Asperger's Child: From Mom's Concern To Diagnosis, And Beyond
My Son's Journey Through Asperger's.
Having a child with Asperger's Syndrome is the most confusing, exasperating, embarrassing, helpless, innocent, energetic, fun, and amazing experiences I have ever been through. And one that I will continue to learn from for the rest of my son's life.
Our journey has only just begun, but I wanted to share what I saw before the diagnosis. Why I suspected Asperger's by two years of age. The things that Christopher would do, and wouldn't do, that made me sure my son was looking at the world through a different light than the rest of us.
Setting The Stage.
A short story about me
I am the mother of two children, a 16 year old girl and a 5 year old boy at the time I started this lense. When my daughter was born I searched for a career that would allow me to be near her as much as possible, and, with my Dad's help, I found a job as a Daycare Toddler Teacher. I had no experience, but the Director took me under her wing, and that was the start of my childcare experience. For 15 years I worked in various aspects of daycare in Oregon, and attended several seminars. The information on "typically developing children" and the "appropriate level of fine and gross motor skills" was constantly being taught. I always took some courses on ADHD and Autism because we would have children with these challenges at the daycare at times. It all sunk into my brain and gave me a solid background to draw on when my son came along.
Why Do You Want To Label Your Child?
The #1 question I was asked.
The more I pushed for a diagnosis of some kind for my son, the more this question came up. Just why did I want my son "labelled"?
Because I was going to give my child every chance possible to be successful in life. Asperger's people learn in a different way, and have trouble with transitions through the day. For Christopher to be able to function and learn in school with his peers, he was going to need help to stay on track. Who am I to withhold the services that will help make his life a little less stressful and a lot more productive.
New Video About Living With Autism
Beautiful words and music! Sung by Thanh Bui with music by Fiona Johnson and words by Valerie Foley. Inspired by those who live with an Autism Spectrum Disorder.
My pregnancy with Christopher was fairly typical. I was 38 years old and decided to have amniocentesis done to rule out some potential problems. Everything came back fine and the pregnancy continued without a hitch...until August 12th 2003.
I had been having contractions since early morning. At my appointment that afternoon I was told that active labor had started, and I was going to have a baby today! Christopher was due on September 9th, but chose to arrive almost a month early. Luckily everything went well and he arrived just a couple hours later.
As I said earlier, Christopher has been diagnosed with Asperger's, but at birth he had a different hurdle to jump. At the left corner of his mouth, at his left ear and in his left nostril he had 4 skin tags. When he peeked at us with both eyes, we noticed that the left one was smaller. After another day the Ophthalmologist had researched the skin tags and eye problems and discovered that Christopher was born with Hemifacial Microsomia. If you search the name you can end up with all sorts of scary stories of possible problems...in reality Christopher was very lucky to have only an eye problem.
We counted ourselves lucky and took a beautiful boy home with us.
Toys For Asperger's Children. - With Christopher's Seal Of Approval.
These are a few toys that Christopher really enjoyed as a young child. Toys that held his attention, challenged him, and helped him release anxiety.
Meet Baby Christopher.
Sweet, happy boy.
As an infant, Christopher was a pretty good baby. He wasn't overly fussy, and he ate and nursed well. Looking back on behaviors I can see some mannerisms that were different than the other babies in the infant room at the daycare.
When laying on the floor Christopher would start kicking one foot...like he was trying to kick start a motorcycle. It would happen if he was under the "play gym", or if you were talking to him. As he learned to sit upright, he spent some time in the exersaucer (a stationary "walker" with bouncy supports). Most kids love to bounce using both feet at once...Christopher would "jog", alternating feet, for several minutes at a time.
His bouncy seat had a lighted arch that flashed when he kicked his feet. He would accidentally kick...see the lights flash...get excited and kick again. His eyes would get big and his movements were jerky...if there was a picture of "overstimulated" in the dictionary this would be it.
Christopher was late to crawl and walk. Crawling happened on his 1st birthday. Walking didn't come until 18 months, partially because he was put in AFO braces for stability. Kids with Asperger's are known to have some motor coordination control problems as well, and that may have contributed.
Christopher's Repetitive Play - again and again and again.
