Resources for the "one of" special needs student

Mississippi | Missouri (Photo credit: Kevin Saff)Moving to a small town was disconcerting, but finding out there were no children like D was even more so. No autistic students were enrolled at his level of cognitive difficulty.

 Indy is a veritable melting pot of disabilities and disorders, and every resource you could think of is represented somehow by their number. It made information easy to come by when you search. Here, even people are hard to find, and they are typically my favorite resources. People always seem to know something outside the manuals and tend to supply anecdotal guidance.

The first step after relocation is to find your local advocacy agency.
MPACT is the local equivalent to INsource back home in Indiana.
Here is where you find your most important resource, the law.

Determining placement here is a bit slow, so far. Children like D (severely disabled) must apply to the schools that are appropriate in the area in a fairly involved process with much testing and much discussion. We're waiting to hear now.

Rural areas are, understandably, lacking in my favorite resource; people. Take your support where you can find it. Schools and online resources are the best bet in a farm community.

My one in eighty-eight.

Light It Up Blue (Photo credit: Wikipedia)Everyone has by now heard about the CDC's revision of autism rates this week. You'd have to live under a rock to miss it. Sometimes people need to see the numbers, I get that, but just as often we lose the perspective in the big picture.

D is my one in eighty-eight. He certainly isn't the only one that counts to me, but he's the one , about whom, I am an expert. Much like those number crunchers up at the CDC. I have a specialty in the big picture. It's the big picture of one little man.

Widen that lens to include eighty-eight others, then hundreds and thousands, just like him, and my heart stops for a second. This number is up from 1 in 110. Think of the impact of that increase, even if it can be explained by detection. One in every eighty-eight who needs neurology, special education, dental care, accommodations and modifications, and more medical care than I can even name. It's mind boggling.

There is not just personal devastation with every autism diagnosis, but there is a social and economic devastation, as well. Autism has to become a priority, not just for the parents of the diagnosed or the lobby, but for society at large. Denial can't be laughed off any longer, nor can indifference continue unchecked. With rates rising at this pace, one thing is certain; whoever you are and whatever you do, it's only a matter of time.

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Who's the bridge?

Image via WikipediaWe had an interesting teaching moment this week. My son and I went out to play in the neighborhood. My usual routine is to stand back and let him go when possible and watch closely. As has happened often, this time intervention was required.

Some boys started mockingly saying he "looked like Justin Beiber". I think we should conclude that was a bad thing. Not that I have an opinion.  My m.o. is always to avoid the sins through education. As I walked across the playground thinking "welcome to school, boys", they looked a little apprehensive. I may have a reputation that precedes.

What followed was a twenty minute autism Q &A with four of the cutest ten-year-olds on the block, and an incredible interaction for my son. We talked about sign language and why my son can be "creepy" when he stares. We exchanged information, and, at the end, they wanted to go try their new sign language on him and say hi. He said hi back.

Just like that, a potential bully situation became a seminar in autism. D bounced off the playground feeling included, and, with any luck, four young men developed a special view of the disabled.

Autism awareness flows from our willingness to get over ourselves as parents. We have to see our child as the world sees him in order to interpret for him. That isn't easy. I suspect it isn't meant to be.

We are the bridge, which means we have to connect to the other side. D can be creepy if you don't know him, and when he screams and yells, it wakes the dead and makes young hearts tremble. I have to accept these things before I can help anyone else connect with him. If I get all momma bear when someone finds him creepy, I'm already defensive and ineffectual. But if I reach out with information, I'm a teacher, an ambassador.  That's not D's job. It's mine. I'm the Bridge.

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Does primary disability matter?

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The short answer is; it can.

When you get your first individualized education plan from the school, it will have a primary and secondary (if applicable) disability. This should be an indicator of where your child tested in the evaluation stage.

The primary has a couple of functions. It gives every future teacher of your student a heads up about where they are and what they need. It can also be pivotal in placement decisions. For example, kids with emotional disabilities need something far different than children on the Autism Spectrum. Typically, these kids will be serviced in far different programs and in very different ways.

Often an Autism diagnosis is needed to gain access to useful programs like STAR or TEACCH.
That is one consideration, but there are many others. The needs of the child are paramount. If you suspect your child is mislabeled and doesn't have the right fit for a program, it may be time to write out a new request for a re-evaluation. Parents can do this at any time. Though, remember the system is crowded, and the process doesn't happen overnight. Major concerns can be dealt with while the eval is underway.

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Parents of autistic students suffer anxiety disorder and depression at higher rates.

