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.

Happy Thanksgiving!

I really love Thanksgiving. I think it forces people to set aside the hustle and bustle and really appreciate life.
Even though being a parent of a special needs child brings lots of worries and stress, we never forget to be thankful for all of joys in our life- including autism. Although autism brings its own unique challenges, our children are not in pain and they don't have any life-threatening diseases.

This Thanksgiving I am especially thankful that God has blessed us with a loving autistic child, because I couldn't bear to have a child who wasn't able to be held or touched by his mother. (Which is the case for many children with autism.)
I am thankful for Caden who keeps us grounded. (He has told us he would like to have another brother or sister with autism because they are so much fun.)
And I am thankful for Rose Mary, who keeps us laughing and takes our minds of things when we need a laugh the most.

More reasons for special needs parents to be thankful: http://specialchildren.about.com/od/needinspiration/tp/bethankful.htm

Happy Thanksgiving!

What is all of this therapy for?

Ok so I've been trying to think of questions you might have that I could answer for you. I'm going to start out with explaining Waylon's therapy, but please feel free to use the comment spaces to ask questions that I can answer in future blogs.

Also, I included lots of links here to help explain these therapies better. Feel free to click on them and read a little more information about each therapy.

So what is all of this therapy for?
Well, for starters, let's talk about the types of therapy that Waylon receives-

• About 3-4 hours of speech therapy per week.
• About 1-2 hours of occupational therapy per week.
• About 8 hours in a peer-model preschool classroom per week.
• About 14-15 hours of "Autism Integrative Therapy"
• And Travis and I work with Waylon in the evenings as much as we can with a method called Floortime.





Waylon and his speech
pathologist, Miss Jennifer

• Ok, so speech therapy seems obvious because Waylon is unable to speak. But instead of working on teaching kids to speak correctly (like most speech pathologists do), Waylon's speech path has to work on getting him to actually say words. When his speech sessions started about a year ago, he was not saying any words. Our amazing speech path Jennifer started teaching Waylon to imitate her actions and eventually he began imitating sounds and then words. He is now learning the correct usage of words so that hopefully soon he will be able to spontaneously say a word in an appropriate way. Within his speech time Jennifer also uses some ABA (also called discrete-trial if you want to google it.) ABA is kind of like a good-behavior reward system, and Waylon quickly learned that if he wanted a reward from Jennifer, he had to sit and work first. Waylon also receives speech therapy at ABC'nD Autism Center. His speech path there, Keenan, has been working with him on the Picture Exchange Communication System. (PECS) I think most of you have seen Waylon's PECS book; he can now build an "I want..." sentence to get what he wants. Keenan hopes to keep Waylon going until he realizes that it is easier just to say what he wants than to have to use the book to build his sentence. Keenan also uses some ABA methods while working with Waylon.
• I haven't written a blog about Sensory Processing Disorder, (I will do that next) but the basic idea of it is that some people with autism aren't able to process their senses. A light touch may feel very heavy (wearing a t-shirt could feel like wearing a suit of metal armor) or a very painful touch may not be felt at all. Waylon sees an occupational therapist at ABC'nD Autism Center and they do a lot of highly sensory activities together. The purpose of the sensory activities is to help him learn to sort out the sensory input his body receives so he is able to focus more on his daily activities. His occupational therapist at ABC'nD is really great; she has come up with scheduled activities throughout the day that help Waylon get more use out of his learning time. At home, Waylon has a trampoline in his room and we are getting ready to hang a swing so he has a place to go when he needs a break. We have learned a lot of sensory techniques (like chewing gum or squeezing his arms and legs) that help him wind down when he is over-stimulated.

 

• Waylon started going to the peer-model preschool at Parker as soon as he turned three. Immediately, we noticed a difference. Not only is he able to get speech therapy and occupational therapy there, but also he gets plenty of social interaction with the kids and teachers. Waylon's teacher there is a special-needs early education teacher. She is very good at teaching Waylon to become more independent and encouraging him to do his best. Being in a classroom with typically-developing peers is very good for children with autism to learn socially-acceptable behaviors. Travis and I actually attended a conference last fall where the man who first came up with the peer-model classroom idea was the speaker (Phil Strain if you'd like to google him.) He said he got a lot of grief from people when they first began (in the 1980's I think) about using typical kids as "child labor." After doing studies they concluded that both the typical kids and the kids with autism made advances two-fold their assumed development rate. If that sounds confusing, basically it helped the peer-models as much as it helped the kids with autism.



