As I reflect on this last month, I think the time I have spent to share with the world our Autism story, I have also found that I am still very much a learner in this process especially as we begin to embark on puberty. This is an adventure I do not look forward to but know is coming quickly!
For the end of Autism Awareness 2011, I leave you with my descriptions of Autism and its effect on our lives through Wayne:- Autism is not a bad thing in our life it just explains the "Wayneisms" in our life.
- Wayne is a typical child to the extreme, if a child would ask 3 times for something, Wayne will ask a zillion times.
- Wayne, you are not a flying bird, so if you need to move your hands remember you are like a penguin that cannot fly, so you flap by your legs.
- Stemming is as normal as the stem you chose.
- Weird is the new COOL!
I have many more but they are not as fun. Do not get me wrong, I would have loved for Wayne to not struggle with making friends, fitting in, or just understanding social norms. I would have loved to had a normal child. But God gave me Wayne for a reason, and through the eyes of this super sensitive, super smart, super brave boy, I have learned many lessons. I would not trade Wayne or his "isms" for anything in the world (even when he is annoying and doesn't want to listen to mom!) and one of the most influential parts of what makes Wayne, Wayne is his autism.
Being a big brother is tough. Having to set examples, having to make the right choices, and having to watch what a younger sibling is doing just to name a few. However, I have never met a child who has waited so long for a baby sister or brother as Wayne has, and who truly embraces the responsibility.
With most older siblings, you have had to worry about jealousy and regression/ rebellion. With Wayne and knowing what I have learned about autistic siblings, I had to worry about other reactions. Wayne has always been a gentle spirit, would it really change with a baby in the house? Actually it did! Wayne wanted to wrestle and rough house a lot. When the baby came, he started to be more gentle with it. He also blossomed. The baby would be doing something soon that he was scared to do. With a little sister, Wayne has jumped off heights, worried about hurting her, and made a true friend.
Now, we are expecting baby #3, and with this expectation, Wayne is being pushed into yet another dimension. At 11, and developmentally ready, he is learning self motivation (yes, it can be taught, I need a teacher) and how to be a team player in the house. These new skills will be put to the test when this next little one comes into our life. However, with him still being a novice, I pray for patience, and guiding words to help help him solve his problems both which I lack some times.
There are just 11 more days of Autism Awareness Month, and through this journey of focusing on Wayne in blogs, I have learned, that I as a parent still have a lot more to learn about my child and his "Waynisms." Autism is not a curse or a disease or a disability in our house. It is the explanation for all the "Waynisms" that occur.
Simple may be off slightly. One thing is for sure. Nothing is simple. As stated before, many of the things I have learned to help Wayne with being socially acceptable deals with teaching a new behavior. As I think of Autism Awareness, and a story that is truly Autistic, my brain scrambles. But one day I do remember dealt with about the biggest extremes, along with hurdles.
A few Summers ago, Wayne and I went to Carowinds with some friends for a day of fun. Now, please understand, that I LOVE roller coasters, and well, Wayne, is not sure of trying anything that might be a suggestion of something scary. SO we spent the day walking around trying to find rides that we would both enjoy. Wayne and I enjoyed some of the baby rides, but then I decided to push him a little.
We went into the water park and I pushed him to try the kiddie water slide. He loved it! Then he looked at me with excitement and pointed to the bigger water slides. He wanted to ride it badly. So we found one that would let two people ride at once. After standing in line with him for 5 minutes, we finally get to the top, and he decides he does not want to go down. He begins screaming and trying to look for a place to run. I grabbed him, and made eye contact with him, and told him, there is only one way down. Then I gave him a bear hug lifted him up set him in my lap and the worker pushed us off. He screamed half way down the slide and then laughed the rest of the way!
