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/

The Mighty Movers

We'd been reveling in Evan's success and forging ahead with his weekly therapies, when November 12th rolled around. It was a day that I had dreaded, but had no choice but to face. It was the three year anniversary of my father's death, but the passing of time did not seem to make things any easier. Although I wanted to live under the covers for 24 hours I knew I had to throw it into Mommy gear at the first sounds of mumbling over the monitor. The morning rituals kept me busy and after dropping off Evan at school I had some time to run a few errands. Apparently they transferred that giant magnet under the island from Lost to Target. That store draws me in every week and I can't walk out those automatic doors without a cart full of stuff I had no idea I needed.

After some strategic trunk rearranging to fit all my purchases (yes, I need a snow cone machine) it was time to pick up Evan from school. I perked up when I saw his excitement after reminding him of our upcoming outing. We were all going to see the Imagination Movers in concert that night. It was his favorite show and also his little sister's. I dreaded the moment when that would change and there would be serious fights over the remote control. But for now we were all looking forward to the big show. Since we had front row seats and this was Evan's first real concert I knew I had to prepare him as best I could. Evan has sensory issues, so I talked to him about the crowds, bright lights and loud noise we would be encountering. He had come a long way in the last year in that department, so I hoped that there would be no major issues.

After a lively 45 minute drive to the venue and listening to every Imagination Movers song twice, we were ready to rock. Our seats were great and Evan seemed to understand that we were about to see Rich, Scott, Dave and Smitty in person. I'm not gonna lie...I was excited too.

The show was amazing and the kids were having a blast. Evan was dancing and singing and loving every minute of it. He did cover his ears a few times, which is what he does when he feels overwhelmed. Other than that, it was a major success. Since the guys were so close, Evan got lots of waves and high-fives throughout the set. The highlight was when Rich came down and knelt right in front of Evan. He was jamming on his guitar and Evan had his hands over his mouth like he couldn't believe it. He kept looking back at me with a face I will never forget. His eyes were in awe and his smile was huge. When I thought it couldn't get any better, Rich handed Evan his guitar pick. It was such a great moment!

An otherwise sad day was made a whole lot better. Evan was practically ambivalent toward the crowds and noise, which was a great accomplishment. The concert was so much fun and there is just nothing like your kids' smiles to lift your spirits.

www.nytimes.com/2009/11/03/health/03asperger.html?_r=1&scp=1&sq=aspergers&st=cse

A Powerful Identity, A Vanishing Diagnosis.
By Claudia Wallis
The above article was published on November 3, 2009 by the New York Times.

2012 may or not be the end of the world, but Asperger's Syndrome as we know it may be headed for extinction. According to Wallis, the diagnosis is "headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012."

This news must be troubling and unsettling to anyone who is in the Asperger's community. Though it is currently considered a form of high-functioning Autism, The label "Asperger's Syndrome" carries it's own definition, characteristics and pride. For as many general similarities present there are distinct differences. Yes, labels may be insignificant in that it doesn't change who a person is, but it does matter. The diagnosis is one of the important building blocks that lead to a better understanding of the individual. First there is Autistic Spectrum Disorder, then Asperger's Syndrome, then more precise issues. For example, a child may be diagnosed with Obsessive Compulsive Disorder, Sensory Processing Disorder or Pragmatic Language Disorder. On top of that there are the very unique characteristics and quirks that are specific to every person. Like the quote mentioned by John Elder Robison, "When you've met one Aspergian, you've met one Aspergian." Everyone is unique, but I truly hope they let the community hold on to that thread that binds them all together because it does matter. Here's an example:

Just imagine, the President passes a bill to eliminate Georgia from the United States. Georgia will be there geographically, but the name will be eradicated. He says, "it's so close to Florida - mine as well just consolidate and call it Florida too. Hey, that's one less state flag that has to be made. I know you guys got peaches and they have oranges, but it's all fruit. It's pretty much the same thing right?"

No, it's definitely not the same thing.

Birthday Surprise

Evan turned four years old on September 7th. We gave him lots of goodies to commemorate the occasion, but he gave us one big surprise. Since Evan was 15 months old he loved to memorize things. First it was words, then pictures from books and flash cards, then maps and names of composers. When Evan started memorizing all of his books we weren't too surprised. He loved playing computer games that taught pre-reading skills and I had briefly touched on the concept of sounding out words.

