Another Day Off, Not Going As Planned, Rocks Anyway

Well, I got something done.

You know its not going to go as planned when you start your day off by falling down the stairs. I was clearing pumpkins off the front porch (we had quite a collection), when I tripped and fell down the back deck steps. Pumpkins went everywhere. I ran inside, took some advils, and got some frozen peas on my knees. A few hours later I realized my knees seemed fine, even though I fell on them, it was my hip that was complaining. So I put frozen veggies on that. Now I realize I jammed my back. Great. But all in all, it could have been a lot worse.

The plan for the day was getting Christmas stuff up, round one. Mantle, kitchen shelf, and possibly the first garland. Two of those activities required ladders, and getting on a ladder by myself, having just fallen down the stairs, was not appealing. I got the mantle up, no problem, and some other Christmas knick-knacks went out. Then I remembered one of the light strings on my kitchen garland (the one with the cookie cutters) was kaput. So I settled myself in to pull that all apart. I got it strung with new lights, wired all the cutters back on, and I actually got that up.

Two out of three ain't bad. I probably should have gotten some stitching done a that point, but I got these things done with intermittent other things happening- an impromptu meeting with a publishing client, an email from school saying Joey was having a bad morning, building a fire (hey, I'm downstairs all day in this chilly weather, I'm having a fire!), and... would you believe it? a nap.

And I watched four versions of A Christmas Carol. With the nap, I call that a rockin' day. The back steps be darned.

The Lastest on Alex Barton

Looks like we have a settlement.

Different Worlds

When I got off the plane and discovered I was in Holland, not Italy, I also found I was in a world of people who had the strength to adapt, to change, to go with where they were and what was happening around them. Oh, and people who just couldn't deal with the lemons life had handed them; but I found the folks making lemonade far more interesting. And then I discovered there were people handed lemons who made wine (the good sparkling sweet stuff) and just let everybody wonder how they did it. Amazing people. And their parents.

Nik is about to be seven. So is Jack-Jack. I think about these little guys, as well as many other children of my readers, every single day. But these two of are interest right now, because it sometimes occurs to me that both of them are older than Andy. Not by much- a few months- but older. And I think of these little guys, and I think of my Andy, and I think, sometimes life ain't fair.

These three little guys are hard-working, courageous souls. Yet the challenges they face, so very different, just aren't fair. Nik is starting to say words, using his new iPad, working hard to learn to self-regulate and communicate. Every new skill is so hard-won. Every day is so hard-won. I check often with bated breath, lest I find he is in the hospital again, knowing how hard that little guy works, how hard his folks work to support and help him. Jack is able to scoot about, is learning to use signs and sounds to communicate, working hard to be able to understand his environment and how the world works. Every skill is hard-won, every day hard-won. Every time I talk to his mom, I prepare to hear he had a trip to the ER for a seizure, knowing how hard his folks work to support not only him, but his older brothers who are also seriously disabled. Both of these little guys are trying to hard to survive, while working so hard to thrive.

Folks who don't live with these families in their lives have no idea how hard these kids work. How much energy goes into getting to another day. It's not fair.

Andy's challenges are very different. His life is not on the line with every breath he takes. Yet he fights his own battles, ones that he shouldn't have to fight.

I awakened yesterday to a battle raging downstairs, screams of unhappiness rising up the stairwell. It was odd, they usually play together nicely in the morning now. I sprang up to intercede, and found the problem was about sticks. Joey is very fond of his sticks, which he uses for air writing, and has them about the house. Andy is also fond of sticks, which he uses as most children do: swords, guns, magic wands, whatever strikes his fancy. Apparently Joey wanted a long, thin stick Andy had, instead of the shorter (but still pretty long), thicker stick in his hand. He was screaming that Andy has stolen his stick. Andy was upset because he hadn't stolen the stick (for once), but it was one he had gotten from the yard the day before. In trying to be fair, there was little I could do other than inspect the stick and note that it was, indeed, the one Andy had fetched from the yard the day before- which, of course, settled nothing. Assuring Joey he could go out and get a similar stick was of no avail. Offering Joey another stick was useless. Joey's autism means he needs this stick, right now. Wrapping his brain around getting a similar stick was not working, especially with all the upheaval from the holiday. Meltdown was immanent.