Waylon and his teacher


in the sensory room

at ABC'nD.

• "Autism Integrative Therapy" is a term that ABC'nD Autism Center uses for the combination of therapy that they provide. They use a broad spectrum of autism therapies, but the two main ones I'll talk about are ABA and Floortime. (If you're interested in some more googling, the others are Pivotal Response Therapy, Verbal Behavior, and TEACCH.)

 

1. ABA- I've already said that Waylon's speech therapists use ABA, but I didn't really explain why. People with autism are often unable to learn skills by watching the environment around them. The process of "natural learning" really does not come "naturally" to them. So, when a therapist asks the child to do something and they aren't able to do it, they are given a gentle prompt to help them understand what they should do. If they are able to do it, they are given a positive reinforcement- sometimes just verbally ("Nice job!"), sometimes a minute to play with a favorite toy, or usually in Waylon's case, a bite of a cookie or piece of candy. Ok I know this is kind of confusing, so here's an example of ABA-

   The kids in Waylon's class are each given a set of Mr. Potato head and his parts. Instead of seeing Mr. Potato Head, Waylon sees a ball to throw and pieces that he can spin on the table. Even though the other kids are building Mr. Potato Heads, Waylon is unable to learn how to put it together by observing them. Waylon's therapist asks him to put Mr. Potato Head's nose on. The first few times, she may have to use prompts to help him get the nose in the right spot. Once he is able to put the nose in, he immediately gets a reward. This continues, but the rewards get stretched out until eventually, when Waylon's therapist asks him to put together Mr. Potato Head, he will only receive a reward when it is all complete. This helped him learn how to correctly play with a Mr. Potato Head.

   ABA is currently considered the most beneficial treatment for autism that is evidence-based (which means it has been studied and proven to work.) If you're interested in seeing the results of the studies on ABA, check this out. 



Waylon throwing a toy
to me through the tunnel
during Floortime.

2. FLOORTIME- Alright, last but not least, I want to explain a bit about Floortime. Although there are Floortime therapists in the city, we chose to try Floortime ourselves. We are definitely not Floortime experts, but we read some books and are giving it our best try. Just like the name suggests, we all get down on the floor and we basically just play with the kids. There's really more to it than that, though. For one, we follow Waylon's lead. We engage in activities that he is interested in. By doing things he is interested in, we are giving him opportunities to "invite" us to play with him. (Initiating play is very difficult for kids with autism.) Also, we provide opportunities for him to communicate with us; by intruding on his play he is forced to interact with us. (If Waylon is lining up cars and we put a train in his row, he is forced to "tell" us he doesn't want it there.) Floortime encourages you to create opportunities for "conversations" with your child. Even though Waylon can't talk, a "conversation" between us might go like this:

   When we're playing in Waylon's room, he pulls me to his closet door. When he motions that he wants something from the top shelf, I know that he wants the playdough. Instead of getting down the playdough, I grab a shoebox. When he whines or somehow expresses to me that he doesn't want the shoebox, we have completed a "circle of communication." I could go on with other things until I finally grab the playdough. He has to somehow communicate to me and tell me that is what he wants. This encourages him to communicate and be social.

   Basically, by using Floortime, we are pulling Waylon away from "his world" and forcing him to be social with us. The idea is that this will improve his social skills, language skills, problem behaviors, and attention span.

"By doing what your child loves, your child will love being with you."

—Richard Solomon, MD, Founder of The P.L.A.Y. Project (based on the Floortime theory)

Even though we started doing Floortime for Waylon, all three of the kids really love it. Caden is always asking if it's Floortime yet, and they are definitely less whiny after we have spent that quality time together!

So what is autism?

Autism is an incredibly confusing disorder. It really is true that no two kids with autism are alike. Before you are able to understand Waylon, you need to understand these basic autism facts:

The word "autism" is really a short version of "Autism Spectrum Disorder." Think of the autism spectrum as an umbrella, and underneath it are 5 developmental disorders.

