Inclusion as a Process

Lots of water under the bridge since my last post (apologies in advance for the long post here). We finally left our public school district. We exhausted other options. Encountered idiots and jackasses along the way. But, we made our way into a better school community. This school doesn’t pay lip service to inclusion or espouse a zero tolerance no-bullying policy. Rather it uses the work of Kim Payne to create an environment that is always in the process of learning how to include, accept, and create space for all differences.

The amazing letter from our class teacher has started the process of disclosure and inclusion with our special needs child:

“Dear Parents,
We are now in our math block. We started the block by finding the prime numbers of all the numbers from 1 to 100. All numbers have a secret life of their own. This week we will learn how to expand and reduce fractions. Fractions, like our children, can change their appearance while keeping the same value!

Finding the prime factors of a number led us to finding “common factors for our class of students.” The appreciation of the differences and uniqueness of each individual came when we looked at each child in the class as a prime number…. The importance of the social learning even during a math block can never be overstated, for creating a harmonious and safe environment is one of the first conditions for academic learning. Meeting the children where they are emotionally and involving them in a healthy social process is an important step towards developing a fine sense of what is socially beautiful and harmonic. We want the children to be polite, not to talk behind other children’s backs and understand the impact of their words and deeds on other children. While it is natural for the children to react to someone who is different by experiencing feelings of anger, unease or suspicion, our job is to encourage the appreciation of differences. We need to give the children extra emotional support when necessary and enough tools to navigate the social realm. We need to show them ways to interpret the language of feelings, and, very important, to let them know how they are doing through continuous feedback. When we all work together in this direction, healthy social interactions will occur and through collective effort the class will grow together socially!

It is important to know children’s differences in order to support them. Since many of the fourth graders seemed confused about Ruby’s behavior, her parents decided to share some of her social challenges. Her genuine yearning to be part of a social group and her desire to improve her skills are gratifying for me to witness. Ruby’s behavior is not intentional, but it is a riddle for many students. She is expected to comply with the rules and expectations of the class and she follows my directions thoroughly, even though she needs repetitive support.

I find the parent’s letter (see below) very informative. It will give you a picture of Ruby’s social challenges and it will help you to coach your children on how to respond when a problem arises. Please, encourage them to ask for help, if necessary. If you also have any questions, please, feel free to address them to ……. me. We will carry on the discussion at the Parent Evening, on ……… We want to use the meeting to talk about our children’s interactions and ways to coach them to be supportive and inclusive to each other without burdening them. We are hoping for tolerance and communication when things are frustrating and overwhelming.”

Here is our letter:

“I wanted to send this email to everyone in Ruby’s class in an effort to help people understand her learning style. We want the parents of the 4th grade class to know about this because we don’t think that it’s anything that needs to be kept secret and because Ruby’s unique social learning style affects how she interacts with her peers. Due to her quirky behaviors and learning challenges, we have had her evaluated several times since she was 4 years old. At the most recent evaluation, the psychologist found that Ruby has likely high functioning autism, anxiety and ADHD. Ruby also has challenges with her sensory system. She can be very sensitive to certain kinds of sensory input and has difficulty registering other kinds of input. We hope that, with more information about Ruby, you can help your child cope with the behaviors of hers that can be disarming.

From a social-emotional perspective, Ruby has a hard time understanding social nuance.

Here are some the other functional challenges that Ruby has:

her body needs more movement, weight and vestibular input than typical kids

she has difficulty holding her attention long enough to get the full picture in a situation

she has difficulty reading facial expressions and taking another perspective

she can get stuck on ideas that she likes and she will repeat herself

she imitates high-intensity reactions, like slang words and high-emotion facial expressions

Amazingly, with all of this going on in her system, she is really soaring academically here at ….., and we are so proud of how hard she works.

Ruby and children like her are at a high risk for bullying and social exclusion because she appears very typically developing, but she is not quite high-functioning enough to blend in with her peers. Typical peers see her and know that something is different about her, but without understanding that she can’t help what she is doing, they perceive her as intentionally annoying. Due to the imbalance of power between her and her neurotypical peers, traditional conflict resolution formats often have not been successful, because there is no incentive for the typical children to behave inclusively, change their attitudes, or try to understand a child with differences. Current research on bullying is bearing this out.

We have met with the psychologist and Ruby to begin the process of explaining some of these differences to Ruby, so that Ruby has a better understanding of her different neurological wiring. She is learning strategies to self-advocate when she gets into conflicts with her peers.

Your child may come home saying that the things Ruby does are annoying, which is not Ruby’s intention. Feel free to explain to your children that Ruby’s brain works differently. Sometimes just naming that fact can help ease a situation. There are specific tools and responses that we feel work effectively. If you are interested in hearing more about them, contact me directly.

There will be things that come up that will be difficult to navigate, but I am confident in the deep well of compassion within this community. Please don’t hesitate to bring matters to our attention, if something is bothering your child. Understanding how to handle herself socially is Ruby’s life work, and it is our journey as parents to guide her.

Our basic expectations are that her experiences here are neutral and not hurtful. We don’t expect her to have a set of best friends. She has a few trusted friends outside of school. However, we hope that common politeness, basic tolerance and open communication can be extended to her in the class. We don’t expect people to feel burdened by the need to include her in every out-of-school event, but she also doesn’t need this rubbed in her face.

