Friday, December 31, 2010

What a year its been

In 2010, we went from being on the right path to being completely derailed, to trying find the tracks, to wondering if we were on a frozen lake like the Polar Express. I think right now, I'm still telling the engineers to turn left and right, but at least we can see the tracks again.

It is a reminder that you can work your butt off, and small things can make it all for naught. Differences in attitude make a difference. Proactive preparation can also make a big difference- between being able to participate in "regular" environments or being trapped in self-contained worlds.

We learned the value of child locks on car doors and the speed of Joey's legs when panicked. We discovered the value of fifteen minutes in the search for a missing child. Our world has been dominated by the fear of the bolt.

We also got to see the President. We went to the beach, the zoo, and even DinosaurLand. We didn't let fear bring us to a grinding halt.

We look forward to getting on track in 2011, and moving on to bigger and better. We hope you'll join us in our adventures!

Tuesday, December 28, 2010

A Little Bit of Clarity

I am starting to know what kind of moment (or even whole day) we are having by listening carefully to Joey's voice. When Joey was little, I often noted to his teachers that he had a huskiness to his voice, a sort of talking-through-cotton sound that other children his age didn't seem to have. I was, for the most part, laughed aside with the idea that that was just his voice. However, Andy does not have this thickness to his speech, despite all the speech issues he has. However, I notice it in many of the kids I meet with dyspraxia; the issues of motor control are coming into play when Joey speaks.

Now and again, and especially when he is doing well and having a really good day/moment, Joey's voice is clear as a bell. In fact, it can be hard to distinguish him from Andy at these moments, even though I know his voice is slightly lower in pitch. When Joey can speak clearly, his brain is moving in synch with his mouth. I also have noticed his language use improves in these moments, though his grammar often takes a slip. He can talk about his toys, or what he did that day, or what is going on in Poptropica, even over the phone.

When his voice thickens beyond the norm, it is a bad sign. Frustration mounts. His body is not in synch, his language use diminishes (though often his grammar improves...), and it is time for a break. Most likely, he is tired and/or hungry, or otherwise worn thin. It is not the time to press him.

So now my ears are primed, ever listening to the rises and falls in my Joey's day, searching for patterns that coincide with thick and clear. Just one more clue when the game is afoot.

Wednesday, December 22, 2010

Wordless Wednesday: Merry Christmas

Saturday, December 18, 2010

When It Is OK To Believe

I have come across a very sad thing here in my little corner of the world: children who not only don't believe in Santa Claus, but tell others that he is dead. The parents of these children often are trying to move their children away from the consumerism they see in Santa Claus and towards a focus on Jesus in the holiday. See, these parents not only don't believe in Santa Claus, they don't even understand the point. They are themselves so caught up in the consumerism that they miss the real meaning of Santa Claus, and thus miss a wonderful way of turning their children to their spirituality and community in a way that children can readily grasp and believe.

If you believe in Santa Claus, you understand that St. Nicholas is about giving, not receiving.

You may remember that we're staunch Methodists (well, we believe in comfortable furniture and stuff, but there is no denying we're Methodist in a strain older than what I have seen in any of the Methodist churches I've tried around here, which seem very. very Baptist). We believe that God has given us many, many gifts: life, the world around us, friends and families and everything in wonderful Creation. He also gave us Salvation- that was a gift, and it is given, and it is up to us to appreciate it, be grateful for it, and remember to do our best with it. That idea of giving, of putting your best forth and giving to the world, spreading love and cheer and goodwill, that is what Christmas is for, celebrating God giving us this great Gift.

That is also what Santa Claus is trying to remind us to do. By giving without expecting any return, Santa gives us a model of being a giving person, a person who thinks of others and what they want, and tries to show love in ways others understand. It is a lesson that is often lost in translation as we succumb to the me-me-me of the adolescent age, and so many never seem to emerge from it.

Telling a child that Santa is dead is not only unfortunate, it dismisses the lesson he has to give us all, the very message of the joy of Christmas and of the Christ. It is the core of Christian belief, which is why St. Nicholas, patron saint of children everywhere, is so adored.

I believe in Santa Claus.

Thursday, December 16, 2010

End of Semester

Sorry I am absent. I am tearing my hair out grading. Now school is called for snow. I'll be back when sanity resumes.

Ok, at least when I have a few more minutes to myself.

Thursday, December 09, 2010

Our Adventure in President's Park

Yes, we did! We got tickets to the National Tree Lighting! And we had the most awesome seats- here we are watching the trains, and I can see our seats. Seriously. Totally awesome.

