Autism Acceptance Starts a Big Debate

Finally, a story on a "mainstream" news show about neurodiversity and autism acceptance! Click on the video link below to watch. I missed this when it was on, but thanks so much to Andrea for sharing this on your blog.

I have hoped for the autism acceptance movement to get attention like this for a long time. My frustration with the public perception of autism was one of the inspirations that I had to begin this blog almost a year and a half ago.

I am so glad that Kristina Chew had the opportunity to be interviewed. She is a wonderful spokesperson for us parents who accept their child's autism and I have always enjoyed reading her blog. Hers was one of the first blogs I came across done by a parent who seemed to accept her child as he was.

Ari Ne-eman's quote "anti-cure doesn't mean anti-progress" is terrific. He is right, just because a parent doesn't think his child needs to be "cured" doesn't mean that he doesn't think that they should be left without any education or not taught skills and strategies to deal with their challenges. I think what it does mean is that he has hope, and is willing to rise to the challenge of teaching his child to live the best kind of life that he can. Even on the bad days, he will love his child and do his best to assist. Remember, this is the same job that parents of neurotypical children have. There are just a lot more challenges for the parent of an autistic child.

Kristina Chew stated that, "Acceptance, to me, is the beginning of hope." I agree with this as well. How can a parent have hope if she doesn't accept her child ?

Here is a link to the text of this video clip. I'm amazed at the challenges to "acceptance" that are in the comments after this article. I had to laugh at Diane Sawyer and the reporter in the video when they said "Neurodiversity," there's a new word! Where have they been? This term was around a year and a half ago, which was when I became familiar with it. I'm sure it had been around a while before that too!

Skittle-free at Church!

I am very happy to be able to say that Samuel made it through mass this morning without me giving him any Skittles whatsoever! He didn't even ask for them, and I didn't even realize that this had happened until a few hours after we got home! Not that I would say that Samuel did the best that he has ever done at mass today; he was quite inattentive and I could tell that his thoughts were elsewhere. That's okay though, the first hurdle that I knew we had to get over was for Samuel to be able to sit through mass without any outbursts.

At the beginning of dealing with this, a year and a half ago when we first started sitting in the church (instead of behind closed doors in the "cry room"), my method was to give him a Skittle (fruit-flavored candy that looks like "M&Ms") every few seconds that he was quiet. In the past few months he had progressed to just getting 3 or 4 Skittles during the homily (sermon). Today, I took Samuel out of the church for a short break during the homily. Fortunately, our pastor's voice projects quite nicely to the outside of the church so I could hear his homily without a problem while Samuel had a few minutes to walk around. Samuel really seemed to be needy of sensory things, so I gave him lots of hugs and squeezes, and let him sit on my lap for very short amounts of time.

Samuel is very interested in religion. I would say his knowledge and interest is like that of a neurotypical 4 or 5 year old. He likes Bible stories like The Creation Story, Noah and the Flood, the life of Jesus. He also likes looking at all the stained glass and statues in our church.

We are just finishing a kindergarten level religion book for him, and I'm looking forward to future religion lessons that start to teach him about all that is going on in the mass. I think he is ready to learn about it now that he does so much better about sitting in church. I am hoping that he will be able to receive his First Communion two years from now (the same year that his younger brother will). He may not be able to receive his First Communion in the same mass that his peers do, but I am hopeful that at that time he will have a much better understanding and sense of reverence for this most important sacrament of our faith.

What is the next hurdle? Getting Samuel to follow along, or pay attention, to what is going on at mass. This is going to be tricky. Samuel and I sit in the very back of the church. His behavior is such that others would find it to be very distracting, so I try to stay in the back where he isn't as much of a distraction. People at our parish are wonderfully understanding. I wish that some children wouldn't stare at him as much as they do, but I'm sure that 86 pound almost 5 foot tall 9 year old Samuel moving around like a two year old is quite a curious site to behold! Anyways, back to sitting at the back of the church, it is difficult for Samuel to see what is going on. I think it would be helpful for him to be able to see what is going on at the altar, but I don't feel like he is quite ready to sit up where he would be a distraction. I'm going to think a bit about what we might do. If anyone has any suggestions, or would like to share how their child has learned to better participate in mass, church services, concerts, lectures, etc... I'd love to hear about it!

