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.
PS: Love the snack box idea. My 2, almost 3 year old, wants to eat constantly, all day long. Makes me a little crazy. I'm going to have to try this snack box idea.
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Awesome that you are getting such good help! Alot of the tools she's given you sound like stuff Jo Frost from Super Nanny has families do. They work great for all kids. All kids need order to their day and a designated snack box!
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Awesome that you are getting such great help and guidance. I can just feel that you are on the right track! Keep on keeping on! I am thinking of you!
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That is fantastic news! I am so glad that your meeting with the specialist and the meeting with the DAN! doctor went well. I remember it was such a relief once we got our therapy program off the ground (ABA and speech) and had a treatment plan from a biomedical standpoint. It was then that we really knew- we are going to get through this.
The food sensitivity testing is a really good idea. Not all DANs require it (unlike some of the more standard tests like the OATS- for yeast). That is great that yours does. Our son has more extreme behavior issues when he gets any amount of soy (even soy lechitin, which does not bother most soy sensitive people) than he does with gluten and casein. So we are gf/cf/sf- plus lots of other foods that he has tested allergic to.
Your family is going to get through this too :) You are doing a great job!
Take care,
Nicole
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This is really exciting, Ali. I'm happy that you have found good resources to help you with Simon. Love manifests itself in so many ways. :)
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Ali,
I'm so happy for your family. We have been using PECS for about 6 months and at first I was concerned that all Jaron needed to do was just exchange a picture for an item and that he wouldn't TALK. However, that has not been the case and his language is exploding. Jaron uses PECS at his "pre-school" and we have a nighttime PECS schedule to run meal-bath-bed, etc. to help him with transitions. I usually leave about 3 hours in the middle of the day for him to just be free. You will be amazed once he learns to "check his schedule" what he will be able to accomplish. Hang in there!
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Man, all that stuff is just COOL! Can I come play too? ;)
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Ali
I am chuckling to myself as I read what you are going through...not in a bad way, though! You are going to reap so many EXTRA rewards for what you guys are doing right now...and I chuckle because it is only in hindsight that I can say this! I chuckle with glee that you are providing a snack box...I meant to post a couple days ago when you were talking about his diet regarding this very thing. My son had a cabinet in the kitchen. The pediatrician told me to fill it each day with all the food for the day (Food was frequently added during the course of the day) and then he had a "choice" of whatever he wanted to eat. Good for him, good for me. And now, a semi-adult child who loves, and has always loved, a great variety of food.
And consistency is a great thing even in the absence of autism. I used to thank my kids for providing me with the opportunity to be consistent with them, because it was my lazy inclination NOT to...They loved that they had a hand in making mama a better mom, and a better person.
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What an encouraging day. One of those days that you can cling to the hope of when you have a not-so-great day. Still praying for the Edwards' daily.
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What a great day, Ali! What a wonderful job you are doing at making sure you give Simon what he needs. :)
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Ali, I love reading your blog and thank you for putting it out there for others to consider. You ROCK. I love the snack box idea I think I am going to do that for my daughter so I can regulate what she is eating.
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Yeah! I'm so excited for you all and the encouragement and assistance you've been getting--so encouraging, and an answer to prayer! Love the idea about a snack box...might have to implement the same thing at our house, so David isn't moving the stool all over the kitchen trying to get into whatever cupboard is open. :)
~cc
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You are an educator's dream parent. You would not believe how extremely hard it is to get parents in the loop about understanding their child's disability (and harder to get them to focus on their ABILITIES!)...AND to get them onboard with a focused treatment and support team. My hat is off to you and your husband.
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my name is Leirs and im from the Philippines..Seeing a DAN! Doctor is really good idea. Ive heard great stories about GFCF. I also believe that autism is an injury. goodluck and let us know about what happens with this whole process
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so happy!
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What an incredible day for all of you! Simon is so fortunate to have you and Chris as parents.
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I think it is just great that you've found all this support around you. Take advantage of it - maybe one day you'll be someone elses support. :)
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Hi Ali,
Glad you are getting back on track and had to comment on the pictures you posted of the daily chart. My daughter (now 3 1/2) had to use a similar system for a while - she has sensory integration issues (The Out-of-Sync Child book addresses many of our concerns) at the suggestion of our oocupational therapist. I hope that it works for you as well as it did for our daughter. And as for dietary things.. I'm very interested in hearing about what kinds of foods Simon is able to eat since my son (8 1/2 months old) is very allergic to dairy, wheat, eggs - we have an epipen for him because of this. It's not too difficult for us now since he's not eating that much but I know it will get increasingly difficult - try finding any gluten-free, dairy-free, egg-free teething biscuit! The thought of no bread, pasta... and he's also proven to be allergic to green beans, peas, and bananas so far. I'm going crazy trying to give him stuff that actually doesn't make him break out into hives and claw his skin off until he bleeds! How much oatmeal and winter squash can one person have?
OK, enough of my ranting! Thank you for sharing some of the more personal things that you are going through.
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Forgot to add that the gluten-free pantry has some great food that is both gluten-free and casein-free www.glutenfree.com. And this is an autism-related blurb from their website: " Autism
We work closely with parents to help them become acquainted with this special diet and offer many products that also contain no casein. We are recognized as an important resource for the Development Delay Registry, ANDi, and other groups working with autistic children."
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WOW - I am so excited to hear their is hope for my autistic son! Thanks for posting this! We are working on the picture board too :)
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You rock! I would love to read more about the doctor from Defeat Autism Now. I have a different story but identifying food sensitivies, going organic, etc. changed my life (I used to be chronically ill - I haven't been sick in years after changing my diet.) I'm so excited to keep bumping into this and seeing lives change as a result. Please keep sharing!
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