Sunday Digest 44...

...which I'm writing on Wednesday. Yeah...tough week. Actually I played a lot last weekend and I'm kind of paying for it now. Anyway - here are the coolest, most inspirational, most informative, most heart-tugging posts that I've found in my Internet roving over the last few weeks. Please enjoy and be sure to tell them you found them through The Simple Life.

1) This piece on waves from kidz pretty much sums up where I've been for the last four years or so. I'm learning to find treasures amid the surf.

2) As usual, Varda at Squashed Bologna nails it again with her piece about words. Varda is responding to the story about the father who planted a microphone on his son to find out what was happening to him during school. He discovered that his son's instructional staff were being verbally abusive to the children in his special needs classroom - children who often do not have the verbal abilities to tell their parents that something very wrong is happening. It's every special needs parent's worst nightmare. Yes, words are powerful.

3) I love reading Laura Shumaker's blog. Her book A Regular Guy was particularly meaningful to me because we live in the same area and I could relate to so much of her story from her son's early days. I also love reading about how Matthew is doing now as an adult with autism. On the one hand it's hard to hear that he is still struggling. On the other hand it's kind of encouraging to know that this is a long process and it's okay that we haven't figured everything out already.

4) Autism & Oughtisms post about words and rhetoric is also important, and kind of what I was trying to say here, but as usual said with more precision by A&O.

5) There have been a lot of mommy wars out there lately: tiger moms, working moms, stay at home moms, attachment parenting moms, blah blah blah. Katy at Bird on the Street says she is "Just a Mom" and that's plenty. I agree.

Ability Awareness - Part 2- Building Peer-Advocacy

We are continuing our series on Bullying. You can start from the beginning of the series here. This post also continues the story from Shelly, a friend of mine from our local Special Needs Parents group. When we left off, Shelly was just about to speak to her son’s 1st grade class to explain her son’s autism. To read part one, click here…then come back and continue reading…

...I had printed off four full color 8x10 photos of my son: swimming in the deep end of the pool with grandma, playing iPad games with a friend, at the arcade playing a driving game on his uncle’s lap, and standing around a fire ring roasting marshmallows with a group of friends. I held up the first photo and said, “How many of you have ever been in a swimming pool?” They all raised their hands. I explained how my son had learned to swim last year and was in the deep end in that photo. A few kids said, “Oooooooh, the deep end.” I then held up the next photo and asked, “Have any of you ever been to Lake Tahoe?” all hands went up again. I explained that this was a photo of my son and his friend playing a game on the iPad on our vacation to Tahoe. One of the kids whispered, “He has an iPad? Wow, that’s cool!” I did the same with the other photos. The affinity the kids had for my son was palpable. I said to them, “Well, many of you have done the same things that he has done and you are a lot like him in that way, but there is one way that he is different from you guys. He has something called ‘autism’.” Everyone’s faces scrunched up. I had them repeat the word. I told them that when you have autism sometimes you have a hard time making friends and you can’t always say what you want. You might do things like make loud noises or stand up in the middle of circle time and be silly when it’s really time to be quiet. I explained to them that my son was born this way and that the doctor’s have no idea why. That even though he looks just like the rest of the class his brain is a little bit different than theirs. I told them to remember that when he makes noises, or maybe if he hits himself, he isn’t doing those things to try to make others upset, but that sometimes he just can’t help it. I told them that they could help him by being patient with him and understanding. We talked about using only a few words when talking to my son, giving him a choice between two things when they’re out on the yard (want to go on the slide or the swings?). I asked them if they thought they could do that and I got a resounding “Yes!”

That night at our Parent Faculty Club meeting my son’s mainstream teacher came up to me and told me what happened after I left. She said that after our lesson that afternoon the class went up to the science lab. While the science teacher was talking to the class, my son became restless and stood up. She said that the boy next to him then stood up beside him and whispered in his ear, “Ok, it’s time to sit down now.” and then sat down with him. She said he sat there and patted my son’s arm until the lecture was over and that he remained calm the rest of the time.

