have soapbox, will travel …


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“She packed up her potential and all she had learned, grabbed a cute pair of shoes and headed out to change a few things.”

~ The cover of my all time favorite notebook, by Curly Girl Designs

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“Babe, if six months ago someone had come up to me and told me that in six months I’d be discussing with my wife her upcoming engagements at the White House and then Harvard – all within a week no less – you know what I’d say?”

“What?”

“Um, have you met us?”

~ Luau and I talking last week

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Just when you thought it was safe to go back in the water, here I am again! Yup, today is a Diary Double Feature kinda day, my friends.

Why? Well, because tomorrow afternoon I’ll be heaving my soapbox over my shoulder again, putting on my favorite pair of shoes and heading to Harvard. As hard as it may be to believe, they actually invited me to speak. Mom, stop laughing, I’m not kidding. Sheesh, you’d think maybe that whole White House thing would get a girl some credibility around here.

Anyway, I am honored to be serving on a panel of autism advocates as part of Harvard’s efforts to raise awareness. Along with Dr Stephen Shore and the other panelists including a Harvard student and her sister, I will be addressing students and faculty at the Harvard Graduate School of Education.

So here’s where you come in.

What, you thought I would do this without you? Not a chance. 

What would YOU say to the educators of tomorrow? What do YOU want the next generation of teachers, inclusion specialists, general and special educators and administrators to know about our kids? What works? What doesn’t? What do they need to know before they ever set foot in a classroom? And what do they need to know thereafter?

The floor is yours.

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78 thoughts on “have soapbox, will travel …

  1. For Harvard Educators: Know what you do not know. Educators should be collaborators not experts, so always seek out another set of eyes and alternative strategies with kids.

  2. this is what i see as the biggest education issue – Its a fact that our children do not do well with social cues, facial expressions, voice fluctuations all those things that come with regular conversation. They avoid it if at all possible. But schools continually teach our children by placing a teacher in front of them TALKING/giving verbal instructions! I believe our children learn quicker when using more advanced technology. Even if no other class uses ipads, if it works they need to go for it. Some schools scoff at so much computer time but darn it, if it works, it works! dont be afraid to go outside the box and teach in a way these kids “get it”. -and good luck to ya tomorrow!L)

  3. I believe that every teacher should have inculsion training from someone who is qualified to teach it. That goes for all children with any sort of academic challenges. It should be federal law, that before a special needs child steps into a general education classroom, the teacher should have inclusion training. Now vote for me for congress LOL :)

    • Erika – you took the words right out of my mouth. Every single person in the school impacts our children – let’s make sure it’s a positive impact. Understanding, awareness, compassion, academic strategies are not necessary for the SpEd teachers alone – they are necessary for everyone educating any child.

  4. That every child is different. There is no cookie cutter approach to kids on the spectrum. Get to know and understand the child as a whole, not just as the pieces of their diagnosis. Our kids are ever changing so what worked last week or yesterday might not work today, so be open to working with the student as an individual. Find their strengths.

    And by all means, truly love and understand our kids. As parents, we can sense a burnt out or tired teacher a mile away.

    • Yep, definitely what she said AND even more than the parent will notice, the ASD child’s radar will hyper-aware of a burnt out teacher and whatever that teachers attitude is toward the child, the child’s parents and probably any other baggage they bring.

  5. Please let them know that our kids grow up and won’t be in school forever, so I hope the future teachers understand that time is not infinite when we are planning what our children need to know and when they will learn it in order to function in the real world.
    Thank you from the bottom of my heart.

  6. From the perspective of those future educators you will speak to (especially general education teacher), give them resources to turn to when the questions come. Ideas and strategies won’t make sense until these individuals are faced with children in the classroom. Having resources to pull from makes all the difference.

  7. It really seems that touch screen devices like the ipad can get through to my son in ways nothing else can. We bought him a tablet over a year ago and now all of a sudden, we found out that he knows all of his numbers up to 100, all of his letters, and even knows which letters make most sounds… so I can say from experience that they have served as a tool to help him further reach his potential.

  8. Demand more of yourself. Allow yourself to really feel our children’s pain and marvel at what gives them pleasure (because it really is awe-inspiring). Engage even when you think you aren’t being heard … you never know if YOU might hold a key that transforms a life.