If people are interested in getting together to problem-solve or talk more openly about this, we will have this as a topic at one of the next meetings.”

So begins the process of authentic inclusion for us……more soon.

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About Jen…..

My Story

After 4 years putting up with the system, I’m ready to tell it all. It’s time to tell the story of my journey of advocacy for my twice exceptional child. We are a happy mess of a family. Coming out on the brighter side has taken hard work. I hope that telling the story will help others in their journey, and help me heal some of my wounds.

What I Do

I have worked with children with special needs for the past 15 years as a Speech Language Pathologist, across a variety of settings, including hospital, clinic, schools, and private practice. I have seen the same theme across the years and across every setting. These children and their families want to be included and accepted as equal members of society, regardless of their differences. They want equal access to fun, learning opportunities, kindness from others, and, as adults, want to live productive lives. The world can be an unkind place for these individuals and their families, with its unpredictability and unwritten social norms.

The Good News, Really

My special child and children like her have gifts and talents to offer the world, with their creative ideas and unusual perspectives. Through the telling of our story, I hope to make the world a kinder and more inclusive place for her and others in her beautiful tribe.

Hang In There – This Is Us

I wasn’t even thinking about this when I had my mom take this picture, but this picture kind of says it all. The rapids, the tornados, the elements rush past us, every day in the form of over-scheduling, outside pressure to be something that no one can be (as parents and children), and push-down, “Tiger-mom” approaches to parenting that go nowhere. Still, we have hung together and we actually like each others’ company, even though it’s hard to catch us all smiling at the same time. The only one missing from this picture is our family dog. But, with his three legs and over-sized heart, he deserves his own page. I’ll get to it…..

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Squandered Resources: One Reason Why Bullying Happens in Schools

A Letter to a School Principal Somewhere in the Southeast, U.S.A.

Dear Principal,

Our family is in receipt of your letter dated May 5, 2011. The purpose of this letter was to follow up on the threats of physical violence of which my son has been the target, in his Kindergarten classroom and on the playground. 

In your letter, you make reference to a school “procedure” and a referral. We are left to wonder whether this “procedure” applies only when the person who is making the complaint does not have cognitive and linguistic deficits. We have brought many, many concerns to you directly and to your staff over the past 4 years, with respect to my daughter (diagnosed with “Educational Autism” by your staff) and her difficulties with her peers and bullying. Never once has a “procedure” been mentioned, and never once have we received a letter from you, stating that any sort of procedure exists or that you are following it.
Also, in your letter, when you talk about a referral, we are left to ask ourselves about that referral. What will be the nature of the referral and to whom? Will my child’s aggressor be referred to the school guidance counselor? If so, will that resident guidance counselor actually leave her office to do something other than proctor during exams? Will that fully-salaried guidance counselor actually see children and does she have anything in the way of therapeutic expertise to offer this child?

Or, will the referral be to the overloaded, outdated E.C. department? If so, the referral may take weeks to fulfill, and perhaps by the time the department gets to it (next year), this child will have already transferred to another school, and gotten away with many, many more episodes of bullying. More importantly, he and his family will not get the mental health support that they so clearly need, and the other children in his classroom and the classroom teachers will be left paying the price for his challenging behaviors.

Certainly, by the time either of these useless referrals takes place, there will already have been several more episodes of bullying of my child. Indeed, despite the fact that you state “as always, safety is our concern at [our school],” there was an incident on the playground last Thursday. My son felt that he had no choice but to fight 2 other children off of him. He was approached from behind and punched repeatedly. He turned around and began hitting the other children back, until a teacher finally saw what was happening. My son told me, when he came home from school, that he knew that the other child who attacked him was “faster” than he was and that he would make it to the grown-ups with his version of the story first. My son also told me that his classroom teacher, that he trusts, was not on the playground. He stated that there were 100 kids and only 5 grownups on the playground. How can you hope to keep everyone “safe” when these are your ratios? What choice to do I have as a parent? I can tell you that, as this situation escalates and my son comes home with more stories of how this child has mistreated him, we are considering withdrawing him from your school for the rest of the year.

Our son’s Pre-K teachers told us, during his conferences last year, that he is a “peacemaker, everyone’s friend.” His Kindergarten classroom teachers can substantiate this. How is it possible for him to go, in one short year, from being a peacemaker to resorting to fighting back to protect himself? It has happened because you have nothing in place to prevent it from happening.

You have a guidance counselor who does not see children. Only you can answer to what it is that she does, on her full-time salary.

You have an E.C. department that does not really understand how to model inclusion in the mainstream, despite having the significant funding of the 2 dedicated E.C. classrooms.

Your school lacks authentic school-wide social curriculum.

You have an office full of staff who do not see children, and most of them are not qualified to see children; however, it does not have to be this way if you were staffed differently.

There are ways that you could allocate your existing resources to make the school a more safe environment. If you want to have a more balanced socioeconomic group of parents and children in your school, these are the serious matters for which you and your successor need to be accountable. Although we are leaving the school, there are other parents who see what is going on in the school, and are asking these very same questions. How can taxpayers like myself vote for an increase in funding for public education when we see how the resources that you already have are being squandered? They are being squandered by people whom we are supposed to trust with the well-being and health of our children.