Tears streamed down my face as she told me this. She said that she saw and felt an immediate difference in the children after we left the classroom that afternoon and she was so glad that I’d agreed to come. She went on to say that the kids feel a real sense of responsibility toward my son now, that he is “one of them” and to be looked out for. A week later I got an e-mail from a mom saying that my son had come up as the topic of conversation at their dinner table. Her son now knows how to interact with my son and he feels at ease about this. One little girl even approached me on recess duty saying that she’d introduced my son to two new friends on the yard. She was so proud of that fact and I thanked her profusely.

That lesson took a total of 16 minutes and yet it has had an immeasurable effect on those children and their families. I hope that anyone reading this who has special needs children of their own will be inspired to help raise awareness for their own kids in some way. I feel so blessed to have been given this opportunity and am grateful for the understanding staff at my son’s school. It’s one of the best things I could have done for my son.

Special thanks to Shelly for sharing her story, and being my first guest post here at The Simple Life. Feel free to ask questions or leave comments below.

Ability Awareness - Part 1 - Building Peer-Advocacy

As we continue our series on Bullying, I wanted to share this success story with you. This story is a great example of how to foster peer-advocacy for children with special needs. The author of this piece is Shelly, a friend of mine from our local Special Needs Parents group. Shelly is a former teacher (Kindergarten, 4th and 5th grades) and has her Masters Degree in Early Childhood Education. She is the mother of a 6.5 year old autistic first grader. Shelly devotes her time to her son and advocating for our local Special Needs community, and also enjoys sewing and quilting. I’ll be posting her story in two parts…

My son is six and a half. He is autistic, with a severe speech delay and just started first grade this fall. He is in a Special Day Class and gets mainstreamed into a general education class for a few hours of the day with a full time aide. He is not yet aware of his special needs, but his 1st grade peers are more socially savvy, so I was relieved when the phone rang during the second week of school with a surprising invitation.

Our school psychologist was calling to say that my son’s mainstream teacher had requested that he do an “ability awareness” lesson with her class regarding my son’s autism. He asked if I would like to be involved. I went silent for a second - in total disbelief - at that instant my heart was so full. I was touched that he was calling to ask me this! He explained that as a school psychologist he has been asked many times to do this and knows that some parents prefer anonymity and others like to be involved and wanted to check in with me about my comfort level. The plan was to read a story to the class to set them up for understanding about special needs: how we are all the same but that we are also different at the same time. After that I would have time to discuss my son’s specific needs. The lesson was set for September 7th. We hung up and I immediately began to think of what I’d say and do.

It was a nerve-wracking week for me. I spent a lot of time thinking about how to explain autism to 6-7 year-olds. How could I make it real to them? I would have only about ten minutes to speak and wanted to say it all without putting them to sleep. I called on the help of an autism interventionist friend of mine and my son’s former preschool teacher. They helped me work out the content and flow of what I should say.

The night before, I couldn’t sleep. It felt like the first day of school and I was a nervous wreck. I went into the classroom that afternoon with the school psychologist and an Instructional Support teacher. The teacher began her story. It was a 1992 Sesame Street book called, “We’re Different, We’re the Same” originally intended to illustrate racial harmony. It was a cute story, however, and set things up nicely for me. The psychologist segued further by talking to the students about how they are all a team in their classroom and how even though my son isn’t always in their classroom, he’s still a part of their team. He said I was there to tell the kids a bit more about my son and then turned it over to me….

Sorry to leave it here, but this is the best place (really) to break the story. Come back in a few days to read Part 2.

Bullying Digest - special edition

This is the third post in my special series on bullying. The series starts here. I wanted to share some links with you to resources that I have found helpful on the topic.

1) An IRL friend of mine who also has a blog has been learning about bullying for some time now, both from books and, unfortunately, IRL. I am posting two links from her blog that were really insightful for me to read. The first post helps explore the reasons that a bullied child is bullied. Turns out it's not necessarily because the bullied child is shy or withdrawn...those may be the effect rather than the cause.

2) The second link from Adventures of the Maffeoberries talks about the role of the bystander, and why I feel peer advocacy is such an essential piece to support our kids.

