Posts tagged as:

Blog

The Color Purple

by Tim on September 19, 2009

Given the struggle things have been lately, I’ve needed as much inspiration as I could find to help refill my bucket. I have a half a zillion autism parents blogs bookmarked in my RSS reader, and I am woefully behind on them. But that’s one of the places I often go to find words I need to hear.

With so many of you, we read your blogs for both inspiration and realism, hope in things not yet seen and practical ways of dealing with what we see right in front of us. You have helped make us better parents and better people.

I’ve been thinking about creating a separate blog where the posts are primarily links to the great stuff we find on your blogs. You all write such amazing things!

Which brings us to such a post for today. MOM – Not Otherwise Specified (MOM-NOS for short) wrote “The purplest” , the story of her son’s 10th birthday. No commentary needed, which would detract from its beauty and perfection anyway. Just go read it. Cry, cheer, and let it make your day like it did mine.

{ 1 comment }

I’ve been following a series of brilliant posts written by Bev at Asperger Square 8 about her reflections and development of a checklist regarding neurotypical privilege.

For parents like us who live in a very insular world of toddlers and early elementary school children, we tend to completely miss the broader conversations going on about what kind of society and culture our autistic children are growing into. And by being so focused on everything going on in the present (though understandably so) we also miss out on seeing all the possibilities that are waiting out there for our children’s futures. Within the chaos of everyday life, perspective is hard to come by. But this – among many other reasons – is why if you aren’t reading blogs written by autistic adults, you should be. (Asperger Square 8 can – and should – be one of your first stops.)

But enough of my typical rambling preamble. Check out her latest draft of “The Checklist of Neurotypical Privilege” – it’s eye-opening and challenging and brilliantly written. And for me at least, it is one of those landmark, defining pieces of writing I’ll be coming back to over and over again for both a swift kick in the butt and some real perspective on how to be the best possible parent to the J-Man and advocate for autistic persons of all ages.

Biggest lesson I’ve learned so far from reading her work? I have a lot to learn.

Note – You should be able to follow future revisions to her checklist at http://aspergersquare8.blogspot.com/search/label/privilege.

{ 4 comments }

This Little Light

by Tim on May 30, 2008

I originally wasn’t going to weigh in on the recent, reprehensible treatment of Alex Barton by his kindergarten teacher in St. Lucie County, FL because it’s been written and blogged about at length all over the Web. I didn’t really know what I could add to it. But prominent bloggers who write about issues related to autistic children are calling for all who stand with Alex and his mother, Melissa Barton, to post their thoughts and show solidarity both with them and autistic children everywhere.

To briefly catch you up if you missed this, Alex Barton is a five-year-old boy on the autistic spectrum who – I can’t believe I’m writing this – was voted out of his kindergarten classroom after his teacher, Wendy Portillo, polled the class about whether they wanted him removed from class for the day. The class voted for him to leave by a count of 14-2. I wish I was talking about some alternate, bizarro, Survivor-esque universe, but I’m not.

[To catch up on the latest news, here's an article from the Palm Beach Post. There's a great post at Asperger Square 8 that you also must read.]

For what my thoughts are worth, here they are.

One of my biggest fears for J-Man is that other kids will regularly bully him in school just because he is ‘different’. Honestly, I fully expect it, and the hurt I already feel is terrible. He most likely will start preschool in our county’s autistic children’s program this fall. I confess my breathing gets shallower just writing about that. This will be a major transition for him, obviously, and I don’t need the fear of bullies making that worse. But that will be something I’ll have to deal with.

When I read that afterwards Alex kept repeating “I’m not special,” my heart broke. I tried to imagine J-Man sitting in the floor repeating those three words over and over again. I couldn’t. It hurt more than I could bear. Even writing this hurts. I can’t imagine being Melissa Barton right now.

As parents, we need to know that we can count on our children’s teachers, and for the most part, I believe we can. J-Man has had excellent teachers and therapists so far, and we are thankful every day for them. We need to know that people at our schools will be there to help our kids be the best they can be and serve as a voice that counters bullies and other people who might belittle them. We need to know we can count on them to treat our children as special and uniquely wonderful, not fear having to count them among the bullies.

Regardless of what anyone believes about children inherently wanting to rebel against their parents and adults in general, adults still have an incalculably powerful influence on them. When an authority figure teaches children, especially at that age, that excluding people who are ‘different’ from the community is OK, what do you think they are learning? What do you think that will translate into as these kids progress through school and into adult life? What kind of future are we creating as a result?

In a world overflowing with messages to exclude and reject those we do not like, those who are different, and those who ‘make us’ feel uncomfortable, there must be voices that proclaim the inherent and immeasurable worth in each person. We must be those voices.