I have no doubt but that you will not respond to this letter. My sincere hope is that the district will respond with reform and accountability.

Jennifer and Pete Minnelli

 

 

 

 

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Happy Inclusive Easter

Agnostic Mommy Gets Some Religion

by Jennifer Martin Minnelli, M.S., CCC-SLP

When I was six, I accepted the Lord Jesus as my personal savior. Since then, I’ve left the church many times, as a teenager, as a young adult, as a parent with two children. Not for lack of trying. In the end, my recovering-catholic husband and I have raised our children religion-less. My oldest went to a Jewish preschool for a short stint. Our kids get Santa and the Easter Bunny, but those characters fit in more with the other Hallmark holidays than with any form of religion. They get churched by their Christian Nana and their Evangelical Catholic Grandma. They go to vacation bible school, and they get DVD’s with little insect characters who talk to a God. This God helps the little insects learn “character education.” I can’t really do any more than this right now. Hopefully, if things work the way they’re supposed to, it will all be forgiven.

When I was pregnant with my oldest, I joined an established church in our historic neighborhood. It boasted a beautiful building, and an active and large membership. We could walk there, and sometimes we did. I joined the choir as a way of meeting people. The preacher’s sermons were mini-M.A.S.H. episodes. You would laugh enough and cry enough for him to bring you a few steps closer to some kind of truth, with his very human and often self-deprecating stories. This charisma seemed to draw large crowds every week.

It was disappointing to me that, when I finally gave birth to my child, very few church-goers arrived on my doorstep with hot-covered meals, or came to spell me from my colicky infant. Again, as before in my life, I walked alone through the valley of the shadow of death. That is what my first experience with post-partum depression felt like. Church-people and God did not rescue me from that. My only rescue came from a nurse midwife who prescribed me some Zoloft.

When our oldest was nine months of age, we had her baptised there. She wouldn’t let the preacher hold her. In fact, as soon as I placed her in his hands, her face looked wounded, like someone had jabbed her in the leg with a sharp needle, and she tuned up for a howl. The preacher handed her back to me. Even his charisma had not worked on her. I walked her through the crowds of people, trying to keep her calm, and knowing there was something wrong with my child, knowing that I had somehow already ruined her.

Volunteering at the church, giving of my time was not a problem. I have many talents to offer any organization. However, attending the sermons became the challenge, as my oldest developed stranger anxiety. The stranger anxiety is not what you may be thinking. The kind of stranger anxiety I am talking about is the kind where I leave her in the church nursery, she turns bright red, and spends the next hour screaming at the top of her lungs, inconsolable. Now add another child to the mix, an infant with the same level of anxiety about being separated. You can maybe imagine that I did not get a peaceful easy feeling about going to church, leaving my kids behind, so that I could soak in the wisdom of the preacher. This is also the point where my husband, not much of a believer, decided that he would rather worship at the altar of Over-30-Pick-up-Soccer on Sunday mornings.

Still, I am trying to make things work with my Lord and Savior, and with the other people in my life, too.

I start to feel like I’m not fitting in here. I haven’t lost all of my baby weight from 2 pregnancies that were very close together. And I don’t have much in the way of church clothes. I recycle through the same rotation of black skirts, old suits, and when I can’t get to the laundry in time, jeans dressed up with boots. I don’t have a shiny mini-van or a Kate Spade diaper bag. We can’t afford to “tithe” the way others can. And, now I am single-momming it on Sunday morning with my fussy children who can’t seem to get with the program.

Still, I send my oldest to the church preschool, when she is four years old. The day after I send her, the preschool director, also my child’s classroom teacher, starts talking about my child’s strange and quirky behaviors. The repeated questions. The social awkwardness. The relational aggression, of which she was often the victim, at the hands of 4 and 5 year old future prom-queens. I try to use my expertise to explain how the director could make changes to the classroom to accommodate my child and help the other children too. I try to share professional materials.

The director tells me that she wants to make a referral to the Special Education Department. I tell her no thank you. The director tells me that it’s too late. One of the specialists from Exceptional Children has already had a look at her, without our consent, and he wants them to refer her. Thus began a long and difficult journey with a Special Education Department that is 10 years behind the rest of the country.

That was when the door of my heart closed to the church and to the possibility of a compassionate savior. Crying children notwithstanding, I gave the adult Sunday school a last-ditch try. At least, I thought, there would be intellectual conversation. My attendance was poorly timed with the Virginia Tech shootings. The discussion, filled with platitudes and stereotypes about “lost souls” and “hopeless cases”, angered me. People stopped listening to me rant when I said that I sympathized with the shooter and with the opression that he must have felt. It was awkward and uncomfortable. Shortly after that, we left the church, and we have not looked back.

Today, my parents, ever the Christians, brought us to their church. I felt the familiar sense of shame. My kids, going for years now unchurched, acted like heathens. My son was not wearing churchy clothes, just some elastic waistband shorts and a polo shirt with his favorite shoes, his hair sticking up in the back. My tween daugther, now diagnosed with Asperger Syndrome, announced herself very loudly, with heavy mascara (courtesy of the Easter Bunny), copious jewelry, and her training bra strap refusing to be hidden under her bright flowery sundress. Midway through the sermon, the preacher, a woman, asked rhetorically, “Should we believe that Jesus died for us?” My daughter answered loudly, “NO!” This was met with chuckles and smiles, instead of rolling eyes and sighs. She also whistled under her breath through most of the sermon, despite my stern looks. My son moved around, banging his feet intentionally on the pew. But I am past worrying about appearances in church. And, it was a small enough community that it could really tolerate the least of us, which is all we have to offer on any given day.

