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.



Not afraid of Santa!

Last week we took the kids to see Santa after the Christmas parade- they all did great. I was so proud of Waylon for sitting on his lap, and he even was able to repeat "thank you" for his candy cane (with prompting.)

Waylon also was very well behaved at Caden's school program last night and I was able to snap another good picture with Santa!

Yesterday I got to sit down with Keenan, Waylon's speech teacher at ABCnD, to go over the results of his evaluations.
Of course, his evaluations compared to other four-year-olds aren't very good, (his ranking in most categories for his age group was in the 1st percentile) HOWEVER his teacher emphasized that a more accurate way to evaluate Waylon would be to compare how much progress he's made. Of course over the past year Waylon has made HUGE progress. He is preparing new goals for Waylon's speech program, because Waylon has surpassed most of the initial goals they set for him.
Just like Waylon's preschool teachers, Keenan had lots of praise for what a great kid Waylon is. He said he loves spending time with Waylon at school- he actually said Waylon is "my guy!"

We have lots of friends in the Autism Society who have children with autism. Some of them have no speech problems, and some of the parents whose children are verbal say that after lots of therapy they finally started talking. There are also some people with older children who are still non-verbal and use an electronic device to help them communicate.
With Waylon's fourth birthday coming up, I hope and pray and wonder: Will this be the year?

What a day...

Well today has really been a challenging "day in the life of autism." Some days I think we've got it all under control, but today was definitely not one of those days.
Every morning when I drop Waylon off, I make a point to make eye contact with him and say, "bye-bye." And he usually echos "bye-bye" before I leave. Today was his first day back at Parker after the Thanksgiving break. He covered his eyes and walked in the school backwards and refused to repeat "bye-bye" back to me. After I tried for quite a while I was sure the teacher was ready for me to give up and leave so they could get on with their routine, so I did. But it was a little disheartening.
His note said he didn't work very well at school today, but he was happy to see me when I picked him up, and was even pretty well behaved this afternoon. I caught him multiple times messing with the Christmas tree ornaments, but he wasn't just being ornery. He was sorting them out onto different branches- shiny bulbs on one branch, dull bulbs on the other.
Later, he started getting out shirts to put on (this has been a new thing for him lately.) By the end of the afternoon he had put on five long-sleeved shirts all by himself. He looked like a marshmallow.
He spent a lot of time by himself, (I was trying to get homework done) and of course he pooped in his pants while he was alone in his room. (But just once!)
The post-Smokeoff family get-together was tonight at Pizza Hut, and I decided he wasn't going to wear five shirts to town. He didn't go down without a pretty good fight. I got the shirts off of him, but as soon as I turned around he was putting them back on. Finally, we bargained on a long sleeved flannel shirt and a sweater over that. Then of course, when we were ready to leave he refused to wear his coat. So we let him go with the jacket that he loves. (I'm sure he was warm enough.) He fell asleep on the way into town so we were able to sneak past the claw machine on the way into Pizza Hut (That was God doing us a favor- the claw machine is our biggest nightmare.)
He woke up in Pizza Hut, but spent most of the time underneath the table, of course until he realized the door to the party room was open and he could jet out of there at lightning speed. So after we chased him down a few times (thank the Lord he didn't make it into the parking lot) we decided it was time to go. We snuck by the claw machine again successfully as we headed out the door.
When we got home we got him out of the jacket, but he crashed in his flannel shirt and sweater after spending a little time lining up cars on the coffee table.
Hopefully he doesn't want to wear it to school in the morning.

Waylon's line of vehicles tonight- notice that they
are in order of color: one red, one tan, three blue.