School

Talk to Me

by Mary on September 1, 2011

You may have guessed this, but in case you didn’t know, Tim and I are introverts. We can handle being social in very small doses, with only a few people at a time – where we can do some serious talking – but then we need a good amount of time to recover! Big parties where I don’t know anyone are by definition terrible for me. Tim has learned a bit more about being social in a crowd, but usually I’m fine if people don’t talk to me because I’m bad at small talk.

All this to say that actually, we have absolutely NO trouble talking to other people about autism, and our lives as parents of an autistic boy. AND, we want other parents to talk to us! The parents who do drop-off and pick-up for the AU classes at the J-man’s school tend to stand around and talk to each other during the wait times, EXCEPT for the new parents. It seems like this year, the parents of the kids in Pre-K (and therefore, new to the school in general) don’t want to talk. They stay in their cars, watch closely for the kids to come out, grab their kid, and GO.

I wish they would stay and talk.

We had a family night at the school last week, and I saw one of the new families there. I went up to talk to them, because I remember what it’s like to be new. The mom talked to me a little, and then mentioned that everything about autism was new to her. She had all these questions, and didn’t know who to ask. I started introducing her to the other parents in the room, because we can answer lots of those questions!

New Mom: well, we were a little late because I had to make more chicken nuggets. (In an aside) I swear I make nuggets 50 times a day. I feel like all he eats are nuggets.
Me: Let me talk to you about the Sacred Six foods that the J-man eats. Really. Yes. Only 6 foods.
New Mom: Oh gosh! I thought we were the only ones who had food issues! (tears in her eyes)
Me: No, I can introduce you to a lot of people whose kids have food issues!

New Mom: I feel like sometimes my son has some sort of odd feelings about touching things.
Me: Yes, the J-man does too.
New Mom: It’s almost like it HURTS him to touch soft, goopy things.
Me: Yep, sensory issues are VERY common with autism. The J-man has had a LOT of therapy to help with that issue, but there are still some things that he shrinks from, or actually gags when he sees.
New Mom: My family has told me I’m just “spoiling him.”
Me: No, for some autistic people, it seems that sensory input is much higher than for others. It’s almost like nails on a chalkboard type of feeling. Let me introduce you to others whose kids are working through some of those issues.

New Mom: is autism something he will grow out of? I’ve only ever seen 3-5 year olds with it at this point.
Me: well, autistic kids do keep developing and changing and learning – it’s just often at a different pace. Let me introduce you to some people who have older autistic kids.

And so on.

I just wanted to hug that woman so much! I wanted her to know that she’s not alone. I wanted her to know that the parents in that room, and the parents she sees during drop-off and pick-up are NOT judging her. I wanted her to know that talking to other parents can help, if not with specific tips, then at least with empathy, because we live it too.

I wanted her to talk to me.

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Wordless Wednesday – First Day in Kindergarten Edition

by Tim on August 3, 2011

First Day in Kindergarten

First Day in Kindergarten

First Day in Kindergarten

First Day in Kindergarten

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Routines, Predictability, and Just Getting to School in the First Place

by Tim on February 14, 2011

[Thanks to Danette Schott at Help! S-O-S for Parents for including this as part of her February "Best of the Best" feature on school issues as they relate to invisible special needs! Go read all the great posts she's collected this month from some top notch bloggers, and while you're there check out the previous editions of "Best of the Best".]

Getting to and from school has often been quite the adventure for us over the last three years. We’ve enjoyed mornings that are smooth as still water, and we’ve survived mornings that have involved broken objects, personal injuries, shot nerves, and crying from adult and child alike.

The uninformed masses have been known to ask what a ‘normal’ morning looks like for us. After I pick myself up off the floor from laughter, I might offer the response, “Normal is a dryer setting, and ours still leaves the clothes damp. But I can tell you what gets us out of the house in one piece more often than not though.”

Children like ours often find comfort and stability in routines, so try to keep things as predictable as you can in the mornings. Don’t overdo it, though, as you want your child to continue learning and practicing adaptability. However, always start from a place of trying to be understanding of their needs. What may seem trivial and annoying to us may mean the world to them. Consider all sides of the equation as you develop and adapt your routine.

If you currently don’t have much of a regular morning routine but you think this is even remotely possible for your family, work on developing one. (If y’all have newborn triplets, for example, you may be on your own.) Just remember that even a change from chaos is still change for our kids, so whatever you do, introduce a schedule at a pace that moves your family toward your goal without pushing too hard. It’ll be challenging enough at first, and your kids might react strongly, but stick with it. In the end, it’ll get better, and you’ll be glad you did it.
[click to continue…]

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Autism Classroom Student-Teacher Ratios – A Plea for Information

by Tim on February 4, 2011

I’m doing research into a situation that has serious implications for a local school district. Without going into all the gory details, this very large school district is seeking to increase the number of children in self-contained, structured, Pre-K classrooms for students with autism without increasing the number of teachers. It is expected that the number of students in each classroom will increase by up to 50% within a year or so, and all additional students will also have a diagnosis of autism.

This is obviously very bad, and the negative impacts on these children are too numerous to even list. But this is where you can help.

Those of us organizing to overturn this policy need examples of school districts in the U.S. who started off having fairly reasonable student-teacher ratios, raised those ratios presumably in an attempt to save money, and then ended up with significant negative impact on the students, the classrooms, and the school district. By that last point I mean: students missed more IEP goals, classrooms suffered serious safety problems, students struggled in successive years because the new environment slowed their developmental progress, a significant number of parents sued the school districts, things got so bad that the school district either had to retract the policy or provide numerous additional services or aids to the students because of lawsuits, the end result cost the district more money than if they’d just left things alone in the first place, etc.