Image via Wikipedia A study indicates in black and white what parents raising autistic kids have known all along. It's really hard. After my own diagnosis with panic disorder, it became obvious to me that we couldn't be the only ones, so I asked around. Many of the parents we know are taking medications for anxiety or depression.

The root of the problem lies in the constant alertness a family dealing with autism has to maintain when on the severe end of the spectrum or going through a difficult "phase" of a child's development. In our case, sleep deprivation has played a significant role. Having a child who doesn't sleep means parents can't sleep.

These are actually good things to know for educators dealing with parents of students who have autism. Their problems aren't like your problems. You worry about picking up your dry cleaning. They have to restrain kids from jumping in around every puddle or lake or fountain.  In our case, once I fell asleep after 72 hours straight of no sleep or interrupted sleep. I dozed off sitting up on the couch, and when I woke up my toaster was on fire. I didn't fall asleep easily for a month. Prolonged lack of sleep affects behavior and thought in parents, as it will in anyone.

Studies have demonstrated that a lack of sleep impairs one's ability to simultaneously focus on several different related tasks, reducing the speed as well as the efficiency of one's actions.

People suffering anxiety and depression have different responses to all situations. A person with panic disorder can be triggered by a simple conversation or phone call from school. They become short tempered and can't communicate meaning effectively. Teachers dealing with parents suffering these conditions won't know the reasons for a behavior, but they could anticipate the possibility, learning to take nothing personally and slow the pace of a conversation to help a parent stay focused.

Educators have no choice but to deal with negatives in a child's behavior, but they can help by going to parents with positive suggestions fully developed and ready to implement, not just calling to report that little Johnny is biting again. Most of the time, and I speak from experience, parents have no idea what to do. Let them know you have an idea you want to try, explain it and get their approval. Problem addressed, and the teacher has given an incredible gift to a parent; the gift of solutions.

Involuntary suspensions and Autism

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A little known fact is that any time you are called to your child's school because of behaviors and asked to take them home. It's a suspension. What this means is that it's inappropriate to keep a parent on speed dial waiting for the next blow up. Oh, it happens.


What are the choices for parents? It's tricky. You could refuse to pick them up, but this leaves your child in a situation that is obviously not working. You could go get them. In this case, a parent can ask for documentation that they were asked to get their child. That's key to the next step; fixing the problem.


Warning Signs

When a parent is called for a fever, it's a sign that a kid is ill and needs rest, maybe some soup. When you get a call saying, "we can't handle this kid". That's a sign too. It's a clue in to a bad placement or a need for modification.

The first thing to look at is the data. Behavior charting can offer big clues for parents. If there's a pattern, you can see it. Remember that patterns can be found in the staff present or absent, as well. Behavior charting should already be done each day and ready for the parent at any time. It should be easy to read and understand, and it should be complete.

Looking at our child's environment is important. If they are already in the most restrictive environment, what changes can we make that will get them back in the classroom and learning again?
Look at staffing, are there enough? Too many? Are they trained in your child's disability?



Take Action

Time is precious in the classroom. When we see a pattern of classroom removals (in school suspensions) or involuntary suspensions, it's already time to take some action. It is important to determine the least restrictive solution. In some cases, a new placement is in order. Others would require a one to one staff member, until documentation proved no more need for it.

Missed class time is a tragedy for any child, however, in the world of special education it's a warning sign. When a child isn't fitting into a classroom anymore, something must be done quickly to get them back on the road to success.

Sigh.

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For some time now, I've dialed back my resistance of our school's administration. I've rooted for the inter-local and wished for its success. That inter-local isn't even here yet, and the disappointment seems inevitable. A wise woman once said to me in a training that your child's education doesn't have to be a Lexus, but the state has to give you a Ford at least. Well, Darrel is kicking the tires on a jalopy and wondering where it all went wrong.


There were big plans for ABA training. It never happened. Neither did TEAACH or anything else for that matter. We got a parent on the Autism Team for the township, and I was so excited. Oh, what we could do! Nothing. That's what we could do. Nothing happened.

 We have so much technology, so many programs, and so much we could use to make our kids functional. It wasn't a matter of cost. I know that will be the excuse given, but it's just that, an excuse. Implementing policy in the classroom usually doesn't cost a dime. The price is will-power. Orientation training for teacher's assistants who do the lion's share of the work, that takes time, but it's worth it. Autism training which is mandated isn't even happening consistently.  What does it all come down to? I have an answer, but it's not PC.

How the heck will we include the most severe students if we don't even give them comprehensive tools like sign language, PECS and behavioral training? The answer: we'll pretend we did. We put them out in a self-contained classroom or a general education setting and pray for divine intervention. One day, we'll be right back in that CCC discussing suspensions and change of placement. It's not good enough. Sorry, Indiana, but you are flunking out in special education.