Unlike any other church my parents have attended, this church was tiny. It was beautiful in its tiny little way. Only 25-30 people, children included, were in attendance.

Individual people were lifted up in prayer. Their concerns and joys were heard and felt. Among these was my father’s newly diagnosed cancer. I could see my mom tearing up. Always the doer, all she had to do today was to show up, and receive care and love.

The preacher preached the gospel from the perspective of Mary. She talked about the incomprehensible love that Mary had for Jesus. Now, that’s what I’m talking about. Mary knows something about oppression, and so do women. And parents like me understand incomprehensible love. She talked about the responsibility that comes with HOPE. And I can’t help but choke up. I have boundless hopes and dreams for both of my children, but if I want them to live up to my hopes for them, I have to walk always in honesty and always responsibly. When you’re in the thick of it, this burden can take the hope right out of a mom. And maybe that’s why we need a little Easter, a little Hallmark, a little forgiveness from the Savior. Finally, she talked about how Mary mistook Jesus for a gardener when she first saw the Risen Lord, how there is no accident in that. Whoever wrote this passage wanted us to realize that this new and improvcd JC was here to plant things, plant hope, plant love, plant forgiveness. I think, if Jesus could see this little church in action, he might actually want to attend. This message from this kind woman in this tiny, beautful place was what I needed.

The preacher, a friend of my mother’s, asked me if my daughter would like to serve as acolyte. I said she would want to, with some adult assistance. (Hate to burn the tiny place down). And she did it, with grace and purpose, and a serious expression. My son got to put out the candles at the end, and he rose to the occasion with dignity.

The only Jesus I can believe in is a Jesus that can handle my complicated life. This Jesus feels compassion when I try to check out at the grocery store and have to stand to the side and have the bill voided because of insufficient funds in our family checking account. This Jesus wants autistic children to come to church services and disrupt the sermon so that His Chosen People can get hands-on training in compassion, grace, and forgiveness. This is the same Jesus who held the hand of the Korean boy, in the face of those Virginia Tech atrocities, because he has incomprehensible love for everyone, especially those with mental health disabilities. This fantasy Jesus will be sitting next to me this week when I meet with the school district to educate them on all of the ways that they have violated my child’s civil rights, and to demand an apology, compensation. Better yet, he’ll send Mary Magdalene, wearing a halo. This Jesus wants to empower women to preach the gospel from a female perspective, so that mothers like me will have a true spiritual connection.

The closest I can get to believing in any kind of compassionate, all-knowing God or Goddess is to believe that, every once in a while, my quirky child will receive grace from total strangers. Too, maybe I will get a pass as a mom, who, regardless of her agnostic and anarchistic beliefs, and her unruly children, still needs a little shelter from the world. And that’s the kind of shelter I think Jesus came to provide and died to protect, if he came at all.

Was this Jesus or Mary Magdalene in our midst today? I’ll never know. All I know is that this tiny beautiful place is a place that I could bring my kids, and feel welcome, loved and accepted.

 

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Just For Today

image of beach

The chilly breeze is whipping my hair around. I step through the scratchy sand and lay down the beach bag. Twenty yards away, I can see my family splashing around in the surf. The waves are choppy and rough. Warmed by the sun, they play a game that involves running away from the approaching waves. They wait, and as the waves break, they scream and crash away from the explosions of water. Rarely do they escape, but it’s all in the game. The mixture of chilly breeze and April-cool Atlantic ocean water excites them but doesn’t bother them the way it would me. I sit in the breeze and shiver, wearing my long-sleeved shirt.

Around me I can hear the screech of seagulls and the rumble of another beachcomber’s kite. The sun makes me squint as I watch a woman examine the shoreline for rare shells. Years have gone by since a day at the beach was carefree for me, a former chubby child, overweight teen, and now, a mother with intractable post-partum extra-ness, and an overdeveloped sense of shame.

It’s not long before my youngest ambles over to me, asking for a towel and needing some extra warmth. At six years and change, he has finally acquired the girth to hold up his size-4 swim trunks. His newly shorn head feels like a downy baby duck against my face, as I wrap him in a striped towel and fit him in the nook between my arm and my body. Despite his age, he is the old soul of the family. I think about how this must be hard for him at times, but I am always grateful for the gift of his wisdom. Snuggled against the choppy breeze, we watch the pelicans as they fish in the distance. We wonder if we will see dolphins this early in the year.

Years of making questionable choices and then questioning those choices over and over again, and, finally, I have been rewarded with a child who loves me exactly as I am. This child always sees a full cup of joy, and knows that he can drink it, bottoms up, belch loudly, and we will still love him.

We are yin and yang. Just for today, I think, he is this size and this age. And I will only be this young today. I feel gratitude that my old-man six year old still wants to snuggle in with me, and I feel gratitude that we are here together. That my body lets me be here. That I can be a soft, warm, pillow for him, on this sandy, nippy, beach.