  9. Okay, Jess, now you are asking about something personal on every level for me, as a mother of a child with autism and as an educator deeply concerned about the future of education. Let me tell you a few things that I think every future teacher must know. First, a child’s experience of school comes down to their experience with the educators who protect and nurture and inspire them. PERIOD. You might have heard it’s about money or about test scores or about curriculum choices like Singapore math versus something else, and that is all worth care and concern, but a child’s experience with school is framed, contextualized, informed, and made meaningful by the adults. Teachers are everything. And that is not about their power, it is about their responsibility and obligation, not just to that child, but to the community. Because, second, and this is huge, a teacher doesn’t just serve a child. A teacher serves a family. The home-school connection cannot possibly be overstated. It’s important in terms of meaningful learning, community building, and making an impact on the future. Special needs families deserve a great deal of respect and they deserve to be heard. And let me say this as loudly as I can in typed text: EVERY CHILD HAS SPECIAL NEEDS. And so does every adult. Learning needs are special, they are unique, they are as diverse as, you guessed it, a broad spectrum, a rainbow….we all have gifts, areas of challenge, ways we thrive and ways we struggle, approaches we prefer and things that bore us, and countless other variations… Differentiation is NOT a strategy. It is teaching. Okay, so it bears repeating: teachers determine a child’s experience in school; teachers serve families, not just kids, and everyone has special needs. This is at the very core of what teachers must internalize. So much else cannot come from a text, a blog, a list, or a rant even by yours truly. Teachers need to realize that all the guides in the world won’t give them all the answers, because teaching resembles parenting in so many ways, and it takes hands-on experience, patience, listening to others who have more experience, and listening to your gut and your instincts. Like parenting, teaching means never giving up, searching for creative solutions, looking for community (the best way I know how is through teacher PLNs, or personal learning networks), and focusing on love. The world is a teacher’s classroom, and the Internet is an invaluable tool. Jess, your blog, A Diary of A Mom, is ample proof of that. And, Jess, teachers need to know that autism is important in schools, in families, in the community, and in the world — it’s something more and more people are experiencing, and we all need to learn more about it. It’s not something to hide in a dark corner and pretend does not exist. Autism brings challenges and opportunities. It is not a curse or a death sentence. It is not ONE thing, which is where the spectrum idea comes into play. And people who have autism are just as deserving of inclusion, empathy and respect as anyone else.
    That is where I would begin if I had the chance to talk to those future educators at Harvard.
    I think. That was just off the top of my head and heart because I started this comment the moment I read your post. I am sure you will take some time and come up with something much more articulate and clear.
    Knock ‘em dead, sista.

    • Holy Schmoley! I totally love every word of what you wrote, and am pinching it for my own. You have lucky kids, madam, and I hope their parents know it. And any of your own brood, well, lucky too!

    • Nicely said ghkcole! I was reading and wondering if you know about a program called Skills4America? The Center for Autism and Related Disorders has taken the curriculum that has been helping kids for over 20 years and put it on line. They are giving it and their online training to schools for the rest of 2011 for free. This is the curriculum that helped my son go from being nonverbal to being at grade level in a typical classroom. I dream of a world where every teacher has these tools. This year it’s free. But schools need to ask for it at http://www.skills4america.com As an educator I would love to know what you think of it.

  10. Remember as an educator you are embedding yourself into our community. We need your support, and I believe strongly that you need ours. We need to be united in our vision and our goal, or there is a very limited chance that this will work! Please be a part of the unity that makes up our community!

  11. You may also think of this in regards to my last comment… Communication Unity is what makes a community work!

  12. Okay, believe it or not, I’m back. It’s been a whole 2 minutes so I have more to say. Education in the 21st century is not like Little House with the lady at front of the room passing wisdom to each child in the neat rows in her schoolhouse. Life is complicated, and kids come to school with a slew of 21st century challenges, experiences, talents, and knowledge. For better or for worse, teaching today means preparing kids for a future that less and less resembles the past, and before that it means meeting kids where they are, even if every single child in the room comes from vastly different starting points. Teachers do not teach subjects, teachers teach children. Teachers that succeed the best, in my opinion, operate a bit like detectives trying to look for clues about all kids to know them better and figure out how to serve them best. Kids with autism might not give the most obvious or most predictable clues, at first, but they do give clues. Teachers need to be listening and looking for the clues, and they need to be ready to respond with tools — books, resources, manipulatives, computers, experts, sensory aids, schedules — that best help each child learn, grow, thrive, develop, and experience happiness. Teaching is not what I think of as a day job, something you leave at the end of the day and think of no more. It’s not for the squeamish or the diva or the weak. But it’s a gift and a joy and a privilege.

  13. That our children are not acting the way they are because it is a “learned behavior”, or “lack of discipline”.(exact quotes from teachers about their students with AS). That they are trying as hard as they can, and they just experience the world differently than others. From my own experience with my child, and working with other children on the spectrum, they need to know that you love them in order to bond with you and when they do, they will want to please you, and will be better students. I have a million things I want to say to educators, but I plan to do many in-services to share information and facilitate understanding.

  14. Sorry I haven’t read the other comments so I may be repeating — but I would make sure schools have a component of helping the children’s peers understand autism and how to accommodate the students with autism in their midst and help everyone understand.

