One Giant Victory, Whole Lotta Meltdown

Ever since Winter Break of James' seventh grade, his school situation has gone from okay to bad, to awful to bring in a lawyer. I have been fighting and advocating extra hard for him for over a year. To have him do actual school work, instead of colouring book pages (no lie). For his teacher to show up to class so the aides did not have to try and make lesson plans. Actual speech therapy instead of lip service lessons. For his new aide to be an aide, instead of a babysitter. Inclusion in school field trips and back to school night (complete FAIL on that last one and the teacher showing up, BTW).

The new school district found the "best" school failing to comply with his IEP - no consistent aide for him at the new campus, no quiet places ... basically no accommodations at all for his 8th grade year. The principal zeroed in on him around and demanded in the first IEP meeting to have my son declared vicious and a danger to others. And that was with my lawyer sitting right there. To use current jargon, we couldn't even. All this while I was also dealing with the death of one close family member and another battling surprise stage 4 cancer, which not only impacted myself, but both my kids.

For James, I have been on a Mission to get him into a better school. The lawyer and I found one. It's a private school. After a saga of I Can't Even, the district offered placement there. Yowza!

Five programs. two school districts, and a private school later, James has finally landed in a program that is nurturing, supportive, and bursting with resources to help him be successful.

He lasted approximately 1.5 days of summer program before launching into testing behaviours. Throw in ABA services after dinner and starting at the same time as summer school, a week into recovery from two tooth extractions under sedation, and a being caught in a frigging ROCK FIGHT at our apartment complex ... and James wound up the week with Incidents on a school field trip: eloping into a road, trying to climb onto train tracks (miniature, and the train was not running), and hiding in the bathroom, not making good language choices.

Thanks, Autism Dad! 

These are the times I can't even cry. I just want to beat my head against the wall and repeat "no-no-no-no!!!" Until I can't think anymore. But I can't, because I have to finish work. Then be calm as I pick James up and talk with his teacher and deal with the meltdown stimming. All weekend long.

Laundry time exploded into swearing, plastic water bottle vengeance crushing, yelling sessions in the closet, screaming in the bathroom (with the fan on, like I would not notice), and, four hours later, clean laundry and many "sorry-sorry-sorry Mother"s.

But there were also fun trips to the Farmer's Market, seeing James enjoy spending his allowance at the Dollar Store, seeing people I don't know at the apartment complex smile at James and greet him with "Hi, James!" The good people who are always there somewhere in the public school arena. The calmness and positive attitudes at the new school. The lovely drive together to go look at the deer (fauns!) and vineyards.

And this week? Better. And so it goes.

Fighting to Protect Endangered IDEA

What Is IDEA?

From Wikipedia: "The Individuals with Disabilities Education Act (IDEA) is a four-part (A-D) piece of American legislation that ensures students with a disability are provided with Free Appropriate Public Education (FAPE) that is tailored to their individual needs. IDEA was previously known as the Education for All Handicapped Children Act (EHA) from 1975 to 1990. In 1990, the United States Congress reauthorized EHA and changed the title to IDEA (Public Law No. 94-142). Overall, the goal of IDEA is to provide children with disabilities the same opportunity for education as those students who do not have a disability."

What's Happening with IDEA?

The promised 40% funding from Congress has not delivered, and decreases as levels stay stagnant (or are cut) and the need for services covered under IDEA skyrocket in public schools. I have seen the struggle to retain and train qualified educators and paraeducators in our local public school districts. It's become harder after fire destroyed a significant chunk of housing and increased cost of living in our area.

Our current head of education, Betsy DeVos, has been consistently trying to weaken or defund IDEA ever since she took office. Not only is she grossly unqualified to make decisions about education due to a lack of experience with the public, schools, and education, she doesn't care about the kids in public schools - especially the costly ones with special needs. She pushes charter schools, which may sound like a good idea at first but upon closer inspection basically shifts any responsibility for enforcement of IDEA off the shoulders of the federal government and leaves you at the mercy of people trying to make money off education. It's sneaky, and a huge leap backwards, widening the cracks our kids fall into between supports and services into something more like the Grand Canyon.

