Why Pre is Better than Re

In most things that pose any kind of threat to us--health, safety, financial security, we know it's better to prevent bad things from happening rather than redo them. We take care of ourselves to stay healthy, we lock our doors and set alarms, we save money for retirement. I wish we practiced it more with school discipline.

A fantastic article, "Beyond Zero Tolerance: Achieving a Balance in School Discipline" points out the flaws of our current take on school discipline, hearkening to the 1990s, when certain incidents of violence provoked sometimes radical fears. Those fears led to schools "cracking down" on discipline by expelling and even arresting kids for behaviors that "would not be tolerated". What we know now as "zero tolerance."

Intolerance Makes Us All Zeroes

From women's rights to civil rights, the idea of being tolerant makes us all better human beings. But, the facts are this: "after 15 years, extensive reviews of the literature by researchers and professional organizations such as the American Psychological Association have found no evidence that increasing suspensions does what it has intended and no evidence that expulsions improve student behavior or guarantee school safety. In fact, schools that employ more suspensions and expulsions have poorer ratings of school climate and school safety, higher rates of racial disparity in discipline, and lower scores on academic achievement tests."

Disciplining children, especially those with special needs, sometimes by taking away the very things they need most, inclusion, recess and education...doesn't work. Doesn't that seem like a no brainer? Hmmm...let's punish these kids who clearly have some underlying cause to their behavioral manifestations:

• Probable lack of social skills=Day in the office alone. Silent lunch. No recess...That sure helps with social skills...
• Typically overweight due to preference of video games over physical activity=No recess. No play time...No brains on the part of the school!
• Possible learning deficit due to disability=expulsion. No learning happening there, folks!
• Economic strife that may have led to behavioral manifestations=Gee, let's suspend that kid so his mom has to stay home and not go to work...therefore, she'll make less money and it'll cause more stress!

I fully understand the need to teach consequences. But, I wish we focused more energy on preventing the action from occurring in the first place.

When I was rallying for my own son, I thought of so many kids, those with special needs and neurotypical kids, who fall through the cracks. I witnessed it. I volunteering in one Ben's classes. It was an inclusion class, meaning there were a range of kids with varied learning and social issues. As the teacher was sternly trying to get the kids to attend to a video, I saw a child in the back of the room picking on another student. The young girl sitting quietly across from us saw it too. She tried to get the teacher's attention to tell her what was happening, but the teacher told her to be quiet and not interrupt. She tried again and the warning got louder. The girl tried to explain she was only trying to help and I even spoke up. This girl, who was trying to do the right thing, curled into a ball on the floor in the corner, took off her glasses and started to cry. I went to her and said, "you did the right thing. Be proud of yourself." It's a trite example, but what would happen if we just started to listen? What would happen if we got to the root of the problem and tried to prevent it from getting worse?

Turning From Zero to Hero

In 2011, Education Secretary Duncan and Attorney General Holder launched the Supportive School Discipline Initiative to "support the use of school discipline practices that foster safe, supportive, and productive learning environments while keeping students in school."

It's working. Schools have begun to reduce exclusionary discipline by replacing it with ways to teach positive behavior. In the Denver school system, the Restorative Justice initiative focuses on shifting from punishing individuals after wrongdoing to repairing harm and preventing reocurrence. 

Special needs children with behavioral challenges have certain safeguards under the Individuals with Disabilities Education Act (IDEA). Parents facing this issue should have this in their arsenal. Procedures such as a Functional Behavior Analysis and a Behavior Intervention Plan (emphasis on the word Intervention!) are critical tools to advocate for your child. Know your rights and help teachers and administrators realize misbehavior is not often something your child can control. Disciplining the child for something they may not even remember or understand is useless. Helping them to find ways to cope and learn teaching positive behavioral strategies...priceless. 

Let Your Freak Flag Fly! A Lesson for Everyone

In our house, this is a motto. It comes from one of my favorite movies, The Family Stone. Fly Your Freak Flag. In the movie, Meredith (Sarah Jessica Parker) is an uptight New York overachiever about to marry the wrong man. She travels to meet her intended's family, which escalates to a  'get-me-out-of-the-house' holiday gathering. She escapes, courtesy of her impending bro-in-law (Luke Wilson, yes...he's damn cute. Carry on) and goes a bit cray cray and unbuttons her nun-like couture to let 'er rip. You know...drunken bar dancing a la Elaine on Seinfeld.