  15. I am an intervention specialist who mainly serves students in 4th and 5th grades. This is my 13th year of teaching. I would like to see ALL future educators be required to not only take special education coursework but get out in the field and work with students with disabilities. I would like to see the idea of special education evolve from this all or nothing state that it seems to be in. Inclusion is GREAT for SOME kids. Resource room support is GREAT for SOME kids. Students who do not qualify for special education services can often THRIVE if they can be taught in a different way, which SOMETIMES means that they will benefit from exactly the same assistance an identified student needs. I continually strive to find their strengths, their weaknesses and their “triggers”. I emphasize their strength, I target their weaknesses to get improvement, and I work very hard at teaching the students to not let their “triggers” control them. I’m “that teacher” who fights tooth and nail to serve the students in whatever manner works best. I’m “that teacher” that just can’t seem to put my foot down and say no when there is one more child that needs help and my room is already too full. I’m “that teacher” who sees beyond the label. My classroom might not be doing inclusion, but I am serving a wide range of students and teaching grade level curriculum. My classroom is made up of students with and without IEPs. I work my students until they feel like their brains might start sending smoke out of their ears, but I promise them that I will NEVER give them something they can not do and I will NEVER let another person make them feel like they are less than anybody else. This year I did the “unthinkable”. I took a kindergarten student with autism into my 4th grade reading class. The kindergartner can read circles around many of my 4th graders. I had nothing to do with getting him to read. He came to me knowing all that. But throughout the year I did teach him to sit in his seat at appropriate times. I taught him that sometimes you have to do repeated readings when you are in a reading group and it’s not the end of the world if you have to read something again. I taught him that taking turns with others is the way things are done in the classroom. I taught him that throwing a tantrum was not going to get him out of doing something he didn’t like. I taught him the readiness skills he will need to move from a special education classroom to a typical classroom, which should be possible next year. Things like that are NOT in the curriculum. Things like that are NOT on State Achievement Assessments. The growth that these students make doesn’t show up on the all important test, but it makes all the difference in the world. Tell those future educators to trust their instincts, help every kid they possibly can, and work on things that are essential for each student even though they won’t be tested on it. Unfortunately, merit pay might be tied to that all important test which is a whole different rant that could take place. :(

  16. Just to reiterate that our kids can learn ….and just like typical children. The component is affording them another chance at mastering those developmental milestones that they missed as a baby….. They missed out on all that social practice…so just trying to get them to behave only increases their frustration. To work on autism at the root of the issue, and watch development unfold to recovery. Our kids are not different, just lacking those first crucial joint attention milestones…give them the tools and watch them exceed what the *world* says they can do…or how far they can come! Stop trying to *get* them to act a certain way, but instead realize that relationships trickle down into every aspect of living!!
    Kathy
    RDI4ASD@gmail.com

  17. I would add to the educators, and I am sure I am paraphrasing someone, that if you’ve met one child with autism… you have met one child.

  18. I can’t laugh, I’m too busy bursting with pride at my amazing daughter (that would be you). Go get them. Educate those future educators!

    I love you,
    Mom

  19. I want them to know that ASD is NOT a ‘one size fits all’ diagnosis. Every single child is different. That what works for one, may or may not work for another. In fact, what works for them one day, may very well crash and burn the next- with the same kid. That perfume and cologne should NOT be worn around SPD kids.
    EVER. It could cause them physical pain and impeed learning completely. I want them to learn that we may seem overprotective as parents, bit that’s because everydamnwhere we go we run smack into walls and barriers and t what we have come to expect. I want them to know that our kids will pose he greatest professional and possibly personal challenges BUT- they will also
    provide those same professionals with the greatest rewards. I want them to know that the good ones should be paid ten thousand times more than they will be and that the worst teachers will be paid the same. Dedicate yourself to do the absolute BEST you can anyway. I want them to k ow that the future of OUR ENTIRE world lies with them. Not just in WHAT they teach OUR kids, but from wha they teach OTHERS – about respect, and compassion, and honesty, and kindness, and dedication, and perservierance, and since it bears repeating- RESPECT. Respect towards ou kids, their parents, and one another because while they may not seem like thy are, our kids are taking in and processing every single thing that is happening around them from what they hear to what they see. Every sense IS engaged, it is how the brain processes that information that is so different. So, that kid who seems to not understand a word you say, or who can’t speak? THAT kid may just be the smartest damn person they will ever meet. And if they are taking on a job as an educator, it’s up to them to draw that genius out. To make sure that the children we entrust them with are accepted and respected for whom they are as
    individuals. It’s probably one of the world’s most difficult, underpaid jobs out there, but it is unquestionably THE most important job in the world.
    And wish them the best of luck for me too. Because I believe in them. I have to. I have to believe that they, who will hold our children by the hand for 7 hours a day, will treat them with all of he kindness and devotion they deserve.
    They are my hope for all of our futures.

  20. I would tell them to open up their minds, hearts, eyes and classrooms. When teachers and therapist work together it is for the kids! As a private therapist I love bounching ideas off teachers. As a mom I what everyone to work as a team! We should ALL be working together.

    I would also tell them that at least one of our kids will unknowingly walk into their hearts. They will be forever changed and they too will learn to celebrate a look, a sound or a touch. They may teach our kids by along they way our kids will teach them too!