Suddenly Andy looked down at the stick, and over at Joey, and at me, and held the stick out to Joey. "Let's trade, Doey," he offered. When this was amenable, Andy then reinforced the trade by noting the longer stick would write better, and the thicker stick made a better sword. But if you were there, you'd know that Andy did not want to trade sticks. He wanted his stick, but he knew. He could see the immanent meltdown as well as I could, heard the desperation in Joey's voice, the change of pitch that took it beyond a squabble. As long as it was a squabble, Andy held his ground. When it started turning into something else, he came up with a solution- one that got him all sorts of kisses and hugs and praise from his mom, who offered to get him another stick from the yard.

But it wasn't fair.

Thanksgiving

Yes, we had a nice, quiet Thanksgiving. We prepped. We cooked. We were uber-ready.

The boys were good, patient, and actually entertained themselves for a good chunk of time. Grandma just cleaned her basement, revealing a lovely concrete floor- perfect for chalking. I found some of JoeyAndyDad's old Star Wars figures (mine are mysteriously missing), so Andy was thrilled. We brought Joey's computer with us, making him happy. We even got them both to come in to the living room to see Santa arrive in Herald's Square! They were very excited about eating turkey and stuffing and potatoes, and Andy even had shrimp. Yummy.

The bird this year was 27 pounds. It took about 5 1/2 hours to cook. The last hour, I slapped bacon on top. Yummerific. We discovered the bacon trick a couple years ago, when I found a bacon turkey online and slapped bacon on the turkey as a joke for JoeyAndyDad. It turned out to be really super delicious. I also tried a new sweet potato casserole this year, which turned out pretty good.

Evan arrived in the early afternoon; he had to work until early in the morning. Unfortunately, he also has to work tomorrow, so he didn't get to stay over, which means we didn't get to drink and I don't have updates on all the books he's read, and the headache I sported most of the day meant we didn't get to talk much. But we all watched some football and The Empire Strikes Back. Watching a Star War movie is getting to be a tradition when Evan comes. I bet we see Return of the Jedi on Christmas. Which would be awesome. I'll be sure to grill him about his reading, too. He always reads interesting books.

The fun part was he arrived in a garbage truck. He's working for a company that picks up and hauls garbage, and he got to use the truck. Joey was thrilled to see a garbage truck up close, though we didn't have time for a ride. Maybe next time.

So, I'm thinking turkey casserole for dinner tomorrow. And the next day. And possibly the day after. It was a pretty big bird.

Meeting #... oh, Whatever!

I don't remember how many we're up to now. Today's joyous episode included the Director of Student Services, the Autism Coordinator, and Joey's School Principal, along with me and my mom.

We laid it out: Joey received failing test scores for the nine weeks' grading period, and is not achieving sufficient progress on any of his IEP goals. He is not receiving appropriate OT support because the OT is incompetent; she stated clearly at the last IEP meeting that there was nothing she could do for Joey, and insisted on a once-a-month consult status instead of direct service. Here we are in crisis, and where is this lady?

I think if one more admin person tells me this is the school OT, take her or leave her, I am going to shut the meeting down and call a lawyer. How much evidence do you have to have of a person not providing appropriate service to your child before you can go around and get someone in who can provide appropriate support? If you have a teacher who says "I cannot teach this child", shouldn't the school then immediately provide a different teacher, so that the child receives a free and appropriate public education? Why should it be any different for an OT? Or any school personnel?

Autism resource room for next fall? Great. What do we do until then?

Train the OT? Ok... and what do we do until she is appropriately trained, or a new one is hired?

How do you get across to people that these things needed to be done weeks ago? It is now too late to be thinking about prepping. He's here. Now. And drowning. Fast.

Happy Thanksgiving Week!

Today, I am thankful for my mom.

If I am feeling sad, lonely, anxious, weird, grumpy, scared, angry, out-of-sorts, and higgledy-piggledy, I can go to my mom and feel better. She has the best hugs, the best smiles, and the comfiest shoulder. Plus, we have good taste in shopping.

If I am feeling happy, silly, joyous, excited, thrilled, proud, giggly, and bouncy, I can go to my mom and share it with her, making everything fifty times better.

And if I show up at her house utterly exhausted, she lets me take a nap.

I love you, Mom. Thanks for being my Mommy.

(I'd post a picture, but she hates having pictures of her online.)

Here Come the Holidays!

Don't forget us in your holiday shopping! The JoeyMom shop is open!

CHARGE!!!

So I walked into my meeting today- with Joey's principal- with a list of demands in hand. Because this is getting really frickin' ridiculous. And I'm getting really, really tired of Joey coming home so upset and frustrated that he tries to jump in front of moving cars.