The boys liked the trains, but we didn't get to spend much time looking at them, because some official person threatened to "squish folks in" and take our seats from us if we weren't in them. At 3:30. According to the literature we had, we didn't have to be in our seats until 4:30. Besides, we weren't the only folks wandering around, or attempting to. But whatever. Mom waved us down in time for us to keep our seats.

Our adventure included a guest appearance by Stimey! So not only are we awesome enough to get tickets to the Christmas Tree Lighting, we are cool enough for Stimey to hang out with us. We rock.

So we took some photos of ourselves in front of the unlit tree while the daylight held out, and before we had to race back to our seats to keep some official person from letting someone else sit in them.

Joey and Andy were having a wonderful time, too. They were wonderfully good. Seriously. We pulled out a couple of our tricks from our bag, but they did the trick and kept everybody calm and having fun. I wish we had more time to look at the trains, though. They were digging them. If it warms up before Christmas, we might go back up just to see them. Or we'll wait until next year, if it is warmer.

Because you know what? It was Cold. Seriously. Cold. I was glad I thought to bring the tree hats. Not only did they get us on TV (woo-hoo!) but they are made of polar fleece, so they are nice and warm. And I thought to bring extra hats, extra gloves, extra scarves, and several blankets. All of which came in handy. Did I mention it was cold?

Yes, that is the beautiful and fabulous Stimey, and yes, our seats really are that close to the tree. It totally rocked.

We actually got to see the motorcade form in front of the White House, then pull away to come to the event (and joke about how he should have just walked, or used a Segway). I thought I took some film of it, but apparently, I didn't. :(

Did I mention I have a new camera?

So we waited for the dark to settle, the temperatures to plummet, and the president to show up. They started playing music for us about 4:30. The president showed up around 5. All in all, we did quite well.

I think they ought to have more ornaments on the tree, though. But that's just me. If you've ever seen my Christmas tree, you know I am not being facetious.


When one sees a president, one is required to cheer loudly and take lots of pictures, and hope the zoom on the new camera works. I think it did pretty well. The film I took looks amazing, better than the photos, even.

They lit the tree around 5:15, which made us very happy, because we didn't feel obligated to stay. Did I mention it was cold?

And it was pretty awesome, too. It just comes right on, and we were suddenly aglow! What was also cool was the whole First Family lights it, including the First Grandma. And since we were also there with Grandma, we definitely appreciated that.

Joey did fabulously. We did have some games for him- a little handheld and my iPod (he loved tic-tac-toe and loves Angry Birds). He didn't even need his earphones.

Considering he sat in a car for an hour and a half, then in a line for half and hour, then in a seat for almost two hours (after walking calmly through a metal detector!), and then into a show that didn't really interest him until Santa appeared, I think he ought to be sainted for his behavior. He did awesome.

The First Lady read The Night Before Christmas, and that was fun for the guys. The little girls are adorable. I believe the other kids are from military families.

And did I mention Santa showed up?

That's when the guys really got into the whole tree-lighting thing. See the President? Oh, OK. Watch a 42-foot tree light up? Nice. Hey, look, there's Santa... WOWIE KAZOWIE, IT'S SANTA!!!!

This is Andy watching Santa. He also did great. They were both so patient and so, so, so good.

Before the show started, Andy discovered it was warm under the blanket, so he was playing under it and under the chairs like a little tent. He was adorable.

We watched B. B. King perform, then decided the boys were tired, cold, and hungry. And we were tired and cold. Did I mention it was cold?

So we bid farewell to our beautiful and adorable and wonderful Stimey, who I didn't get to really talk to much, and made our way to the exit. Only they had closed all but one of the exits, and the open one was not the one we entered through, so it took a long time for poor JoeyAndyDad to find us and pick us up. (He drove us up so we could get really close, to help out my mom). That was a bit of an adventure unto itself. But he did find us eventually, and we did thaw, and we'll see how the boys are feeling in the morning.

Overall, we had a wonderful time. How many times do you get to see the President and the lighting of the National Christmas Tree? And we got to see Stimey on top of that! Woo-hoo!

Merry Christmas!

Watch us on TV!

Wednesday, December 08, 2010

Wordless Wednesday: The Holidays are coming!

Tuesday, December 07, 2010

Preparing: The National Christmas Tree Lighting

Yes, I got tickets! Woo-hoo! We are going to go see President Obama! I am SO excited!