My point? Leading up to that moment is one of my favorite lines ever. "You have a freak flag. You just don't fly it." (Thanks, Luke).

This movie came out a year after Ben was born. I had no idea of the effect of that particular line, but I liked it. What impacted me more was the relationship of the grown children in the movie with their dying mother. Now, at this point, my own mother would wait another five years to die of cancer and a related cardiac arrest, but at this point in our lives, she's just pulled out of a burst aortic aneurysm, that led to emergency open heart surgery, which she miraculously survived.

My long-winded point is, that motto sort of saved me many times. Ben remembered it. We'd be in public places, movies, parks, events, etc, and if the music moved him, he'd just get up and dance. And I LOVED it. I relished it. I joined in it.

His older brother was mortified at times. He'd yell at me and be embarrassed, but I kept reminding him that some day, although there is now way he can see it now at age 12, he'd laugh and feel love and happiness at these silly, unconscious moments we all we wish we had more of. I'm guilty...I thrive on routine for the sake of gettin' it done on time. But in reality, I love to let my freak flag fly. Caretakers, this doesn't mean, go get high or drunk and relieve yourself of the sometime burdens of having a kid on the spectrum. It means...find a way to relate. Find a way to let their freak flag fly and never, ever be ashamed of it.

Wright's Law and Other Important Resources

Welcome to the world of acronyms. OMG, there's so much to know. :)
In dealing with all of the issues we had during Ben's 4th grade year, I did a ton of research, met with special ed lawyers, went to the school board, etc.

The most important source of information for me was Wright's Law. This is the Holy Grail of advocacy and legal rights of special needs children. The site, along with books, videos and many other resources are the work of Pete and Pam Wright. Pete is a special needs attorney and Pam is a psychotherapist.

Their website has information about anything and everything you need, but for my purposes, the case law regarding education was a lifesaver. I learned everything I could about FAPE (Free and Appropriate Education), IDEA (Individuals with Disabilities Education Act), more about IEPs than I ever knew and other critical parental protection rights.

I was armed and ready and it served me well. In the end, I decided to pull Ben out of public school because I thought it was in his best interest, but I fought for his rights and made sure the administration knew kids were slipping through the cracks and being misunderstood and unfairly punished for misbehavior that is a manifestation of their disability. This ruling and ability to have a Manifestation Determination Review (MDR) is something every parent facing any kind of issue with the school system should know inside out.

There are a lot of other laws and processes you should know if you don't already, including information about Functional Behavior Assessments (FBA) and Behavior Intervention Plans (BIP).

I'll be posting a list of other really great resources.

Aspergers and 4th Grade: Our Quicksilver (Part 2)

Second Grade. Things were still going ok. Again, the teachers he had knew he was on the spectrum, but also knew he was smart. They found ways to work with him, for example, he's an advanced reader, so in his reading class, his teacher would tell me, "he doesn't sit still and he doesn't make eye contact, but I know he's listening because when I call on him, even if he's looking out of the window, he answers and it's correct." The times where Ben started to get upset or act up were met with redirection or timeouts then.

But, we started to notice something. The transition from class to class became harder. Kids on the spectrum don't do well with transition typically, so this was no surprise. It became harder for him to regulate himself after he moved to a new room. So, they made accommodations, He stayed on the advanced reading track but in the same room as his other class. It worked...for a while.

Third Grade. This was the transition year after the divorce. Ben was placed in a co-teaching class with neurotypical kids and some who either had learning disabilities or were on the spectrum. I'd say that was about 20% of the class. The blessing that year came in his lead teacher. Her name is Carolyn Howard and she became our angel. A mom of five, I couldn't get over how much she took to Ben and understood and empathized with him. To this day, we are friends and I thank God she was his teacher and became part of his life. He loves her and she made an incredible impact on his life for one reason...she cared. A lot. Enough to attend autism conferences on her own time to learn more about teaching Ben. Enough that when we ran into trouble in fourth grade, she rallied for Ben.