I push aside the knowledge, that for him, the Bionicles and recreational soccer will give way to electronic gadgets, girlfriends and varsity sports. I rub his back and we feel each others’ presence. We are warmer now together in the wind and the sun. The blue of the sky and the brightness of the vast ocean give us pause.

I push aside the constant mathematical equations, ending in a negative number, associated with our family finances. I push aside my Dad’s newly diagnosed cancer. I push aside the impending death of my grandmother, the fact that her life is crumbling before our eyes. The crisis in Japan. 3 wars. Why am I not a size 6 anymore? What to cook for dinner? Those things will still be with me when we leave this beach.

My work now is to be here in this moment with my little old man and his soft head and stretching-out body. And my heart feels open wide. To practice letting go of the cancer, the money, the death and the pain of life is what I need. Those things will catch me anyway, like the ocean waves in my kids’ game.

Just for today, we have each other and we are present.

 

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Cycles of Grief and Parenting a Child with Special Needs

Originally posted on The Thinking Person’s Guide to Autism on Friday October 29, 2010, by Jennifer Martin Minnelli, M.S., CCC-SLP. I would like to add that I now openly and willingly discuss my own and my family’s mental health issues, just the way I would discuss my grandmother’s Parkinson’s Disease, or my father’s cancer. I believe that the only way we can reduce the stigma about mental health issues is to speak out, speak honestly, and hope to make the world a more compassionate place. -JM

The grief process, for a parent coming to terms with having a child with special needs, differs from the grief process that one might undergo with the death of a close family member. At a certain point, with a death, there is the finality of the headstone, and the cold absence of that dearly beloved person. However, with a child with special needs, parents and siblings can cycle through the different parts of the loss, depending on what is going on developmentally with the child, and what is going on within the family or the community.
Here are some examples of the Stages of Grief (Kübler-Ross) married with my own personal self-talk:

Denial: “This is not my child. She can do what you’re asking, under the right conditions. No way is my child in the same developmental category as that. I completely disagree with the diagnosis. I guess it’s me and my child against the world…

I was in denial for most of my child’s preschool experience. It made it hard to engage with her teachers in a way that supported my child.

Anger: “Damn this situation!! I hate myself, this child, her dad, my parents, and everyone else in the world! This sucks! Why is everything always so hard on me?? You stinking neurotypical brat!!

Feeling stuck on my anger for several years wasn’t helping anyone. It was especially hard on my marriage.

Bargaining: “If the sun, moon, and stars align themselves, and I am a good mother who serves only gluten-free items, and follows through with the sensory diet, then my child will miraculously, magically become neurotypical. Did you see that? She just made eye contact! Those clinical psychologists don’t know what they’re talking about!”

This thought pattern made it difficult for me to realistically support my child with strategies or to seek help for her.

Depression: “What’s the use? Nothing I can do makes any difference. Nobody cares about me. Nobody loves me or my child. My child is who she is, and there’s nothing I can do about it. The world sucks. I might as well sit in my messy house and let my kid stim on this talking stuffed animal.”

I was immobilized when feeling this way.

Truthfully, these different themes have played themselves in my brain, from day to day, for the last six years — it was painful.

Acceptance: “My child has some amazing strengths. There is a place in the world for her. I will do everything in my power to make sure she has what she needs to live a productive life.”

This is balance between recognizing what’s really going on but also persevering and engaging with the reality of our situation.

Finding the Path to Self-Care
You need to be on top of your game to take care of both your child with special needs, and your neurotypical child(ren). Not to mention your marriage, or partnership. When you’re not feeling great, it’s difficult to make lunches and do laundry, let alone care for others’ emotional needs, and referee the complex dynamics in a family system.
A True Story
I’ve struggled with chemically-based depression for my entire life. However, there’s still a real stigma attached to the mere mention of mental health illness. So, it hasn’t always been easy to find the right kind of help, or even admit that I need it.
From my first pregnancy to my second pregnancy and then on to when my oldest was diagnosed, I cycled through several episodes of grief, depression, bargaining, and anger. When my daughter was in first grade, after two years of good counseling, support, and lifestyle changes, it hit me. I still felt terrible. I didn’t want to feel terrible, and I didn’t want to be on the roller coaster of feeling sublime when she had a great day, and down in the dumps when she had a hard one. I cycled through all the stages of grief, sometimes within a single day. It occupied my thoughts, put a strain on my brain’s ability to function, and ultimately, left me at a dead end.
Finally Getting Help
One day I finally went to Urgent Care and told the doctor there that I was having an acute depressive episode (which I was). At the time, I had only a counselor who supported me in this choice, but I was not getting regular medical care from a primary doctor. I was lucky that the urgent care doc believed me, prescribed something, and made me promise to find a regular doc to manage the outcome with the prescription.
On the Meds
I will probably be on the meds for the rest of my life. And that is fine with me. The meds keep the lows from getting too low, and keep me grounded in the reality that my child is different from other children. But here’s what else they do: they open up all of this space in my brain to help fight the good fight for my child and for other children and their parents. They help me navigate challenging parenting dilemmas. They help me see the best in others, and find the positive in people.
The Dalai Lama talks about happiness as the very purpose of our lives, and I am starting to understand what he means.