I walked out with several items Joey needs being ordered Monday morning (because they want to make sure they are ordering everything they think they might want to try); a meeting set up next week with the Director of Student Services about getting an autism resource room and teacher for Joey's school AND a competent OT for Joey right now; and the principal is going to have the teachers reconsider the lack of safe space in one of the classrooms Joey is in. Oh, and because Joey has been running to the principal's office, he is thinking about just setting up a corner in his office for Joey to run to, thus making Joey's paths more predictable when he bolts.

Yeah, things are looking like they might be in motion at last. The biggest thing is not if there will be an autism room, but when, and what we do for Joey in the meantime.

If I Ran The Zoo

When I win the Big Lottery, I am opening a school. It will be open to anyone who wants specialized and individualized instruction for their kids. It will have a good size campus, with the main area fenced (but plenty of other space to explore as needed). The staff will include teachers with specialized training in a variety of needs and abilities, a small army of well-trained paraprofessionals, fully trained administrative staff (not just in administering, but also in the needs and abilities being served by the school). It will include a number of specialized spaces, such as OT gyms and specialized classrooms, as well as more flexible spaces which can be opened or divided as the students grow and change. On-staff will also be specialized support staff, including a contingent of occupational, physical, speech-language, communication, behavioral, and mental health therapists.

In other words, each child will have a team of experts working with the family and the child to determine what is needed, what is wanted, and how to best support and teach the child. Since this school is not just for "special needs kids", there will be opportunities for education in a wide variety of settings and environments.

The school will include residential opportunities, so academic instruction timing can be tailored to the child. Do you have a little one who is a night owl? Cool. Is morning their best moment? Great. Do they prefer to sleep late and get things done in the afternoon? Lovely. Working around sleep issues and those little nappers? No problem.

The school will also offer opportunities for families who decide to send their child to "regular" schools: before-care, after-care, etc. These students will be evaluated for needed supports and additional instructional needs (academic, social, functional, etc) so that their needs for instruction are incorporated into their individualized program, and they are treated as students, not just as warm bodies (as they might be in a daycare or "regular" before- or after-care).

The programs will take into consideration the interests of the individual children, using strengths and interests to spur learning and overcoming challenges. Staff will understand how to use, say, Pokemon to teach math and history.

The school will teach 7 days per week. If you wish to take your child out on specific days, that will be worked into you child's individual program, but consistency is considered key. It will also meet year-round. Taking your child out for vacation- and when, and for how long- is up to the family and the needs of the child. Staff will be available to provide home support for families, so go ahead and leap on that opportunity to take your kids to see Grandma, or go to DisneyWorld.

The curriculum will include a number of things seen as beneficial generally, but that are not usually offered in public schools. Sign Language will be part of the general curriculum, just as many schools now teach Spanish. Instruction will include lessons on respect, human diversity, kindness, and being thoughtful and considerate of others. Social skills will be part of the actual, planned curriculum for all students, tailored to their needs. Families will be offered the option of having religious or spiritual instruction for their children. Cultural instruction will be another important facet of the curriculum.

Transition into the "real world" starts from when you begin at the school. A child's strengths and aptitudes will be considered and encouraged from the start. The school will provide a variety of avenues to employment or further education, based on the needs and desires of the student. Apprenticeships, mentoring, vocational instruction, self-advocacy instruction, fieldtrips and fieldwork opportunities, etc. will be available for experimentation and support of the child right from the start. Your budding paleontologist at age 6 might strike up and interest in other kinds of detail-oriented logic-heavy fields of interest by the time they are 20; but encouraging them to explore logic and focus using dinosaurs at age 6 is a great way to introduce them to wider opportunities by the time they are 20.

Age is not a deciding factor for when they will graduate for our school. Hopefully by the time the kids who enter our kindergarden reach the age of 18, our school will have garnered support and funding to open higher learning opportunities to continue to support the needs and instruction of our students. However, focusing on educating all the students who come to us, we know that we will have students who will require support for learning independence and functional skills beyond their 22nd birthday. That will not be considered a problem at all. We will hopefully continue to instruct and offer support for our students well into their adult lives, even those without "special needs".

However, the goal is to teach these children to support themselves independently, to effectively self-advocate, and to be able to hone their own skills and interests as adults. The vast majority of our students would leave us after they complete high-school level education to satisfaction, and go out into the world.

But hopefully, they will be stronger, better people for having spent their precious childhood days with us, in an environment that understood and supported them, and taught them how to understand and support themselves.

Mama Bear Growls

I have a meeting with the teachers set up for tomorrow. I've warned them that I want to know exactly what they think they need to meet Joey's needs.