People with Autism Spectrum Disorders have a neurological impairment in the parts of the brain that control social interaction and communication.

You may have seen some people with autism who can speak normally but still have social delays; these people have Asperger's Disorder. Because Waylon is unable to speak and has social delays, he has Autistic Disorder.

I know using the words "social delay" sounds strange, but think of it like this- Even when a baby is just a few months old, they know that their mommy's face makes them smile, and they are social. A toddler can say words to get what they want, and like to be read to or sang to- they are being social. A typical four-year old is excited to tell you all about their day, and likes to play games with or even just chase around their brothers and sisters- they are being social.

These are all milestones that Waylon has missed because he is socially delayed. People with autism have difficulty learning how to reciprocate feelings and have trouble understanding social rules.

Kids with autism can also have:

• problems with dramatic play (playing kitchen, pretending to play house, etc.)
• problems understanding the typical use for toys (spinning the wheels on a car or lining them up instead of using them to race.)
• strange obsessions- (You might have noticed some of Waylon's obsessions are really long things and water.)
• severe tantrums or "melt-downs" (Thankfully this is not really a problem for Waylon.)
• behaviors like flapping their arms, spinning, or rocking back and forth. This is called "stimming."
• repetitive behaviors, or problems doing things outside of the normal routine.
• problems with sleep
• Sensory Processing Disorder (or Sensory Integration Dysfunction)- we'll talk about this another day.

Waylon and I were playing in his room a few weeks ago working on dramatic play with Woody and Buzz. I grabbed the camera quickly because this is one of the first times we have ever seen him actually stand up the characters and play with them! As silly as it sounds, this was a pretty exciting day!

The story of Waylon's diagnosis

During the summer of 2008, I was pregnant with Rose Mary, and Waylon was just about 18 months old. He was starting to babble, and one day when we left my doctor's appointment in Olathe he exclaimed, "car!" when he spotted our car in the parking lot. Over time though, he quit babbling, and when he started to ignore us when we called his name, we were concerned about his hearing. But at his two-year check-up, the doctor said he was simply behind because he had an older brother to talk for him. After a few more months without any progress, we scheduled an appointment with an audiologist. When we saw the audiologist in the Spring of 2009, she said his hearing was fine, but she was concerned that he didn't respond to the hearing test like most kids do. She suggested we see a developmental pediatrician. It took us nearly 5 months to get an appointment to see a developmental pediatrician in Overland Park. In September 2009, Dr. Hoffman told my Mom and I that Waylon had an Autism Spectrum Disorder. He gave us a few papers with different treatments that we could try, suggested a few books, and sent us on our way.

We had no idea how much we had to learn about the world of autism.

Luckily, we found a flyer on the Autism Society of the Heartland. They had several weekly information sessions in October that were presented by Speech Pathologists, Occupational Therapists, and other professionals that work with kids with autism. We learned a lot. But we also learned that we had a lot of work to do! So we started trying lots of different therapies.

Waylon has made a lot of progress with all of his therapy, but he still goes through phases where he regresses and seems to struggle. We feel as though we are in a race to get Waylon as far as we can before kindergarten. Every teacher that he has had so far has a degree in special education, and works with Waylon because they truly love special needs kids. Once we enter his grade school years, we will enter a whole new set of challenges. We hope Waylon will be able to attend the same elementary school that our other kids will attend.

One of the best pieces of advice we have received at our monthly support group meetings for parents of children with autism: "Remember that parenting special needs kids is a marathon, not a sprint." We have to pace ourselves now, because we have a long road ahead of us.

Our first post.

Hello family!
Welcome to our blog!
Travis and I spend a lot of time online trying to find advice and information about the confusing world of autism. Did you know that autism is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined? But still no one can really give a clear explanation of it's cause or how to cure it.
Recently Waylon's progress has regressed (I think that's an oxymoron?) and we are back online searching for what we should do next. I realized that some of the best information we've found comes from parents that blog about their experiences with autism. And because we think it's really important for our families to understand what's going on with Waylon, I decided to give this blog thing a try. My goal is not only to keep you up to date with Waylon's progress, but also to help you learn so you can help others understand more about autism.
And please, if you have any questions, feel free to ask! I love answer questions about Waylon and about autism, and it makes me happy to know that you're interested!