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Sunday, March 25, 2012


A year ago—no, even a few months ago—if you had tried to tell me that Cainan should be in a regular classroom, in the general education environment I would have thought you were crazy.  I would have argued that you didn’t know Cainan, didn’t know what his needs were and I would have advocated for him to stay in his safe MAPS classroom where he is successfully learning the curriculum they are teaching him.  Why on earth would I want him to be in a setting where he might have a hard time keeping up, where the class size is so much larger and he would get less individualized attention, where other kids could be cruel and bully him and no one would notice?  I would have thought you were out of your mind to suggest it.

Now I am the one, not only suggesting it but actively championing it.  Why the complete 
turn-around? You could say I had my whole world turned upside down after just one short weekend at Partners in Policymaking, where my preconceived notions were challenged, my eyes were opened to the reality of disability in our culture and I was given a proper education on the possibilities for people with disability.  Each weekend at PIP thereafter, has provided me with even more information and tools to advocate for the best interests of my son.

The challenge now, is not just for Cainan to be included within our society at large, but getting the same message to other parents who are doing their best to advocate for their children’s needs, but like me, may not have ever received the whole picture or were able to dream of the possibilities.
I don’t want to overwhelm anyone with too much information, nor turn people off by getting on a soap box and preaching “Inclusion! Inclusion! Inclusion!”  Instead I’d like to leave you with a few bullet points to mull over and consider why inclusive practices may be a lot more important than you ever believed.  If you are left challenged and wondering what you’re going to do now, let me know.  I’d LOVE to give you the hope that I’ve recently found and connect you with other parents on the same life-changing track.  Here are some of the things that were eye opening for me:

  •  What do you hope and dream for your child’s future?  Do you expect once they graduate from school that they will live below the poverty level, isolated from their peers without the skills or resources to make it in the real world without their rights being taken away (e.i. guardianship) and being completely dependent on social workers?  Ugly picture isn’t it?  This is exactly what I had in mind for Cainan, but I never looked at this way.  I thought it would be nice that he wouldn’t have to worry about working when he grew up because he could rely on Social Security (which would place him below the poverty level).  I had hope that he might have some independence but I expected that we would probably get guardianship of him so we could help him with is finances and make important decisions for him (that means we would have to strip him of his rights, declaring that he is incapable of making decisions for himself and he would essentially be treated as a child regardless of his age or maturity).  I couldn’t really imagine a way for him to be independent because I had no experience with adults with disabilities that are successful and independent—they are out there and they can assure you it’s possible!!
  • If you grow up in a safe, segregated environment, what happens when that environment suddenly disappears and you’re expected to cope with the real world, with people not like you, who have never met you nor established any kind of relationship with you? How isolated would you be?  While Cainan’s MAPS classroom is a “safe” environment, it’s not a real environment.  What’s the most important priority for him: learning to read to the 12th grade level or having meaningful relationships with peers who will be out in the real world when they grow up, making decisions, voting on policies, determining where their time and money is spent?  I realized we can reinforce his learning at home, but we can’t teach him appropriate social skills (that’s best learned by immersion with those who have them naturally) and we can’t help him make life-long friendships unless he’s exposed to all different kinds of kids.  We can’t teach him how to advocate for himself unless he has the opportunity to address his peers, explain who he is and spend quality time among them.  Nor can his peers be expected to learn compassion, patience and appreciation for all our differences if they are never exposed to anyone with differences.

  • Do you believe that the general education classroom is a scary place for your child?  Do you think advocating for placement in a general education classroom means your child will be abandoned to make his/her way without the special education supports they need?  Do you agree that kids who have behavior issues or need a lot of extra support would be disruptive and unfair to the kids trying to learn in a general education classroom?  You can admit it if you do.  I believed ALL of these things.  That’s why I thought advocating for Cainan to be in general ed was CRAZY!  Can I just tell you, without going into a lot of detail, that ALL of these are MYTHS? I have learned amazing, amazing, AMAZING things about inclusive education that does not make the general education setting scary and data shows that, when done correctly, it is a great environment for ALL students.  Let me just ask you to consider this: Special Education is not a place, it is services (Thank you, Michael Remus).  Consider your child receiving all the necessary special education services they require integrated successfully into a general education setting where the teacher, aides, therapists and students (yes, I mean general ed students) all work together.  It is possible and being done in some districts.  Really, it is.
  • Does the IEP process intimidate you?  Are you concerned you don’t have the knowledge or experience to advocate correctly for your child unless you keep them in a special classroom where the services are a natural part of their day and they have lots of support—especially when their special teachers are telling you that’s where they belong?  I can tell you there are other parents out there who would be willing to assist you if you are interested in looking at a change.  There is support available to help you learn more about the process, what your and your child’s rights are and what the law says about education—without trying to push you to do anything you’re not comfortable with (I’m one of those parents—I’d love to talk to you!).  There are parents, right here within our valley, who have their children receiving a special education in a general education setting, among their same-age peers.  While it’s a bit more challenging in some of our local districts, it’s still possible.  
I realize, that even though I wanted to keep it concise, I’ve run on a bit.  I hope I have given you something to really chew over and consider.  I hope that if your child is in a “special” class, away from their same-age peers, that this has challenged you a little and made you think that there are other options out there for your child and there is a MUCH better hope for their future than you might have ever imagined.  If you want more information, please contact me.  Also, consider joining a parent support group, like Families for Communities where parents support each other and offer resources to parents who are looking for the best future for their kids.