What can I do?

Contact your representatives in Congress and urge them to fund and protect IDEA. Show you understand it and that you consider it's enactment important for you and your community.

In March 2018 a Bill was introduced to increase funding and support for IDEA, S.2542 IDEA Full Funding Law. It has been referred to the Committee on Health, Education, Labor, and Pensions (that's Betsy DeVos, incase you were wondering). In March 2019 an amendment bill to the IDEA Act introduced, S. 866 IDEA Full Funding Act. Write and urge your representatives to support these bills.

Not sure who is your Congressional rep? Here's a website to locate your congressional representatives.

Why is IDEA Important?

• Programs that benefit all students are likely to be cut.  Each year that Congress fails to meet its 40% promise, districts are forced to pay a higher proportion of the special education cost. Schools and districts have been facing budget cuts for years and there is a scarcity of resources in many of our nation’s schools.  As a result, districts are forced to make hard decisions about which programs to fund. Schools and districts are sometimes forced to divert funds from programs that serve all students (including students with disabilities) into IDEA. This should not be a choice schools and districts are forced to make.
   
• It becomes harder to recruit and retain qualified teachers.  Over time, as districts are forced to put more funds into IDEA, they are unable to use those funds to increase teacher salary, decrease class size, or update classroom resources. The continual funding crisis makes it hard for schools to invest in the types of activities that will bring in and retain the best teachers.
    
• Our schools cannot thrive until students with disabilities succeed.  It has long been proven that including students with disabilities in our general education classrooms benefits all students — those with and without disabilities. When schools focus on the success of students with disabilities, the school as a whole thrives. Until they have the resources they need from the federal government to fully fund IDEA, schools will continue to struggle to provide the comprehensive and high-quality services that students with disabilities deserve.

(from National Center for Learning Disabilities)

First Passenger Train Ride

James loves trains. He has been on train rides before at Disneyland:

Travel Town:

Little Steamers:

But on the West Coast, there have not been a lot of chances to experience passenger rail. That changed this weekend with the opening of SMART. We took an afternoon trip from the Sonoma County Airport to downtown San Rafael and back. Standing room only, most of the way. Luckily, we arrived early enough and got seats.

What an exciting was to spend a Monday. Here's to more train trips!

Gift Giving and Autism

Gift Ideas for Autistic Kids

One would think that after almost 9 years of making Autism's acquaintance, I would be better at this. Alas, the thrill is still there: What to get for Christmas and James' birthday (which lands about 2 weeks after Christmas)?

With autism in the mix, I need to blend several areas of information together and throw "normal" out the window. It's not such a bad thing.

Consider

There are the things that James likes: Caillou (still, heaven help me), Curious George, Thomas Train, Baby Einstein, Upside Down Show, spinny things, gears, music, Pixar.

James' abilities: He is young and playful for his age, has some fine motor skills strengths and challenges, processing delays, and a fickle attention span. His dream is to play games on a Playstation, iPad, iPhone of his own for hours at a time and play arcade games like speedboat racers. He hates flies and gets anxious with outdoor sports and staying with a group.

There are the typical gifts for almost 12 year-old: iPad, iPod touch, cell phone, computer/Xbox, clothes, science/art/magic kits, skate boards, bikes.

There are the fun classic kid presents: Lego, puzzles, solar-powered toys, build your own computer/robot, books, movies, sports gear, toy vehicles, yo-yos, kites.

Discern

Your kid + autism = unique for them gifts. Here are some Christmas presents ideas for 2016:

• All 3 Toy Story movies in one DVD collection and Inside Out: letters to Santa and Social Communication therapy, thank you!
• Maps from AAA: he has been carrying them all over lately, placing cities and travel routes; thank you, CSAA membership!
• This nifty kids smart watch:
  VTech Kidizoom Smartwatch DX, Royal Blue (2nd Generation) (seriously, just read the features - I am jealous!). James will love the voice and picture filters!
• This smart little DIY marble run: After a frustrating experience with the taller, bendy multi-piece ones, I am hoping for true multi-time use and enjoyment with the Kengadget Crazy Ball Marble Run Set

For a birthday:

• music lessons (probably piano with a local family that teaches music out of their home)
• another movie -- digital purchase because...
• a Kindle Fire with a case

Your mileage may vary with a Kindle. I thought long and hard about it myself, as James has smashed some of his most favourite Apple electronics lately when in a temper and I will not replace them. The Apple IDs and iTunes are driving me nuts with their user unfriendliness.