  21. I need them to understand that when an autistic child gets frusterated they cannot always use their words. It needs to be common knowledge that a reaction from one of our kids could come without reason, meaning that they might hit a child because they are too close. It is a reaction, they are not being a bully. Most importantly our children need to be seen, acknowledge them when they do good as well as bad and never ever under estimate them. They are brilliant, funny, inpirational, and most of they are children that need to be loved. Except their differences, learn how to make the classroom an easier place for them, a safe place. Stop asking them to pay attention, focus, or sit still, they can’t, they learn different than most children do.
    The biggest thing as a parent that I want them to know is that all teaching staff should be required to take training just as the IEP teachers do. If this is a requirement then the classroom will always be a safe haven in which our children will excel.
    You are an amazing woman whose passion will draw them in and they will listen, they will hear, because you won’t let them leave until they get it. Please know that we are all standing there with you in spirit waving our pompoms and cheering you on! Thank you once again for everything.

  22. Maybe pass on a quote from Hans Asperger in 1944.
    “These children often show a surprising sensitivity to the personality of the teacher.
    They can be taught but only by those who give them true understanding and affection, people who show kindness towards them and yes, humor.
    The teacher’s underlying attitude influences, involuntary and unconciously, the mood and behaviour of the child”

    and obviously, “Different but not less”.
    Eva

    • What a great quote! And how true for my son. He responds best to those who embrace him as he is: quirky, fun-loving, smart, sweet and mischievous. The “odd” behavior you see is often an effort to engage, and the teachers who recognize it and respond accordingly will receive unimaginable joy in the connection.

      • It certainly resonates with me as my son has always flourished when the teacher has had his interests at heart.
        He has only had one bad year which was last year when he was a “burden” to a couple of his teachers. We are still working through the after effects of that with a brilliant teacher this year.
        A fantastic teacher he had amongst all the disaster of last year said “all kids are different, his differences are a little more obvious but he is such an amazing child” and she and only she was rewarded at the end of the year when on the last day he fumbled his hands, peaked out from under his cap and looked directly at her and said as clear as a bell “I’m going to miss you”. She must have been the only bright spot in a horrid year because he had never ever said anything like that to ANYBODY. I am still a mess of tears when I think of that.

        Teachers who want the kids in their class to succeed will have children that succeed, those teachers that think it is all about them, will have children that will fail and this doesn’t just relate to ASD kids but I think it is multiplied with an ASD child – they can tell!
        Eva

  23. They should keep the parents in the loop, even if they don’t feel like there’s anything to talk about. When you have a non-verbal child, you have NO idea what he’s been doing all day.

  24. I am a teacher. Well, I was a teacher until I became a full-time mother advocate.

    What was missing from my teaching program at a very prestigious university in Boston was awareness. Plain and simple. I realize that it was another time and place, but the missing piece of my education puzzle really set so many of us as educators up for failure because our kids have always been attending school, but our schools and teachers were never, and many continue to not be, prepared for handling autism.

    When I was in school, autism had a singular blurb in a text book (that I still own by the way) that was used in the 100 level course about Special Ed that everyone has to take. So, what was missing for me was well, everything.

    Fortunately for me I had some experience babysitting a little boy with Asperger’s during my senior year in college. That opened up a lot for me later in my teaching career but I didn’t know it at the time.

    I had been teaching as a general education classroom teacher in the upper grades (4-6) for 5 years when I met David. He was assigned to my 4th grade class. On the first day of school, I quickly deduced two things about David: he was incredibly bright, and boy did he march to the beat of his own drum. At the time, I had no idea that David had Asperger’s. In fact, no one knew. No previous teachers, nor the school counselors, nor his parents had questioned the possibility of an autism diagnosis. Sure they knew that David had some differences, anyone with half a brain could see that, but they chalked it up to other things.

    He’s just too smart. He’s just a little different. He just blows things out of proportion. He’s just not challenged enough. He’s just not disciplined enough. He’s just not organized.

    No one knew to wonder if David had Asperger’s, because no one knew what Asperger’s was, not even the professionals at the school. I didn’t know to wonder either, at least not yet.

    You see by the time that most children reach the upper grades, any children with special needs, learning disabilities, etc. have typically been identified and assigned some intervention or other. The greater the need of the child, the easier to identify and intervene, but children with Asperger’s oftentimes slip through the cracks because they are so darned smart. That certainly was the case with David.

    That year, David changed my world.

    He was the most intelligent and challenging student I have worked with to date. Honestly.

    David would become easily frustrated and bored in class. He did not find purpose in school in the sense that he understood and knew the way that many adults do, that school in many ways is an exercise in learning to be obedient. David didn’t buy into that. He was smarter than most of his teachers, and he knew it. At 10 he deduced that school was a game of hoop jumping that one goes through until the end result is achieved: a diploma. David wasn’t buying into the hoops because he knew that he was far more intelligent than the content of the grade level and thought that if he had mastery of the grade level content through 12th grade (and quite honestly in many ways he did) that he shouldn’t have to go through the motions. It was a tremendous challenge.

