet little boy that we have come to love in the SB magazines. I can sense your passion to love him, hold him and help him. I love it! Nurturing children...our future. Reading this makes me want to bust out our Memory game and play games with my kiddos for hours. You got alot of great ideas for little man Simon. Enjoy this journey.
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