Until Samuel receives his First Communion, I suppose I'll still keep the Skittles on hand. I may need them to get over the next few hurdles, and I'm okay giving them to him in church right now (we are required to fast one hour before receiving Communion, so edible reinforcers will not be an option once he hopes to receive). However, now that I have seen that he can get by without them, I will make more of an effort to save them for after Mass.

A Favorite Thing: Scripting!

Yesterday we had the pleasure of friends visiting and joining us for lunch. I watched some of my friend's children while she went out for a while and then she returned and visited with me for a bit. Our children are good friends and they had a great time playing together.

Later in the day, at dinner time, my husband had to stay late at work so I tried getting some conversation going at the table.

Me: "What was your favorite part of today?"

Oldest son: "The (friends) coming over!"

Youngest son: "Yeah, the (friends) coming over!"

Daughter: "The (friends) coming over!"

Me: "Samuel, what was your favorite part of today?"

Samuel: "Scripting! Watching videos without the television
on!"

It is very apparent to all of us that Samuel likes to script, he is absorbed in it for much of his day. While I do not want it to get in the way of the things he needs to do, I try not to let it worry me too much. I try to redirect him when I can. While we are at the table doing school work, I will stop and wait for him to pay attention when he is scripting before we continue with our work. Sometimes this works and sometimes we wait quite while. I have noticed that when Samuel has something VERY reinforcing following school work, he is much more motivated to pay attention and attend to his work.

I have talked to a few moms with children older than Samuel who have had this issue to deal with. Some of their children have gotten to a point where they realize that there are appropriate times and places to script. Perhaps they are given a period of time each day where they can go to their room and take some time to script.

Samuel really enjoys scripting, so I don't want to try and take it away from him completely, but at the same time I want him to understand that it cannot take over his life.

Is this an issue for any of you? How do you deal with it?

I have heard that it is best not to draw attention directly to the behavior. In other words, we shouldn't go around all the time saying, "Stop scripting, stop scripting...," redirecting is a better strategy. However, I have noticed in the last year or so that I can have conversations with Samuel about the fact that there are appropriate times and places to script. It's better if I have these conversations with him at times that I'm not correcting him to stop.

Back to Samuel's answer at the table, I'm going to have to find out what he meant by "watching videos without the television on." I wonder if he was refering to scripting or if he was talking about looking at video cases.

Maine is calling.. but I can't go yet!

It happens this time every year, I start to get homesick for Maine! With the exception of our visit this past Christmas, all the trips I have taken up there have been some time between the end of May and the 4th of July. Our trip this summer will not fall within that time frame. We aren't going to go up until mid-July. It'll be so hard to wait that long, but it's just as well that the trip will be later. I have lots to do before then.

I am still getting together a package of Samuel's school work from this past year to send to a consultant. As I mentioned before, I am hoping to have a consultant look at his work to provide an outside opinion of his academic progress. I submit standardized test scores as proof of academic achievement for my oldest son, but will not be able to do this for Samuel since he would not be able to take the standardized test that I usually use, the CAT-5.

Upper photo: the view from Pemaquid Point on a sunny day, taken by rbglasson. Lower photo: wintery view from Pemaquid Point taken by me on our trip last December.

"Mom says teacher let classmates vote autistic son out of class"

I found out about this story from Julee, whose blog is "Discovering Nathan." This story is just unbelievable! I cannot imagine the difficulties with school that will remain with this young boy because of this incident.

http://www.sun-sentinel.com/news/local/treasurecoast/sfl-flpkindergartner0525pnmay25,0,2574622.story

"End" of the School Year Approaches

Education in our household has become a year-round process. While a part of me wishes that we could take a particular day and call that "the end" and have a few months off, I enjoy the flexibility we have in working year-round. We take time off for vacations, and may have a lighter week here or there depending what is going on in our life.

One date I do have to keep in mind, working year round or not, is the August 1st date by which my state requires me to report educational progress. There are homeschooling options in Virginia which do not require reporting of educational progress, but I have selected the option under which I must report. This is going to be a very different process for Samuel than it has been thus far for my oldest son. All I have to do for him is administer a standardized test and report the results to our local school superintendent.

I will not be able to use the standardized test method for Samuel. The past week or so I have been gathering information about him and his work to send to a consultant. I plan to have her evaluate the work we have done so far, get advice on how to better teach him, and come up with an education plan for next year.

This is keeping me very busy and I haven't had much time to post or visit other blogs, but I'll try to get back and do updates of how this process is going.