People with Asperger's will often repeat motions or phrases over and over. It's sometimes referred to as "stimming" and helps them to focus or calm themselves. Here he is mimicking a toy he's been playing with that spins balls around. Spinning balls, wheels, carnival rides, merry-go-rounds, etc. all create a calming feeling for a lot of Autistic kids.
The Terrific Two Year Olds!
In which Christopher starts obessions.
Between 20 and 24 months of age, Christopher transitioned from the infant room at daycare to the Toddler room. Two other kids moved from the infant room about the same time as Christopher, one about a month older and one a month younger. This set up a great way for me to gauge the development of all three children.
Christopher enjoyed repetitive action toys, even if they were infant toys. Anything that would pop up balls over and over, spin around and around, or swing back and forth. For 20-30 minutes at a time he would watch the action start and stop, and get furious if anyone wanted to touch the toys parts.
Light switches and door knobs became action toys as well, and no toddler locks could hold him in or out.
At this time the other two kids were building with blocks, coloring, pretending in the kitchen, and creating follow me games around the room. Christopher would show interest in what they were doing and mimic, but never played with or added to the activity. He would do art projects, as long as it didn't involve squishy or gooey things, and didn't participate in dramatic play.
Christopher loved music. He sang everything from "Twinkle Twinkle Little Star" to popular songs on the radio. He could even sing the correct notes most of the time. We would use his favorite songs to help him calm down at stressful times.
At two years old Christopher began showing his frustration by banging his head on the floor or table repeatedly. Sometimes the fits included kicking and throwing things. If kids touched the toy he wanted, or he had to stop playing with something he would become frustrated. The one thing that helped him calm down at this age was a facial tissue...he would rub it between his fingers and suck on his bottom lip. I was always told that he couldn't have Autism because he didn't have any repetitive behaviors, but these behaviors only happen when he's tired or frustrated.
Important To Remember...
Signs of Obsessive Compulsive Disorder and Asperger's can be similar.
The main difference between the two is this:
OCD obsessions are not enjoyable. They use compulsions to get rid of them.
Asperger's obessions are enjoyable. They often lose track of time, and focus on only the obsession.
Educate The World About Asperger's.
A few books on Asperger's Syndrome and how it affects everyone. Education is always the best way to start understanding something new. Get the perspective of professionals, parents, and people with Asperger's.
The Preschool Years.
Christopher goes to Early Intervention Classes
By Three years old Christopher had shown a strong interest in how things work. Where the water came from and where it went, How the infant swing worked, where the batteries were in every toy, and ceiling fans!
Christopher's interest in water helped lead him to the toilet and potty training. He picked up on peeing in the toilet pretty fast, although it sometimes wasn't a priority. Bowel movements in the toilet didn't happen until about a month before his 5th birthday.
He tolerated art projects...not even wanting to color. He would sit down, draw one line, and say he was done.
Christopher started to organize the way he played. Shape sorters were always done in the same order. Colored toys were always stacked in a certain color order and taken down in a certain order. He would ask the same question over and over, and expected the same answer back.
Early Intervention finally listed Christopher as "otherwise health impaired" because of his lack of social development, and enrolled him in 3 year old preschool. He went to school 2 days a week for 2 hours. He continued to do well academically...he had learned his colors, shapes, and letters by 2 years old. Memorizing things was easy for Christopher, but playing with and communicating with other kids wasn't happening. He would get frustrated, and scream and kick throughout the day at school.
I had been suspicious of his behaviors by 2 years old because of other children I had seen with Autism, but I doubted my theories. At 3 years old I finally decided, with the backing of my fellow teachers, that I needed to get him tested. I convinced his Pediatrician, and got a referral to the Children's Hospital in Portland OR.
Christopher Growing up. - Life in picturesClick thumbnail to view full-size
4 Year Old Preschool.
It took several months to get a date for Christopher to be tested at Doernbecher's Children's Hospital. In the meantime, we were gathering more information from his new teachers at his 2nd year of preschool.
The first couple of weeks of a new school year are the worst. Asperger's kids don't do transitions well. A new teacher, new classroom, and new kids was a lot to get used to. His new teacher seemed to clue into his difficulties. She gave him "fidget toys" at circle time, or let him sit outside the circle if he wanted.
After talking with his teacher about his frustration level, she clued us in to the mini trampoline. It seemed that on days when he would jump on the mini trampoline before class, he was able to cope with little frustrations better. There's something in the brain working on balance and the bouncing motion that helps him "center".
