Josh is now 10 1/2 years old and has been living with the diagnosis of autism for at least 7 years now. A few weeks ago I was wondering what he thinks and feels about having autism. So, I decided to interview him for this post. At the time of this ‘autism interview’, please keep in mind that Josh is really into shipwrecks and he just had a falling out with his brother.
Q: Can you describe to me what is ‘autism’?
A: Autism is a sort of brain disorder that sometimes makes kids like (he flinches away), you know, they don’t like to be touch and sometimes it makes them smarter than other kids. But when they can’t be touched it’s hard for them to make friends and get along with them.
Q: Do you know how someone comes to have autism?
A: There is only one way to get it: being born with it.
Q: Do you think there is a cure?
A: There may be a cure for autism, but I’m not sure.
Q: How do you feel about having autism?
A: I don’t like it that much cause my brother treats me differently and its hard for me to get along cause he says I’m too smart and that’s probably why he doesn’t want me to play with him.
Q: Do you ever wish you didn’t have it?
A: I wish I still have it because its made me really smart. Like there’s things that are explained to you that your school never taught you.
Q: Are there times when your autism gets in the way? If so, how?
A: Yeah, like my brother, when I talk to him about something smart, like talk about (to) him about a famous ship, he’s like “you know I hate ships and history, right?” And then he just ignores me.
Q. Are there other times it gets in the way?
A. Like when I get a problem wrong on my math and other subjects, I get really angry.
Q: In ten years, you will be 20 years old? Describe to me what your life may look like?
A: I’ll probably have a job and married and kids like normal people.
Q. Is there a question you’d like to ask me?
A. Do you wish you had autism? [My answer: I don’t know. I don’t know what it is like. You know what it’s like.]
Q: What do you want to be when you grow up?
A: I’ll be a shipwreck hunter.
Q: Can I give you another ‘autism interview’ when you are 15?
A: Yeah. We’ll record part 2 in five years.
Q: Do you have any advice for someone who has autism like you?
A: Two years before now, my anger used to be horrendous but now its died down a little because I’m controlling it even more.
Today, I want to share a learning strategy that I put together to help Josh with his handwriting and another that I employed in order to help him with subtraction. My hope is that these strategies will help other children whether or not they have autism and/or whether or not they are homeschooled. You will also find these strategies in the form of free printables at the end of this post.
Learning Strategy for Handwriting
When my boys entered second grade (while still attending elementary school), there was a tremendous difference in their handwriting. While still not perfect, Jack had learned to write his name across a straight line and to minimize the size of his lettering. However, Josh was having a hard time with this. It didn’t help that he just hated writing and still does. His lettering was huge and it often drifted far below or above a given line.
Halfway through his semester, Josh’s handwriting was becoming a concern with his resource teacher who informed me that he needed help getting Josh to practice his writing. I began watching Josh as he would write words and tried to get him to make the lettering smaller and to write as straight as he could. We tried tracing letters first which he did well but he was having trouble translating the same letters without the tracing. This was becoming painfully frustrating to the both of us. I just wanted to give up and he was shutting down quickly.
Then I came up with the idea of boxing his letters. I thought what if I get him to print a letter in a box and then gradually shrink the box. I quickly got onto my word processor and began creating grids of varying sizes from large to small. Starting with the largest grid, I had him practice his name as well as complete any writing assignments that were due. I also made copies of these grids to give to his resource teacher. I explained how I was using these grids and he agreed to implement them in class.
It didn’t take long before we saw some improvement. Josh liked the grids and he was able to keep his lettering in the boxes. Over time I got him to write smaller and smaller with each new grid. Eventually, we took him off the grids when he was able to write his words at a reasonable height and on the lines without drifting. Unfortunately, I don’t have any old samples of his work but as you can see from the pic, his handwriting is pretty spot on.
Now if you want to create these grids, it is quite simple. Using Microsoft Word, just add a table and format the size of each column and row. I have also provided free printables of this learning strategy at the end of the post if you prefer not to create it yourself.
Learning Strategy for Math
Josh also had a hard time when it came to subtracting double digits. He understood subtraction but once he didn’t have enough fingers to begin with, he started getting frustrated. Mind you, we used manipulatives which was a great start but was very time consuming. He had to count his starting amount, then count out what he was removing, and then count out the result. He did this with every problem and so our days were getting long. I tried to wean him off of these, but he would put up a fight. I figured the next best strategy would be a number line. So, again, I got on my word processor and created a number line from 1 to 20. I added small dots above each number so that he could place his finger at the start number and then move and count backwards. This did the trick until he miscounted and crumpled up the number line. Lucky for me I saved the number line, reprinted it and this time I laminated it.
