Preschool

[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…]

{ 1 comment }

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!

{ 2 comments }

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!

{ 5 comments }

Turn it on!

by Mary 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 for him, that HE can make those things happen. Before, he would take our hands and lead us to whatever he wanted turned on, possibly even put our hand on the switch… but wait for us to actually do it. Not anymore!

It seems like a lot of things have suddenly turned on for him. Part of the J-man’s IEP is that he will do the motions in a song 50% of the time. This is actually a goal from last year, simplified, because last year the goal was 80%, and he just couldn’t do it. It wasn’t like they didn’t work VERY hard on this goal… he just wasn’t proprioceptively ready to do it yet. He understood what they wanted him to do, and we worked at home on signing along with Rachel and such, but really, it just wasn’t happening.

Lately though, he’s been doing motions with songs! A lot! I realize this sounds like very little to some people (and watching Dale Jr instinctively do motions makes me understand how people are incredulous that this is a goal on an IEP), but it’s HUGE for the J-man.

He’s also suddenly trying to sing along with certain songs. We watch a lot of Pinky Dinky Doo here and Pinky sings quite a bit during the show. Not only that, she uses the same phrases when she’s trying to come up with a solution (“It’s time for me to think big!” “Come on Pink, THINK!”) The J-man is doing his level best to speak along with the phrases she commonly uses, and he tries to speak along with all of the songs – while requiring Mama and/or Daddy to sing along. I realize that this is echolalia, and that the goal is eventually spontaneous language, but from what I gather spontaneous language comes after echolalia for most kids in language progression.

It’s like a switch has been flipped. And I say, TURN IT ON!

{ 4 comments }

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 issue we choose to focus on for the month always fans out into a multitude of other things we’re dealing with.

These are always great evenings, both for learning so much from each other and for fellowship with other parents. It often connects us with some great resources in the community, too. For example, we’re meeting in a couple of weeks with the special needs trust attorney we connected with at a previous family night.

One major issue that dawned on me last night was that without these nights at school there’s so much valuable expertise and information we’d miss out on. The collective experience between the dozen or so families that regularly come to these, the teachers and therapists, and experts from the community who come speak to us is amazing. We get together in the room and share what we know, have learned from our own experience, or found out from our research. We are in a sense passing down an oral history of what we’ve learned to each member in our little tribe of great parents.

It’s a godsend that we can do this, but it’s also incredibly inefficient. We’re all the time reinventing the wheel. Someone goes through the process of filling out paperwork for disability services or getting a handicap placard or resubmitting claims to Medicaid, learns a lot, but that learning isn’t easily preserved. So the next person who goes through it may not know which of us to ask, tries to get some part of the way down the road themselves, gets as lost as the person before them did, gets frustrated, and so on. Eventually they’ll find a person who has already been through whatever the problem is (well, assuming someone has), talk to them, and start to get unstuck. But in the meantime, so much time and energy is lost – time and energy none of us have to spare. Facebook groups, listserves, forums, Twitter, blogs, etc. all have an equivalent problem – little of the information posted is preserved in a way that can easily be accessed later by the entire autism community.

But how do we preserve this knowledge? I’ve given serious thought to developing a wiki for our school. That would at least be a start. Obviously there’s information everywhere online, but that’s both a blessing and a curse. There’s so much information scattered everywhere, but it’s rarely that organized, often out-of-date, wrong, or perhaps even intentionally false, and quickly too overwhelming to do anything with. I don’t need eleventybillion pages of information about something; I just want someone to give me the freakin’ answer to my question.

I dream of a central repository of process knowledge, “How do I do X?” sorts of information and instruction sets. Yeah, I realize that a lot of our challenges aren’t easily reduced to instruction sets, but a number of things can be. For many other issues, at least people can generate a few, high-quality ideas to get people started or nudged a few more feet down the path. I know it’d be a monumental undertaking, but collectively we are wasting God knows how many billions of hours a year trying to find information we need about how to do everything from the simple to the complex.

Would it be possible just to have some resource that filters out all the roaring noise about vaccines, causes and cures, controversial treatments, and whatever else and just gives practical, day-to-day information we need like how to fill out this frackin’ form for disability services or what the hell all these acronyms mean? The end result of all of our yelling and infighting and carrying on is that this sort of resource does not exist because what energy we have left over after being parents is consumed by all this other stuff. And it’s great that we are spending so much time and effort on the critical work of educating the world about autism, but it’s also essential that we remember to educate each other on how to live and do the best for our children.

I know it’s unrealistic to expect one site to handle everything, but humor the ideal a little. Even the process of aiming toward that goal should yield something a bazillion times better than what we have now. I’d rather have potentially ridiculous and unrealistic goals than have all of us keep pounding our keyboards in frustration.