Then to hear things from so many professionals and even advocates like "it's happening everywhere!" as if that excuses our failure to make it stop happening. Again and again, I've seen what true intervention can do for a child. I'm sick of being told it takes money! No, it really doesn't. It takes effort! If I can do it at home, you can do it at school for free.

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Rubber, meet the Road. Road, . . .

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Brick Buddies is over for the year. It was a long haul getting from here to there. There is still a ways to go. Brick Buddies is our RISE Learning Center LEGO club, and it has students on both ends of the spectrum included. We weren't able to have peers without disabilities, but how awesome would that be, huh?

Extra-curricular events, clubs and teams are rare for children with disabilities. At least, they are here in Indianapolis. So when a friend came to me with a study about LEGO and its benefits to children on the spectrum, it seemed a good fit. The problems soon became apparent.

Problem One: You need Legos. Lots of them. My first source was Wal-mart. Go to your local store and fill out a simple form telling them what you're needing and why. They've funded us two years running. This year we also obtained some stimulus of our own for the club. That will keep us going for a while.


Problem Two: This one you will not believe, but staff were semi-resistant to the club. I'm speculating as to the cause, but I think it may be related to our habit of lowering our expectations for "those"kids. Lower goals not expectations. The fact is that autistic kids have an affinity for systems. Lego is a building system. It's the same reason so many like math.

Problem Three: RLC is a facility with students from both ends of the spectrum, and every disorder under the sun seems to occupy its halls. That makes for a problem I still haven't fully solved. High and low functioning students at the same event. One thing I've learned is that the kids can and will let you know where their talents lie. I can say with certainty that social skills training was accomplished.

To parents, I say: If you have time and ability to share, starting recreational groups for children with disabilities is the best way to go. Kids need these kinds of experiences. They need the opportunity for play, for conflict, for self-regulation. We all learn these things the same way, experience. The learning and mentally disabled need more experiences than the rest of us, not less. Whatever you do, keep your child in the game. Don't let them retreat from the world.

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We All Have Autism.

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In the very beginning, it was important; no, imperative, to me that the other two kids not lose their childhood to this disorder. I saw it as the enemy, and still do sometimes. No way would it ruin things for everyone. They would get to be children for as long as they were children.

A few years in, I had started to calm down a bit, but the fruits of my labor were beginning to show. When D would melt down, the other kids complained, whined, threw fits all the way home. Family outings became segregated. Worse yet, I didn't like the attitudes they harbored against their brother. They resented that he was different, that he interrupted their fun. They didn't want a sibling with autism.

I had been parenting all wrong, and it was long past time I pulled my head out of my behind and did something. So I got them all together in one room and said, "Newsflash! We all have autism." That got their attention.

I'd been teaching "every man for himself" when I wanted to teach "all for one and one for all".  Families stick together. Families shoulder each others' burdens. They work together as much as they play together, but I'd been too concerned about preserving their carefree childhood.

There are mental health professionals out there clucking their tongues at me right now. I know the common wisdom, but I wanted my children to learn uncommon wisdom. We never wanted our son's siblings to carry the load, but neither did we want them to be one's to leave it to someone else either. We wanted them to be the kids who included the autistic kid on the playground, not the ones running away from him. How will they ever learn compassion and loyalty if we put their comfort first? We seldom learn wisdom in comfort.

The Result:  Since our family changed our motto, the kids are closer. They care for D like a true sibling, and an unexpected thing happened. Our oldest, I realized, has many disabled and learning disabled friends. He's truly including everyone he can, and that's so much better than a carefree youth. When all is said and done, I'd rather be able to say our kids are empathetic, caring individuals who work for the greater good, than to simply be able to say "well, they had fun".

There is no fear in love; but perfect love casteth out fear.

 1 John iv. 18.

Socially Acceptable

The Indiana Resource Center for Autism has some amazing trainings. I was lucky enough to attend one just in time for our Case Conference Committee. As we all know, autism challenges a child's social skills. Schools, with limited time and resources, assign value to social skills training. As any parent will tell you that equals 15 minutes of social skills training every two weeks. Right?

There is a study out there suggesting 30 hours a week isn't enough! If you work extensively with autism, you know that every moment of the day has some opportunity for social skills training. 30 hours shouldn't be that hard to reach- if we're creative. Teachable moments occur all the time.

Another surprising thing I learned was that teacher gender may matter. This related to my own experience in the classroom. When teaching kids to be socially adept and maneuver into a conversation, I would often teach them to interrupt me politely with a hand on my arm. How girly is that!  Obviously, I need a new strategy for the guys.

