The autism stories no one hears

This article that I was introduced to this week really moved me. It almost brought me to tears. It was written by Amy Mackin and published 7/23/13. As I was reading the article, I kept thinking, “These words are my words.” I hope you enjoy the article as much as I did.

Several inspiring people with autism and their families were profiled on Katie Couric‘s show this summer. It was wonderful to see part of a talk show dedicated to educating people on what it is like to live with autism.

But part of the autism spectrum wasn’t shown — the part almost never seen in mainstream media. Where are these people? I am a parent of a child with autism, and I am lucky. My son received the support he needed when he needed it and falls into the part of the spectrum known as “high-functioning.” He has developed coping mechanisms to deal with his anxiety and sensory challenges. He has learned to tolerate some flexibility when his routine is disrupted. Most important, he is now able to share his extraordinary intelligence, his endearing personality and his unique social conscience.

My son’s story is one of hope, not unlike the stories regularly broadcast on television, printed in magazines or making the rounds on YouTube.

Yet the autism spectrum is wide and diverse, and many who suffer from severe autism will never reach the level of functioning that my child has achieved. Although these people are also part of the story, we rarely hear their stories.

These people react so severely to sensory stimulation that they will seriously injure themselves as a way of relieving the stress. They are often nonverbal. Some require headphones streaming soothing music or familiar voices in their ears just to leave their regular environment for a short time.

Children and adults with autism this severe exhibit behaviors in public that mainstream society views as completely inappropriate. They mumble or yell involuntarily. They may reach out and grab a stranger’s hand or stroke someone’s hair.

I am not referring to people with nonverbal autism who have average or above-average IQs — those who possess the cognitive ability to communicate but whose bodies betray them. Computer applications and other technology can help these people communicate and do many of the things anybody else does, if a little differently.

Instead, those whose stories I’m missing do not have the intellectual ability for communication, whose IQs fall into the severely or profoundly impaired range. These are people who will never read or write or type. They will never graduate from high school; they will likely never marry or hold a job.

When I advocate autism awareness, it’s this hidden spot on the spectrum that I champion.

No one disputes the incredible importance of early intervention — the program of beneficial therapies started well before age 5 — and continued social-skills training and support within the educational system. Certainly much more work can be done for all people who struggle with autism. But when I fantasize about finding a cause and a cure, when I dream about a wonder drug that could reverse the effects of autistic disorders, I don’t think about my son or others like him. I think about those at the bottom of the spectrum — their daily struggle and that of their families.

The world is slowly becoming more aware and more tolerant of those who live with autism, but to understand the breadth and diversity of the spectrum, and the impact of living with these disorders, we must see the entire range, not just the hopeful, inspirational stories.

We must see the pain of a parent who watches her child smash his head against a concrete wall, who throws himself on the floor of a store because he simply cannot stand the fluorescent lights another second; the person who starts violently screaming because the crowd getting off the subway terrifies him. We must feel the anguish of compassionate caregivers when everyone around is staring at their loved one with horror and judgment.

We must comprehend the grief of parents who are forced to acknowledge that their children may never be able to care for themselves, and we should consider all the future decisions and worry that realization encompasses.

Many personal stories about autism make us smile and renew our faith in humanity. But some stories will make us cry. They should, because autism can also be terrifying and hopeless. This side of the spectrum still lurks mostly in the shadows. But to fully understand why we search so exhaustively for answers and doggedly seek a cure, these stories must be seen and heard, too.

Amy Mackin is a writer in the Boston area. From the Washington Post.

Acceptance, the Greatest Gift

After three years of making our way in this world with Ninja Cat’s high-functioning autism, we have finally run into my first real taste of – I wouldn’t say discrimination – but someone not willing to try and understand. It absolutely broke my heart for this to have happened to him; but, I guess we should feel lucky for to have taken so long to have happened.

Jigsaw

It was a local art camp. Only four days for four hours each day. Ninja Cat loves art and some formal training, however brief, would be a great help to him. That and it would be a great chance to earn his Artist activity badge for Webelos. When I called to register him and asked about him coming even though he was a high functioning autistic. They said it would be no problem and to bring him. So, I’m left thinking that they will be prepared for him and it would be a great four days of learning about something he’s pretty passionate. So confident, in fact, that I took the first day to go berry picking 45 min away from my house with my best friend – even letting her drive. That confidence soon shattered.