    On the playground David found himself in daily arguments based upon both real and perceived teasing. He just couldn’t relate to the kids and they had stopped trying by then because everything they said was met with a rebuttal or a torrid rant on dinosaurs.

    David would often meltdown in class when asked to perform even the littlest thing. He found everything menial, even the individualized “challenge” work and projects that I worked feverishly after school to create. So, David would often ask to see the counselor to rehash issues that he had at recess.

    After a few months, I found myself getting nowhere with him. I was in constant contact with his parents, but they weren’t very helpful. I met with the counselors on a daily basis and we devised plans of attack together. Nothing seemed to work. We were going nowhere fast, and I still had 29 other students to teach in the class. Students that genuinely needed my teaching. I felt defeated.

    One day one of my administrators wrote in my professional journal while observing one of my lessons, something like, ” I see David is not engaged in the lesson. He is looking up at the ceiling. What are you doing about this?”

    I wanted to scream. I was trying to DO everything that I could think of, but this “challenging kid” was not responding to my interventions, nor to the counselors. And then in that moment, some epiphany hit me like a bolt of lightening.

    I remembered the little boy that I cared for. I remembered babysitting his brothers after school while his mom shuttled him to various therapies.

    And then I knew. It all made so much sense, I just hadn’t seen it before.

    Later that day I went to talk to that administrator about what he had written. We talked about David. I told him that I was going to look into the research on autism.

    A baffled and utterly perplexed look came across his face.

    “Sure David’s a little different, but he’s not autistic. He just marches to the beat of his own drum.”

    I read bits here and there, but didn’t really find much in the way of helping David because the interventions hadn’t been written about yet. I found various ways of getting David to comply in class and I worked hard to build him up, but I felt largely unsuccessful because I didn’t feel like I had taught him anything in the course of the year, even though he scored perfect scores on the standardized tests again. I just felt like I hadn’t made a difference with him. It plagued me. Eventually the year ended and David moved on to the next grade.

    During the next school year, the school psychologist asked me what I thought about David. Apparently his defiant behaviors had grown and he was really clashing with his new teacher. I felt comfort in the fact that at least David loved me. That was clear. He had wanted to spend every waking moment with me. But over the course of a few months, his behaviors had escalated to a point where they call in the specialists.

    My response to that psychologist was simple.

    “David has Asperger’s.”

    I thought that her jaw hit the floor. Literally. Apparently she had been recently been learning about it and had deduced the same thing. The only thing she asked was, “How did you know that?”

    And that was David.

    ************

    So, I think what I would say to teachers as they embark upon their careers is this:

    Know the signs of autism. Look for them. There will be children that enter your classroom that do not have a diagnosis, but should. Advocate for them. Intervene. Trust your gut. Ask for support. KNOW that no one will criticize you for not knowing all of the answers. It takes an incredible amount of character to ask for help, but these kids need us. They need us to get it right, because their time is precious. And they are worth it.

  25. Q: What should parents of “typical” children teach them about children who have autism?
    TW: Those with Autism are like foreign exchange students. Some may not read write speak or understand our way of life. Some may have learn language but not customs. Some blend in perfectly. It is the spectrum of life. There is nothing to be afraid of. Autism, provides a beautiful platform to teach the diversity of our world.
    Now I also want parents to teach their children that Autism is not the new normal. We did not know about Autism 20 years ago. Many still do not know about Autism today. If your child is a little older, I would ask you to ask them to find a family, learn about them, and advocate for them. Also advocate for our environment. The food, air, water are all impacting our health.

  26. More thoughts because I can’t stop thinking about this…
    Every behavior is a form of communication. An educator needs to figure out what the child is communicating.
    I once heard Robert Evans say a few important things, including “Fair is not giving every child the same thing. Fair means giving each child what he or she needs.” He also said to remember a child IS NOT a problem, though a child might HAVE a problem.
    Finally, at least for right now (ahem, yes, it’s my third comment so far), research supports my firm conviction that ALL children benefit from heterogeneous classrooms in which children who have, for lack of a better term, “special needs” are fully included. Our world is diverse, and students benefit when our classrooms mirror our world. All the children benefit, in terms of academics, social development, empathy development, communication, collaboration… everything you want for kids.

  27. I am a home mom now, but I used to teach. First, I would tell future Sped teachers, “Thank you.” Then I would tell them that what they need to know cannot be learned at Harvard. They need to get the big picture. I suggest spending time with pediatric OTs, private speech paths, find families to child care for, talk with parents. But mostly, spend quality time with children with ASD outside the classroom. This is essential.

    I think these future teachers need to know that many asd families find dealing with the educational system to be one of the toughest struggles they face in having a child on the spectrum. Imagine that for a minute. You are raising a special needs child and the hardest part is finding quality education for him/her. That needs to change. How are they going to make that happen?