One night when Evan was reciting one of his bedtime books I realized he was now following the words and sentences on the page. I didn't think too much of it. My Mom came down to visit and celebrate Evan's birthday (and his sister's who turned two years old the day before). She brought with her the set of phonics books I had when I was little. I remembered learning to read from the books and was so happy she held on to them. We gave one to Evan and he opened it up and read...the whole thing! Surprise, my son knows how to read! I was in such shock. As a former teacher, I know what a long process learning to read can be. I couldn't believe Evan had basically taught himself. What a feat! I gave him the next book in the series and he read that, pausing to sound out any unfamiliar words.

A few days later I took Evan to his weekly speech therapy session. I mentioned to the pathologist that I had just realized that Evan knows how to read. She said, "Oh you didn't know? He has been reading for me since he started here in July."

Another perk of being an Aspie!

September to Remember

What a difference a year makes! In 2009, September brought with it even more reasons to celebrate Evan's progress.

After a fantastic summer, we were keeping our fingers crossed for a smooth transition back to school. Last year's first day of school was one of the saddest days ever. So there was no direction to go but up. Evan met his new teacher, Ms. Kelley, and seemed excited about going back to school. Sure enough, on the first day, he barely even said goodbye. He marched right into the classroom with a huge smile on his face. Major relief! He absolutely loved his new teacher and Ms. Josefa, his wonderful teacher from camp, worked with his class as well. This year we decided to have a shadow work with Evan once a week. This way there would be a skilled professional that could help Evan focus, guide appropriate social interactions, gather data on behaviors and work with his teachers. Ms. Aileen has been a great addition and instrumental in Evan's success at school. Every single day he makes a beeline for his classroom and I have to beg for a quick kiss goodbye.

Towards the end of the month I noticed Evan making better eye contact and asking more questions. He turned another little corner and it was great to see. When I picked him up from school his teacher said he looked at her and asked, "Ms. Kelley can I sit in your lap?" Later that week I took Evan to get his four-year check up with his pediatrician. While in the waiting room, Evan noticed a boy a little older than him tossing a small stuffed animal up in the air. He watched with a smile for a few minutes and then hopped off the chair and said, with his arms outstretched, "Throw it to me!" I couldn't believe he initiated play - with a stranger no less! They laughed and tossed the stuffed animal around until Evan's name was called.

A few days later, when I came to pick up Evan from school, I got a wonderful surprise. Ms. Kelley said Evan played hide and seek with a friend during recess. I think I stood there with my jaw unhinged for a few seconds too long, but I just couldn't believe it! His teacher said he had been interacting a little more on the playground, but this was a HUGE step. His shadow, Ms. Aileen, now knew what children were more open to playing with Evan and she would be able to help initiate games like hide and seek. At home, Evan was beginning to interact with his sister more. They were starting to play by chasing each other around the kitchen or playing with her dolls. Evan also interacted more by bossing her around. We would see Lia walk into the playroom and hear Evan say, "Lia go play with something else." Now that is what a brother and sister are supposed to sound like.

Since Evan was little he has mostly been attached to his pillows, diving underneath them every night when it's time to go to sleep. There have been a few stuffed animals that have managed to stick around. Every so often I would ask Evan to give them names, but he never would. I knew it was a very open-ended question that would take some thought and imagination. But little kids are supposed to carry around their tattered teddy bears with silly lovey dovey names! So I never gave up asking. On September 22nd it happened. After reading some books at bedtime, I picked up Evan's teddy bear with the brown silken fur given to him by his Grandmother when he was a baby. "What's his name?" I asked. Evan looked at the bear and paused. I saw the wheels turning and couldn't wait to hear what he was going to say because I could tell he was trying to come up with something. At that point I would have taken anything! If he had said Pooper Scooper I would have made a plaque with Pooper Scooper's name and birthday and treasured it forever. Evan looked up at me, smiled and said, "Huggy." A lovey dovey and totally appropriate teddy bear name that he came up with all by himself...and it was much sweeter than Pooper Scooper.