I have a meeting with the principal on Friday. This is where I will present said needs and those I feel are not being met, and how I expect them to be met.

Then I am going to come home and call the Director of Student Services, so I can provide them with an earful of exactly what I think of Joey's current educational program, with his report card to back me up.


Growl.

Nik's IPad: Chip In!

WE DID IT!!!!

Thank you to everyone who contributed to Nik's iPad!

Merry Christmas, NikFamily!

The Difference Support Makes

Last spring, we designed Joey's big IEP for the school year. IEPs here are now not school year-to-school year, but are to cover 12 months from implementation. This wasn't a big issue, as Joey had mastered his goals from his previous IEP, so he was ready for new goals and new work. So we thought hard about where we thought he could go between April and April, and wrote it up.

I admit we've had some setbacks since then. Joey's mental health deteriorated significantly. The result was a huge explosion in behaviors to communicate that deterioration, the most significant being downright dangerous. We have had to put a lot of energy into getting him settled in his new school after the disastrously inappropriate summer program. However, all those problems were rooted in poor transition planning and implementation; in other words, lack of appropriate support.

Now we are in a school with no autism specialist, no resource room, none of the things that made Joey's school experience work for him. His teachers are busting their butts trying to figure out how to help him; but that also means they are not spending all the energy on actually helping, they have to spend it on thinking, experimenting, and reinventing the wheel.

I just saw Joey's first official report card. His midterm reports were pretty good, all A's on his academic subjects (which we thought a little odd, to be honest, considering that the teachers were telling us they hadn't been able to provide him any instruction due to behavior issues).

The new C's were not the most startlingly telling thing about this report, however. It was the IEP.

When you have an IEP, part of it is a section evaluating progress towards the goal. The scores are M (mastered), SP (sufficient progress made to complete the goal on time), ES (emerging skill, but may not meet the goal on time), IP (insufficient progress to meet the goal on time), and NI (no instruction provided).

For the May and June reports, where he was in his old school with all his supports, everything was SP.

For the September and November reports, none of them are. NONE. We even have an NI. Two ES. Mostly IP.

That, my friends and readers, is the difference support makes. Remember this as you go into your IEPs, your teacher conferences (even with your non-disabled children), your meetings and plannings and everything else. Support=success. Without it?

IP.

Lunch Ideas, Anyone?

Andy does not eat bread. Or noodles. Oh, that includes things like flatbread and pita.

So I need breadless lunch ideas. He's been subsisting on cheese sticks, cheese crackers, and cheez whiz snacks. I haven't had luck with cream cheese or cottage cheese. He doesn't like eggs. Sending in plain lunchmeat worked... for a while. Not anymore. He's not eating yogurt anymore, either.

And the fact is, the child needs to eat. He's skinny as a rail, and constantly on the move. I'm worried about his future health if all I can get him to eat are pre-packaged junk foods His body may be able to handle them now, but what about ten years from now? Twenty? And all that salt can't be doing him any good.

We're in a world of kids with strange food preferences and limited diets. What do you send in those school lunchboxes? Help!

Thanks!

Happy Birthday, Beau

May it be happy, where-ever you are.

Two Sweet Boys

Two good brothers.

Pot Luck Magazine Call for Submissions

Yes, I am still the layout editor for Pot Luck! We are currently looking for your contributions! Check it out here!

For my part, I am working on a spread about winter holidays for the winter issue, due out Dec 15. I'm also working on cookie recipes! Deadline for submissions is Nov 30. However, I am also looking for gardening, crafting, and kitchen/cooking info, tips, recipes, etc. for all year round! After all, after the winter issue comes the spring issue... then the summer issue... then the fall issue... then we start over again...

Just to get folks thinking, I am looking at a variety of topics that are seasonally connected, and I'd like to build up a repertoire of material that I can include in these sections, instead of it being just my own voice. For the last issue (Fall), we did tomatoes (including canning) and corn, because we had a couple of recipes and ideas, and I just added more material to fill out the spreads and bridge between late summer and fall. Next year, I am hoping to do pumpkins and gourds and a second (as yet unknown) fall ideas spread.

So far, Pot Luck has been mostly a lit mag, but we want to expand to include a variety of voices and styles. The point is to get people reading, thinking, and talking! Come join us!

A Tale of Two Days

Saturday.

Joey and Andy were in giggly moods. They wrestled and hugged all day long. Andy tried to pull off one of Joey's shoes, and ended up dragging Joey across the floor instead; they both thought this was hilarious. Laughter reigned.