Every kid needs the authority figures in their lives to accept them where they are. That doesn’t mean we’re not supposed to set boundaries and have rules and expectations. We start with a fundamental acceptance of the truth that every child, regardless of their abilities, has infinite worth. That is the foundation we must build everything else off of.

There are truths in our society that are self-evident and inviolable. We don’t get to put these things up for a psuedo-democratic vote. You don’t get to decide Alex’s or anyone else’s innate worth as a person and member of our society. That kind of world shouldn’t be allowed outside your TV. If you watch that kind of junk and take it seriously as something to emulate in your ‘real’ life, it’s time to go bury your TV.

In case I haven’t made my point clear yet – You don’t get to extinguish his light or anyone else’s. Period.

Shaming like this just leads to greater and deeper shame, creating this endless, horrible, destructive cycle. Kids who have special needs will get enough shaming in their lifetimes to make our hearts ache every day, if not every hour or minute. They need to know we’re sticking up for them.

They need to know that the people who love and value them simply for who they are will be ready and able to champion them no matter what. They need to know that our voices are stronger than those who either through intention or ignorance would tear them down. I hope in some way that my words will help him know this. And I hope every day that I will have the courage of strength and conviction to stand for them, no matter whose children they are.

There are lines you simply do not cross, and in this act, this teacher crossed it. As parents, we must hold that line without compromise against anyone who willfully or ignorantly breaches it. We are the first and last line of defense for our children. If not us, then who will?

What do I think should happen to Ms. Portillo? Schools have zero tolerance policies toward students, and I think teachers should have similar expectations and consequences for such egregious actions. She may just have been poorly trained and made a ridiculous error in judgment. I don’t know. And at the moment, I’m having a hard time caring about the difference between intent and poor decision-making.

Regardless, I think termination of her employment and suspension of her teaching license would be the minimum I would ever accept as a parent. If she finds some way to show by her actions that she has earned the trust needed to be a teacher again, then I believe in reconciliation, but I imagine that will be a long time coming. But my advice to her would be, don’t be surprised if many people neither forgive nor forget. You just don’t mess with our kids, and we won’t take ignorance as an excuse.

I try hard to find something to build from in every situation, no matter how awful the whole thing seems. Here’s what I found to hold on to from all this.

I’m heartened by the overwhelming support and action that has flowed forth from parents and bloggers of every kind from every corner. The world of autism has many factions, many controversies, and much disagreement, but mess with our kids and we will act as one voice. Our children are more important than our differences, and this has reminded us of that.

In the Internet age, we are serving notice. Acts such as these will find the light of day. We will make sure of it. We are watching and listening. We aren’t some tribal council; we are the entire village. We have spoken, we are speaking, and we will continue to speak until our children are treated with respect and dignity.

Given the challenges we face every day, we do not give up easily (or at all) and we have developed incredible endurance. We’ve had to. Autism is an endurance event. It requires all of who we are. We’ve learned that this is what it takes to help our children grow and thrive. And we recommit ourselves to it every day, by both necessity and by choice.

I wish my son didn’t have to work so hard at everything, but he does and does so bravely. He inspires me every day. If I can love him through his challenges by the sheer force of my will, I will. I celebrate him just for who he is. He has become my teacher. Maybe when this teacher decides to become the student for a while and learn what all this means, she will understand what all the Alexes of the world have to offer us.

Also, two kids – for whatever reason – voted against this abominable act. It’s been 30 years since I was in kindergarten, but I don’t recall going against your peers being any more popular then as it probably isn’t now. I don’t know their motivations, reasoning, or feelings about their choice, but I applaud them regardless. My hope for them is that their light of compassion, decency, and their sense of right and wrong is such that no teacher, adult, or peer can ever take that away from them.

I close with two messages.

To Melissa Barton – There’s nothing I can really say that could possibly relieve you of what you have to carry right now, but I will say this. We’ve got your back. You are not alone.

To Alex Barton – You are wonderful and special and perfect just the way you are. You are unique in all the world. Don’t let anyone ever tell you otherwise. Let your light shine. Let it shine, let it shine, let it shine!

{ 6 comments }

Hysterical Blog

by Tim on March 3, 2008

I found the Amalah blog and laughed till I almost cried. Her son is in Early Intervention too with speech delays, sensory issues, and the like. It really helps to know other people are out there struggling through this. I so needed a good laugh after this past week.

A bucket of Advil hasn’t put a dent in the tent-stake-through-my-eyeballs headache I’ve had lately. Some laughter seemed to help, though. Thanks!

{ 0 comments }