Monday, April 11, 2011

Autism Awareness Month!

April already! Mid April at that. The past couple of months have gone by so fast I've hardly had time to catch my breath much less blog about it all. But April is Autism Awareness Month so I want to get at least one blog done in April.

A quick recap of what's been going on lately:

Spring Break (March 13-20th) was awesome. We spent it in Phoenix going to sessions at SARRC (Southwest Autism Research and Resource Center) Mon-Fri from 9-3 each day. The evenings were spent as much as possible by the pool. Once again we stayed at Lu's favorite hotel with the lovely big water village where we can order food and drinks right at the pool. Nana and Granddad Anderson arrived from England that Wed and stayed in AZ through the end of the month. It was great to see them and for them to get a chance to reconnect with Lu and really get to know Myffy. The last time they were here was the week Myffy was born, so Myffy had most of her life to catch them up on. It was great fun.

Going to SARRC always makes me wish that we had a place like this to take our girls in Flagstaff. The facility, the playgrounds, the preschool, the therapists, the staff, the kids, everything is awesome and I want to stay there all the time. We brought Myffy in to work with our therapist Alex as well as Lu now that Myffy has officially been categorized as "At Risk for Autism" by the Arizona Early Intervention Program. The type of Applied Behavior Analysis used at SARRC is called Pivotal Response Teaching or PRT and has been a great method to pair with the Discrete Trial Teaching program that both girls are doing in Flagstaff. PRT is child led and can be done anywhere at anytime and does not require props or data sheets in the moment.

Basically, you watch your child to see what is motivating them moment by moment- for instance does Lu seem like she wants to get out of the door. Once you identify the motivator, take control of it- put your hand on the door handle, then set up the language opportunity- "Open door?" and then be contingent on her saying "Open door" before opening it. There is more to it than just that, task variation, using models, questions and time delays to try to illicit spontaneous initiations by the child, but that is the very basic jist of it. The interesting thing is that Myffy responded to this method so well. She really took to it and loves it. And her vocab has been shooting up thanks to this week of training. Which is fantastic! Thanks Alex and SARRC!!!



After Spring Break was over it was back to Flagstaff and back to normal therapy and school for Lu. We have lost yet another tutor lately, so that always makes things difficult. Luckily we are training some great new people right now and I think overall the program is getting better and stronger with time. There just always seem to be these little setbacks. But Lu is doing well at school. She is responding more to the speech therapist and her teacher though she still responds most to her aide. And she is taking more of an interest in the other students. She has even on occasion decided to start hugging the other kids in class. All of the adults respond to this by going ahhhhhhh, that's so cute! Which makes both her and the other kids do it more. We're super happy to have her reaching out to the other kids and wanting to interact with them. But the hugging did start to get a little out of hand in terms of disrupting class (you can't have kids hugging for 20 minutes out of 2 and a half hours) so we've decided to limit it to one hug per kid. That's a socially appropriate parameter. Plenty of people hug their friend to say hello. But to keep hugging, that could get a bit awkward. And not all kids like to be hugged.

I'm still trying to find a preschool placement for Myffy. Haven Montessori is our number one choice, but the wait list there is just so long. We've been trying to get Myffy in since last summer and there is no spot for her in sight. I'm hoping to hear this month that they will have room for her next fall. Fingers crossed. She really needs to have some time with her peers for peer modeling and social development. And I think she would totally love preschool. She always gets so mad when we drop Lu off and she doesn't get to stay too.




April 1st was the Northern Arizona Autism Conference. Stew and I attended. Stew spoke on a parent panel. I managed to see a few talks and go to a few workshops which were all great! I had to miss a bit to go back and forth to the apartment in order to nurse Myffy and do Lu's tube feedings. But it was definitely worth while. Our friend Laura Nagle, who was the President of the NAZ Autism Society of America last year gave a couple of fantastic talks and there was a showing of the trailer of the documentary movie that is being made about her. The film is still in the process of being made but you can see the same trailer on her website here: http://www.lauranagle.net/Film.htm  They actually are still raising funds to finish the project and could really use any support you might be able to give.

And not to bombard you with donation requests or anything, but I have also just set up a fundraising page for Team Tallulah! our own team this year to raise money for Walk Now for Autism Speaks. This is the organization that raises money for research into the causes and potential cures for autism as well as work on finding new and better diagnostic tools to diagnose earlier and better treatments to help individuals and families reach better lifetime outcomes. It's a worthwhile cause even though it will probably not impact our girls directly. Hopefully they will find answers for the generations to come. If you would like to join Team Tallulah and walk with us, please go to www.walknowforautismspeaks.org/arizona/teamtallulah and click on the join us link. If you cannot join us in person but would like to show your support with a donation, please go to www.walknowforautismspeaks.org/arizona/jenturrell and make a donation. Any amount you can afford would be greatly appreciated.

Thank you all for reading and caring.