Wednesday, March 7, 2012

Presume Competence

Yesterday’s IEP meeting got me thinking.  How many of us have to prove our competence when it comes to associating with peers?  For most of us, presumed competence is a normal part of life when it comes to daily activities, school, basic work, etc.  When you first started school it was presumed you could handle a regular Kindergarten class.  If you’ve enrolled your own kids in school or sports or extra curricular activities, your kids were presumed to be competent until they may have proved otherwise.

How would life be if it were the other way around?  We are finding that out first hand.

I went into this IEP meeting hopeful but expecting to argue our point for why Cainan should receive his education in a general education class with his peers.  I knew there would be some concerns regarding this step because he has always been in an isolated environment, away from peers in school, receiving a very individualized education in a special setting.  But I also know my son and I know he’s ready for this step.  I thought I could explain that to the school officials and we could come to an agreement.  I was wrong.

I left the meeting with a somewhat positive feeling because I believed we had made some progress toward our goal, but the more I dissected the two-hour discussion of Cainan’s current abilities and goals for next year, my opinion changed.  I began to feel very discouraged and overwhelmed with the amount of work they are requiring of Cainan and my family in order to prove that Cainan is competent to have an education with his peers in the least restrictive environment possible.  They are presuming Cainan is incompetent without any proof on which to base this assumption.

I pointed out that Cainan has successfully (extremely successfully) participated with peers in Awana and Sunday School.  He independently attended four weeks of various Vacation Bible School programs at different churches in our area last summer.  I have seen his interactions with peers and I have seen him be successful.  Did it require some education on his condition and some supports in order for him to smoothly navigate this peer world?  Yes.  But it was completely doable and he enjoys his interactions with peers at church.  In fact, it is his choice and desire to be in a regular education class next year instead of a blended 3rd through 6th grade segregated special education class.  Is that going to happen?  It remains to be seen.

What was decided at yesterday’s meeting is that Cainan will start being pulled out of his special class to attend special instruction with other general ed kids in a “Resource Room”—this is for kids who are not in a segregated class but require some additional instruction because they are falling behind in certain areas.  In addition, they will attempt to place Cainan in a regular second grade classroom for some minimal instruction if they have the resources to do so.  At the end of the year, they will see how Cainan did with these tasks and make a more informed decision about whether or not he’s ready to be in a general education class.

Did any of you have to go to school part time as resources allowed in order to determine if you would be successful in a classroom setting?  No.  I’m sure you were presumed competent.  Cainan is presumed incompetent.

I am also to get as much time as I can observing in general ed second and third grade classes so I will have a better understanding of what they’re talking about when they say that it will be difficult for Cainan to adjust to these new settings.  While I could tell they didn’t believe me when I pointed out Cainan’s success with peers, I’m sure they could tell I didn’t believe them when they told me how “hard” general ed is going to be on him.  I had already planned on observing for the opposite reason.  I wanted to know how the classes operated so I could help brainstorm supports that would make Cainan successful.  I am presuming he is competent to be in this setting with the right tools to help him.  They are presuming he is not.

What is the solution?  More advocacy.  More research.  Talking to parents who have successfully had their kids in regular education classrooms whether or not they’re meeting the academic standard and finding out how they did it.  There are schools and districts all over this country that are successfully adopting a policy of full inclusion for kids with disabilities.  Does this mean there’s no special education for them?  No, definitely not.  Kids who need special education receive it in the general education setting through supports, modifications, adjustments to curriculum and grading, etc.  

