The Short List

I have a short list and I bet you do too. Everybody has one. It's the people who support you, who you can fully trust, who understand your child with special needs, who understand what it's truly like raising them. They just get it.

Odds are the people on your short list are your closest family and friends. Hopefully, your spouse is on your short list because being on the same page is paramount to raising your special needs child, staying sane and well...staying married. Thank God my husband, Steve, and I are on the same page. He is definitely number one on my list and I am number one on his.

And I'm sure there are a few standouts. Like your child's teachers and therapists who "get it" on a whole other level. They can hear your child say one thing and look at you with amazement because they know what it took to get there. Evan recently came out of speech therapy and noticed a man in a white lab coat. He said, "Hi, I'm Evan. What's your name? Are you a doctor?" His speech therapist, Irina (see photo above), looked at me with wide eyes and mouth agape. We just stood there smiling broadly at each other. No words necessary. It may have been a little improvement, but she recognized it. These are people that revel in the progress and celebrate alongside you.

Maybe it's an aide. When you pick up your child after school, they report to you a little tidbit that most wouldn't even notice. Last week, Evan's aide told me he stayed at the table and completed the whole letter writing worksheet without trying to go AWOL. She knows fine motor skills are a big challenge and the fact that he didn't get up is a big deal.

These people understand your child and all their quirks -- and probably think they are darn cute too. Evan has gotten pretty good at making his scripting sound appropriate and authentic. When Evan sees his teacher from last year in the hallway and he asks her to pick him up, she already knows he's trying to reenact a scene from Beauty and the Beast. There's no fooling somebody on the short list!

The people that inevitably get on the short list and rise to the top at record speed are other parents of special needs children. They don't just get it -- they live it. These people speak the language. IEP, OT, NT, scripting, stimming. No need for a translation, they are fluent! When chatting together you probably finish each other's sentences half the time. Yesterday I went with a friend to pick up her daughter, who has selective mutism. We arrived at the school and all the parents were waiting on the sidewalk. We walked by them and stood close to the doors. She said, "I'm sure everyone looks at me like I'm crazy, but I stand here so..." "so, she can see you as soon as she comes out and doesn't have to search the crowd," I said. What seems obvious and necessary to us might seem weird or crazy to somebody not on the short list.

Notice it's called a short list. There are whole lot of people not on the list. Some don't understand, don't want to understand or just don't know how to. They are unsure of what to say. Some like to explain everything away and wrap it all up with, "He'll be fine." They don't recognize what it takes to see progress and think they are just "growing out of it." Some are judgmental. Some just don't get it and never will.

So, here's to the people who do get it. They listen when we need to vent. They let us obsess over something until it's out of our system. They celebrate all the success and progress with us. They love our kids and we love them for it. They support us and hold us up when we feel like we just can't get through another day. And we couldn't without them.

Walk Day

Today we are participating in our first Walk Now for Autism Speaks. We will be walking with our children, our family, our friends. We have received donations from local businesses, family members, new friends and old friends. We have felt the support from loved ones as far away as Hong Kong and as close as right next door. We are truly touched at how people can rally together for a great cause. We never knew that Autism would touch our lives so closely. We have loved Evan since he came into our lives. The day we received his diagnosis we looked at him and had to remind ourselves that he is the same boy he has always been. The path ahead is the only thing that has changed.

The following essay was written in 1987 by Emily Perl Kingsley, about having a child with a disability.

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Echolalia...lalia

For those of you who haven't spent a day with Evan (OK you'd hear it if you spent 5 minutes with him), Echolalia (or scripting) is the repetition of speech which is often involuntary and compulsive. It's fairly common in children with Autism and Asperger's Syndrome and it runs rampant in our house.

After Evan's first birthday, he started speaking a few words like other toddlers his age. By 15 months he spoke about 60 words and we stopped counting. He was obsessed with naming the pictures in his Roger Priddy books and endless collection of flashcards. If somebody saw how we spent time in the playroom day after day they would think we were prepping him for his first standardized test. Although, I was daydreaming of Evan taking the SATs and doubling my pathetic score (yeah, it was that bad).

Shortly after Evan turned two years old he replaced the flashcards with a love of maps. He memorized all the states and had over 70 countries down (again trumping my geography skills). One day my pride started to turn to puzzlement. I think my first thought was "OK this can't be normal." I might have even tilted my head to the side and looked at Evan with an expression of bewilderment. We started to pay more attention to his speech. He sure did like to repeat dialogue from his favorite shows. He didn't seem to make observations or convey his feelings like other kids his age. No other two year old we knew thought it was fun to repeat a long list of classical musical composers. It didn't take long for us to realize his speech was memorized -- all of it.