Sunday.

After a walk around Wakefield (turkeyless, thank goodness), which just kind of went so-so, a key broke on Joey's computer while he was playing a game.

All hell broke loose.

Screaming, throwing things, throwing himself, refusing to go to his room to calm down, yelling at us to "kill me, please!" We had the talk about facing your mistakes. We talked about how the key coming off the computer wasn't entirely his fault, and that it was fixed (yay, JoeyAndyDad!), and nothing to be this upset about. It took him a good half-hour to calm down. We didn't want to over-react to the pleading, because he seems to know these words get swift and dramatic reaction. We don't want to completely ignore it, either.

But what a difference a day makes. And this morning? Got up and bounced off to school.

I hope he had a good day.

Living The Penguin Life

Some time ago, Mom-NOS came up with the perfect metaphor for autistic kids in the neurotypical world.

Here, I present a lame imitation, because I have been watching A Wish For Wings That Work, and it so fits our world.

We live in a duck world. The world is full of ducks- versatile creatures who swim, dive, and fly. They can soar magnificently through the skies, then plunge into the depths. Nobody worries about the waddling, because hey, everybody waddles. So its cool.

My kid is a penguin.

The difference between ducks and penguins is not so great as between toasters in hair dryers. You would never mistake a hair dryer for a toaster. But with ducks and penguins, they are both birds. It might take a minute to point out differences. After all, they both waddle. They both swim. They both have feathers. They are both birds.

At the same time, a penguin is not a duck. Penguins waddle, but they walk upright. They swim, but instead of just kicking with their feet, they use their wings as well. Penguins are excellent swimmers, and they get the waddling thing done in their own way.

But they cannot fly.

Penguins living in a duck world spend their lives being ridiculed and pushed about not being able to fly. After all, they are birds, they have feathers, why can't they fly? Teachers push them to fly. Peers tease them about not being able to fly. There is an obsession with flight in their families, because after all, this is a world where birds fly!

Penguins cannot fly. They are not made to fly. They're penguins, not ducks. They can swim far better than ducks, but that is ignored by ducks in a duck world.

What is great about A Wish For Wings That Work is it shows us that it is important to have a variety of talents and gifts in the world. A duck and ice water don't get along, but penguins swim beautifully in it. We need penguins. Just in case Santa falls into an icy pond and needs to be rescued.

Another interesting sideline is how Opus treats Bill throughout the film. The rejection of others who are disabled by people with their own disabilities is something we are noticing more and more. On the surface, Bill has no talents to share. But look closer at the clips. Bill has loyalty, he has the brains to know who can help. He may smell of brussel sprouts, but he is not useless. He's trying to live in a duck world, too.

And best of all, Opus does fly at the end. With some help and support, some appreciation for the talents of others and support for their challenges, we can all live in a duck world. Or perhaps, just the world.

When Silence Is Not Golden

My son is autistic.

He repeats words and phrases to comfort himself and make himself laugh. He sometimes picks up on words when you least expect him to, and then repeats them for weeks.

He uses language to communicate emotions by attaching emotions to words, even when those words may make no sense out of their original context. He often repeats blocks of words and phrases he has heard before, modifying them slightly to fit what he wants the words to do.

When frustrated or angry, he often runs out of words and cannot process language effectively, either expressive or receptive. The result can be a meltdown or an attempt to escape the painful emotions.

He loves people, but is unsure how to talk to them or react to them, and finds them confusingly unpredictable. He also loves and fears dogs for the same reason.

He reads beautifully, but hates doing it because it "hurts".

If someone is hurt, he is the first to be in at their side and trying to make them feel better.

He loves math. His favorite game is to think up math questions to ask and giggling over the answers.

If someone teases or bullies him, he does not have the social skills to manage the situation or the language skills to effectively report it to someone else. He is hurt and sad, but cannot explain why. He gets grumpy and touchy, but can't express the connections to the problem.

He understands you better if you use sign language while you are speaking. If you show him "I love you," he will say, "I love you, too!"

If you ask him about his day, he will recite his schedule, or script an answer. But he gets grumpy if you don't ask.

I remember the silence. I remember the days of wondering what was brewing in that golden head, and eagerly awaiting every sound, every word. My son's voice may not be what anyone expects, but if you listen, he is filled with the joy of the world around him, and is sharing it the best he can- and has insights to share in seeing the world through his eyes. You just have to take the time to listen.

So listen up. Joey is speaking.

Happy Halloween!