“I believe that the very purpose of our life is to seek happiness. That is clear. Whether one believes in religion or not, whether one believes in this religion or that religion, we all are seeking something better in life. So, I think, the very motion of our life is towards happiness…”

In our family, things run much more smoothly when we have a plan in place that is supportive of my mental health. This includes medication, optimal sleep, down time, time to write and work, time to exercise, and an organized living space. And let’s not forget date-night! My brain needs these stabilizers in place to manage the rough afternoons when the play dates don’t work out, to problem-solve sibling rivalry, and to find creative, conflict-free ways to keep my kids media-free for several hours at a time. And I imagine that, as my kids mature, I will need some reserves of happiness to confront what is to come.
Still Cycling
These days, I am more evenly in the acceptance phase of my grief. Don’t get me wrong — feelings come up. Feelings of frustration, anger, and especially regret for the time that I spent wallowing, bargaining, and cut-off from help.
Front-Load on Happiness
But I am learning to front-load the happiness with little treats to myself: setting small goals, coffee dates with supportive friends, inspirational reading, positive talk with my partner, treating myself to a special, but inexpensive purchase. I front-load on happiness by simplifying with a Friday night take-out dinner for hubby and me after the kids go to bed. Another way I front-load happiness is by saying no to volunteer obligations. I front-load on happiness when I let my kids stay in their zone of proximal development, which can mean staying home and playing board games on the weekend, rather than going to a crowded place with lots of other people.
I have no advice or helpful tips. Everyone takes their own path to acceptance, finds their own happiness.
Acceptance Brings Power
With acceptance comes the power to engage with the world on important issues. These important issues include creating a world in which EVERYONE has access to love, fun, happiness, appropriate education, and a path to follow their passions, and lead productive lives.
A Model of Self-Care
I delight in both of my children for being the people they are, and I am finding ways to help them follow their happiness. In the end, I trust that being a model of happiness and good self-care will be a gift that I give them, and that they will learn to take care of themselves in the same way, when the time comes.
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How About Just a “No-Yelling” Zone?

It’s time to stop. After 4 years of pushing the heavy boulder of mindful classroom management, social curriculum, and developmentally appropriate instruction, up the blind cliff that is my child’s school, it’s time to let it go, let it fall back. I am hoping that others can catch it and start pushing it up again. Or maybe it will just keep falling now.

I have written before about the very difficult year my child had last year. Many students in her class had a difficult year, and those difficulties stemmed from the teacher’s incompetence. No-man’s-land children like mine are the classroom barometers for how skilled or unskilled a teacher is.

A person gets a certain clarity from walking away from a place. But, this means letting go of so much: tee shirt sales, garden work days, the new salad bar, meetings that run into evening with other parent advocates. It also means letting go of seeing the faces of so many children that I will miss, letting go of so many hugs and smiles.

The school is in a situation, sadly, where it needs to work hard not to get shut down. In order to improve its test scores, it needs to, simultaneously, improve the “performance” of children who score poorly on tests, AND recruit a more balanced socio-economic base of families. That can prove challenging, in a district that offers so many choices for families. Magnets, charters, a few affordable private schools, and a growing secular home-schooling community are among the options for educated, middle-class parents who don’t want to engage in the neighborhood school system.

One way to hoodwink unsuspecting middle class families into coming to the school is to pay lip service to a method of teaching called Responsive Classroom. Teachers who actually practice this method hold a few core beliefs about children that have survived through all of the fads and flavors-of-the-month in teaching.

But not every teacher wants to conform to this, and not every teacher has the thinking skills to do so. Different teachers have responded differently to this sudden sea-change in the school’s priorities. Some have retired, in the middle of the year. Some close their doors and do what they were doing before because they believe that it works. This includes yelling at kids, shaming kids, and not having a true system of accountability. Some teachers (this is a real bee in my personal bonnett) cherry-pick the “gifted” uncomplicated students to minimize their classroom management issues, so that they can appear as though they are a master teacher. Some teachers have payed a small amount of lip-service to the tenants of responsive classroom, by erecting a “peace corner”, buying a “tattle turtle”, and tellling students to go to the “peace corner” and “work out” their difficulties. But those self-same teachers also yell at the kids, shame them and make them feel bad about their mistakes.

Here’s what nobody is doing:

  • looking at actual behavioral outcomes, like a decrease in bullying behavior, in 3rd and 4th grade
  • measuring markers of stress in kids
  • explicitly teaching social communication skills in a systematic and hierarchical way, starting in first grade
  • targeting social leaders and teaching them social leadership skills

There are a few more ways that my kids’ school, in particular, has effed things up.

They have adopted a zero-tolerance bullying mandate; however, bullying and name calling are still tolerated, but only if the middle-class white students are doing it quietly and getting away with it. My child’s friend was suspended for saying mean things. She comes from a rough background, has poorly educated parents, and very poor social-relatedness skills. I’m not saying she shouldn’t be suspended, but isn’t that punishing the victim? And then not intervening in a positive way so that the person can reintegrate into the community? And talk about alienating parents who were already alienated to begin with. And do you think the bullying behaviors have stopped?