The Kindle is not locked down very much, so I will let him use it on a limited time basis for good behaviour. It will be his. I am not getting the special kids' subscription or a warranty. I am making it very clear that he breaks it, no more Kindle. It was $33 on a Cyber Monday special with free shipping so the cost is not bad. He can use my Prime membership to watch movies and use his PBS Kids subscription, take videos and pictures, access digital books from our public library. I find it very easy to add apps and borrow/purchase/download media. Did I mention I got a really good deal on this?

There will always be clothes too, like nice big boy PJs, shirts, and pants. James is growing like a weed!

Birthday Boy is Eleven!

James had a very quiet birthday this year. He was sick, the weather was cold, and we were all pretty wrung out. He had presents, we made his birthday cake together using his favourite Lazy Daisy recipe. We saw The Good Dinosaur, the odd Pixar product and enjoyed pizza from Round Table.

James liked his books, movies, and Edward, from the Thomas Train Engine series. He liked the Star Wars movie we took him to, once he was feeling better and crowds had died down a bit.

 

His real birthday party is in a couple of weeks, once the playoff tournaments have finished at our local bowling alley. Happy birthday, James!

Magic Marker Monday: "Big" Top

Michelle's post a couple of weeks back reminded me of a great little craft the kids did for Carnival Week at Summer Camp - the Paper Circus!

Paper people and tent parts were coloured and then cut and pasted.

James liked the the tent. He was not that interested in the people. This has me thinking that he'd probably like making a circus train, and maybe a station. Hmmmmm ....

I love how he decorated teh stripes with numbers!

For more great masterpieces or to share some of your own, visit
5 Minutes for Special Needs for more Magic Marker Monday.

                                
  

People Who Shine

For various reasons, I have been reflecting on a line from one of my favourite movies:

"Character is what you are in the dark."
Buckaroo Banzai rocks, just saying.

Yes, things are dark. And then there are people who come across our dark patches, and shine. They can mean so much by just being who they are.

We were so lucky to have met with one for James' second aide last school year. She wrote simple affirmations for him that made all the difference. Really, the words written on a 3x5 card that read "I am smart" and "I can do this" made a blazingly positive change for the better for him in school, and encouraged me to change direction myself.

The man at the craft and hobby hall at the county fair, who made a decision to being his miniature train park project to the public and spend all afternoon at the table so he could share his excitement with others, and make the time to ask kids to take a look. He then encouraged them to share what they thought and he *listened.* It's rather rare for someone to give others the time and space to form original thoughts and then receiving their perspectives with relaxed and obvious delight.

Tonight, another person shone brightly for us -- the woman who cuts our hair. It's a bit of a drive to get to her workplace, so I don't see her often. She does a fabulous job with cutting my daughter's long hair and giving me a clean, yet sassy, look. Always friendly and encouraging, we love to visit with her. For a few months, I'd been thinking she'd be the perfect person to give James his first non-mom hair cut. She works with horses, has children of her own, and James has been on hand a few times while we had our hair done.

James is also going through a phase of imitating his older sister, so I figured that might further help him get his first hair cut from a professional. I called and discussed it with her, outlining his sensitivities and reactions and asking if she'd be willing to try giving an autistic 8 year-old his first haircut in a shop. Bless her, she said yes. And not only that, she was upbeat about it.

But she did not just cut his hair - oh no. She asked his permission to cut his hair first, and told him it would make her happy if he let her try. She talked gently and coaxingly through the swift cut, and he never once shrieked or twisted, although he did flinch. When he became apprehensive, she let him touch and hold the scissors or comb so he could get used to it. After, she thanked him and told him how handsome he looked. James grew an inch taller at that, I tell you.