  28. Hi Jess….I just want to first thank you from the bottom of my heart for Diary of a Mom. I look forward to your posts for I feel like I have this person on my computer who truely and honestly understands. THANK YOU~

    I apologize if I repeat some things that have already been said. Some things that I would share would be the importance of having teachers, aides, principals and directors of special education trained in Autism Spectrum Disorders. The importance of having the teachers and aides trained BEFORE they enter the classroom and not have an approach of “learn as you go.” The importance of having social skills training an important part of our children’s education. That the school staff would have trained aides and teachers out on the playground with our children to help facilitate social interactions. Encourage friendships….Encourage social interaction. Guide and direct our kids…..teach them about body language, facial cues and social space. That mainstream teachers would be trained in full inclusion so they would not be afraid of it. The importance of school/home communication from the teachers. That teachers who are placed in a classroom with our children again, would be properly trained but also someone who has a compassion for our children. Not someone who looks at our children like their strange and responds to them in that matter. Our children sense that. I know they do. My heart breaks to say this, but unfortunately our children will get enough of that in our world we live in…..they don’t need it at their school. I would share the importance of teaching the other mainstream children about our kids. So that early on they have an awareness, understanding and acceptance.

    Thank you so much for all you do for our children. You are an amazing mom and an amazing women! Thank you!!!!!!

  29. Know that some kids work really hard at holding it all together and trying to learn and process and have a clue what is being asked. My daughter is exhausted by lunch time. Don’t expect her to be able to function in the afternoon, or by Friday. Homework may or may not happen, but not because we didn’t try.

    And while she can tell time, she has little real concept of time – she counts sleeps (instead of days) and seconds (just like Special Agent Osso). She doesn’t get tomorrow or this afternoon, she gets after one sleep and after lunch.

    Guess I’m trying to say that they need to know that the less verbal child may be trying to communicate if YOU can understand/translate what they are saying. Even her scripting usually has something to do with what is going on around her – LISTEN to her. She doesn’t always have the words to describe what she feels or is thinking, so listen and then try offering her words that might fit her feelings. When she was in kindergarden she said that she was “scared to go to school”. I asked it it was inside or outside – she replied “inside and outside”. Well, was her teacher scary or something else? “Friends.” Your friends are scary? “Yes.” How are they scary? She gave me a big bear hug. So, your friends are scary when they hug you? “Yes!” When I talked to the teacher, she told me that the kids all loved hugging her and that she never told them to stop or back off. Well, duh, she’s not good that. So, the teacher talked to the students and told them that they needed to ask before hugging and not to hug too tight.

    Also, know that most of us parents are working 24/7/365/infinity to help our kids. Do not assume that we aren’t trying. Do not assume that we are not capable of helping our children. Maybe you haven’t learned that you may have to tell our child something 2000 times before they “get” it. Maybe you don’t know how tired we are from constant vigilance and a child that was up 3 hours before my alarm will go off and I need to keep her quiet so that the other family members can sleep.

    Know that our kids think outside the box. They view things differently. Just because they don’t conform to the norm does not make them wrong. Try to look at things from their perspective sometimes.

  30. What they all said! My big recommendation is to step outside the “research-based practices” every now and then and try something that you think might help. Please don’t limit yourself to only “proven” techniques–sure, use them as guides, then take a risk and do something that feels right because you know this child and what he/she loves. You can be the innovator! We parents need you to be creative in our child’s education…we really do need partners because we are often struggling with the day-to-day business of raising a child on the spectrum. Help us to help you by asking us everything you can think of to get to know our child better. In return, you’ll get not just a child who loves you, but an entire family who loves you.

  31. Surprise, me again.
    New teachers often feel the pressures of the mandates they are given by the school, the the district, the standards. They can feel like they have an agenda they must accomplish. When they have students with autism, they need to realize that the student’s family might have a very different agenda. They might care a heck of a lot less if their child can get as many math facts as the other kids in the room than they care if their child can learn to make a friend, feel safe during a fire drill, express frustration in a calm way, etc. Those agendas are valid! Parents want teachers who can help the whole child, and not help them “fit in” but help them be themselves, happily.
    Also, all new teachers should have to read about the horrible, heartbreaking mistakes teachers have made when they have humiliated kids in their classroom for having autism. All teachers should learn better than to try to vote a kid out of a classroom or otherwise isolate, ostracize, or demoralize a child. Not only is that kind of bullying wrong and shameful, it’s unprofessional, potentially illegal, and hopefully career-destroying.

  32. I think the true educator for kids, parents, siblings, caregivers, and families living with autism will be us, and us alone. Maybe we can meet our goverments half way and get this thing rolling! What I have learned this past month is that the help we get for are children varies depending on where we live.Our families need a way of communicating, and we are all part of this wonderful, thriving, unique, abstract, social community we call ASD.My daughter has been in Intensive Behavioural Intervention therapy for the last two years and as Iknow it is the only scientific proven effective treatment for children and their families living with autism.If I hadn’t seen and been a part of it i never would have beleived it.To our goverments the challenge will be to put as many of us through college to be trained in IBI and ABA therapys.No charge!In return we provide therapy to other families living on the spectrum, we become more consistent across borders and provide constant learning for our loved one’s when all the help we get now is gone. I’m from Ontario , Canada, and the college close to me offers a Autism and Behaviour Science Graduate Certificate program.This is a third year program after completion of a degree in Educational Assistant, Developemental Social Worker, or Early Childhood Educator.Can we afford to leave this in someone else’s hands or do we half to step up.Your going to be doing it anyway and you will be filling a great need in our community.