Worse, teachers do it every day to certain children. Many of the adults do not understand the subtleties of bullying, and they think that they can treat children horribly with impunity. They do not understand that when the kids have a bully as a role model, the bullying behaviors will be replicated. Recently, I picked up my children from school and they described a situation that sounded like a prison lock-down. Adults were shouting at the top of their lungs for kids to sit quietly. They closed the doors to the schools, making the parents wait outside and the children wait inside until no one was saying anything. God forbid, the kids were talking. This is preparation for incarceration, not successful life preparation skills. When would this happen in college, or the workplace?

What I tell my children is that when teachers yell at them (and I tolerate this less and less), what has happened is that the teacher has used up all of their good strategies. But, what does it mean when it’s 9:02 a.m., and the teacher is already yelling at them?

What I am starting to think is that Responsive Classroom is too complicated. If you are a teacher, and the tenants of inclusion and modeling a dynamic style of interaction are not already a way of life for you, it will not make sense to suddenly adopt this new system. This is what I have seen. People think it’s hip and cool to erect a “Peace Corner”  in their room, and tell students to “go work it out.” That is not really teaching the students anything. That is not giving them the language to resolve conflicts or advocate for themselves. And don’t get me started on how unequally this serves children with special needs.

No Yelling Zone

 

What I am thinking is that a public school like the one my children attend needs just a few simple rules. For everyone.

And let’s start with a No Yelling Zone. And a No Shaming Zone. And if that feels like a stretch, just stop there. And be honest with us.


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Just Good Teaching

Originally posted on www.autismsphere.com by Jennifer Martin Minnelli, M.S., CCC-SLP.

Whether you’re talking about closing the achievement gap or mainstreaming children with special needs, experts have taken notice that there are some teaching practices that help children learn better and function optimally, regardless of the setting.

Challenges abound in the regular-education classroom. Teachers are beholden to the district’s standard course of study, the daily schedule, and, in some cases, mandated curriculum. Children with a variety of emotional, nutritional, physical, and educational needs are bringing their whole selves into class every day. Parents of children range from highly-involved activists to people fighting to get out of poverty, and each child brings a component of that family system to the class. And yet, teachers are expected to ensure that every child, regardless of where they come from and what they know, meets “expected yearly growth.”

We are at a place and time in our educational history where we have to seek solutions to teaching that transcend poverty, learning disabilities and cultural-linguistic differences, if we want to revive our public education system. We borrow from other disciplines, like mental health, special education and occupational therapy.  Truly innovative districts are looking at the teaching practices of their master teachers and synthesizing those best practices with what we now know about the developing brain. Here are some basic ideas for “Just Good Teaching:”

1. Create visual schedules so that kids know what to expect. There can be confusion about what a visual schedule means. To get the best results, a visual schedule should have the word that corresponds with the activity (e.g. LUNCH), and a simple black and white line drawing to accompany it. Below is a link to an example visual schedule:

Visual Schedule

2. Realize that they don’t know the routines. Scrap any idea that kids know what to do when they get to school. Spend the first weeks of school setting expectations for the class routines, from how to use the bathroom (i.e. go into the bathroom, close/lock the door, do what needs to be done, wash hands, dry hands, come back quietly), to how to walk down the hall to the library in a group.

3. Have 3-4 REALLY SIMPLE universal rules for the class. For example, a. Body stays in control. b. Eyes, ears and brain in the group. c. Use friendly words. d. Inside voice.

4. Avoid figurative language, when you give verbal instructions. Children who have a literal style of thinking or who have limited vocabulary will not understand, “Go to your chair,”  or “come to the carpet;” whereas,  “Sit your bottom down on your chair,” and “put your bottom on this square of the carpet,” may work better.

5. Help kids find a healthy, quiet way to fidget when they need to. In the adult world, we take for granted that we can regulate our own posture and alertness with caffeine, movement, food, and our technological devices. Kids who are allowed to move, in a way that does not compromise others’ learning, will attend for longer stretches of time. With encouragement, they can learn to recognize when they loose their focus, and can generate their own strategies for keeping their brains engaged.

From the minute children walk into school, they are bombarded with information that needs to be processed immediately and often requires a response. There are loud noises, like doors closing and toilets flushing. Hall monitors are greeting them and giving verbal instructions about how to walk through the halls. Other students and teachers standing at their doorways are greeting them. When they enter their classrooms, there are immediate jobs that need tending. Just walking to class can be a huge load on a developing brain’s ability to process, and for many children, it’s difficult to know which piece of stimulus should be given the most attention, and which stimuli can be ignored.

Creating a predictable haven from which to build mastery and celebrate leadership sets kids up for success. Once settled into their routines, with explicit expectations and support, kids can devote that brain power towards actual learning and developing their critical thinking skills. And that’s just good teaching!

 

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Mental Health + Perspective-Taking = Social Behavior Mapping

Originally posted at www.autismsphere.com, by Jennifer Martin Minnelli, M.S., CCC-SLP.

“A man is but the product of his thoughts. What he thinks, he becomes.” -Gandhi

As a classroom teacher or specialist in the elementary school setting, you may not think that you need much or any training in mental health. Teachers often complain that that they didn’t go into teaching because they wanted to counsel students and families. However, new thinking in the field of treatment for Autism Spectrum Disorders is giving credibility to using Cognitive Behavioral Treatment strategies as an integral part of classroom management and curriculum.