After putting all the pieces together and getting him diagnosed, he started receiving speech therapy. And boy did he need it. We were so impressed and bemused by all the things he did say, we didn't realize all the things he didn't. He didn't express his feelings, ask for help, make observations, have conversations, or answer questions.

Eventually the speech therapy started paying off. He was progressing with his original speech and his scripting was not decreasing, but evolving. He still did plenty of "show talk" (as we call it). But instead of talking to himself, he started to direct the scripting at us and become more engaged.

He also began to alter the script to make it more appropriate to real life. This change meant that he got very good at fooling people. We had just returned home after a trip to Florida to visit Grandma and Evan came out of his occupational therapy (OT) session with his therapist. She said, "You won't believe it. Evan told me all about going to the lighthouse and watching the waves in the ocean with Grandma." I had to break the news that she was duped. It might have happened on the Disney channel, but not on our vacation.

One trick to determining what is real and what is scripting is the inflection of Evan's voice. His memorization is so precise that the scripted speech sounds exactly like it is spoken on television. This means that most of the day it feels like we are living with a very enthusiastic cartoon character. Although not many people can tell the difference. During one recent playdate Evan asked for a blueberry muffin. His friend Ava quickly chimed in, "No, no, that's show talk. That's from the show Strawberry Shortcake. There's a guy named Blueberry Muffin." I told Ava, "Good thinking, but considering Evan is currently trying to break into the pantry, I think he actually wants a blueberry muffin."

Sometimes Evan's excessive scripting can put him in a precarious position. Just yesterday I was upstairs tackling the laundry while Grandma kept an eye on Evan. He was watching a show from a headstand position on the couch (if I knew why I would tell you). My mom said she heard him saying "Help me, I'm stuck." over and over. She assumed he was doing 'show talk.' Evan finally said, "Grandma, don't just sit there! Come and help me!" Too much scripting and he became the boy who cried wolf.

Occasionally, the scripting can be pretty darn cute (well, until the 14th time in an hour). But one little sentence of original speech recently had the whole family in stitches, unfortunately at someone's expense. We had a bunch of relatives over for dinner when one family member stood up and walked in front of Evan. Let's just say this person has a larger-than-average behind. With wide eyes Evan exclaimed, "Wow, that's a big giant tushie!!!" I am sure this person/Evan's victim is going to read this. I want to say thank you for allowing me to relay this story for the greater good of Asperger's awareness. The comment was extremely rude and I am definitely not reliving the moment and laughing right now. Really I'm not...OK just a little.

His scripting can also really come in handy. It has helped Evan memorize social stories, which teach him steps to follow for specific tasks, and thus become more independent. It also has assisted Evan in remembering ways to initiate conversations. Leaving OT one day, Evan saw another boy around his age. Evan went up to him and the conversation went something like this:

Evan: What's your name?
Boy: Jack.
Evan: Hi Jack. I'm Evan and this is my Mommy and Ms. Tiffany.
Jack: How old are you?
Evan: I'm 4.
Jack: I'm 6.
Evan: You said it brother!

Yes, I could tell it was directly from a script and the last line was straight out of Team Umizoomi (complete with sweeping hand gesture). But he was having a conversation and Jack actually thought Evan was pretty funny.

Sometimes he can take his scripting to a whole other level. There are costumes, accessories and a mirror to watch the whole scene play out. He also has a very willing accomplice in his little sister. Lia copies everything her brother does, including scripting. Sometimes we say we have a second Aspie by affiliation. They can reenact scenes from Max and Ruby and keep each other entertained for hours. OK maybe 45 minutes, but that's enough time for me to prepare dinner, so it works for me!

Unfortunately, there are times where Evan's scripting greatly increases. When he is stressed or overwhelmed, he becomes more detached and delves deeper into his world of scripts. Recently, my closest friends from high school came to visit. The first few days we had an extra 7 people in our house. Evan barely engaged with anyone and amped up his scripting. I tried to explain to my friends it wasn't usually like this. As my friends returned home and our number of house guests tapered, Evan returned to normal. Well, our definition of "normal."