So for the next few weeks, he continued to use the number line and realized what a great help it was on his assignments and tests. It also helped that the now laminated number line was crumple-proof. I never weaned him off the number line. One day I just happen to notice that he was working his subtractions problems without it. In fact, he is quicker than I when it comes to calculating answers to subtraction problems.
Again, this is a simple number line that anyone can make by hand or if you like to get fancy, with a word processor. To save you time, I have also provided a free printable of this number line at the end of the post. Just remember to print it out in the ‘landscape’ orientation.
I hope these strategies help and please note that the writing grids can also be used for children learning how to write their name.
I wanted to write about how my son, Josh, and how he is embracing autism. However, before I begin writing about this topic, I want others to know that this is our personal story and we don’t claim to know everything about autism. Every child with autism is different and therefore there is no one method that works for every child. We have made our share of mistakes when it comes to raising our children, but I also believe that mistakes are lessons to be learned. Here is our story:
When Josh was diagnosed at 3 years old with having autism, at the time, it never occurred to me that one day I would have to tell him that he had autism. But the time came when he was seven. He began noticing differences between him and his twin brother, Jack. He didn’t understand why he was
being pulled out of regular class to go to a ‘resource’ class when Jack got to stay with his class all day. He didn’t understand why his homework was different if they were in the same grade. He didn’t understand why his own reactions to things were different then others around him. I realized that we needed to have the talk. I knew he was still too young to fully understand what autism was but I thought that if he had a ‘name’ for it, he could grow to understand and begin embracing autism…and he did…slowly.
At first, I told him that he had autism and that it sometimes caused him to feel very frustrated especially when things were not going his way. I told him that when he didn’t complete tasks because of his frustrations, he had to go to another class to help him finish his work and that is why he had different homework. I avoided using the word, “special”, just because it means something so different now. This was as simple as I could make it for him to understand.
With this understanding, Josh’s behavior did improve a little. Not only did his frustration levels decrease somewhat but the number of frustration ‘episodes’ were also decreasing. Unfortunately, I also noticed that after he calmed down from one of his episodes, he felt terrible and began blaming himself. He would say that he hated his brain and sometimes, he would hit himself. This was not what I had anticipated happening. I realized that I needed to come up with another way to explain autism. I needed to redefine autism.
While all this was going on, at about 8 years old, Josh began exhibiting other abilities. He started memorizing the states, not alphabetically but in order of the date of their statehood. Eventually, he moved onto to presidents. He began devouring more and more books. Not story books, but scientific
textbooks, history books, atlases… His need for information was astounding. He began watching the news with me interested in the world outside; he also began ’empathizing’, promising me that he would find a cure for cancer, or come up with a way to stop wars. It took me a couple of years, but I realized I had a way I could explain autism that was unique to him.
I had heard from various sources, some of them from movies, that humans only use 10% of their brain capacity. Now, I’m not sure how much truth there is to that but I used this in my explanation to my son. I told him that his autism gave him special abilities that many average adults did not have. This has been the case as most adults who have come to know Josh are shocked by his intellect. I told him to think about it this way: where as most people might use 10%, I told him that he probably uses a little more thanks to his autism. It worked.
I have also pointed out to him that many of his episodes are not his fault but ours, we, the 10 percenters. For example, when he was learning to write his name, teachers would have him practice writing his name on a sheet of paper repeatedly. This was the type of homework that would come home with a note asking us to get him to finish the task because he had had an episode. One day I asked him why he refused to do this one simple task. He looked at me and asked, “why do I have to keep doing it over and over if I already know how to do it once?” I just sat there stunned. In a way, he was right. He knew how to spell his name (although his handwriting was another story). Naturally, I had to use that as an excuse to get him to complete the task. But he was right about having to do something over and over unnecessarily. I mean, at the time, he was only in 1st grade, and would have plenty of opportunities for writing and practicing his name without having to do this assignment. So can I really blame him for getting frustrated? He is a boy with autism living in a world full of people without autism.
Josh began embracing autism. He was realizing that his autism was not such a bad thing. That if it wasn’t for his autism, he might not be as smart as he is (whether this is true or not I didn’t care). He was finally getting away from hating and hitting himself. He has actually started bragging to people that he has autism. He even sometimes compares himself to Einstein, who, of course, is someone who supposedly had autism as well. He now wears his autism like a badge of honor and thinks of himself as one of the elite.