Of course, it's going to be the coldest December in years. Oh, and I already think D.C. is the coldest place on earth. And Security opens at 3, we have to be seated by 4:30, and the show doesn't start until 5. And I have an autistic child.

How does one get Joey through all that cold and waiting? What if he is overwhelmed by the concert, the crowd, the waiting?

So I am packing my special Success Kit:

A set of earphones and music player, loaded with Joey's favorite songs.
A Sensory Kit: fidget toys of various textures and chewy food items such as gummi bears and gum.
Scarf, Hat, Gloves spares. Extra socks.
iTouch with Angry Birds and Funny Bunny loaded.
Several chopsticks to use as air-writing sticks.

Anybody else have suggestions for the kit?

I hope they sell hot chocolate once we're there.

Sunday, December 05, 2010


I sit in a room full of parents, their children with various issues, various diagnoses, varying degrees of functionality and challenge, in a place where improving functionality and overcoming challenge is the goal. The clamor of chatter bounces about the room, parents trying hard to connect with other parents, sharing what works, what doesn't, what they see and how they feel. Certain refrains reach my ears.

"Once I took the gluten out, everything was better. He even looks at me now!"
"Oh, no, my child isn't autistic. He has PDD-NOS. It's a developmental delay."
"All those chemicals in vaccines! She's recovering from measles now, it wasn't so bad. How long? Oh, it's been about... eight weeks now. The school is starting to get fussy, but I don't want her to over-exert herself in PE..."
"The vitamins have been really helping! You should try it."
"Well, he focuses well enough when it's something that he likes. He'll watch that train in the grocery store for hours if I let him. He just doesn't like his schoolwork. What kid does?"
"The tae-quan-do has been amazing. He is so respectful now!"
"They want to teach her to sign, but if she signs, she won't speak, and who understands sign language in the real world?"
"I had to pull her out of school. It just wasn't working. Nobody wanted to really help, they just wanted to stick her in with a bunch of stupid special ed kids and let her rot."
"They want me to put him on meds, but I want him to learn to cope without them!"

I know these children. I have seen them once a week, some of them for six years, and started off seeing them two or three times in a week. I have seen them grow, and change, and suffer, and triumph. I have seen the hard work they do. The hard work their parents and grandparents and caregivers do. The hard work their siblings do.

They do what works for their families. And whether you agree or not (or I agree or not) with the comments I was hearing, or support their approaches or not, or wonder more about these children and wonder why these comments might have stood out in my head from the other jabber in the room... these are hard-working people, doing the best they can in a hard place.

I remember when I first found myself in this world of special needs and disabled children. I was shocked to find how I started off in a place of such utter ignorance. I'm an educated person. I had no idea. To find I had to come to terms with the needs of my child and the changes in my own life, that wasn't easy, and it wasn't quick. To actually come to terms, that wasn't easy or quick, either. We did try things, we spent hours researching things we had heard, theories handed to us. We went through the agonies of self-doubt, self-recrimination, the ugly side of discovering life isn't going to be as you expected it, as everyone assured you it would no doubt be- provided you did everything right, having it go this way, the wrong way, was a slim and distant possibility. The attitudes towards special needs kids and their families- the ignorance and venom of people who have no idea what it is all about, what it is like, can be overwhelming. Add in the venom of people who insist you should believe what they believe and do what they do within the special needs world itself, and it can be crushing.

Often I find people in these waiting rooms who are just reaching those terms. They go on about things they've tried. When I disagree with their approach, I often smile and nod and say, "how interesting, I'm glad that is working for you guys..." and then go on to note the latest triumphs the child has achieved, leaving why I think that challenge was overcome deliberately vague. I'm not there to add to the crushing weight of constant judgment.

I might note what worked for us. And some of those other parents smile and nod and say, "how interesting. I'm glad that is working for you guys..."

And that's OK. We'll all muddle through. It's good to listen. Sometimes there are new ideas to try, bouncing about a room of jabber.

Saturday, December 04, 2010

Awareness: Child Abuse

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Friday, December 03, 2010

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.

Thursday, December 02, 2010

Monday, November 29, 2010

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.

Thursday, November 25, 2010


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.

Tuesday, November 23, 2010

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.

Monday, November 22, 2010

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.)

Sunday, November 21, 2010

Here Come the Holidays!

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

Friday, November 19, 2010


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.

Thursday, November 18, 2010

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.

Wednesday, November 17, 2010

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.


Tuesday, November 16, 2010

Nik's IPad: Chip In!


