The E Theories

"You can't change a person, but you can change how you react to a person." I don't know who said it, but it is definitely true. If you are raising a child with special needs this quote can take on a new and deeper meaning. One day last year I was putting on Evan's pajamas and becoming increasingly frustrated with how slow the process was. I was rushing and he was ambivalent toward the task at hand. In that moment I realized two important things. The first was that he is going to get dressed at his own pace and if I stopped expecting him to be faster, I would stop becoming frustrated. The second was that if I continued to dress him he would not learn how to do it on his own. Lia, my two year old, was eagerly trying to get herself dressed because she wanted to and because she was able to. Evan wasn't interested and his delayed fine motor skills made it hard. This started me thinking on how I had to adjust the way I handled situations with Evan in order to help him and to maintain my sanity.

This brainstorming resulted my general do's and don'ts of raising my son with Asperger's. The key word is "general." Every child is different and every situation is different. I always keep these rules in the back of my mind and try to apply them as much as possible. Will I be applying them on a long flight packed with people? Not so much. I will be doing whatever I can to keep him quiet and happy and keep the "your kids better not kick me seat" stares to a minimum.

The first theory deals with "exposing." I feel like exposing Evan to all sorts of situations will help him in the future. One example is his sensory issues. Instead of sheltering him from crowded or loud places we exposed him to those situations. At three years old we decided to take him to his first movie. We talked about how it would be a big room with lots of people sitting in chairs. We explained that it would be dark and the screen would be very big and the movie would be quite loud. People would be laughing and maybe even clapping. We made sure to get a seat in the back close to the door. Emergency exit is right! We had his favorite snacks ready and he sat in our laps as the movie was beginning. The first half an hour was a lot of questions (him) and a lot of explaining, soothing and bribing (us, us and us). He became more comfortable and was able to sit through the rest of the movie. Madagascar 2 will always hold a special place in our hearts. We recently took him to Princess and the Frog and the only problem was he would get so excited he would forget to whisper. Many things don't come naturally for children with Asperger's and we have to be there to teach them and give them the tools to handle new or tough situations.

The second theory is about "engaging." This is a big one for Evan. He is a very happy kid and likes his happy little world. He could sit in front of a mirror and script for hours, but that is not helping him. It is up to me (and any teachers, therapists and caregivers) to pull him out of his comfort zone and try to engage his mind. During these times we do activities that help with his speech like worksheets, games or question cards. We might play games outside that help with his motor skills like bike riding, ring toss, or hopscotch. I also like to try to get Evan to color, paint, or do other activities that help strengthen his fine motor skills. We may just play together where I can enforce social skills like turn taking, cooperation and conversational speech. I do believe that there has to be a balance. He also needs his own time to play where he is completely relaxed. I am pretty sure for Evan, my idea of play is more like work.

My first "don't" is a tricky one. I call it "enabling." As a mother our natural instinct is to make our child happy. But when you have a child with Asperger's it is a whole different ball game. What might make Evan happy is owning every single Eye Spy book in existence. But if I gave in I would be in debt to Barnes and Noble and more importantly I would be feeding one of his obsessions. At some point he has to learn that that can't always happen and work through the consequences. When Evan wants me to participate in scripting and be a character from the movie Heffalump, I can't always give in. Even though I think it's adorable that he wants me to be Kanga to his Roo, I have to redirect him and try to get him to stop scripting...at least some of the time.

My last rule is about "expectations." As I mentioned before, you have to adjust your outlook and be realistic. The more you know about Asperger's the more you will know what to expect in terms of developmental milestones and behaviors. You have to know who your child is and what makes them tick. I can't expect Evan to finish his meal at the same time as his sister, even though she is two years younger. I can't expect Evan to interact with his peers like his other classmates. Expectations only lead to frustration and disappointment and one should never feel that way about their child. I have learned not to expect Evan to be like anybody else but Evan.

Potty Process

Potty training is stressful. Potty training a special needs child is a process (which may include heavy stress, loss of sleep, general anxiety and a few post-bedtime cocktails). Every child is different and children with Asperger's definitely have their own challenges and quirks. I wish there was a special recipe for potty training success, but there's not. Trust me - I searched...and searched and searched.

During Evan's 18-month check up, his pediatrician said we should introduce potty training. We were a little surprised but, the naive first-time parents that we were, went out and got a little Baby Bjorn potty for the bathroom. We would say to Evan, "you go poopies and pee pees on the..." and he would say "potty!" Potty training was going to be a breeze. We were so not worried. When Evan was 2 1/2 and after that damn potty sat in the corner and taunted me for months I decided to start researching readiness signs. It didn't look like Evan was showing any signs. "well, boys learn later than girls right?," I thought to myself.