  33. Share this blog post with them: http://georgecouros.ca/blog/archives/1180

    Tell them that when they make their classroom rules, remember the crucial importance of a welcoming classroom culture. It is not about “tolerance.” No one wants to be “tolerated.” It is about welcoming all people. Tell them to have a zero tolerance policy for the R word. Tell them about toasters and hair dryers and MOM-NOS.

    There is so much you need to tell them, Jess! Because teachers are like surrogate parents in some ways. As a parent to my boy who has autism, I feel like I have very few allies but I sure wish I could count my kid’s teacher among them. So far, that has not happened, and that is a huge shame.

    • A few weeks ago, during Writing Workshop, we were working on Fierce Wonderings and Writing that Scrapes the Heart…one of the kids wrote that after I shared MOM-NOS’s story about our classroom last year and how we had the same chance to celebrate differences in our room this year, he has yet to make toast for breakfast at home without thinking of the hairdryers we know and love at school :)

      Have I mentioned how much I love my job??

  34. Jess,
    I second all of the comments, but especially A. K. Butler’s #9 and Cee Cee’s #26. We recently had a problem with a teacher who thought she knew how to help children on the autism spectrum. In the process, she refused to listen to us or to take into account that past bullying also affected this situation. Our daughter shut down as a result.

    Please remind them that they have a responsibility to help our children and judging them does not help anyone. Remind them that they have a choice to be an inspiration or a detriment to our most vulnerable children. Advise them that even when our children are teenagers they might not be able to write from the perspective of a typical teenager and asking them to do so is ludicrous especially if a simple change in the assignment can avoid problems. Please beg them to assume the best rather than the worse about our children and to be aware that other things besides the class itself may affect our child’s ability to complete an assignment. Wrong assumptions can and do harm our children.

  35. Wow! Ditto what everyone said above!!! Options, understanding, compassion! Learn to really “see” our kids! Certainly more training and experience for general ed. teachers in the special ed. area! Really, aren’t ALL kids special? How cool would it be if “special education” was for EVERYONE?!?!

    Again, Jess, I thank you from the bottom of my heart!!!

  36. Pingback: Neurodiversity: The New Typical « A Chameleon's Blog

  37. If you’re not learning something everyday you’re in the classroom, you’re probably a bad teacher:

    Listen. Watch. Learn.

  38. You have gotten a lot of great information from so many people. I will just add a few things. Remind them that parents want it to work. Use them and keep them in the loop…so important when your child is non verbal to at least have a clue as to what is going on in the classroom as well as giving the teachers what they need to know about your child…often on a daily basis. Remember that parents of kids with autism want them to be happy..we take joy in little achievements that are really big for us…tell us about them.
    When J started in the regular elementary school back in 1991 we had the best principal…she believed our kids should be included in everything and only removed if absolutely necessary. The teacher had a buddy program that she still does to this day…it was a badge of honor for the regular kids to be involved. She went around to each class and explained autism to the kids so they would know what to expect. Fear of the unknown is the biggest problem for our kids when they are being included.
    I taught PE for many years and was very disappointed in the way my school district included kids. For instance they held HS graduation for them at the rehearsal instead of on the actual day…YUK. My son walked in every graduation with his class and we really appreciated that.
    Remember that everyone in the school is part of our children’s lives. Reach out to all in the school community.
    Most of all, Jess enjoy the day. We are all so thankful for you, not to mention proud of the way you are carrying our message!!!

  39. Wow. Just seeing this and have Justin roaming around downstairs, so will make it quick. As a mom, therapist and former teacher, the most important thing that teachers (as well as students) need is for their instructors to have specific training in autism before they enter the classroom, not just that special ed degree/certificate. Would love to see that mandatory in all 50 states. Something for all of us to work on in our spare time… Have to run, best of luck to you, you are on a roll!

  40. Many terrific comments here already. One thought to share – many of your audience members will be teachers and many will become administrators or those who shape legislation and public policy regarding special education. To their ears, I share the story of a woman who told me that she had gotten her teaching certificate in severe special needs because she was unable, after several attempts, to pass the MTEL (Massachusetts licensure)in moderate special needs. The requirements were actually LOWER for severe special needs licensure. This is one reason why the system is broken. We actually need the best and the brightest teachers recruited for the special needs students, not those who could not meet the license requirements. So please tell the future policy writers, administrators, and faculty to re-think how teachers are recruited, trained and licensed!