Best part for James? She played hide-and-go-seek with him all the time my hair colour was setting. Right there in the salon! Luckily, it was after regular hours. While she was cutting my hair, James and his sister took turns playing the game in the many rooms and hallways. Then it got quiet, so we sought the kids out. They were in a massage room, playing. Both kids got suckers and on the ride home I played the car CD, which was Christmas instrumentals. They were very happy and have already asked how soon could we go back.

I can never thank people like her enough. They pick me up and keep me going. And I am so grateful for the reminder of light in the dark.

An Excellent Time at the County Fair

A summer weekend, and the kids want an outing. I want time to enjoy with them and the great weather outdoors. Luckily, I planned ahead! Last month, we entered a Fair contest (colouring a pre-printed drawing) and were mailed free tickets to the fair to go see our entries -- and a whole lot more. Because I saved a lot on admission, I was able to buy some ride tickets.

But first, let's start off right, with perfect weather and crowds. It was hot, but with breezes off the coastal fog bank. There were enough people to create an upbeat buzz but not so many that it was hard to wander and look at things. Our entry price? Free! We participated in a contest and received tickets to come see our entries.

We began with the kids spinning for free prizes at the credit union booth, and I being handed a credit union backpack to hold the won articles. We then mooved along to free ice cream from Clo at the Clover-Stornetta booth. Yum, it was so good! James and his sister tend to be picky about their ice cream and they ate every bite.

As we finished up we realized we were standing practically at the boarding stop for the buggy ride, so we caught ourselves a pleasant little tour of the fair, driven by a cowboy and his daughter. James tried asking a couple of questions, but I really think he was trying to engage with the cute cowgirl. Her dad explained to my daughter how to properly use a whip (which she'd seen and asked him about) and the spurs.

After this, we decided to try the Butterfly Adventure - a new exhibit to the fair. That was a hit, especially for James' sister. James liked the butterflies, but began to freak out when they fluttered close to him, so our visit was a little shorter than we might have liked. Still, it was a great experience, and no butterflies were harmed by our group.

Intro & info

A look into the butterfly room

This man was very funny; right here he's explaining that the Q-Tip-like objects were truly
handcrafted by Tibetan monks ... during a full moon

Monarchs!

I fed one, with my magic Tibetan stick!

It's a moth, I know ... but still!!

awesome!

Continuing our enjoyment of free fair entertainment, we cruised through the craft halls, where we admired some thematic displays, pies, and quilts. We came across a tiny railroad, complete with some of America's natural wonders ... and dinosaurs. What a find! Even more fortunately, the gentleman who made the entire project was there. He talked so nicely with the kids, eager to share his love of trains and to ask what they thought after watching the cars go around through the fantastic landscapes. I love coming across people like that man.

Jluy 4th display

It's not a county fair without pie!

Just really liked this; the artist is only 16!

Heh. The 10th took 3rd at the LEGO table.

tiny train and park. I wish I had gotten this man's name. He was so genial and nice with the kids.

James surprised me by asking to go on the small roller coaster. o.O  So we all went. He did very well all the way through, but once was enough. His sister took a second ride while we watched. After a long walk through the Midway, big sister decided to try the Fun House. It was okay, but too short. We wound up that area by playing one of the midway games. James actually landed a ping pong ball in a bowl. Alas, it was the colour that earned you more balls to toss, but still, it prolonged the excitement for a bit

.

We did pause for some nutritious snacks: popcorns, kettle corn, and a snow cone. Then a final look another hall of crafts and art pieces before viewing our entries in their binders.

We saw and did more things ... but they're for another post!

Wonder League Teams Up!

Yesterday was our last game of the 2013 season with the Healdsburg Wonder League. Even though we hot the hottest day of the year, we came out to play. Normally James just melts and we stay home. This game was different.

We started later in the day, about 3:30, and the game was in town at Healdsburg's Rec Park. Déjà vu -- we'd just been there last week at the end of the Future Farmers Country Fair's Twighlight Parade. Our guys got to hit the field after watching a thrilling game between the San Francisco Seals and the Healdsburg Prune Packers. What a lot of fun it was to see the big guys play right up close! There were some fast action going on out there.