Leaving the water park, I decided to keep the momentum going. We stood in line for ride after ride, some he had a meltdown in the seat so we got off and let the next people on. Others he was ok with sitting in the seat, and we road. We continued this, until he reached a point of somewhat comfort. Then it happened. He saw the "mascots" Nickelodeon Characters with big heads! HE saw them took one looked, screamed and starting running. Somehow, I ended up with Inspector Gadget type arms that reached out and grabbed him almost tripping a lady and toddler, apologized, as I dashed around the corner and held him tight to me against me to where he couldn't see. Once, he recovered, he wanted to go "shake their hand." Yeah, Right.
We finished the day in the kids area of the park and our last ride was the kid roller coaster. Wayne's first every real roller coaster. We rode it together after much debate. He was comfortable in the seat and half laughed and half cried throughout the whole ride. When we got off, Wayne looked at me very seriously and said, "Mom, we have to call an ambulance."
I asked, "Why, Wayne? What is wrong?"
He said, "That ride made my stomach turn upside down and the hospital needs to fix it."
I replied calmly, "It is ok Wayne, that is just butterflies in your stomach."
This made him look at me very seriously, and state bluntly, "I did NOT swallow a butterfly, Mom!"
As I think of it there are many more autism stories like this one. But, this is what autism looks like in our family. A little bit of forced sensory awareness, pushing to try new things, and most of all, learning about figurative language in the most serious ways!
Last night I took the time to post on the things that I have learned do not work with Wayne. Autism was not a word in our life for the first 6 years of life, therefore, it has never become an excuse for his behaviors that are not socially acceptable. I have learned in trying to retrain him or in trying to help him modify behaviors several tricks.
1. ALWAYS HAVE A REPLACEMENT BEHAVIOR: My favorite example of this is the flapping. Flapping is not socially acceptable, nor was it ever ok in my house. Stemming (the term I learned later) was. So, I worked with Wayne over several months on how to stem without the world knowing he is bothered. So, when Wayne "flaps" he flaps like a penguin, because he is not a bird that can fly without an airplane. Another example is one that one of his teachers did with him this year. Instead of letting Wayne cover his ears for fire drills, he has allowed Wayne to wear headphones during the drill. It is cool to listen to music in head phones it is not cool to walk around covering your ears.
2. WATCH WHAT HE EATS: This is our newest revelation. He is scared of color, and can tell you what happens if he has artificial color. Yellow #5 is the worst! He also has a reaction to preservatives and high fructose corn syrup. I see you are thinking, "geeze, what does this kid eat?" He eats all types of the food. But he eats FOOD! If we cannot read the label and recognize the ingredients as food, we do not eat it. Check out my recipe page to see what we do eat.
3. MAKE A SCHEDULE AND STICK TO IT: This is the hardest for me. I like to make it up as I go along and wing it. Yes, it adds chaos to life, but having every minute of the day planned is overwhelming to me. Wayne, however, needs everything planned and needs to know what is going to happen each step of the way. He has to have a steady schedule with few/no surprises. This has been key to his success at school as well as at home. It gets lost sometimes on holidays, but as the years progress, I slowly remember to give him a quick agenda and run down on the day.
4. MAKE A LIST: This seems weird but checklists do work. He has a checklist for getting ready in the morning. He has a checklist for getting ready for bed at night. There is even a checklist on how to use the potty. I think we have a checklist for just about everything. After he has done the exact same routine about 30 times, the checklist slowly disappears.
We all have done it. Made little oops that we thought did not effect our kids too badly. However, when raising an autistic child, the little oops manifest into perpetual oops. I have learned that although Wayne is my first child, there is no going back to correct my mistakes, there is just countless hours of reteaching better habits of the bad habits I have formed.
Mistake 1: Comparing him to others: Wayne is a very unique individual. No matter how much I compare him to others, he will never be an average child. The autism world calls average neurotypical. He has his own unique strengths and weaknesses. All I can do is identify the weakness and help him learn strategies to overcome those weak areas.
Mistake 2: Assume that if he did it once, was told once, or it happened once that it is learned: Part of Wayne and autism is pervasiveness. In other words, he only learns or can do what is repeated in a routine format. Anything out of the routine or slightly change the behavior or outcome, he has not learned it.