Christopher also likes to touch everything...faucets, microwaves, computers, light switches...all of which they had in the classroom! They started to hang "stop" signs on things he wasn't supposed to touch. It made him hesitate, and eventually learn to not touch all the time. The water faucet was too tempting though, and they had to cover it with a box...out of sight, out of mind.
By November, about 2 1/2 months after his 4th birthday, Christopher went to be tested for Autism. It was a 3 to 4 hour battery of tests. I had several pages of questions I had to answer on paper, and later verbally to a doctor. Christopher had a blast, because he loves to interact with adults. He got to play with a lady in a room full of toys, and talk to a psychiatrist in another room, and get checked out by a pediatrician. Throughout the day he charmed his way through all the obstacles, and was dubbed not Autistic...and by the way he is so "charismatic and cute"!
Later, when the hospital liaison called to find out what I thought about the testing, I told her the truth. I was surprised that a test for high functioning Autism didn't include any interaction with other kids, because that is where they have problems. I was disappointed to say the least.
Videos that shed light on Asperger's.
In this day and age we are lucky to have "You Tube". A platform where anyone can can say what's on their mind...and many people do. People with Asperger's and Parents of children with Asperger's have used video to help the rest of us understand what is going on in their minds. After hearing "it's just a phase he'll grow out of" over and over...it was comforting to know what other people were going through.
Kindergarten And Beyond!
Because Christopher still refused to initiate play with other children, he was still listed as "otherwise health impaired". When it came time to talk with the school about Kindergarten we got some good news. His teacher's at preschool were unbelieving of the outcome of his Autism test, so we met with the Kindergarten teacher and special education coordinator for the school. The information about Christopher's behaviors and concern about his anxiety level were enough to keep him in the Special Ed. program. They wanted to observe him in the classroom, and do further testing at the local level.
The Teacher's at Christopher's new school made a picture book of the classroom, playground, and people at school so he would have a better transition to Kindergarten. We also visited the classroom a couple days before school started to become familiar with the room and teacher. It was a rough start, but only took a week to calm down and get into a routine. True to his past, his biggest trouble lies in interacting with other children.
The first half of the school year took Christopher through a roller coaster of emotion. He loves being around other kids, but they don't play with things the way he thinks they should. Asperger's kids have very set ideas about how things should be done, and all these kids doing things "wrong" is very frustrating. He had some screaming fits, hit a few times, and lost minutes off his recess being noisy or not doing his work.
Through all of these rough times I tried to stay calm and talk with his teacher and her assistant. I didn't want to throw my frustration at them as well, and figured we could all find what was best for Christopher if we worked together.
Medical Diagnosis Of Asperger's Syndrome
Confirmation and relief
For a while my husband and I wondered about Obsessive Compulsive Disorder. Maybe that was why he was so quirky about certain things? We found out that the school doesn't test for OCD. That testing was something we had to initiate, and decided to ask Christopher's Pediatrician for a referral to a Child Psychiatrist. Living in Eastern Oregon means that you have to travel for specialty health services...usually to Portland. Our referral was for a renowned doctor in the Portland area who just so happened to be starting a clinic in Pendleton!!! Once a week he traveled here! Our luck seemed to be turning.
About halfway through Christopher's Kindergarten year we started meeting with the Psychiatrist. After three appointments, Dr. Dave of "Mind Matters, p.c.", had an answer for us. He said there was no doubt that Christopher had Asperger's, not OCD. He was also careful to tell us the regardless of what he was diagnosed with, the treatment is for the symptoms that cause the biggest problems. For Christopher those are "friendship" and "coping" skills. His therapist is helping him learn how to interact with people. He has to work hard on his new skills...to take turns listening and talking, to share, be nice, and not touch things that belong to someone else. When a moment comes up that requires one of these skills, we have to draw a connection for him. At a store the other day he wanted to touch a card embosser on the desk...he walked straight to it while asking if he could try it, but forgot to listen for a reply. As a result he touched something that didn't belong to him, and we reminded him of his skills. While I stopped his hands, Christopher looked at me and you could tell he understood what he forgot to do, but the desire to touch is so strong it will take a long time for him to be able to stop himself.