3) I wanted to let you know about a great organization I learned about through the twins' preschool. It is called KidPower. They are worldwide. Look here to see if there is an "office" near you. While their focus is not solely focused on bullying, they do work with children of all abilities to help them learn to be safe. They teach them what THEY can do when they find themselves in a sticky situation - from getting separated from mom while shopping to dealing with the playground bully...self-advocacy at its best. I attended a brief workshop about a month ago and it made a big impression on me. I'll be exploring some of their resources more soon.

4) The IAN project is conducting a survey about autism and bullying. I first learned about the survey through the Autism Speaks Blog. You can  learn more here. In order to participate in the survey you need to register with IAN.

That's it for this time. As I gather more resources I will be sure to pass them along. If you visit any of these sites, thanks for mentioning that you found them through The Simple Life.

Defense

This is the second in a series of posts related to bullying. The series begins here...

There are a lot of ways to head off and respond to bullying. I will highlight some Defensive tactics here and Dig into these in more Detail at a later Date:

Self-Advocacy - This is the foundational attitude you ideally want your child to have. It says, "I am valuable and worthy of respect. There is no reason anyone should treat me badly." This attitude may prevent bullying simply because bullies may pick out targets who seem vulnerable. This can lead to a negative cycle. If your child is still targeted, self-advocacy will at least impel your child to seek help from others. Self-advocacy skills, like many social skills may not come naturally to children with special needs. There are resources to learn these skills, however. I'll be sharing some what I've run across in the following posts.

Peer-Advocacy - The next best defense is a group of peers that will not stand by and allow bullying to occur. Bullying persists in part because bystanders allow it to continue. There are several theories about why that happens which I'll try to follow up on in future posts. Helping your child establish a circle of friends who will stick up for them is vitally important. We'll talk about how to make that happen, too.

Supervision - This may be one of the weakest links in our culture. There simply aren't enough adult eyes per child. I have seen in our own school that even when there are several adults on the playground (at drop-off and pick-up in particular) they are distracted and not observing what the children are doing. You can't catch everything, but the more you can be present and engaged the more you will know what your child is facing and how they are reacting to it. You'll see for yourself what skills they need to learn. I have to be clear here that I'm not talking about helicopter parenting here. I think it is important to provide "just-right" support for your child. For my daughter I can now watch her with peers from a distance - reading her body language and eavesdropping, if possible, to know when I need to step in and give her some support. This is how I know that some children already regard her as "odd" and will use any opening they find to verbally outwit her and highlight her differences.

Policy - By itself, policy is ineffective, but it is still essential. Make sure you know your school's rules and what procedures they follow if bullying occurs. What definitions do they use? How are the rules enforced? What is the communication chain? What documentation do you need?

These concepts are just an outline of the various defensive strategies you need to consider if you're concerned about bullying or know that it is occurring.

Which method has been most essential for you and/or your child?

This post is linked to Jenny Matlock's Alphabe-Thursday blogfest. You can see the other creative responses to the letter D here.

New Series - Thoughts on Bullying

I am about to abandon my normal blogging schedule...you know the one I can't seem to keep up with anyway. For some time now the subject of bullying has been on my mind. I don't have to tell you that it is a favorite topic in the spin cycle. A simple google search of news articles from yesterday brought up two different cases that are getting national attention - one that resulted in the suicide of a 10-year-old girl - on the first page of the search results. President Obama is talking about it, as are several state legislatures. California recently passed two new measures related to bullying. South Dakota can't get a bill out of committee. My interest in the topic, though piqued by all of the furor du jour, is much more personal than that.

My daughter - the one who inspired the creation of this blog - is a ripe target for bullying in two forms. Her developmental differences cause her to stand out in ways that bullies may use as an excuse to target her. In addition her challenged social skills coupled with her personal desire to please and get attention from peers also make her vulnerable to being used as a bully's sidekick or groupie. "I won't be your friend unless you [insert bullying behavior] to [insert target's name]." I think I'm probably already working on borrowed time here. I know bullying can start even earlier than 2nd grade. Since she doesn't have great expressive language skills we may have already missed some minor issues, simply because she doesn't have the ability to tell us what she has experienced each day. There are many mysteries that occur between drop off and pick up at school. All efforts to observe and keep tabs on what she is experiencing point to things being okay. How long can this last?