The trainings were led by IRCA staff such as Dr. Cathy Pratt and Scott Bellini. If you get a chance to go, I say jump at it. April 9th, Dr. Bellini is giving another conference on video self-modeling. This is a method we intend to try with our son, showing him how he looks successfully completing a task or behavior. The study on video self-modeling, Increasing Social Engagement in Young Children with Autism Spectrum Disorders using Video Self-Modeling, has been published in School Psychology Review.

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Most Restrictive Environments

Every one knows the phrase, but so very many educators don't understand. My son attends RISE Learning Center in Indianapolis. It's considered one of these environments. However, let me tell you why it's least restrictive for him.

Darrel couldn't be given the time and attention in a gen ed setting or even a simple special ed. classroom to learn simple things like walking in the line or not hitting others to get attention. His understanding and his behavior would cause him to be ostracized socially and under-educated in a less restrictive environment.

D can't sit down for very long, and it's not just behavior. He CAN'T sit down for long periods of time. It is painful, uncomfortable, distressing. Regular academic environments have the restriction that you must. It must be done this way, and that makes them too restrictive for Darrel. This is the reason a more restrictive environment belongs on the continuum of services for special education students.

It shocks me everyday to meet professionals in education who are against these environments touting inclusion, inclusion, inclusion like it's the magic cure. We have numbers that inclusion has good side effects, but my question is; Has anyone actually looked at its effects in terms of effectiveness compared with intensive, comprehensive service environments like RLC? I doubt it. The severe end of the autism spectrum interferes with our preconceived notions. My hope is to see education truly individualized as we profess to want it. Inclusion isn't right for every child, or it may not be right for right now. With intensive work on behavior and symptoms of the spectrum, a child who would never be included like Darrel or who would never learn if included, might have a hope of inclusion in the future.

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How do you like those odds?

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1 in 110. With an adjustment for cell phone versus land line use. Those appear to be our new odds of having a child with Autism. NPR reports in its' blog that there appears to be an increase, but no one knows what that means.

Can I say something as a parent and advocate of special needs children? Well, duh! Welcome to our world. People may disagree about why it happens, what happens exactly, or how to deal with it, but, one thing remains the same, we all know it's happened a lot.

Several facts come to mind now as I write this. First, we put only a fraction of our research dollars into autism's cause. Second, special education services are cut far too often when our autistic children's numbers are increasing. Third, bureaucrats and scientists spend way too much time debating stupid things like whether we put mercury in flu shots or 15 minutes of social instruction v. 5. Can we announce now that everyone is on the same page?

Here we go

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The long, and apparently, cold winter is upon us, and there's too much to do. This week I painted our apartment dining room wall. Why? Not because I wanted to, but because Darrel has been so very, very destructive. It looked awful.

Now, I've gotten tired, and it's not over yet. I have a cleaning crew on Monday. Ironic how that means I have to fix and sweep up and do my best to generally disappear the other things Darrel has done.

As he's gotten older, it's gotten better, but no one, even my husband, realized how much time I devoted to cleaning walls and fixing things around the house.

And just once, it would be nice to look at lamps or vases in the store and not think, "how long would that last?" Every year since D was tiny, we've "autism-proofed" our Christmas tree. It only takes one glass-as-candy incident to drive home the need. The list of things we can't have in the house is almost as long as the list of things we want for Darrel.

What can you do? When it comes to autism, as it is with most things, life really is adapt or die. Maybe this week we should all look at our lives and thank God for options. You'll know it when you don't have them anymore, and oh, how we miss them when they're gone.

Must we flush !

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Things you never thought you'd say until you had a child with autism. That's my thing this week. Of course, it was preceded by "We do not RIDE the cat" and "Pants UP!"

We're flushing the toilet. No, I mean a lot. It's killing the planet one flush at a time. Referring back to the article on stim, this is one of the battles you take on, but how does one fight the lure of the flush?

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To Stim or not to Stim. That is the Question!

Spinning is fun. We don't have to be auties to know that much. For Darrel, it 's a way of life. The things we do. . . We spin everything. If it goes in circles, we have to try, twice. If it makes colors when we spin it, OMG!

As his parents, teachers, friends, we laugh at the habit. We try to stop the habit. Sometimes, we accept the habit, but it is one of the things that makes us different. When we go out, we're sometimes carrying things to spin. We pick the hill we mean to die on, and spinning isn't usually that hill. Speech might be. Screaming might be, but spinning? No, not this week. Probably, not next week either.