I'm thankful that Christopher has a chance to practice these skills as he grows. So many kids are outcasts for several school years before they are diagnosed. Whether or not you wish to have a child "labeled" with a condition, they will be labeled by the kids and people around them. We all draw conclusions about people we see, before we really get to know them. Christopher has shown me just how important it is to give people a chance, and find the bright spot that shines in everyone.
Christopher's Easter Dance!
When excited children with Asperger's have trouble controlling their movements. This is a video of Christopher at the 2009 Easter Egg Hunt.
A proud parent moment
We had 3 months left in Christopher's Kindergarten year. We had a medical diagnosis of Asperger's. Now we needed a diagnosis from the school district specialists saying his impairments get in the way of his learning.
Since there is no cut-and-dry method of diagnosing Autism, every person who administers the screenings has a subjective view of the results. I think that played a big part in the failed test Christopher took at the Children's Hospital the year before. I was nervous about the outcome of the test this time, because Christopher's educational success was going to rely on what these people saw. Luckily this time some of the people rating his behaviors were the people that had been working with him throughout the school year. Once you get past Christopher's cute smile and charasmatic personality, then you can see the impairments.
After a month of visits with Christopher, several questionnaires, and interviews the meeting was called to give the results. Finally a group of educators saw through the "cute and charismatic blond haired boy" to his difficulties and anxieties. Christopher is considered to have "Autistic Spectrum Disorder" by the education system. He will receive assistance in the classroom to keep him on task. He will have break times to help with frustrations and fatigue. He will receive private assistance in fine motor skills (writing mostly).
He will graduate from Kindergarten!! Look out First Grade, here we come!
The whole day of school will be difficult for all of us...but with assistance from the school district and the therapist Christopher at least has a fighting chance. Just like every other child. It truly does take a village to raise a child!
Graduation commenced on June 9th, 2009. Christopher proudly walked in when his name was called, wearing a red (his favorite color) hat, to accept his diploma. Then during the ceremony he sat down on the risers while everyone else stood up. O.K., so maybe not like every other child...but that is what makes these Austism Spectrum kids so wonderful!!
Full Day At First Grade!
Ready or not, here he comes!
First grade was coming fast and I was getting a little nervous. The school had plans to have a helper in the classroom most of the day to help direct his focus. We set up a couple visits to the classroom and to meet his teacher the week before school. Christopher was excited to get started.
The first two months went well...staying on task and working in groups with minimal meltdowns. He still struggled with handwriting and playing with the other kids. Learning to sound out words was hard for him, so he just memorized words after they were read to him. Christopher had set times to get out of the classroom for "breaks" that included exercises, swinging, balance board, snack, etc. A visual daily schedule was on his desk so he knew what was happening throughout the day, and, so I knew how his day went, they sent a copy home with him everyday. Smiley faces were good! Red lines were difficult times.
I'm not sure what happened the next two months...there might have been a trigger that set off his behaviors, or it might have been that the "symptoms" of his Aspergers were becoming more severe. Whatever the reason, Christopher started to be a distraction in the classroom, making constant noises, not doing his work, and having meltdowns when his favorite activities ended. When he acted up he was sat in a chair by the door, then outside the door, then in the office....each time the noises would get louder. He started to kick and hit his helper, and run from the classroom. We met with the teachers and specialists to brainstorm about what was happening...set up a new classroom schedule, added more "break" times and incentives. Nothing seemed to effect his behavior for long. He was being sent home whenever he hit and the school officials were running out of ideas to help.
Christopher's behavior therapist and psychiatrist had always said when the support people around an autistic child start to crumble, it's time to try medicine. We tried different medicines for different symptoms...impulse, emotional extremes, aggression, and slowing down his mind so he can focus. When they didn't work or when side effects were undesirable we would switch to something else. He spent more time in the Special Education room in the Spring to get him away from the busy classroom and focus his attention on his work.
At the end of the year, despite his problems, Christopher had made progress on his I.E.P. (individual Education plan) Goals, had passed the classroom work, but was still struggling to work in a classroom setting. His report card said he was distracting to the classroom environment, but because he is so smart they knew he needed to move on to second grade. We started the summer with a little frustration and a lot of determination. Our goals would be to find a good medicine combination for Christopher, and to help him understand that there is a time for work and a time for play. I was developing a schedule for some light work on math and and writing 3 days a week through the summer. My hope was that he would understand that learning is a part of life, in school and out.