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!