There will be, or have been, these people in your child's lives. Cherish them. They are a gift. Carolyn and I learned a lot together. We figured out a lot as went. I'd learned so much about autism and how to deal with behaviors, anxiety, etc. The one thing I wasn't prepared for was the beginning of "the turn"...when social skills become the key to everything. Ah...social skills...stay tuned for more on this ever challenging issue!

Looking For Answers?

I know there are many blogs with great information about how to advocate for your special needs child. We are very blessed to have a lot of parents and therapists, doctors, etc., who just care, and thankfully write about it.

The thing I've heard time and again from everyone in my autism community, and over the years, that's what I came to know it as, is you must be your child's BEST advocate. People will say you need to advocate for your child and that will likely leave with a deer in the headlights expression and you saying, "Ummm....ok, what does that mean?"

It means reading, researching, doing your homework. Let's face it, none of us in this world have any excuse for not knowing better. If you're reading this, you have a computer or a smart phone. That means you have access to a search engine. At first I thought I should list a bunch of resources I've found over the years. But then, I thought...ok, parents of kids on the spectrum surely have searched the web for information. I've collected these sites and this insight by searching everything I could about Aspergers and autism and doing the homework myself. Any parent of a kid on the spectrum should do the same--no excuses. Eventually, I will post my favorites. Until then, use that awesome Google machine!

Aspergers and 4th Grade: Our Quicksilver (part 1)

I call it the quicksilver year because it's the year everything changed so rapidly. Although I believe there were many contributing factors, I ended up concluding it just happens. I got further proof this was an actuality when I decided to pull Ben out of public school to stop the suffering all around. I researched several schools and found one I thought was almost perfect. When I went to meet the headmaster I knew it was the one. I asked her why she started the school and she began to tell me the story of her son, who is on the spectrum. "Everything was going ok until fourth grade..." You can guess the rest. Something happens...particularly with boys. Social skills, friendships, anxiety...all factor in to what becomes "bad behavior".

Ben's 4th grade year:

Number of suspensions: 4
Number of days out of school: 12
Number of times I was called, texted, notified: too many
Number of days I nearly lost it: way too many

Up until 4th grade, Ben was coping ok. Well, from kindergarten to third grade, he was better than ok. He moved from inclusion preschool to a mainstreamed kindergarten class since he'd done so well academically and behaviorally. We were blessed with two amazing kindergarten teachers, a lead teacher who herself had a child with special needs and a parapro who was getting her degree in special ed at the time. It was magical. Ben thrived, had fun and had such a happy environment he learned so much.

First grade went fairly well, too. His teacher was a very calm and nurturing person. Although he did start to show some "behavior" issues and I use parentheses around behavior, because anyone with a child with Aspergers will tell you behavioral issues are a typically a manifestation of the spectrum. From an early age, I have tried to explain to everyone, from family members, to friends, to teachers (yes teachers), the difference between bad behavior and meltdowns, It's tough, because as I'm sure many parents will attest, you find yourself yelling at your own kid sometimes thinking "I know you know the difference." The thing is, they may. But, they may not be able to process or control their emotions at the moment. And, we know when anxiety kicks in, it makes it worse.

Divorce and Special Needs...Double Whammyism

Before I get into the real purpose of the blog...dealing with all of the monkey wrenches that come with adolescence and school...I should preface with another not so great factor: Ben's dad and I divorced along the way. Ben was going into third grade.

He'd been making such great progress. As I mentioned, he'd been almost completely mainstreamed at this point and discharged from speech therapy. He also had amazing teachers this year, one that I've since become friends with and who has become one of his biggest advocates. Still, something changed after the divorce. In my research, I attributed it to the change it routine, which we know affects our kids. Read more about the need for consistency and sameness of environment here.

Divorce just stinks and if you have special needs kids or not, unless you are the textbook, perfect parent and the inspiration for all "this is how you should act as a divorced mom" articles, you'll mess it up a few times.