It goes back even farther than her almost eight years, however. No, this is deeply personal. Looking back on my childhood I don't think anyone would say I was "bullied" in the strictest definition of the word. There weren't any thugs waiting to jump me on my way home after school. No one took away my lunch money or threw my homework in the mud puddle. Still, starting at grade 5, my social experience was one of isolation and constant teasing. Through circumstances pretty much beyond my control I was ostracized, called names, and made the butt of many jokes. The adults around me were either unaware of my situation or took the view that this was all a normal part of childhood. I tried talking to my parents about it but was so embarrassed by the situation and the little involuntary part I played in it that I couldn't fully make my case as to why I needed their help. [I have to say I wish I could go back and change how those conversations went from my end, but when you're a child it's hard to overcome the emotional pieces...but you know that...] At any rate, I tolerated this miserable situation through 5th and 6th grades. Removal to middle school helped somewhat though it also physically separated me from the one friend who had stuck by me in 5th -6th grades. I made a couple of new friends, but mostly stuck to myself in middle school. High school and the relative anonymity of a school full of 1600 bodies was my best cure. I still viewed myself as an outsider and although my self-image improved a degree, I can truly say that it wasn't until a decade ago that I fully processed and excised the effects of those two miserable years from my psyche. Even today on a dark sleepless night fraught with other worries the enemy of my soul will remind me of the pain of those days. Hard to believe that 30 years later the words of a few probably insecure children can still bring me to tears. I am grateful for my faith which has lessened the pain and brought good fruit from it as well. I believe my own experiences have given me a passion to advocate for individuals with differences. I think I am also more sensitive to when people are hurting, and I have a deep desire to help in whatever way I can. So all's well that ends well, right?

If I can help one child avoid the misery that I felt for those two years the series I'm embarking on here will be worth every effort.

I also have to say that as I'm posting this it breaks a long silence. I have acquaintances on facebook who knew me at this time (heck there's a picture of me from 5th grade there - ugh!). My mom reads every blog post (Hi, Mom - I love you!) and it may be somewhat shocking to her to read these words. I want to be clear that I hold grudges against no one. Hindsight brings great clarity. Everyone was doing what they could to maintain their position in the social construct. What scares me is that today's bullying cases are leading to more than just tears. Children are dying. We've got to stop this for every child that we can. That's the goal.

Over the next period of time I'm moving away from my standard posting format. I'll be inviting some guests to comment on this and related topics. I'll be sharing resources I've found so far. I'll be sharing steps that I'm taking with my own daughter, and asking for ideas from you. I'm not sure how long this series will last. I hope to post at least once each week. If you have questions or ideas that you want me to research, please leave those in the comments or send me a note and I'll address those as well. This is so important. Thanks for your attention.

Camping Special Needs Style

We just returned from our third annual camping trip. It was the best trip yet, and I thought I would share some of the things that have made these trips work well for our family. Camping is a wonderful experience, but not without quite a bit of planning, preparation, and a little bit of luck. When considering camping with a child with special needs there are some extra considerations to take into account...

Explore your options - Many state parks have campgrounds with ADA accessible sites and restrooms. Do some Internet searching to find out what is available, and what will best suit your family's needs. Aside from physical access, consider what activities are most appropriate - swimming, hiking, fishing, and educational programs may all be available. Where we live it is best to reserve your camp site far in advance, particularly if you need an ADA site. We made our reservations in March for camping in August.

Safety in numbers - We have not tried camping with just our family yet. We have made all of our camping trips with a group of families that all have children with special needs of various types. This year we had seven families with a total of 24 people, and children ranging from 2.5 years to late teens. The advantages to this arrangement include dividing up the work, and sharing gear (see below). It also helps to have extra adult eyes around to watch your children while you are setting up your tent, cooking, or cleaning up a meal. For us it helps that all of the other families are familiar with various special needs, but you could just as easily go with some good "normative" friends, as long as they get it when you have to accommodate and support your child in various ways.