When people learn that Josh has autism, one question I get is, “How did you know he had it?” Well, here is that story.
First of all, when you have multiples, it’s easy to make comparisons as they approach certain milestones. Jack would hit his milestones a little earlier than most kids, but Josh would reach these same milestones a month after Jack. When it came to speech, both boys were delayed so I didn’t make a fuss about it. They were preemies and it was possible that they would exhibit some developmental delays.
Around the time when they turned 18 months I began to notice some peculiar things that Josh would do. One thing he did was grab three objects whether they would be toys, pens, or markers. Two of the objects had to be the same but not the third. Then, he would line these objects and leave them in random places. One time I walked into a room, to find two pencils and a block in the middle of the room’s floor. Let’s just say the first thing that came to my mind was the Blair Witch Project. Of course, I’m just kidding but I became fascinated watching him do this from time to time.
Another oddity happened whenever a pharmaceutical commercial came on the television. Josh would stop what he was doing and watch these commercials mesmerized. That year, commercials about Lunesta, Nasonex, and that one with the inventor of the artificial heart captivated my son. I would even sing part of the commercial to him when I put him down for the night. He absolutely loved this and soon Jack loved it too. No Rock-a-Bye lullabies for these kids.
Another thing I noticed was when he would turn his riding toys over and was more fascinated by the wheels then with riding them. I thought he had inherited my father’s mechanical skills.
Well, this went on for a while. Then, in April of 2007, Oprah presented a show on autism with Jenny McCarthy. During one part of the show the ladies began listing signs to look for in many children with autism. When they mentioned the arm flapping, I turned around to see Josh sitting down on the couch, bobbing back and forth while flapping his arms. I just broke down and cried. I knew at that moment that he had it. He had been bobbing and flapping his arms for a while now.
At this time, the boys were enrolled in a program for children with developmental delays and they were receiving speech therapy at home. I began asking these professionals, counselors, and teachers in the boys’ lives for information and help since I believed it may possible that Josh had autism. Some told me it may be too early to tell, while others asked if I had seen that Oprah show, basically making me feel like a neurotic mother. I was brushed off. I wasn’t looking for a diagnosis, I just wanted information and to get ideas for helping him in case this is what it was. I was so afraid that Josh would just one day shut down and I could never get him back. So I decided to take things into my own hands.
First, I tried to educate myself reading everything on the web about autism. One thing I learned was that children with autism tended to become obsessed with certain textures. I began to question one of Josh’s daily habits of crawling under my shirt and popping his head up through the collar. I’d give him a kiss and pull him out from under. Jack had never did this so I thought maybe Josh was seeking something and I wasn’t understanding what that was. So, I sat propped by pillows on my bed and called Josh over. I encouraged him to crawl under my shirt (yes, I know this sounds weird) and out popped his head out of my collar. I then watched to see what he was going to do next. He simply laid his head on my chest and just stayed there. I don’t know if it was the skin-to-skin contact, the beating of my heart, or my breathing but he seemed so peaceful there. I began to talking to him and he looked up at me and just focused on my mouth. He started babbling. We did this on a daily basis and I could see his speech improving. It didn’t hurt that he was also getting speech therapy. The difference was that he was talking to me. So, for the next year and a half, I kept my eye on Josh and mentally noted things here and there.
In the summer of his third year, something happened. I didn’t know what was going on but Josh began getting upset for the oddest things. If he was served dinner, he would all of sudden start screaming as if someone was hurting him. Even bath time, became excruciating. I didn’t know what was going on but I wanted whatever pain or fear he was enduring to go away. So after meeting with his pediatrician who suggested that Josh may have “obsessive compulsive disorder”, she referred him to a behavioral specialist.
During his appointment with the behavioral specialists I shared Josh’s behavioral history while they observed him at play. They left the room, and came back ten minutes later concluding that it was not OCD but that he had autism. I remember hearing those words and feeling relief. The specialists thought I was going to become upset at this diagnosis but instead I felt like a burden had been lifted. I had always known that Josh was a little different and watching Oprah that day only confirmed my observations and gave it a name. With this diagnosis I was able to get any and all help he and I both needed.
Today, Josh is doing awesome.
In my next post on Embracing Autism, I will share with you ways that I am raising Josh to embrace his autism.
Disclaimer: I do not claim to be a medical expert. Please do not take information from my post as medical advice. If you are in need of medical care, please seek help from a healthcare professional.
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