  41. I hope I’m not too late!

    1. Don’t be afraid to gently challenge my child to learn.
    2. Think outside the box, because my kid dosen’t fit into any standard box.
    3. Understand that obsession isn’t short term; it’s a pitbull locked onto my interest/fear/focus.
    4. Communicate with parents & caregivers & other teachers. If you don’t understand, ask questions.
    5. Seek learning opportunities. I know teachers are overworked, so am I, and I’m expected to learn more about my job every day.

    Good Luck!

  42. Wow, so many amazingly thoughtful, insightful and informed comments. My quick two cents based on our experiences:

    Do not lower your expectations for my ASD child…but be prepared for a bit of trial and error to help make sure the child can meet them.

    Be willing to listen to and collaborate with parents/family. Make an effort to provide detailed glimpses into my child’s day on occasion — we hang on to every tidbit we can get!

    Notice and nurture my ASD child’s strengths. Even a seemingly offhand comment or bit of praise can go a long, long way in boosting my child’s confidence and opening his peer’s eyes to the potential friend behind the quirks.

    Take full advantage of the other professionals on my child’s team and enjoy an ongoing give-and-take with them — every area connects and reinforces the other.

    Tell them they are to be commended for aspiring to be teachers — it is in my opinion one of the most important jobs in the world. It kills me that the recognition appreciation and compensation just doesn’t measure up to the amazing things that are happening in schools today. Knock ‘em dead Jess!

  43. Okay, I know this is down to the wire, but I have more.
    The professional development collection at my school has many resources about autism. Plenty of them are wrong, outdated, and painful to me. There are books a decade old with crazily inaccurate numbers,and some that say kids like mine are unlikely to say I love you or have a job. Sure, that can be the reality for some, but I believe that paints a misleading picture for too many. This is a time of learning about autism, and not a time for certainty, but do not believe anything that tells you to give up hope or to discount the possibilities.
    Also, autism is a disorder — out of order can mean that development can be in fits and starts, and can suddenly blossom when you didn’t expect it. I don’t know how much I believe in “experts” on autism, unless they are parents.
    Finally, Google has a model I like. When they teach you something, they call themselves the “lead learner” instead of the teacher. Teachers should be learners first and foremost. The most important thing any teacher ever does, in my opinion, is learn. Learn from, with, about, beside, and for children, and you will be a great teacher. Inspire them to do the same, and you will be an excellent member of the community.

  44. Jess, you’ve got a lot of great comments here to consider. I’d add only this. Most everything a teacher does to “accommodate” a kid with special needs will benefit every student in their class. Visual cues? Check. Alternate testing? Check. Social support? Check. You get it. Not every teacher can implement every strategy for every kid, but the point is that the neurological range is wide and deep, and special education is part of a more holistic approach to the child/ person that every student could benefit from. It’s not just about the specifics on an IEP, but about appreciating that diversity is a reality–and it’s a good thing.

    Get comfy on that soapbox! : )

  45. I don’t have a kid on the spectrum, but I am a parent and I can tell you that what I want future educators to know is that I *want* my kid exposed to the spectrum. I want them to know first-hand all the important things you talk about when you talk about inclusion. I want them to respect differences and they will learn that from me, but they’ll learn it a whole lot better from their teachers. Please don’t make teaching “those” kids into a chore you have to tolerate — our kids all see that and it colors their attitudes. We have an opportunity when kids are young to have inclusion become as natural as breathing.

    At my kids’ preschool, the teachers were required to eat a healthy lunch, with the kids. This is no different — I, as a parent, need you, as an educator, to set the example. I need you to show my kids how you handle a sensory overload meltdown with respect and tenderness. I need you to show them that *none* of their classmates is a burden to you, because everyone has value as a person.

  46. Jess,
    I believe that if these “future” educators do not possess 2 simple qualities 1)patience and 2) kindness, they should rethink their career. In my dealings with the school I have fought year after year to change teachers for my son because the original teacher was inpatient, borderline cruel, and had no tolerance. Only until this year did my son get placed with a teacher that truly had a heart of gold, this may be because her own son is severely mentally handicap and she knows where we are coming from. If they don’t have a heart, tell them not to teach because our children’s very souls are in their hands.

  47. I’m late to the party but it appears you got some great comments. I sure hope those you spoke to today take the time to read through these wonderful thought out suggestions and take something away. I’m sure they took much away from listening to you speak today Mama. How could they not? :)

    We want those working with our children to see their potential, because it’s THERE. They have to learn about autism, and then learn about each child, because they are all so very different. Parents are a wealth of information and we WANT to be included and informed about what goes on in the day, and not just the bad, the good stuff too.

  48. Please let them know that when a child succeeds, they succeed. Let them know it’s okay to celebrate the small steps, because it takes many small steps to make up those leaps and bounds.

    Please let them know that at times they will feel like they’ve failed. We’ve all had times when we feel that we’ve failed.

    Please let them know that you can never care too much.

    Let them know that we all make mistakes, but to not get discouraged. We are all learning each day – parents, educators, family, neighbors.

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