If arguing against the policy on the basis that it’s just educationally wrong for these students isn’t enough – even though it should be – then one based on financial costs supported by evidence of what’s happened in other school districts who’ve tried this may gain more traction.

So, I’m putting out a plea for your help in crowdsourcing this research project. I’m looking for the name and state of any school district where this has happened, a description of what happened, and supporting information somewhere online that we can collect and present. You can either post in the comments here and e-mail me privately at tim@bothhandsandaflashlight.com.

I am grateful for any help you can provide! Thank you!

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I Still Have a Dream for Autism

by Tim on January 17, 2011

This is a repost of something I wrote for Martin Luther King Day last year. I hope you find it meaningful.

I humbly ask Dr. King’s forgiveness for borrowing from his eloquence and for the meager quality of my own words as I draw from his gift to us, one of the most transcendent speeches in our history. All generations after him will be asked to tell about their dreams for our world. Here are some of mine.

Our futures are inextricably bound together. We cannot walk alone. And as we walk, we must make the pledge that we shall always walk forward. We cannot turn back.

Whenever local, state, and federal governments and the schools within our communities give us and our children so little and then tell us to be satisfied that we even get that, let us say, “We are not satisfied, and we shall not be satisfied until every child has a fair chance to realize their potential and all prejudice is washed away by the tidal wave of our determination and love.”

Let us invest ourselves fully in our families, go into our communities, and do the hard work that has to be done and not wallow in the valley of despair.

Though we face the difficulties of yesterday, today, and tomorrow, I still have a dream.

I have a dream that our children will not be judged by what they can or cannot do but valued for who they are, just as they are.

I have a dream that whenever someone either cannot or is not allowed to speak up for themselves, the very stones in the ground shall cry out and we will all stand and proclaim the immeasurable worth of all.

I have a dream that all persons with disabilities will be treated as equals and afforded equal rights and access in every aspect of their lives.

I have a dream that all children will be treated with respect and provided the education and services they need to express their gifts to the fullest.

I have a dream that wherever injustice is committed against an innocent child that we will respond tenfold with unity, conviction, and action.

I have a dream that people will have access to the vocational training and assistance needed to work and live independently and follow the path they feel called to.

I have a dream that schools will not have to hold bake sales and raffles to pay the bills and that teachers won’t have to buy supplies from the money in their own pockets.

I have a dream that teachers and therapists will be valued and paid at a level nearer to all the miracles they perform everyday.

I have a dream that more money will be spent on services and support for both children and adults.

I have a dream that whenever any of us begins to fall there will always be another to help them back up again.

I have a dream that instead of judging we will take the time to understand.

I have a dream that what unites us will be stronger than what divides us.

I have a dream that we will always be thankful for those who started on this path before us so that we might have faith that we can walk the road that still lies ahead of us.

I have a dream that no one will ever again be forced to choose between getting care and services for their children or buying food.

I have a dream that everyone’s voice shall be heard, regardless of whether it comes out of their mouths, their hands, a computer, or a picture board.

I have a dream that where so many now see despair, damage, and burden that we can instead all discover and proclaim hope, beauty, and opportunity.

I have a dream today.

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The Great Pumpkin Story

by Tim on October 25, 2010

Today the J-Man went back for his first day of school after the 3 1/2 week fall break, which incidentally is why we’ve posted so little lately. Two kids running amok, some travel, being buried in work, a round of a stomach bug, and the normal life chaos will do that to you.

When he goes back to school, there’s always the question of whether he’s regressed during the time off and how long it may take to get back to where he was before break and into the groove of things. We usually hope for a few days. Last year it sometimes took the whole nine-week term…

But today we got this story from his teacher. She should warn me about sending me a joyous message that I might read outdoors because I busted out with the happy tears and then wondered whether passers-by thought I was seriously unstable. That’s OK; it’s more than worth it!

So today we were sitting at the track waiting for a few kids to finish their laps. J-Man was sorta in a yoga position, not stressed just comfy after his long walk. I started asking a few kids about the pumpkin patch. All of a sudden, he popped up and said “I” with a huge smile on his face. So I said, “J-Man, did you go to the pumpkin patch?” He said “I” again. So I cued him with pictures “yes or no. Did you go to the pumpkin patch?” He said “yeye” and patted his chest. Then I said “Did you get a pumpkin?” He patted his chest and tried his best to say pumpkin then said “yeye” again. I was melting with his excitement! He was so happy and proud of himself. It was a moment I will remember forever! Your son makes me honored to be a teacher.

And we are honored that you are his teacher. We don’t have enough words to thank you.

And I am so proud and happy I don’t know what to say!

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Turn it on!

September 25, 2010

In the past few days, the J-man has learned to turn on (and off) lights and a fan. I’m fine with the lights flashing, but the fan is a little scary, so we leave it unplugged when he’s going to be in the room. It really seems to be an “all of a sudden” insight [...]

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Dreams of One True Autism Resource and Getting Beyond Oral History

September 17, 2010

Last night we had our more-or-less-once-a-month family night at school, which basically means many of the parents from the three levels of autism classes (Pre-K, K-2nd, 3rd-5th) get together at school either with the teachers or with outside experts from the community and discuss a particular issue that we’re all struggling with. Not surprisingly, the [...]

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