While I want to focus primarily on school, my struggles with the school system opened a Pandora's Box of information that taught how "duped" I was in my own divorce. I made the mistake many women do and I wanted to stop the bleeding and just take the deal to get out. I'm smarter than that, and I regret it every day. Money aside, because I got screwed (or screwed myself) there, I didn't pay attention to the impact the initial custody agreement would have on my special needs child. Big mistake, that Ben and I both paid for. It took me almost two years of custody modification to right this wrong. I even took less child support than I was entitled to just so my ex would see the light in what was best for our son.

I have about three feet of files and research on this, which I will add eventually, but I encourage every parent to know their rights. Look at sights like this, which offer state-specific advice. And always remember, the educated parent is the best advocate!

The Motive. Part Two.

I've been wanting to start a blog about our experiences with autism and Aspergers since my son, Ben, was diagnosed at age two. He's 10 now. I should add right now that he, along with his older brother, are the loves of my life. His brother is neurotypical. The opposite in many ways--loves sports, is very mature,etc. And, while I love them both powerfully and equally, it's my Ben who has taught me so much about life and how to live. That's the gift these kids give us.

As many moms of kids with special needs do, I became his advocate on day one. I was alone, since my now ex-husband chose not to come when I went for the test results. I remember sitting in the doctor's office, trying to hold it together, wondering why he'd just handed my a box of tissue as he was stoically reading his test results. Autism. The word hit me like a brick. We knew he had a speech delay and sensory integration disorder. But, that diagnosis sealed the deal. I gathered all of the paperwork, all of the referrals for doctors, therapists, play groups, etc., and went out to my car and cried. Make that balled. For 20 minutes. I called my mom, who has since passed, and let it all out.

After the tears ended, I went to work. I began to researched everything I could. I've read countless books, went through training, attended every therapy--I'm guessing they are in the thousands now. I'm sure most moms reading this can relate.

The biggest problem I've encountered so far came last year. I considered myself relatively lucky as a parent of an HFA/ADHD (the dreaded 'co-morbid' syndrome). From pre-school on, Ben was placed where he should have been. Inclusion pre-school and pre-K prepped him well. Then, he went into an inclusion kindergarten class, and something magic happened. He thrived. He did so well, his teachers recommended less services. The next year, he did well again. Third grade presented some struggles as his dad and I divorced that year, but again, he had an amazing teacher that transcended most of that experience. Then came fourth grade. I did everything I could. I wrote countless background emails. Helped in the class when I could. Asked the teachers to speak to his third grade teacher. Nothing seemed to help. He got in trouble a lot. A LOT. He was suspended so many times I had to meet with a lawyer. I'll elaborate more on that later.

This is why Ben's school exists. This is why my friend and Ben's former OT does what she does. It's why Wright's Law was established and why the website and following has gained national acclaim. It's why parents need to be better equipped to fight for their kids. The term "slipped through the cracks" is becoming more prevalent with our kids and public school. We're fixing the cracks a bit at a time.

The Motive

I was surprisingly reminded this week of why I started this blog--one I've been meaning to start for a long time. Ben had a refresher SCUBA (read more here about the benefits of SCUBA for HFA kids) class tonight, and he ended up being in the class with one of his new schoolmates from his new school, Cumberland Academy in Sandy Springs, GA. It's a small school we were incredibly blessed to find this year that specializes in teaching kids with Aspergers and ADHD.

At the beginning of the class, I hear this exchange:
Ben: "Nicholas!"
Nicholas: "Ben! Oh my Gosh!"

And they explained to the SCUBA instructor (stay tuned for another post on this phenomenon) how they know each other from their new school. I hear this across the pool and I'm beaming. Not only does my son have a friend who enjoys his favorite new pastime, he clearly has some of the same challenges as Ben. I immediately looked around for Nicholas's parents so I can commiserate. I met his dad at the end of the class and we began talking about why we chose Cumberland: Things changed at age 9...teachers couldn't figure it out...he was getting in trouble for things he couldn't control..social skills were causing behavior issues. Sound familiar?

This blog's primary purpose is to help the parents and kids In the Meantime. The title of the blog comes from the song, but was inspired from a church service I attended recently that talked about what to do In the Meantime. When things aren't going as planned. When you feel stuck and helpless. We have had a lot of ups and downs in our journey with Ben. Last year was a big down in school. It led me on a journey in which I learned a lot. I hope to share all of that information here.
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