After he was diagnosed with Asperger's, I realized his lack of signs was probably due to his developmental delays. That took some of the pressure off. Every night we would put Evan on the potty before bath, but he was never able to go. We would also try throughout the day in hopes that one day it would miraculously happen. One day we arrived home after a long car trip where the kids had fallen asleep. I carried Evan inside and put him right on the potty. He was half awake and started to go. He was just as surprised as we were! Because it just happened naturally and he was able to understand the sensation it became the first major step in the potty process. After that he would go occasionally on the potty, but was never able to stay dry for long.

The summer before Evan was to turn four years old I revisited the idea of potty training. He only showed one or two signs at that point. I read Maria Wheeler's book, Toilet Training for Individuals with Autism or Other Developmental Issues. It was very helpful, but it was still hard to understand why Evan was not really getting it. His speech therapist at the time was trying to convince me that he was ready and that I should just give it a try. Reluctantly (and I mean reluctantly) I agreed.

If I could go back in time I would swiftly erase those five days from my life. Evan was certainly not ready, didn't get it and had about six or seven accidents a day. I had to have him sit on a towel in anticipation of said accidents (see photo above). I swear those five days I was either in the bathroom with him, washing his soiled clothes or staring at his pants waiting for the next accident. It was back to Pull Ups for him and major relief for me. I knew success would only come when he was ready. I was going to trust myself to know when the time was right.

The Fall Evan turned four years old was a turning point. He started to go on the potty more consistently and was staying dry more frequently. He also finally seemed interested in the process. His level of engagement showed me that he was beginning to understand the concept. His school shadow and I came up with a plan. We were to start at home during Thanksgiving break so he would have more reasonable intervals (and hopefully less accidents) once school started the following week. I explained everything to Evan with the enthusiasm of head cheerleader. There was a whole rewards (aka bribing) system. We had a sticker book and added a new sticker every time he went to the bathroom and had small gifts for going #2 or for telling us he had to go. He was more concerned with getting back to his toys or computer games and the sticker book was banished by day three. We started by taking him every 20 minutes. That was difficult because he did not want to be continuously disrupted from whatever he was doing at the time. When there were no accidents we would increase the time. Going #2 was a bigger challenge. Basically it came down to intense surveillance and figuring out when he was going to go and just getting him there in time. Keeping a stack of his favorite books in the bathroom was our saving grace. He complained every time we took him, but once on the potty he was happy to sit and read.

It was shockingly a lot less painful than I had anticipated. Probably because when the time is right - the time is right. By week two there were few accidents and by week four there were virtually none. The problem was that his success fell on our shoulders. Many of Evan's speech issues are due to his Pragmatic Language Disorder. It is very hard for Evan to communicate when he has to go. We (and his teachers at school) are responsible for taking him to the bathroom every two hours. Luckily, he has just started to tell us when he has to go #2. So the process continues.

The Window

I love a good book and if a recommendation is glowing and persistent enough chances are I will be at my local bookstore within 48 hours. But when my friend recommended Jenny McCarthy's book Louder than Words I was pretty skeptical. Evan was two years old and my daughter was just a newborn. The second I became a mother I felt like my heart had pretty much exploded and all my emotions were heightened. Watching coverage of the Iraq war left me in tears, "but that is somebody's son!" I decided I would have more control reading my news online. And if a movie or book was about the illness or death of a child I wouldn't touch it with a ten-foot pole. But my friend wouldn't let up and eventually mailed the book to me. McCarthy's story about discovering and conquering her son's Autism was deeply moving. At the time I thought her Evan and my Evan shared a few traits (beyond their name). Of course her son's behavior was more intense and extreme than my son's, so I quickly dismissed further thought...little did I know.

A year later when Evan was diagnosed with Asperger's Syndrome, I reread Louder than Words with a different set of eyes. One thing that stood out was McCarthy's talk of "the Window." She stated there is a period of time between the ages of two and five (and now people are saying it starts even earlier) where you can pull a child out of their Autistic world. I believe if you have Autism or Asperger's Syndrome you always will. But early intervention can dramatically improve a child's behavior, motor skills, speech and overall level of functionality.

I think when it comes to Asperger's Syndrome this topic is extremely important. Children with Autism are being diagnosed at an early age because people are more aware of the signs and those signs are quite noticable. Whereas children with Asperger's are still being diagnosed later, often during their elementary school years. Their delays might not be as significant. They may speak well, but that speech is often scripted. They may be very bright, but not very social. You really have to understand Asperger's and put all the pieces together to recognize it in a child. And with that recognition comes the ability to seek out therapies, classes and schools. The earlier the intervention, the more time for progress.

A great article about the effectiveness of early intervention with Autistic toddlers:
http://www.cnn.com/2009/HEALTH/conditions/11/30/autism.study/index.html

An organization dedicated to improving Autism screening practices and lowering the age of diagnosis:
http://www.firstsigns.org/