These days Evan is getting so much better at recalling information and answering questions. A few weeks ago I was cleaning up downstairs while Steve was giving the kids a bath. I went to the counter to put away my jewelry when I realized my engagement ring was missing. I ran upstairs to the bathroom and asked Lia (Evan's two year old sister who takes out her hair clip 18 times a day, but always tells me where it is when I ask), "where is Mommy's ring?" "I don't know," she answered. Damn, no luck. I turned to Evan, "where is Mommy's ring?" He paused and I prayed whatever he said next was not from the last episode of the Backyardigans. "In the playroom, behind Mack." I rushed downstairs and there, behind Mack the truck, was my engagement ring. OK, it was wet from apparently being in Evan's mouth, but I found it. And I found it because my son told me where to look.

As his speech therapy continues, he will work on pragmatics and be able to use more original speech. He's expressing himself better and progressing everyday. We still cherish every time Evan says something completely authentic. It becomes a little gem we hold on to until the next one comes along.

Forever Friends

Evan was such an good baby that the decision to give him a sibling was an easy one. When he was 17 months old we found out that I was pregnant and later learned that Evan would soon have a little sister. Lia Grace was born September 6, 2007, the day before Evan turned two years old. We wanted them to be about two years apart, but didn't know they would end up that close! The relationship that developed between Evan and Lia can only be described as a winding path with many twists and a few very sharp turns.

Every parent knows the first few months with your new baby are marked by how long the baby nursed or how many ounces of formula the baby took and how long the baby slept. Especially how long the baby slept at night, when every minute counts and you are praying for the day you can celebrate their most important childhood milestone (no, not starting school, riding a bike or losing their first tooth), but sleeping through the night. For this milestone also marks the return of a mother's sanity. If this baby is not your first, then this theory is shot to hell because your sanity went out the window a long time ago. With your firstborn, time runs like molasses and you can gaze at your baby endlessly and actually have time to shower and eat a full meal. With your second baby, you are equally in love, but somehow you blink and they are two years old and you hope you took some pictures during the last couple years because you can't remember much of how it went down. You also have to adjust to this new busy life with sacrifices, like grocery shopping at night with the weirdos and blow drying your hair biannually.

When Lia was a baby, Evan was two years old and undiagnosed. There were a few moments of concern, but overall we didn't realize anything major was amiss. We did learn very quickly that Evan was not a fan of Lia's high-pitched cry. Every time she wailed, so did he (hello sensory issues). After much explaining about why babies cry and soothing them both after an outbreak of double tears, things began to calm down. Lia was a happy baby who ate well and slept through the night at ten weeks (just like her brother). Evan was not particularly interested in her. By not interested, I mean she basically didn't exist in his world. And at this time "his world" was a very insular place and it would still be a while before we realized this and worked to get him out of there.

But Lia was very interested in her brother and watched his every move. She laughed at everything Evan did and as soon as she could move it was game on. She wanted to grab his toys, his sippy cup, his hair. This was during Evan's "everything has its place and it's usually in a line across the floor that nobody should touch" phase. Yeah, she touched it and the aftermath wasn't pretty. His order was turning to chaos and he was not happy about it. We did our best to talk him through it and calm him down. In hindsight, if Lia wasn't there, Evan would have probably delved deeper into those rigid behaviors and we wouldn't have had the opportunity to show him how to work through those feelings of anxiety.

Finally, Evan started to realize Lia was around and could be put to good use. Evan has always been heavy into scripting. He will often repeat or act out dialogue from shows or movies. At two years old, Evan used very little original language. He was always scripting and soon discovered that Lia was a great prop. We spent a great deal of time teaching Evan that Lia had feelings and she didn't like to be hit over the head with a broom stick. Although I think she was just happy he was paying her some attention.

When Evan was three years old, he was diagnosed with Asperger's Syndrome and we immediately got him into speech therapy, occupational therapy and social skills. By the time Evan turned four years old we had seen lots of progress and were ecstatic. As Lia got older we realized that she was a little sponge and was picking up on everything. When the yard men would arrive and Evan would get worried she would say, "it's OK Evan, it's just the lawn guys, they're cutting the grass." When a movie scene was on that Evan didn't like, he would cover his ears and Lia would notice. She'd say, "it's OK Evan, it's not too scary" and go turn down the volume. His little sister had become his little protector.

A challenge with individuals with Asperger's is identifying with other people's emotions and showing empathy. Well, one day Evan woke up and was overflowing with empathy for his sister. We were going out to dinner and trying to get the kids out of the house. We pulled the classic, "OK Lia we're leaving without you." Evan grabbed Lia and practically dragged her out the door while telling us emphatically, "we can't leave Lia, she has to come with us!" We could tell by the tone of his voice that he really thought we were going to leave her and had to explain that we were just saying that to get her to hurry up. It happened again when we were out on a walk and I told Lia that the next time she dropped Emma (her favorite doll) I was not picking her up. Evan lunged over Lia and grabbed Emma for safe-keeping. Literal vs. figurative -- that's a hard one for Aspies.