We did root, root, root for the Home Team!

We were right by the dugout.

I love the home team, just for the name, BTW. When I first remember coming to Healdsburg in the summer, the air was full of the smell of plums drying into prunes. As soon as we came off Fitch Mountain, we could smell their sweet fruity aroma, going into and all over town. The dried fruit would get packed up and sent out all over the country by truck and train. The trees were gorgeous with blossoms in the Spring.

Well, back to baseball ... James actually hit a pitch! He's been steadily batting Southpaw, and all his work with his APE teacher are paying off - he throws in a nice straight line, pretty much on target. I noticed he also stayed on the field more and did less wandering, but that could have been because of the iPad app I promised to download for him later. He did a great job running the bases too.

Big sister did much better at bat once she switched to a lighter one. She's really starting to get the hang of it now! Not so keen on playing the outfield, but the did leg it around the bases, even stealing home. Way to go, Girl!

The icing on the cake: the Prune Packers were the Buddies for the game. They did an awesome job, coaxing the kids to try for a better batting stance and hand positioning. Their pitcher braved our unevenly hitting kiddos and patiently pitched to each one until a hit was made. After the game, some players even hung out with us for our final BBQ and awards ceremony.

As we left, one player called out "See you next year!" I sure hope so. Thanks again to George and everyone who made our kids smile as they got their chance at bat and on the field. Baseball, the Wonder League, and the Prune Packers make a winning team.

Tackle It Tuesday: Alongside, Awareness, Action

I read this interesting article in a feed from MyAutismTeam.com and it brought up an good topic. The article is titled "What Typically Developing Children Learn Alongside Their Differently Abled Peers" and reminds us that programs like full-inclusion in classrooms and elsewhere in society can result in more typically abled people learning from those with special needs.

To me, this can bring anything from awareness to a desire to become more involved and help others. Also importantly, it begins a change in perception for next generations to be more open to the idea that there is more than one way or pace to live a life. And yes, I've seen it around me. My family's become more aware of what it means to be autistic. People in our community see James on a regular basis and start to see past the stims to his personality. Two of our respite care givers have learned more about special needs and run with it, helping James practice his letter writing, reading, and math.

At the CATS Party; he won a tool set!

There are ordinary people whose lives were touched by special needs and turned what they learned into programs to help others. Lorna Catford's daughter was born with many special needs. What she learned by trusting her observations turned into parental advocacy and a wonderful institution called the CATS (Collaborative Autism training & Support) Program. This program not only helps and support families of kids on the autism spectrum, it also helps train students to work with our kids and prepare them for a variety of new opportunities related to special needs. We've participated in this program 3 times; the support, information, and warmth it provides is truly a gift.

George Lawson saw a baseball program for special needs kids and was so inspired by what he saw that he started a program of his own here in Sonoma County, the Wonder League of Healdsburg. We appreciate it, because I don't know that James would enjoy that Challenger games as much as the Wonder League, let alone a regular Little League team. This will be our 3rd year of hitting baseballs, practicing our throwing, and running bases. James' big sister is an enthusiastic participant. Our guy adores his baseball shirt and cap. George told me of one game where a wheelchair-bound player was celebrating a solid base hit with a thumbs-up, and our son ran to him and gave him a high five. That's a greatest game moment right there.

Just this year we changed class rooms for James. He went from one where he was included, yet not connected to one that had students who swooped him up in class activities and saw him as part of their whole the first week he was there. As a parent, the feedback I got went from "problems and issues" to "doing good and these things need work." Might sound slight, but it's a huge change for the better in our lives.  To me, it's the best about the possibilities of full inclusion in a class that's a mutual good fit.

 So how will our world change, with children being exposed to differently abled peers, and learning alongside us about autism? I hope it's for the better, with less us/them attitudes and more of a we concept. I hope it results in more open minds, sparks of curiosity, and ability to work, live, and love together.

 

I know this is a rather abstract Tackle project, but I'm driven to advocate for acceptance and programs that will help my guy every day. Especially when I see his beautiful happy smile, and feel his joy at being in the world.