Envision a mainstream 3rd-grade classroom with 20 students. Most of the students have typical neurological wiring, which means, by that age, that they are able to sit for 45-60 minute stretches, they can attend to multi-step instructions, tune out unimportant stimuli, and complete 3rd-grade level assignments. A few of the students may be English language learners, which means that they are developmentally ready for 3rd grade assignments, but age-expected figurative (non-literal) language may be difficult for them to comprehend. A different contingent may have one or some of the following: ADD, ADHD, high-functioning Autism, and non-specified emotionally based diagnoses. Even if they are all approximately the same in terms of academic potential and background knowledge (which is not the case, most of the time), there will be a wide variability in terms of a child’s capacity to self-regulate, process information and attend in that setting.

In particular, what compounds the challenge of mainstreaming children with ADD, ADHD, and ASD is their collective difficulty with perspective-taking. Perspective taking is a person’s ability to understand that other people have different thoughts than they do, and the ability to think and wonder about what other people are thinking, and then adjust one’s behavior accordingly so that people continue to have good thoughts about them (Winner, Michelle G., 2008. A Politically Incorrect Look at Evidence-Based Practices and Teaching Social Skills. Think Social Publishing.)

When a person has trouble with perspective taking, it can be disruptive in the classroom setting. Often a child does not comprehend that when she does a behavior, like invade others’ personal space, make disturbing noises, or talk out during quiet reading, it makes it hard for others to learn. Winner talks about introducing the concept of good thoughts versus uncomfortable thoughts to children with social thinking deficits. They need help understanding, through role playing, reflective reading and comic-stripping, that some behaviors create good, happy thoughts in others, whereas some behaviors create uncomfortable, weird thoughts in others.

Enter Cognitive Behavioral Therapy (CBT). The National Association of Cognitive Behavioral Therapists defines CBT this way:

“CBT is based on the Cognitive Model of Emotional Response. Cognitive-behavioral therapy is based on the idea that our thoughts cause our feelings and behaviors, not external things, like people, situations,and events.  The benefit of this fact is that we can change the way we think to feel / act better even if the situation does not change.”

Here is an example of a strategy that deals with setting clear expectations for everyone in the class, and helping children understand others’ perspectives and the impact of their choices on others:

Social Behavior Mapping Chart

It maps out the chain of events, and explains that when we do what’s expected and desired, it makes others feel happy and comfortable, which results in positive social consequences (like smiling faces and extra privileges), which, in turn, makes us feel good and happy with ourselves. It can be posted up in the classroom for teachers and students can discuss, reflect, and even role-play during morning meeting.

Here’s an example of Social Behavior Mapping of unexpected behaviors:

Social Behavior Mapping of Unexpected Behaviors

In her book of Worksheets, Winner provides a blank Social Behavior Map for both Expected and Unexpected behaviors, for students to work reflectively with teachers to generate the feelings and consequences themselves.

In the nascent field of multi-disciplinary treatment for Autism Spectrum Disorders, experts are learning that even though a child with social thinking deficits may never act like a neurotypical child, he has the capacity to change, grow and develop his executive function, critical thinking and social thinking skills through targeted intervention, like Social Behavior Mapping. Furthermore, with improved social function across settings, they are able to lead happier, more productive lives.

For more information about Michelle Garcia Winner’s groundbreaking ideas and strategies, go to Social Thinking.

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We All Have Our Work

Lately, I have been talking with my students about their “work”. By this, I don’t mean school work, math problems, or language arts assignments. I mean, what are the things that keep them from doing their best in school, and what are the things about them that drive the adults in their lives crazy?

people at work

During one of our sessions, a student and I talked about what he thought his “work” was and what I thought his “work” was. He told me that he thought he needed to work on having a longer fuse, and not flipping out every time someone got on his nerves. I told him that part of that work was thinking before he speaks and acts, and part of that work was learning to take another person’s perspective. This is work that we will do for the rest of our lives. In this way, we were able to agree that he could work on 2 things for the rest of the year: thinking before he speaks, and less flipping out.

He is not doing this work in a vacuum, much as he would like to be. He is doing this work in a place where other students are simultaneously engaged in their own “work,” not to mention everyone’s actual academic work.

Other students are working on things like staying out of issues and problems that don’t concern them, and using I-statements as a way of self-advocating when they are hurt.

Today, I got to witness all of this hard work taking place. Student 1 made a comment that felt offensive to Student 2. Student 3 wanted an adult to intervene, despite the fact that it had nothing to do with them. If people were not focused on their work, the situation could have devolved quickly into name-calling, anger and deep adult frustration.

With a little help, Student 2 used an I-statement. “When you do XXX, it makes me feel XXX. Can you try to XXX next time?” With her I-statement, she was taking care of herself, and helping her friend understand how what he did affected her internal state. With a little help, Student 1 did the important work of listening to the I-statement and letting Student 2 know that he had heard and understood it. Meanwhile, with a little help, Student 3 did the important and very difficult work of trusting the other students and adults around her enough not to get involved.

We all moved on from that episode rather quickly and without incident.

The work is hard for everyone. Teachers have their own work that they mindfully tend to in the midst of all of this. At times, this work can take time and effort away from other seemingly important matters.

But, wow, when we are all working together, it is stunning and beautiful to see.

Jennifer Martin Minnelli, M.S., CCC-SLP

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