Not one hour into the first day the camp calls saying that Ninja Cat is having trouble and wanting to come home. I told the camp director a couple of quick things to do to help him calm down (give him a quick break and a copy of the schedule) and get back to participating. Apparently, that didn’t do any good, because they call a bit later where I talk to him personally and get him to stay. Again, I told the camp director to get him a copy of the schedule (she hadn’t done that yet), give him another few minutes to get his bearings, and would call to check on him after I finished. Later, he was somewhat better, not great, and he said he could last until I came to get him at the end of the day.

At the end of day, the camp director and I have a talk. Only then do I find out that she was blindsided by his autism (the person I registered through didn’t pass along his difficulties??) and that she admits she doesn’t have the skill set to meet his needs and there was no one there with the knowledge or training to help him. She all but threw her hands up right then, not even willing to hear the tips and tricks I have to help him acclimate. Optimistically, we came to the agreement that it was first day jitters and that he would be better tomorrow. But if not, he would come home early from camp. She even sent me an email over it. I wouldn’t say it was tersely worded; but, it was plain the director didn’t plan on even trying to make any accommodations for him, despite his difficulties. But again, me and my optimistic self knew that tomorrow was going to be better.

It wasn’t. The camp calls before the start time saying that he’s going to have to come home. He had carpooled with his best friend’s mom, who was still there and brought him home. When the three of us talked about it, we came to the conclusion he had just gotten impatient for the day to start and wanted to go ahead and start drawing something. But, the plan was for them to go outside first so the art supplies hadn’t been set out yet. It sounded like they didn’t even really try to get him to slow down and participate with the rest of the group.

Every other time Ninja Cat has participated in anything, everyone there has gone above and beyond to make him feel accepted and welcome. This time it doesn’t feel like it they tried. I admit I’m hurt and upset. I’m trying to see things through their eyes. It’s hard. I wish they could have done more. I wish I could have done more.

Thirteen County Life Lesson

Sorry to be late with this post, hopefully faithful readers. I have been in a rush since mid March and am just now coming up for some air.  I’ve been working with our school’s spring fundraiser,  two field trips in two days, my birthday and Easter weekend with Friday and Monday out of school – not to mention the usual craziness that comes with school winding down. I guess I’m through whining so I’ll get to the post.

The 500+ entries
The 500+ entries

Danger Boy, Ninja Cat and I took a trip to Oxford for the Region VII Science and Engineering Fair recently. They took their projects that I wrote about in Of Bridges and Craters. Both had won first place in their respective categories at school and they were excited to represent their school against the 500+ entries that also decided to show up at Tad Smith Coliseum that day.

We really had a good time. We talked off and on about what was expected of them, what the judges were likely going to ask and how to act/react when the decisions came down. So when we got there, found their gifted Gifted class teacher and their spots, they were as well prepared as they could be for whatever happened. Last year, I was allowed to sit with Ninja Cat as his ‘aide’ of sorts because of his high functioning Autism. But this year, we decided that we should let him sit there on his own. After all, he’s grown by a whole year and he, along with the 500+, had an electronic device to keep him occupied until the judge came to see his project. But we were close to the floor just in case anything did go wrong and he needed someone.

Danger Boy at the Science Fair
Danger Boy at the Science Fair

Next was just to sit and wait for two and a half hours while all the projects were judged by not one but two judges. Ninja Cat said three came by to see him. After that was a long lunch break. So, we decide to go to the main cafeteria on campus. We talked about what college is and an overview of how it works. Danger Boy was wondering how he would get from our house to Ole Miss and back every day. (It’s just over an hour drive.) Then I told him that you live on campus in that situation. That took him by surprise.Then he decided he wants to go to Ole Miss for college, so I can come visit him on weekends as he put it.