Cainan has to live in the real world.  Someday he has to learn how to get along with “typically-abled” people.  If he’s been isolated from them his entire education in order to support his “academic needs”, how is that going to 
help him when he gets
 out into the real world after high school?  If, on the other hand, he has grown up with his typically-abled peers and they know him, really know him and he has learned how to interact with them since he’s been included with them, then he’s going to have the tools he needs to make it in society wherever he ends up academically.  

Furthermore, these kids who get to know Cainan and see how successful he is even though he is different from them will start do something their elders have not.  When they meet someone with differences, they will start to presume competence.  They will start to recognize that a person who’s mind works differently, who has difficulty with things they take for granted, who looks differently or uses assistive devices for basic tasks, is a person like them—a classmate, a peer, a competent individual.  

It takes time to readjust your thinking.  If you’ve never been exposed to a person with a disability, if you’ve never had a relationship with someone who has a disability, if you’ve never seen their struggle and taken the time to know their story or thoughts, you may naturally assume they are incompetent of many of the things they hope and dream to do.  What a disservice to them!  Why must they prove their competence in order to even try?  

Presume competence.  Presume ability.  Give each person a chance to try for what they desire in this life—the things most of us take for granted.  An education with peers.  Independence.  A job.  A Career.  A family.  Did you have to prove you could do any of those things before you got the chance to try for them?  

Presume competence.

Sunday, March 4, 2012

Homemade Crayons: A Kid Friendly Craft Project From Start To Finish

I know it’s late in coming since Valentine’s Day is well over.  I should have posted this one a few weeks before the big Heart Day so you’d have a chance to make these with your kids, yourselves.  However, this could work for any holiday in which you’d like to give a little gift and get your kids involved in a great tactile activity.  I’m thinking even St. Patrick’s Day with clover shaped molds and shades of different green crayons.  I’m getting ahead of myself…

After seeing a FB entry from Family Fun (one of my favorite magazines and a “friend” on Facebook) on a Valentine’s Day craft, I decided to plunge in and give it a try for ourselves.  Both the boys needed to provide valentines for their classes this year and I didn’t want to go super cheap—even though that’s my budget—
and get the flimsy cardboard valentines that 
require no thought, creativity or personal interaction on the part of the giver.  I know, I’ve resorted to them in the past out of necessity, when I just didn’t have the time or energy to do anything else.  They are easy.  But this year I had both time and energy and I wanted to something fun with the boys that they could be involved in.  Enter the homemade crayons…

These are a fantastic and easy craft project.  If your family’s like ours, with young artists in the house, we have tons of crayons of every color, in duplicate, triplicate and beyond.  We have whole crayons, pieces of crayons, crayons coming out of our ears.  Rather than just throwing them away or continuing to accrue them, I thought this would be a great way to recycle them and fulfill the necessity of valentines for the boys.

We began by gathering all the crayons we could find in the house.  I had the boys peel the paper off them (great for fine motor practice!) and break them into pieces.  Breaking them into pieces was a little tough and I took scissors to many of them to get the smaller pieces I wanted.  I don’t think this is necessary but just a personal preference on my part.  I used a muffin tin and had the boys separate the naked, broken crayon pieces into color family: all the yellows in this cup, the greens in the next one, blues in this one and so on.  This is great sorting practice and a color recognition exercise for younger kids.   

Once we had gone through all our crayons, I pulled out some heart shaped molds.  I happened to have some heart shaped ice cube trays but they were a little smaller than what I wanted.  I had hopped on 
down to the Dollar Tree before starting this project and found a set of small heart shaped containers (10 in the pack for just $1.00!) and decided they were the perfect size.  We just used the base of the containers since the lids were slightly domed and I didn’t want rounded crayons.

I had both the boys start putting crayon pieces of various colors in the heart shaped molds, filling them about 2/3 of the way.  The molds went on a cookies sheet and I placed them in a 250 degree oven for about 10-15 minutes, until the pieces were all melted.  I have to say, looking at the molds afterward did not make me think this had been a successful enterprise.  The tops were a filmy brownish-gray color and I thought they were hideous looking crayons.  However, once the crayons cooled I popped them out of the molds and the bottom side was a beautiful mosaic of colors—exactly what I had been hoping for!
Using some suggestions from the Family Fun website, I printed out valentines—four to a page—on cardstock with little sayings like, “You Color My World” and “Have a Happy Valentine’s Day for ‘Crayon’ Out Loud!” and each of the 
children’s names from the
 boys’ classes.  The boys cut out the cards (again, great for scissor practice—I kept borders on the cards so they had a line to follow when cutting out) and taped their crayon hearts to each one.