Evan had always preferred to play by himself, but as Lia got a bit older they began to play together. There has been a lot of chasing each other around the kitchen, turning the couch into the Wonder Pets' fly boat, pretend picnics, and movie reenactments. Lia is always concerned about Evan and Evan is equally concerned about Lia. In the morning when everyone gets in bed together, the first thing I hear is Evan saying, "LIA!!!" His face lights up and he goes in for a big bear hug. She usually claws his face (she's not a morning person). But there is love and I see it and feel it and it sustains me. Then I put on a show and try to get 20 minutes more sleep.

I know the path of their relationship will continue to twist and turn, but I hope their love for each other will keep their bond strong. I hope they continue to protect each other. I know that Lia has already taught Evan so much and her place in his life is extraordinary. I hope she will feel the same way about him. Those first feelings of empathy and concern have swelled into serious love and affection. They are the best of friends. I know that if he can feel and show love with his sister, he will do so with others and have many more successful relationships in his life. But this one is so special because this one is forever.

Forging Friendships

One of the biggest and most constant challenges for individuals with Asperger's Syndrome is socialization. There are many factors that may contribute: communications difficulties, inability to read social cues, and an overall disinterest in fitting in or accommodating peers. This all rings true for Evan. The good thing is that he is so happy playing on his own that he has been oblivious to all the friendships formed around him and without him.

As parents, we have to teach our children with Asperger's all the things that come so naturally to neurotypical children - even something as fundamental as making friends. Evan takes a two-hour social skills class once a week where the instructors focus on things like taking turns, answering questions, maintaining eye contact, awareness of personal space and a multitude of other things that most people don't even realize they know and implement on a regular basis.

These skills are also reinforced during Evan's weekly speech therapy sessions. Many of his communication difficulties stem from Auditory Processing Disorder (APD). Auditory processing deals with how the brain recognizes and interprets sounds. Some symptoms may include difficulty maintaining focus, following multi-step directions and recalling information. Children with APD also need more time to process information and have a hard time understanding correct uses of language and answering questions. Luckily, Evan has an amazing speech patholgist that works with him every week, provides homework for reinforcement and suggestions for skill-strengthening games to play at home.

Because Evan struggles with communicating, he often reverts back to scripting (or echolalia). He memorizes books and dialogue from shows or movies and repeats things over and over. He loves to reenact scenes and if there is a mirror around, forget about it. I can't tell you how many times I hear, "you have to get him into acting!" People think it's adorable and funny, but at 4 1/2 years old we fear that the day the cuteness will wear off is looming. In fact, a few weeks ago, Evan was repeating dialogue from Dora the Explorer in school. One of his classmates said, "Evan, we're not in Dora world...we're in the real world!" Hopefully, the more appropriate language he learns, the less he will script.

Amazingly, we have seen tremendous progress on the friendship front. We have always had plenty of playdates with family, friends and neighbors. Evan would always be off on his own completely uninterested in engaging with the other children. Recently, that began to change. Though he still prefers to play on his own, he has begun to reach out. He'll ask, "what are you playing with?" or he'll say, "let's play catch." It is so great to see Evan playing ball with a friend, chasing each other around the kitchen or playing pretend with his figurines. It's been a long time coming. At school last week, he played a Clifford board game with a teacher and his classmate, Sofia. His shadow told me after some nonverbal prompting he was very comfortable taking turns, sharing and following directions. At the end of the game, Sofia looked at Evan and said, "you're my good friend."

To see Evan make a friend and develop a close bond has been the most positive and rewarding gift. Evan and Nicholas met in class and hit it off instantly. They are both happy, quirky, silly and adventurous little boys. They love to play hide and seek at recess and can often be spotted running around holding hands (the photo above was captured by their wonderful teacher Ms. Kelley). At the end of the day I get to watch them dart around on some private amusing escapade that keeps them both giggling nonstop. One day last month, as I gathered Evan's jacket and lunchbox, I told him to say goodbye to Nicholas. They embraced in a big hug and Evan said, "Nicholas you're my very best friend." Ms. Kelley and I looked at each other with beaming smiles and eyes brimming with tears. This may be Evan's first friendship, but certainly not his last.

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/