We get back to see if any of our students were in the running for the overall medals. Unfortunately they are not; but, that gives us time to enjoy the student/adult version of Family Feud. They did a survey of 100 children that were participating in the fair for the questions and did multiple rounds for lots of people to have a chance to play and for the judges to get a chance to judge the projects up for the overall awards. Danger Boy really wanted us to do it; and, gratefully we were picked. We decided to sit in the same chair on or respective sides so we could go against each other. Our question was “Name an animal that flies.” He beat me on the buzz in; but, I beat him on the answer. Long story short (I know, too late.), we both were surprised that dragon was the number one answer.

After the Family Feud, they were ready to announce the winners. Again long story short, Ninja Cat won 4th place for his project on bridge design and Danger Boy missed the ribbons. Neither child was happy with his result. That’s when the consoling started by not just me but his amazingly gifted Gifted class teacher. However, neither child was consolable right then. So we left right after their lower grade division was complete citing over-stimulation for Ninja Cat.

Ninja Cat at the Science Fair
Ninja Cat at the Science Fair

It took until the next day for them to be able to come to terms with their results. Ninja Cat did say the next morning he had fun doing the science fair and already has ideas in his head on how to improve for next year. Danger Boy is still in the planning stages. But that’s 10 months away, which doesn’t even place it on my radar. I let them plan anyway. It’ll be good for them to learn forethought.

What are some science fair projects you have done/seen in the past that blew you away? I’ll pas them along to Danger Boy and Ninja Cat.

This Mom’s Loft: Spring Break Edition

Yes, this past week was Spring Break here in the Loft – nine days (counting the two weekends) of no school and getting ready for the final push to the end of the year. I had been waiting for this week to come almost since Martin Luther King Jr. holiday in January. Heck, I’d been waiting since Presidents’ Day in February. We didn’t have that day off as planned because we had to make up our one snow day so far this year. We all needed the break; and we have taken full advantage.

The way I ‘do’ Spring Break is similar to the way I ‘do’ summer break. We have a theme to each day of the week, which I got from Pinterest and both Ninja Cat and Danger Boy like knowing what to expect each day. We have Make Something Monday, Time to Read Tuesday, What’s Cooking Wednesday, Thoughtful Thursday and Something Fun Friday.

Most of our days started out like a Saturday, me in bed until all of 7:45 with Danger Boy up and taking Bucky out for his morning duties. Ninja Cat wasn’t usually too far behind and then we had breakfast. We all would tinker on electronics until 9 or 9:30 then they dressed and brushed while I got some house work started (laundry or dishes). They would join me for a bit then it was time to get on with the theme of the day.

Monday

Monday we went to the Games Workshop Bunker close to us. Yes, we are a geeky family and we are getting our boys into painting figurines. We had dropped by there a week before after Ninja Cat’s best friend’s birthday party at Sky Zone and they really seemed to enjoy themselves, so I thought why not expose them to a little hands on time. So, we proceeded to carry an old box on unpainted figures, some paint that I had to bring back from near desiccation and a few brushes. James, the manager there is amazing! He was so good with both boys and handling the couple of customers that came in while we were there. He let them sit at a table while he demonstrated several techniques of painting. They sat, enraptured.

Tuesday

For Time to Read Tuesday, we spent some time at the library (duh!) after a very enjoyable lunch with Hubby at Five Guys Burgers and Fries. Ninja Cat is currently obsessed with Big Nate books, so he picked out two of those and nearly finished one while Danger Boy and I picked out Geronimo Stilton, comic books and even The Adventures of Tom Sawyer for him to read. Then once we got home, and after a little more house work, we spent some time reading until it was time to get dinner ready.

Wednesday

What’s Cooking Wednesday found us making a picnic lunch and taking it to a park near my best friend ‘Eeyore’.  She, her little village, and we all needed some time outside. So the four of us (yes, we took Bucky) got our Vitamin D the natural way that day.

Thursday

Thursday was probably our busiest day. It’s usually Thoughtful Thursday, where we do something nice for someone else whether we know them or not. But, this Thursday brought about quite a few Scout oriented things. We went to a local radio station and toured how the voices get from the booths to our car and met some really nice people. Ninja Cat and Danger Boy were … enthusiastic. They especially liked the snack machine. That’s three dollars I’ll never get back. But it was worth it to me for them to have such a great time there.