Safety in mind - Find out the particular safety concerns for your selected site. We have camped in bear territory twice now, though we haven't seen any bears (thank goodness!) we have to be careful about storing food, gathering trash, and generally keeping a neat and tidy campsite. There are other concerns like snakes, rivers, lakes, poison oak/ivy, etc. that you should keep in mind, plus sharp and hot tools that may be easier to access than usual. Carefully arranging your campsite and straightforward, frequent, clear warnings to your children help contain these risks. Nothing beats vigilance and preparation.

Find out what you will need - I found this packing list website this year, which helped us have pretty much everything on hand that we needed. Their list has extra space in each category for you to fill in any extras that you might need for your family. Here again be aware of your campsite's environment and amenities. Some have modern restrooms, others not so much. Our camp has frequent afternoon thunderstorms (not this year!) so having rain gear and dry firewood are a must.

Gather your gear - So camping gear can get pretty expensive, but by working together with your camp mates (if you choose this route) you can often share common gear like cook stoves, pots and pans, canopies, eating utensils, chairs and tables. We have added a piece or two of new gear to our stash each trip - this year we bought another air mattress and sleeping bags for the twins. You can borrow or rent gear, too. So far we borrow our tent every year.

Expect it to be messy - Driving into our campground this year we saw some children hiking by the road who were filthy from head to toe. We laughed and said, "Give our kids five minutes and they'll look just like that." It was true. It is easy to get dirty when you're camping, and dirt doesn't hurt (except maybe in the case of children with compromised immune systems, in which case, well you know best how to handle this...) There will also be times that you have to be flexible and inventive if you forget to pack something (like your daughter's swimsuit...ahem) or when your kid wants a nap when everyone else is setting out for a hike. Although this can be challenging, I also view it as a great way to stretch our daughter's coping skills. I really did forget her swimsuit this year, and she very calmly accepted the alternative of wearing some shorts and a tank top into the pool...a year ago that would have been unacceptable to her.

Have you ever taken a camping trip with your family? What tricks did you learn to make it work well for you? Thanks for sharing!

Sunday Digest 35

Just to let you all know, I've shifted to a new blog schedule...I've been finding it increasingly difficult to get two posts plus a post at 5 Minutes done each week. Part of this is because my usual writing time (nap time!) is starting to vanish, and part of this is because I'm trying to take a more active role in my husband's business. I am hoping to do one post each week here, and keep my posts at 5 Minutes flowing, too, plus any other guest posts that come my way. I may have a couple of guests pop up here, soon, too. We shall see. This may also free up some time to work on a couple of other projects, which, if they come about I will tell you about in due time.

To the business of the day...it is digest time! Here are some interesting links I've come across as I've roved the Internet lately:

1) These first two links I heard about via my fellow blogger, Autism and Oughtisms. She shared them on facebook. I am increasingly interested in learning about the brain, and what happens when it isn't working normatively. This article focuses on autism, perhaps explaining a piece of language confusion in autism where the affected individual reverses pronouns - calling themselves "you" and others "I." It seems these researchers have found that the white matter connections between two  areas of the brain are faulty - picture a short circuit between the light switch and the bulb. I find this particularly fascinating as my mother-in-law apparently has similar white matter deterioration, but in different "circuits." Brains are miraculous!

2) This second link is more practical and discusses first responders' need to learn how to best help an individual with autism during an emergency. Emergency preparedness is a big topic these days, and one that requires special attention if you are a caregiver to an individual with special needs. Some local first responders have registries where you can notify them in advance if you think special equipment or specific information will help them give better aid to your loved one with special needs. Check it out and be prepared.

3) Another friend from down under SquiggleMum posted this "how to" on building an outdoor play kitchen with her kids. It is adorable, and NOT expensive, and I imagine they are having all sorts of fun, creative, imaginative, social play out there. What fun!

4) This touching piece by Tim Gort over at Hopeful Parents explores what happens when a man becomes a dad.

5) Last but not least, my fellow 5 Minutes contributor, Maggie, shared a success story for her twin boys. Thanks to the dedication of a lifeguard and some appropriate individualized instruction they are learning to swim! Can't beat that!

