April 2nd is almost here!

Monday is the fourth annual World Autism Awareness Day.
Of course, helping others become aware of Autism is part of our everyday lives, but it's good to know the powers that be think autism is worthy of a "day." (Cancer, Tuberculosis, Malaria, Diabetes, COPD, AIDS, and Autism are the only disorders that the United Nations has officially proclaimed a "day' for.)
Some wear blue on April 2nd for autism, some use it as a day to raise money for research, and many attend special events to raise awareness. The Kansas City Chiefs defensive backs have a program called "We've got your back" as a support for people with autism, and every year they partner with Autism Speaks for a rally and balloon launch.
Check out this video from last years World Autism Awareness Day at Arrowhead. Zach went along with me to help with the kids, and you can find him, Caden, and Waylon all in the video with the Chiefs.

http://www.kcchiefs.com/media-lounge/videos/Chiefs-Celebrate-World-Autism-Day/56aed618-0cba-4b09-bba0-0857595f3b21

Well hello again...

So we are all still alive and well in the Katzer house. I know it's been a while since I've blogged, so here's a quick catch-up on our lives the past month.
After our visit with Dr. Hoffman last month, we decided to make some serious changes in Waylon's therapy. Travis started a new job with long hours, and my classes kicked up a notch, so getting him to and from ABCnD Autism Center was no small feat. We decided to try a different ABA program for Waylon 5 mornings a week, and having him go to afternoon preschool every day.
After just two weeks at Autism Concepts, Waylon is doing awesome. We had an IEP meeting this week with his teachers at preschool, who said if he worked as hard as he did last week for the rest of the year, he will make huge progress.
We did a week trial off of the artificial colors diet, and decided it was worth it to go back on. His teachers feel like he is more focused and works harder when he is off artificial colors.
The other night the kids were watching Dora and Waylon repeated every word Dora said. It was music to our ears!
So thanks to about 50 people who are helping us by watching the kids, hauling them to and from school and daycare when I am at school, and working with Waylon, we are trucking right along.
In the meantime, we have been working on finish Waylon's room and turning it into a "therapy room" for him to work with his speech teacher. Pictures to come!

An Artifical Coloring Free Birthday

Well, so far we've survived the holidays, the start of no artificial colors, Waylon's birthday, and back to school for everyone. Although it sort of feels like I'm doggy paddling with my head barely above the water, we are still afloat!
Of course, in usual Lindy-style, I piled way too much into the day of Waylon's birthday, which left Travis home with the kids to clean house while I was getting groceries and a hair cut. By the time I rushed through the frosting isle at Price Chopper I realized there is artificial coloring in every single brand and color of frosting (even white!). So I made a phone call to Mom for the homemade frosting recipe on the way to the ice cream isle, where after a hunt of most of the freezer section I found three flavors of ice cream without artificial flavors for his party. Do you really think they need to add caramel color to the ice cream? No. I don't think so.
Anyways, of course Waylon was asleep by the time I got home, (but Trav did get the house pretty clean!) and he was in no mood to wake up. When we got out the presents, he had absolutely no interest in finding out what he got, so after a couple tries we decided to wait until after cake and ice cream.
Mom helped me whip together the frosting real quick and we threw together a pretty cute little birthday cake. Of course Waylon wouldn't open his eyes to look at it.

Trying to get Waylon to blow out his candles

We sang Happy Birthday and tried for about 5 minutes to get him to blow out his candles, but finally gave up and decided to try again the next day.
The next morning we got up and headed to Monkey Bizness. He LOVED it. He just went crazy with all of the sensory input there; man did he go to town! We saw one of his friends from ABCnD Autism Center there with his parents, and he was in sensory overload with all of the kids and noise and was not interested in playing at all. Monkey Bizness was definitely a good choice for Waylon though!

Waylon climbing high at Monkey Bizness

When we got home, we sang Happy Birthday and he blew out the candle like a champ! He ripped open the rest of his presents and played with the ones he (actually I) opened the day before. It was like a whole different kid!

Waylon's birthday party, Take 2

Waylon found a bag of Doritos after the Chiefs game Sunday, and had an artificial coloring fix. But other than that, he has done really well. I've talked with his teachers, and the schools are on-board with it, but I sent extra snacks just in case the rest of the kids are having a snack with artificial colors. I've called the bus barn to let them know of our new schedule (because of nursing school.) Talked with both daycares, and got the extra days lined out there. Thanks to my awesome sister Amy, we are still going to be able to get him to ABCnD while I am in nursing school crunch time. Mom's helping out with Caden after school, and Travis is pulling a huge extra load of picking up all the kids when he gets off work. (They're in three different places!) We have also restarted the fish oil and beefed up the gummy vites, and I'll be searching health food stores this week for the other few vitamins that aren't in his gummies. And I've found some great therapy ideas online that I am excited to try at home in the evenings. I'm hoping they'll be fun for all of us to do together. I'll let you know!
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Here's to a stressful, but fun, successful, and happy, artificial coloring-free 2011!

A visit with the doctor

Yesterday Waylon had his regular follow-up appointment with his developmental pediatrician. Basically, we just go to ask questions and make sure we're on the right track.
We've been stewing over starting Waylon on a diet lately, and Dr. Hoffman agreed we should do something. He suggested starting by removing artificial dyes from his diet, and if that doesn't help try removing casein, then gluten. He also suggested we beef up the vitamins he is getting and be more consistent with his fish oil supplement.
He said that although Waylon has obviously made progress since his diagnosis, he is still moderately-severely autistic, and only one point away from being categorized severe. He said the therapy Waylon is getting is not enough, and suggested we try for at least 15 more hours of ABA a week. Yikes! Getting Waylon to ABCnD Autism Center two days a week is already a challenge!
He did feel like Waylon will talk eventually, but obviously couldn't tell us when. He said it's promising that he will be able to talk because he has already learned the benefits of communication with PECS.