Mistake 3: Lack of schedule. Wayne and I lived for years by no schedule. This means the little boy who looked for meaning in every activity and needed to know what was going to happen next, never had that. Since we have added a schedule in our life, Life for Wayne has been much better.
According to our doctors, Wayne was a typical little boy. Boys always develop slower than girls. He hit all the major physical milestones but never really developed language. Wayne then slowly started to regress. It took him forever to potty train, there were some fine motor things, that he could do before, but then couldn't do. Wayne still couldn't really talk. At least no one out side the home could understand him. He struggled through kindergarten and had many accidents along the way. He was not fully potty trained until he was 6.
He developed some language skills through speech therapy and constant repeating to him. But was still hard to understand. It wasn't until after we had a diagnosis for a muscle disease and saw a neurologist regularly, that the neurologist suggested testing for autism. I had heard of autism before, did a report on in my freshman year in college. I thought I knew all about it! (Amazing what people learn from 1997-2005) I also knew my son was no "Rain Man." Literally, that was all the research that was available at that time. So, I started digging and doing some research on my own. I contacted some people. Finally, I had decided that Wayne had enough quirks, that testing might be worth it. Not because I wanted to fix him. I had kinda gotten used to all of his "isms." But because, if I knew what was wrong, then I would know how to help him fit in and make things easier for him.
We got his diagnosis the spring of what should have been his second grade year. He was about 7. When we went in for testing, they psychologist pulled me aside and asked if we spoke any other languages in the home. Then played for me the conversation Wayne was having with the toys during the interview. Because of his developmental milestones, and the weird language that he talks while he plays. They diagnosed Wayne with full blown autism. There were other factors. I was also reassured that he was high functioning. I do not like the high functioning term. At least not at first. It sounds like a house hold appliance. High functioning washing machine. But we took it.
Now that we knew a name for how he was thinking, it helped us look at ways to help him and push him to fit in better in regular society. This does not mean that we have normalized him by all means. But we have taken the socially unacceptable behaviors and found ones that are more acceptable.
Ever find yourself, wondering if the ringing in your ears will ever stop? Or if it was possible to turn off those brights shining in your eye? Have you ever listened to the radio all the way up with the TV also blaring? I often find myself trying to picture this.
A friend of mine, while in the search of how Wayne is hardwired, explained one moment of life to me from the perspective of one of his friends. He stated that one moment, just one brief moment, is like being sat in a hard cold seat covered with a combination of marbles and tacks, while you have stadium lights shining in your eyes, and two radios on either side of you blaring. Meanwhile, your mom is trying to read you a bedtime story. If this is one moment in the life of an autistic person. Imagine what all those moments combined are like.
I was introduced to the autistic world when Wayne was 6. Please note that in this post and the posts to come, I speak of autism and autistic people putting autism first. The reason for this is Autism is not a disease or a disability, it is a way of life and a way people perceive the world around them. By saying a person with autism, I feel that I am giving into the myth that this is something that has disabled my child, and I want a cure for it. I do not want a cure for autism, because there is not a second in the day that I want to change how Wayne thinks. However, I do want life to be as easy for him as it is for me, I do want other people to be aware of how he and others think and be tolerant of him, I do want him to have the same opportunities as others. Now, I understand that there is a spectrum, and I fortunately am experience the part of the spectrum that is high functioning. However, I am not sure if he was non verbal, that I would want a cure. I would want a way to help him find his voice.
I felt it necessary to first let the world understand that what is written in the posts for the month of April are my opinion and my facts based off our life. They are not based off any organization or research. Although, I have done my own research, I do not think that how I did things, or what I am doing is the cure for all. I fully recognize, that I am raising one Autistic Person. There are millions of other autistic people who have different experiences. Please, do your own research, and find what works for your family. Also please, if you do not know of autism, educate yourself, and take the time to get to know these people who love life and want to find away to share how they feel with others.