Maybe that's what I wish people knew. We're trying. Hard. However, autism kicks our butts a lot. And it depends who you talk to whether it's somehow our fault. Some people think it's just part of who he is, and we're wrong to change him. Others say we're letting too much slide. Discipline is key.

Autism, for us, is severe enough that I have to pick and choose what we're going to fight for that week, that month. We focus on speech more often than not, and behaviors that alienate him from others like aggression or screaming. However, when we get the well-meaning advice or contemptuous glares from those in our community for whom we are an inconvenience, part of me wants to grab them and shake them. Scream a little myself. Say, "What the Hell would you start with, Lady?! Huh? Just what do you think you could do in my place? Because I could use a spa day. You wanna turn?" The difference between Darrel and myself is that I don't get to say that. God, I want to, but I don't.

Most days the misunderstanding just rolls right off, but some days it's harder. Some days, I woke up thinking about all the things he won't get to do or I'm tired and he's tired. I will admit to occasionally, during the early days when things were REALLY bad, letting my tongue go in a grocery store. Sleep deprivation lowers inhibition. I can't support that statistically, but it's my educated guess.

The good news is that he's better, and it's less of an ordeal (THANK YOU JONI) to go out and do things. The really good news is that he's become pretty aware of when I'm headed for my own meltdown, and Darrel hugs appear to be the cure.

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One of those moments

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Yesterday, I screamed! It was one of those moments we have where our whole family goes nuts over something Darrel did. And all the other people we tell about it say, "Oookay".

We needed to move out, and Wendy couldn't find a shoe. I wish this was a rare occasion, but it wasn't. Meanwhile, D has been listening in to everyone running around like crazy people looking for a lost shoe, and he's doing the math. He finds the shoe, takes it to Wendy who's five, and puts it on her like she's Cinderella. Problem solved!

It's not a big thing in the scheme of things, but, for us, it was interaction, genuine, God-bless-it interaction. Darrel not only took an interest in events around him, but solved the problem all on his own. We're used to a different type of interaction that is very Darrel-centered. Typically, D worries about the things that bother him. Of course, it's possible that the crazy people were getting on his nerves, and the behavior was all about him. I intend to be optimistic. It's so seldom that we get to look on the bright side that I'm grabbing on with both hands.

Aspie's Online

Who knew there were autistics out there who love autism? It's really amazing. YouTube's The Wrong Planet is actually a study in what's wrong with autism and defines it as a disorder.

Kids with autism can't always get social cues and have difficulty empathizing. Since the broadcaster of The Wrong Planet is fine with his disorder, he doesn't understand why my son might not like his. The point is that Aspberger's/high-functioning autism is not the end of the spectrum that will destroy a child's life. On our end of the spectrum, computer broadcasting seems like a pipe dream.

My point is not to belittle the contribution of this child to the world at large. He has great talent and ability but little human understanding. That's another symptom, not a reason to rejoice. Egocentricity and autism go hand in hand.

Darrel has many strengths. Autism isn't one of them. Unlike some parents, I am not waiting for a cure, but you won't see me going to Autism the Musical anytime soon either. My son isn't NON-neuro-typical. His brain is physically hindered, and I wish to God it hadn't been because he deserved much, much more happiness in life.

Instead of marriage and children, he will grow old with me and his father. We will all work tirelessly to get rid of autism because the only thing that's changed over the last twenty years about our world is the environment. We are doing this to ourselves, and that is my heartfelt belief. There are changes to be made, and complacency isn't an option. Thank God for Autism Speaks and others like them.

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A Special Ed Blog With Soul

He's my reason. Waking up each day may be hard, but somebody needs me to wake up and go on. Darrel is on the autism spectrum, on the severe end. He cannot talk. He can't sit still, just runs and spins things. D loves to spin things. He isn't my only child, but he's my permanent child. So I wake up even when I've only had two hours of sleep the night before.

This blog will, hopefully, fulfill a need we have seen so many times over the years to educate others on what it is to be on this spectrum. High-functioning autism isn't what D has, and yet so many assume that is what autism is when, in fact, the majority of children on the spectrum cannot be classified as high-functioning. In other words, Rain Man is not the norm.

Our experience with autism has not been a musical. It's been a nightmare; the nightmare of watching our child suffer through symptoms we couldn't change or fix. Every child with autism is in some way or other, slightly or severely, uncomfortable in their own skin. Every day is teaching D how to cope with the way things are because they aren't going to be different tomorrow.

For the sake of every child on the spectrum, spend 15 minutes with us each day, or even each week. This disorder is spreading rapidly. 1 in 150 children are diagnosed with autism.