We talked about what they learned on the way home, changed clothes and went to Panera Bread for a nice lunch and some time for them to play chess. We sampled things off their new menu (tortellini alfredo and penne Bolognese), both of which were very good. Lastly, we made sure to write our thank you notes to our host at Clear Channel. It was Thoughtful Thursday after all.

Friday

My boys always like Fridays. It’s Something Fun Friday. We went to Shelby Farms Park (yes, we took Bucky) with the same friend we met Wednesday. But this time was a little different. On the way, Ninja Cat got sick, yeah physically sick. I was in the process of turning around until he said getting sick made him feel better and he still wanted to go. So we went. So we ate (except for Ninja Cat). So we blew bubbles. So we sat in the grass and drew what we saw around us. So we went home and I let them gorge on video games until Hubby came home early. His boss was amazing and let him go home at 3:00 with the edict “It’s too pretty outside to work.” I love his new job.

I want ideas for this summer or even next Spring Break. What did you do/are you going to do for Spring Break this year?

Of Bridges and Craters

Danger Boy's crater

Okay, so, recently Ninja Cat and Danger Boy had their Science Fair at school.  Fortunately for me this project is science rather than language arts, meaning they were ready to hit the ground running and get their projects accomplished. It’s a pretty big deal to both of them, too. Last year, Ninja Cat won in his category at school, got to go to Oxford  for regional fair, won in his category there and even earned himself an article in the local paper r his accomplishments – magnified by his high functioning autism. Danger Boy, I thought, did an awesome job on his project; but, he wasn’t as lucky. It’s safe to say each of them felt they had something to prove at this year’s fair, be it wanting to go back and repeating a win or getting vindication that he was equally capable as his brother.

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We spent a few hours going through a couple of websites that I love to use sciencebuddies.org and education.com.  Science Buddies is strictly a website for science projects. I love this site because it not only lets you browse projects by subject or grade, it also has a personality type quiz and the answers are a list of projects based on the likes and dislikes of the student. And Education.com is a whole playground of information/worksheets/activities for toddlers all the way through high school. I’ve used their reading comprehension sheets as well as multiplication sheets to supplement Ninja Cat and Danger Boy when they have had trouble with certain topics and math facts. So, going through both websites, we finally came to decisions on what their respective topics would be. Ninja Cat decided to test the strength of three bridge designs. We even came up with a pun of a name for it, ‘“Truss” me I know bridges, “Arch” you glad?’ Danger Boy decided to see if the weight of a falling object would change the size of the crater it made. His title we couldn’t seem to make a ‘punny’ but it ended up being ‘Greater Craters: Does weight change the size of its crater?’

2013-01-24_12-45-43_624Then it became a matter of getting their materials together, actually doing the projects and writing it all down. Because you know to quote Adam Savage, “The only difference between science and screwing around is writing it down.” That was so very true in our house the three days we spent working on these projects. Ninja Cat had a ball building his control bridge and two test bridges out of popsicle sticks and hot glue, at least until he burned himself a time or two. Then, he had to take a break before he was ready to tackle it again. Danger Boy’s project consisted of a lot of plaster of paris and disposable cake tins. We mixed the plaster of paris in the tins, then the smaller batch and raced out to the garage before either batch got too hard to use. We then dropped the small batch into the tin and, after it dried, measured the crater.  By then Ninja Cat was ready to finish his bridges and test them with the weights.

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Then it came to writing it all down and making up the boards. they did a great job of  working on the report and getting the boards built. Fortunately, all this work paid off as they each won in their category (Ninja Cat for Engineering, Math and Science and Danger Boy for Earth, Space and Environmental Sciences). So now we get to go to Oxford for the region VII fair March 21 and spend the day. I’m so proud of the work they did on this project. I hope Oxford is a great experience for them.

Hopefully faithful readers, what do you do to help keep your kids engaged in educational activities? I’d love to know.

Compassion over Donuts

Ninja Cat, if you’ve read my About page you already know, is a high functioning autistic. He’s almost nine, but essentially has the social capacity of someone who is 6. This makes it hard for him to make or keep friends, understand what to do in situations and conversations and generally connect with the people around him. It goes so far that I have to tell him I am disappointed in his behavior and he is about to be disciplined. (I *never* tell him I am disappointed in him. He knows that no matter what he does or says I love him and always will.)