Book Review - Signs of Trouble

The first paragraph of Signs of Trouble puts you into the shoes of the main characters, Amy and Kim. Excited to be on a field trip with their special education classmates, they enter a shopping mall and take in the intense aromas and sounds of the setting. The sounds and some other distracting events, like needing to use the restroom, cause Amy and Kim to get separated from their class. What will they do? They use the skills they came to the mall to practice, and some safety rules they've learned from their teacher to eventually reunite with their class.

What Mom hasn't experienced that heart-stopping feeling of getting separated from our kids? For parents of special needs children it seems even more threatening. Will they remember the rules we've told them? What if they panic and can't remember anything? What if they can't find an adult to help them? We recently had an experience at school that made me even more aware that I need to help my daughter learn good "emergency" skills.

One feature I love about "Signs of Trouble" is the creative exercises at the end of the story that could help support the learning of emergency skills. There are also some activities related to understanding learning differences, another topic that I'm planning to spend some time talking with my daughter about this Summer.

I adore the art work by Jack Foster in this book. It has the right blend of colors and shading to help children focus on the key features of the picture. The characters remind me of the increasingly popular Manga art style. Most importantly, the pictures do not conflict in any way with the text, instead they help us understand - like the picture of the telephone cord dangling feet above the heads of the girls as they wonder which number it is they're supposed to call when they get in trouble.

The story line seems like just the right level of conflict for children - not so scary as to be frightening - but clearly some problems they can relate to, like a stranger approaching them when they are already nervous about being lost. There is a fair amount of text on each page, which might make it challenging for early readers, but the story line is straightforward and well stated. Overall this is a great book to read if these are topics you would like to talk about with your children or students.

Disclosure: Janet Ann Collins, author of "Signs of Trouble," is a writing acquaintance of mine. We've only met once in person, but correspond a bit by e-mail and facebook. She asked me to review her book and was kind enough to send me a pdf copy to that purpose. I received no other compensation for this review, and as always have given my honest appraisal of this lovely piece of work.

Everybody Goes Surfin'...

Here's something to make you wish you lived in Southern California...unless you already do in which case you should head out to Dana Point, and specifically Doheny State Beach where volunteers from Best Day will be working with children with a variety of special needs to help them surf, body board, or kayak. November 13 and 14 for half of each day, children with a variety of challenges are invited on a first-come, first-served basis to work one on one with trained volunteers to enjoy the sand and surf. I can hear the Beach Boys harmonies in the background.

Best Day is an organization founded in 2008 by Max Montgomery and Brooks Lambert. They've already hosted nine similar events in New Jersey and Ventura, CA. Check out some photos of those events here.Their goal is to help children with special needs gain confidence and self-esteem through safe and fun adventures. The events are size-limited to ensure safety. They are also free to registered participants because Best Day is run by volunteers and funded through donations, grants, and sponsorships.

Want to get involved? Visit the Best Day website for more information.

• Volunteer - older school children through senior citizens can all play a role in making this special event happen. Don't like the water? There are plenty of jobs for land-lovers. Check it out.
• Donate or become a Sponsor to help keep these events free for the kids
• Bring Best Day to your community
• or Bring a kid November 13-14 to Doheny State Park, Dana Point, CA or one of the other upcoming events and join the fun

Let's go surfin' now...everybody's learnin' how...

Seclusion Rooms and the Like

I found this opinion piece in my google reader feed. Ill-equipped school staff are handling "disruptive" students by placing them (sometimes forcibly) into small, enclosed, quiet rooms for some period of time. Other programs use restraints inappropriately. One problem, as I see it, with using punitive discipline with special needs students is it is often applied without a clear understanding of what leads up to the "mis"-behavior (antecedent), and therefore does not address what the student's behavior is trying to achieve.

For example, Johnny taps his pencil loudly on his desk during a work time when the students are supposed to be doing a quiet writing exercise. He does not respond to the teacher's reminders to be quiet. Eventually the teacher makes him stand in the back of the room because he is tapping louder and bothering other students. The next day he does the same thing. The pattern continues and soon Johnny is not finishing any of his writing projects. Johnny has learned that to get out of sitting quietly and writing he just needs to tap his pencil loud enough to irritate the teacher. The teacher is giving a consistent response, and one that some children would respond to, but for Johnny it reinforces his negative behavior by helping him avoid an undesirable activity. Only a person trained in behavioral analysis should suggest appropriate responses to negative behaviors of students with special needs. My guess is Johnny should still have to do his writing, even if he does it in the back of the room where he doesn't disturb other students.