The valentines came out fantastic! I loved that they were homemade, almost completely by the boys, themselves, and they did not involve candy (something that Cainan can’t have anyway).  The boys were also very proud of themselves for making the crayons and cards.  

Again, even though Valentine’s Day is over, this craft could be repeated with shamrock molds, egg or bunny molds for Easter presents, apples or schoolhouse molds as a teacher gift, etc.  The possibilities are endless.   
Give it a try and let me know how much fun you and your kids have making them.

Saturday, March 3, 2012

How Can I Talk If My Lips Don't Move - A Review

How Can I Talk If My Lips Don't Move: Inside My Autistic Mind
Tito Rajarshi Mukhopadhyay

I know. It’s been weeks since I update my blog.  Life has gotten in the way and I have not spent a moment writing even though there is plenty to write about.  I have recipes to post for Wednesday night dinners, crafts that have been fun for both the boys, life events and opinion pieces that have all been floating around in my mind with nowhere to go.

I’ve decided to end my silence with a short review of a book I read in just a few days.  It was so moving, so unfathomable, so surprising, that I decided I needed to devote a few paragraphs to it instead of a short Facebook status update saying it was great.

The other day I was browsing through the book aisle at Dollar Tree, looking for some inexpensive stories to read to the boys.  For one reason or another, the title of this book caught my attention: How Can I Talk if My Lips Don’t Move.  I picked up the book and realized it was referring to someone who had autism.  I read the synopsis on the jacket and was more intrigued as I found it was written by a man who has “severe” autism.  I certainly felt I could splurge a dollar on it and give it a read.  Boy, was I surprised once I delved into it!

Tito begins by telling autobiographical stories from his earliest memories, based on his perception of the world around him.  What a different world he experienced than the one I did as a child!  Though he is an excellent writer, I struggled at times to comprehend the descriptions of how his mind worked—it is so alien to the way mine works.  I simply cannot fathom it.  No wonder the mind of someone with autism struggles with comprehension in a “neuro-typical” world.  I struggled delving into the world of autism and can’t imagine processing things the way he did, even when he clearly spelled out how to.

What I found even more amazing, as do many experts who have met and studied with Tito, is that there is a highly intelligent, creative, funny, articulate mind at work inside a body that does not speak, has extreme difficulty functioning in “normal” social situation and struggles with obsessive/compulsive behavior so strong he describes it at addiction.  Inside his mind he comprehends all of this about himself but cannot use his mind to make his voice work, nor look someone in the eye when he meets them, nor accept unexpected changes to his routine or environment.  He truly expresses the complexity of the human mind and it’s inner workings.

Tito describes how his primary sense is auditory and is translated in his mind to colors and images.  It’s hard to visualize, since I have a very visual mind, how he sees someone through sound, associated with color and circumstances and may not recognize them by their face at all.  He is very good at trying to explain how this works for him in laymen’s terms.

I was fascinated with his stories describing why he was obsessed with mirrors, flapping his hands, staring at the sun, learning to write, his experience with a special education school and so on.  Interspersed with each of his stories are poems written in various forms, from rhyming to free verse.

He gives tremendous credit to his mother, who, outside of himself, is the primary subject in the book.  From his perspective, she is the only reason he was able to reach outside of himself and connect with the world outside of his mind.  While I was fascinated and in awe of her patience and ingenuity, I was grateful toward the end of the book when he mentioned times that she was impatient or missed the point entirely.  Not that I wished her to fail.  I was just glad that she was human, with flaws and I could relate more to her as a mother, doing everything within her power to see that her son lived a happy, productive life, but not having all the answers or tools to do it herself.  She seems like an amazing person and the best mother and advocate for her son.  It certainly was encouraging to read about her dedication and tenacity when it came to reaching her son, at what ever level he was capable of being reached.

The book mentions that Tito has written other books and after reading this one, I am looking forward to those as well.  I encourage anyone to read this book, but especially those who have someone in their life that has a developmental disability.  I think Tito gives great insight into the mind of someone who’s brain doesn’t operate like the “norm”.  It certainly helped me understand ways in which my own son might be processing thoughts and how I might change some of my own perceptions and actions in regard to his behavior.

Pick up the book and give it a read.  If you can’t find it at the Dollar Tree, I noticed it’s less than $3.00 on Amazon.  If you’re local, you could even borrow it from me for free!