Anybody interested in talking about this further? It would obviously be an enormous undertaking requiring a whole lot of people, but there are more than a whole lot of us out there and I know we’re all tired of banging our heads against our computers trying to find what we need. Maybe one of the greatest gifts we can give each other is saved time. Together we are stronger than we are on our own.

Oral traditions eventually developed writing, libraries, and ways to communicate large quantities of information quickly. In a way, maybe that’s a roadmap for us, too. Perhaps we don’t even need a map. Maybe all we need is to just sit down and start writing and connecting the dots for each other.

{ 7 comments }

One Inch Closer

by Tim on August 26, 2010

The journey of a thousand miles begins with one step. – Lao Tzu

We recently had our annual IEP meeting, which we are thankful beyond words is actually a fun experience for us. We feel like we completely lucked out in getting great teachers, therapists, parents, students, and administrators!

While the J-Man had several very rough patches over the last school year – precipitated by becoming a big brother and realizing this little person in the house was actually staying – he did make great strides in some areas. And we are so happy and proud of him that he’s starting off this new school year with a bang.

We brainstorm his educational goals for the coming year with his teacher during the couple of weeks prior to the IEP. We don’t officially write anything until it’s time for the actual IEP meeting, of course. Brainstorming beforehand speeds up the meeting. We just start out with whatever array of goals we have for the coming year and then look at which ones are appropriate for the IEP. Examples: “We’d like for him to eat some new foods” isn’t really an educational goal let alone a measurable one, but it’s an informal goal we know we’ll work on together at home and in the classroom. “The J-Man will imitate up to 8 motions in familiar songs/fingerplays with minimal prompting 50% of the time” is one of his actual goals for the next school year.

Not surprisingly, those educational goals for the IEP are for areas in which he is ‘behind’. As we’ve said numerous times in the past, we have no idea what a ‘typical’ five-year-old is doing at this age to have some benchmark to work from in creating those goals. So we just list everything in our brainstorming and figure that part out later.

We already knew his reading skills have been above, if not well above, age level for some time. With him being only minimally verbal, it’s hard to know with much precision. As a result, we’ve not had any reading goals in his IEPs. Over the last year, he’s been able with decreasing assistance to write a couple of letters, particularly ‘E’ and ‘F’, and he’s working on some more. (The school uses the Handwriting Without Tears method, which has worked brilliantly for him and the class.) So a goal Mary and I put on one of our lists was to expand his writing skills to additional letters. What we didn’t realize initially is that the J-Man’s writing skills are pretty much at age level right now! Woo hoo! That’s news you love to hear! Of course we’ll be working on those additional letters, but we can cross that off the formal, IEP, educational goals for now.

There was a specific achievement we were particularly proud of him for. He’s graduated from his fine motor skills work with the occupational therapist! He’s able to do the various ‘age-appropriate’ tasks asked of him! He’s even renowned for his wild finger dexterity because he’s been known to hold a bunch of snacks in his hands and manipulate other objects at the same time. To think that we started years ago where he refused to even hold anything and then struggled to learn every new task because of all the fine motor planning and sensory revulsion involved. This really is a momentous achievement for him. We are so proud!

Sure there are a lot of areas in which he still struggles, but that’s OK. We’re getting there, and he’s bravely working to overcome all the obstacles still in front of him. It’s important for each of us to celebrate every achievement our kids make no matter how seemingly small those may be. To our kids they can be like winning the Super Bowl. And we should jump up and down and run around in the confetti with them.

Every great milestone they reach comes from the seemingly unending line of inchstones our kids have strung together, one hard-fought step after another. One more second of eye contact today may be one inch closer to more comfortable social interactions as they get older. Just getting the J-Man to put his lips together as one of a number of things that have to happen to form the ‘p’ sound is one inch closer to better communication. A bite of a different food, sleeping 30 minutes longer, a rare embrace, a beaming smile, a calmer trip to the store, and any of a multitude of other victories bring us one inch closer to our kids being able to express their wonderful selves as completely as they can.

This is an ultra-marathon we’re all running, but if today or tomorrow or whenever we get even one inch farther down the road, someday we’ll get to points like we just had when we look up and realize we just tripped over a landmark. We can look back in the direction we came and see how far we’ve come. And then we can face forward again out into that unknown and say like the explorers of old, Well, we made it this far and we’re still in one piece. Let’s keep going and see what’s next.

{ 2 comments }

If ignorance is wisdom, we’re all gods here

June 3, 2010

“The doorstep to the temple of wisdom is a knowledge of our own ignorance.” – Benjamin Franklin We have been people of extremes around here lately. I’ve been burning the candle on three ends with work projects and am at that stupid kind of tired right now. Mary has been going full on at work [...]

Read the full article →

Like a candle

December 5, 2009

For the past few days, we have been schedule freaks. OK, everyone except Dale Jr. He does what he does, when he wants to do it! For everything else, we have pre-planned, pre-made where available, and pre-decided, all before the kids get out of bed in the morning, or after they go to sleep at [...]

Read the full article →