At school he receives Cognitive Behavioral therapy. The way I understand it, it is basically a Pavlovian style of learning that teaches a correct behavior and gives a reward for it. It’s been used for years in all sorts of deficiencies. I think this is great. Kids naturally want attention/rewards/treats, so rewarding positive behavior and ignoring most negative behavior  is a great way to show people like Ninja Cat the way to maneuver through his relationships – not just in school but as he grows.

Part of this is learning about compassion for others. It’s taught in school and in our church. We go to a NACC affiliated church and use only the Bible as our authority. No extra texts, no creed but Jesus, no dogma. And part of that is to be compassionate to one another, especially those that are less fortunate than ourselves. Fortunately, Ninja Cat has taken this to heart; albeit, in his own way. His favorite way is to cheer up crying babies when we are our doing our errands. Sometimes it works, sometimes it doesn’t.  So there are times I explain his autism, there are times I do not. It depends on the vibe I get from the family.

So it made my heart swell recently when his compassion extended to people he’s not even seen.

We were in Wal-Mart recently. It was 7:30 in the morning.  I was picking up 44 dozen donuts for our regular honor’s breakfast. Honor’s breakfast stresses me out in the first place and shopping with them usually does in the second. Gratefully, Danger Boy was able to find the napkins without me having to all but take him there while Ninja Cat stayed with me and helped count the dozens and dozens of donuts. Let’s just say I’m in my own world and hoping the kids just keep up.

Then we head to the check-out line. I could have used the self-check I guess; but, I ended up in the 20 items or less. Before you scream that I had 46 items (44 dozen and 2 pkgs. of napkins), the donuts were on one UPC label. I’m swiping my card and Ninja Cat finds a nickel on the floor. He turns to the gentleman behind us and asks if the nickel is his. The gentleman says no and it’s ok if he keeps it.

But this is the part that gave me chills and almost made me tear up, honest. He tells the gentleman that it’s OK he wants to use the money to help the sick kids. Then, he promptly goes over to the LeBonehur Children’s Hospital bin and drops the nickel in the slot. Now mind you he’s been looking for ways to save money for varying items and projects.  But he decided to give it away ‘to help the sick kids’.

What possessed him to do this? I don’t exactly know. I am hoping that the therapy he’s been receiving at school and the reinforcement he’s getting at home and church is part of it. I’m also hoping most of it is his fire of compassion igniting and lighting the way to make connections with more people along the way.

Autism parents, what are ways you teach compassion in your children? I’d love to know and I’m sure other parents in our situation would love the ideas.

Here We Go

Here is the first posting for This Mom’s Loft. So I’m going to let you, who I hope to be faithful readers, know what is going to be posted in this blog. Just like anyone, I’m not a one dimensional person, so This Mom’s Loft isn’t going to be a one dimensional blog. I have a family, here named Husband/Hubby, twin sons Danger Boy and Ninja Cat and our trusty dog, Bucky. I’m a SAHM and volunteer at the kids’ school when I’m not keeping up with the housework. I also enjoy my Christian walk and both participate in and lead Bible and subject studies when time allows. And the list goes on and on. So I guess what you will be seeing out this blog will be things like:

My Christian Life – The most important thing in my life. So I’ll post things I am learning and observations I make about it.
My family – We function and we have a great time doing it. So you will hear about our endeavors and misadventures, I’ll also write about children’s education, nutrition, literacy. Not from any educated mindset mind you. Just from a mom’s perspective.
Autism – Ninja Cat is a high functioning autistic, so I’ll be posting things I learn from him and re-post things I read from trusted sources.
Geekdom – Yes, we are a family of geeks. We trend toward gaming (video and board games) and medieval things. But we also have room for Star Wars and Legos and science and … you get the picture.
Cooking – I enjoy cooking. It’s almost therapeutic. I’m trying to teach myself to cook healthier and lose 30 pounds. I also plan to do some cookbook reviews from time to time.
General thoughts on life – There may be a current event that strikes me to write about. Who knows.

So that’s just a little about me and my world. What’s going on in yours? I’d love to get to know my readers. Leave me a comment below, k?