Beyond the counter-productive misuse of punitive measures, a U.S. Government Accountability Office study found that in some cases these methods have caused physical harm to students including death. Students with special needs are disproportionately subject to such aversive treatment because school staff are inadequately trained to respond to their behavioral challenges in appropriate ways.

Recently a good friend traveled to Washington D.C. with an advocacy group to support, among other measures, the Restraint and Seclusion Act (House of Representatives Bill 4247, Senate Bill 2860). This bill has now passed in the House of Representatives and appears to be in committee in the Senate. Keep your eye on this as it is important for the safety and emotional well-being of many children with special needs.

Autism and Epilepsy Brochure

A couple of days ago the Daniel Jordan Fiddle Foundation (DJF) published a brochure on the connection between epilepsy and autism. The pamphlet is available as a PDF and is available for download and distribution free of charge. Epilepsy is one of many co-conditions that can be found in people with autism. The brochure summarizes current population data on how often the two conditions coincide. It also provides facts about autism and epilepsy, discusses various seizures, what they look like, how bystanders should respond with first aid and medical attention, etc. I think this is a useful resource for anyone who is often around children with special needs where you are more likely to see a seizure first hand. Would you recognize it? How would you respond? The DJF is a national organization that advocates for adolescents and adults with autism by providing grants that provide maximum integration with society.

Safety

Now I have to deal with one very important caveat to the inclusive practices I've been encouraging in my recent postings, and that is safety for all concerned. I believe the basis for this consideration can also be established in scripture. In Leviticus 13 God establishes practices in the people of Israel for dealing with infectious skin diseases. Verses 45-46 gives a clear directive, "The person with such an infectious disease must wear torn clothes, let his hair be unkempt, cover the lower part of his face and cry out, 'Unclean! Unclean!' As long as he has the infection he remains unclean. He must live alone; he must live outside the camp." To our modern ears this sounds harsh, but in the days before antibiotics, steroidal drugs, and hygienic processes this was the only way to protect the health of the larger community. One disease that was particularly feared, and for good reason, was leprosy. This devastating skin disease is still not completely understood and is not easily treated even with modern medications. In the days of the Old Testament a disease that lead to debilitating injury to extremities, skin, nerves, and eyes; and can be spread from one person to another through some still unknown mechanism would be a fearful thing. In order for the community to feel safe a person infected with such a disease would need to be quarantined, and because left untreated leprosy is chronic, the remainder of the person's life would be one of isolation except from others in a similar state.

There is hope, however, even in Biblical times. There are several stories of God healing lepers, including Miriam the sister of Moses (Numbers 12) and Naaman the commander of the army of Aram (2 Kings 5). In the New Testament Jesus touched numerous lepers and healed them (e.g. Luke 17:11-19). Clearly the heart of God was for these outcasts to be returned to society. In modern times a leprosarium known first as Carville and later as Gillis W. Long Hansen’s Disease (Leprosy) Center in Carville, LA was established as a refuge for individuals infected with the disease. The picturesque campus served as both a home and a research facility to develop treatment for the disease. Thanks in part to these efforts, there is now a method for diagnosing and treating the disease that allows infected individuals to re-enter society without risk to the greater community.

Can we extrapolate both the security of the community by isolation and the hope of re-incorporation to special needs children? There are times when either for the safety of their peers or for their own safety special needs children may need to be pulled aside. It is hard. We recently walked through a season of this with our own child. However, I believe the goal should be always to work toward re-incorporating the child as soon as it becomes safe for all concerned. The time of isolation should not be spent in ostracizing the child or further restricting their activities. Rather it should be spent in developing skills and strategies for them to re-enter "normal" life in safe ways.

Part one Inclusion
Part two Inclusion
Part three Inclusion
Part five Inclusion