The Letter vs. The Spirit of The Law

Over the course of two years our family engaged many resources in our State to assist us in encouraging our District to do a better job with regard to inclusion for Thorin. One resource in particular was sympathetic. That said they were not actually helpful. I think this was because they are truly over-burdened. Recently, I sent an email to a staff member there with the link to my post on NYTimes Motherlode parenting blog. I did get a lovely response that included an offer of assistance if we ever wanted to return to school. My first thought was: If you couldn’t help us before how could you help us in the future?

I didn’t email back that response though because I believe this person wants to help. There are enough real enemies in the world I do not have to create them as well. I did respond though and in doing so I realized at this point I do not overall have hope for us returning to school. I do, however, have great hope in what we are doing at home.

Many schools need to forget about parsing what makes them compliant vs. defining their philosophy with regard to students with disabilities. In other words: Do they believe students with disabilities belong in their regular classrooms?

Below is my response for what it’s worth.

Dear __________,

I appreciate the offer.

We decided we could use savings we put aside for Thorin thus far to retain a lawyer or to live on one income and home school. We choose home schooling because he needs to learn more than anything else. And– I can guarantee he will learn because I believe he can.

There is a civil rights law that is not enforced in this country. There is no standard by which we agree what it means to “include” someone. Compliance with that law is subjective. I would argue inclusion is most certainly not throwing someone in a regular education classroom and saying, “Sink or swim”.*

This civil right is addressed piecemeal by organizations such as your own that bang away case by most egregious case. That will never bring about sustainable change. I am not criticizing you or _______. I think you are doing the best you can with what you have. It’s not enough though.

The alternative is individual family’s working in isolation with costly legal assistance through a rigged system called “due process”. Until the Department of Justice — specifically the Department’s Office for Civil Rights (OCR) comes to believe this is truly a civil rights issue worth enforcing nothing substantive will ever happen.

I do know your intentions are good and just. Best, Kari

* for an excellent reference on inclusion practices: The Paraprofessional’s Handbook for Effective Support in Inclusive Classrooms

What I wish others understood about my son with Down syndrome

March 21st is the 15th anniversary of World Down Syndrome Day and I want people to know a few things about my son. Ellen Seidman who authors the blog ‘Love That Max’ along with doing many other things and writing many other places gave me the opportunity to guest post on her blog. I hope you will follow this link to read the post. I believe you will find it worthwhile:

What I wish others understood about my son with Down syndrome

P.s. Ellen Seidman is an amazing person who truly embraces and creates community. We are lucky to have her. XXOO, Kari

Belief is the greatest teacher -

If there seems to be a reoccurring theme in my posts of late about belief and learning it is not by accident. I have written about it before: Who The Teacher, Homeschooling, and Teaching, a Child with Down Syndrome

An amazing thing happened when we started to unschool/homeschool*. We found teachers and other professionals that see Thorin as we do: educable. More over they see him as: Thorin. Their experience with children who have Down syndrome range from never to some.

In the final months of public education, Thorin was becoming a burden to the school as my husband and I pushed for more accountability in his education. One member of his team insisted upon referring to him in school meetings as a ‘cognitive profile’ rather than by his name. She praised him for being able to hold a book right side up. I wondered if “breathing” would be added to his short list of accomplishments.

The first time his first grade teacher told me: “I’m not really his teacher,” I asked, “How is that possible?”  “I have no idea what he’s doing” she said.

I could not tell if she was distancing herself from the lack of reasonable instruction he received, she was out of her depth or if she was sort of an asshole**.

My response was neutral, “Well, our son thinks you are his teacher.”

“Oh, that’s nice” she said.

Mid-year my son told me: “Help, please. Come to school.”

I started volunteering. I discovered he sat at the back of the classroom with his educational technician (ed tech), also known as one-on-one support, while the rest of the students participated in group activities. I asked her why.

“That way the other students don’t see how little he knows” she explained.

Until that moment I had thought of her as “one of the nice ones”. I also thought given her short stature I could totally take her if I said: “It’s Go Time!”. Instead I told her: “That is not a function of education. He is here to learn along with everyone else.”

There was one teacher who believed in our son. The art teacher, after seeing his photographs, she displayed a handful in the main hall of the school. She told him: “These are magnificent!” She told me: “He is gifted not for a child but gifted period. These photos could make people think differently about a child with Down syndrome.”

For posts related to Thorin’s photography: POV, Shutter Bug,Warholian Selfies, T’s Photos of Sally’s Garden  Picture This and Portrait of an Artist as a Young Boy.

Unschooling is predicated on the notion of allowing your child’s interests to dictate the path of learning. His particular interests are art and music.

Our son wanted to play guitar. I contacted a teacher with a doctorate in music who was highly recommended. He thought our son was on the young side of lessons but wanted to meet him solely because a friend of his who was a special education teacher told him that children with Down syndrome are unteachable. It would be a waste of his time.

He shared with me: “I don’t believe her. I have a diagnosis, too. People have made assumptions about me. I have suffered from it.”

The woman who teaches my son’s theater class—at our local children’s museum– told me: “I’ve had students who can’t speak English. I can help a child who has difficult talking.”

His dance teacher asked if it would bother him that he was the only boy in the class. Note: she did not ask if it would bother him if he was the only one with Down syndrome.

When I signed Thorin up for science camp at the children’s museum I asked the teacher if she thought there would be any problems. She said no problem and  thanked me for thinking of them.

No problem? Thank you for thinking of us? How could they not see all the problems and obstacles our school district saw when it came to Thorin?

Thorin is taking a science class through one of homeschool resources. I texted the parent coordinator asking if any issues. She texted back: “Glad to have him. Do you want to come early so he can meet the teacher?”

For two years we were refused by the principal at our school for Thorin to meet his teacher or aide before school started.

The first day of science class Thorin moved away from the group and sat by himself. The parent coordinator said: “If he is uncomfortable the teacher will figure it out. We want this to work for Thorin.”

The teacher told me after class: “It’s a little overwhelming he probably needed a break. My guess is he is taking it all in sitting quietly.”

Where did this lady get her schooling? Doesn’t she know that she should perceive his moving away as a behavior issue? At least that is what we were told at his old—as in decrepit and archaic—school.

Without exception the teachers I have encountered since leaving our public school system have asked the same question of me: How does your son learn best?

A question never once asked by any public school employee.

The most remarkable difference between the public school teachers we have known*** and teachers in the real world we have met has simply been the belief that our son can learn—and as importantly that he belongs.

* Very generally: Unschooling is an educational method and philosophy that advocates learner-chosen activities as a primary means for learning and homeschooling as curriculum-based. We do both.

** One of the best things about having your own blog is you get to question unopposed if someone is an asshole.

*** Some of my favorite people in the whole of the world are teachers. The one I love the most is my Aunt Nancy. I am not talking about those individuals who are dedicated and vigilant.