A PECS book (similar to Waylon's)

 He also suggested we see a behaviorist to target some of Waylon's problem behaviors now, before he gets older and they become a serious problem.
So, now we have a whole new set of goals to work on. We're going to jump on the artificial dye restriction right away and we'll talk to the school district and see what we can do for more therapy. Maybe we can find someone closer to do extra ABA with Waylon. We're also going to try to do some more work with him in the evenings- although we're not trained ABA therapists, I think I've seen it enough to give it my best shot! Then we'll probably call the behaviorist Dr. Hoffman suggested to see if he can give us some tips to try at home.
We see him again in six months, hopefully with a much improved Waylon!

Happy Birthday Waylon!

Well, today at about 12:30 pm it dawned on me that today is Waylon's birthday! Poor kid! We aren't having his party until next week, and he obviously doesn't understand it's his birthday, so it just slipped my mind.
And, sad to say, the fact that he's turning four is really not something I want to think about. We need more time!
The next year will fly by and then he will be in kindergarten! Will he be able to talk? Will he be able to go to the same school as his siblings?
For me, the hardest part of having a child with autism is worrying about the unknown. Will he be a genius like Temple Grandin? Or will he be living with us for the rest of his life?
I wish I knew the answers!
Ironically, today's facebook post from Autism Speaks was advice from other parents on planning for the future. My favorite-

Although you need to plan for the future, don’t get unnecessarily “worked up” worrying about all the various “what ifs.”  Narrow your worries to immediate concerns. The “what ifs” may never materialize. Trust in yourself that you will never accept the way someone tells you to do something as being the “only way”! I have found the best result in everyday life has come from “thinking outside the box”. You must put yourself in their shoes and feel, smell, see, hear what they do and then you can address the situation. – Kim

So, here's the plan: We're going to keep pushing Waylon to do his best, with the best therapy and all the love and support we can muster. And if we give Waylon every possible chance to grow, we're going to trust that God will give him the happy and fulfilling life that he deserves. And that's that.

On another note...

On another note... (sorry I am throwing two new posts at you in one day)
 but I really wanted to say that tonight's Autism Society meeting was really great. Attendance was pretty low (probably because most people are home wrapping presents?) so we sat around and laughed and cried and best of all, shared our stories with people who truly understand.
One lady talked about her 43 year old son with Aspberger's, who has traveled the world- the Eiffel Tower, the pyramids in Egypt, the Osawatomie State Hospital- he's seen it all. =)
One lady was brave enough to admit that her son officially drove her to drinking this week! Three of us Moms decided we should scratch the ASD Moms coffee group for a ASD Moms "Whine" (WINE) Group!
One couple shared how excited they were that their 3 year old asked his first "Why?" question this week. (Awesome! I can't wait to hear Waylon say, "Why, Mom?")
Some parents needed advice on homeschooling, helping their young adults with autism find a job, insurance plans, getting their kids to sleep, etc.
We were able to find some advice from families who have tried the gluten-free diet and found it helpful, others who tried it and didn't see any benefit. We even took down some numbers of people with gluten-free recipes to share!

We are so lucky to have so much family who really cares, but being able to go talk to people who have been in your shoes is different- they have been there, and they have survived!
Hopefully Waylon will be able to travel the world someday, we just hope to keep him out of the state hospital! =)

PS- If you're interested with keeping up with the Autism Society, be their friend on facebook! http://www.facebook.com/topic.php?topic=19775&post=188101&uid=354811310135#!/pages/Autism-Society-The-Heartland/354811310135

Evaluation Results

You would think that we had a teenage daughter instead of an (almost) four year old little boy these past few weeks...
We are having some serious arguments about what clothes he will wear! At first he wanted heavy sweaters or sweatshirts, (but not his coat for some reason?) now he is into stripes! We are having to hide his dirty striped shirts in the bottom of the hamper, because of the terrible melt-downs he is having when we won't let him wear the same shirt again and again and again!
He seriously broke the laundry sorter last night trying to get to a striped sweater of Caden's that he has worn almost every day this week.
He has been wearing a stocking cap a lot though, and that seems to calm him down. Even the teacher has him wear it at school!

We had a meeting with Waylon's teacher and program coordinator at ABCnD last week, and I wanted to share with you guys the results of his last evaluation. Below are diagrams of the ABLLS testing they have been doing over the past couple of months at ABCnD. The therapists tested Waylon in 25 areas, and categorized what developmental level Waylon is at in each category. The chart begins at the bottom with very simple skills, and progresses to the top which are basically kindergarten level skills. The shaded areas show skills that Waylon has mastered in that category. Notice that in some areas Waylon has very few shaded areas (Vocal Imitation, Group Instruction, etc.) and in some areas Waylon has quite a few shaded areas (Gross and Fine Motor skills, even his Receptive Language scored well!).
Basically, we have about 18 months to get as many of those boxes filled in as possible. Waylon's teachers agreed he needs a new treatment plan, and we went over new goals that they will be working on with Waylon. When it is time for Waylon to be evaluated again, they will mark the boxes in a different color so we can see how much progress he has made!

You can click on these pictures and get a larger picture that is easier to read.