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?


Saturday, November 13, 2010

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!


Friday, November 12, 2010

Happy Birthday, Beau

May it be happy, where-ever you are.

Thursday, November 11, 2010

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!

Monday, November 08, 2010

A Tale of Two Days


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.


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.

Wednesday, November 03, 2010

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.

Monday, November 01, 2010

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.

Sunday, October 31, 2010

Happy Halloween!

Thursday, October 28, 2010

Meep Meep

Week 8, Meeting 8

So we met with the Math Differentiation Teacher, whom we can call Ms. Math, today to discuss Joey. She had given him the third grade test and the fourth grade test. Funny enough, he flunked the third grade test, and passed the fourth grade test. How's them apples?

First, I'd like to say that my first impression of Ms. Math is that she rocks, and she's just the kind of person Joey responds well to- very huggy, happy, and enthusiastic. Her idea was that Joey needs to have the material presented, but clearly picks things up so fast that he needs a lot of "enrichment"- activities to use the skills and expand upon them. She's going to go check him out in person and for herself next week. She seems very excited. I'd say Joey is about to rock her world in a totally fabulous way.

We'll see what happens.

Wednesday, October 27, 2010


We love you. Hope you have a fantabulous birthday!

Added: Joey's birthday card for his Dad:

Tuesday, October 26, 2010

Week 8, Meeting 7

This week's meeting: the Functional Behavior Assessment. This is the meeting you have when your child's behavior is challenging and disruptive, so the school decides they better figure it out quick. Let's not get into a discussion of the meaning of "quick." Personally, from the time I agreed to the FBA to the time of meeting, in school terms, I think they did really well.

This was one of the better meetings I've been to. After, how cool is a meeting that is specifically for sitting around brainstorming about what is possibly causing behavior, and how to help him learn to cope with those antecedents? I took my mom with me, which always helps, because she tends to cut right to what we are seeing from home without beating around the bush, and she has no fear of our school psych. Fortunately, the school psych was actually helpful this time. Oh, and the OT? Nowhere to be found. We'll count that as a positive, too.

So we had a room full of Joey's teachers, all of whom are interested in helping him. This last couple of weeks I think has really helped Joey- not only have we gotten his anxiety levels into his normal range, but his teachers have gotten a chance to see what Joey is really like. This has given people a chance to fall in love with him. Or at least in like. Or at the very least, see what he is really capable of if he is supported properly. Any of these three things can make a huge difference, because it gives these teachers a chance to realize they can make a huge difference. That's why most of these people went into teaching in the first place. Hey, I teach, too. I know how much more fun and awesome it is to teach a student who rocks, even when they need support and lots of attention. When you see the potential and the determination is there, you are more ready to go for it. Joey has potential and determination. And he's squishy into the bargain.

So everybody came out with some new ideas, new strategies, and new things to try. I think we can call this one a "win."

Up next: Meeting 8: What To Do About Joey the Math Genius.

Sunday, October 24, 2010

How do we spell "awesome"?


It's a Schwinn Meridian. You know you want one.

Sunday, October 17, 2010

Considering: The Joeymom Avatar

My boys are growing up. Kids grow up whether you raise them or not. It's a time thing. Time keeps marching on.

Some folks have asked me why I am Joeymom and Not JoeyAndyMom (especially since my husband is JoeyAndyDad, and the blog address is joeyandymom). It's a time thing. When I set up this blog, I was using an older blogger account, and just set up a new blog instead of starting it all from scratch. I had been Joeymom for a couple years before Andy came along. Funny enough, I don't think anybody who actually knew me online in those two years is anywhere on the radar now. Something about no longer being able to compare my kid's milestones to theirs. Moms can be funny things.

When I set up the blog, the new thing was picking an avatar: a little picture to represent me to the internet world. This was new and exciting for me four and a half years ago. I started my internet life with text-based MUDs. Even chat rooms had minimal choices for little pictures to go with your name. I knew this was important, though. When your contact with a person is exclusively online, that little visual image is how they think of you. Art is a powerful addition to a world based entirely on the visual. Now I would be more than words, I would be a little picture.

Should it just be my face? That may sound logical, and in fact, is the option selected by many online. But what does my face really say about me? After all, an avatar is a mini-portrait: a creation of your online presence, much more about who you are than what you look like. An image that gets recalled and connected to you, to your presence, to your "I was here!" in the comments section, something to search for along the many tweets and have that leap of, "oh good! something from you!" when it is scanned and found. Is my face a powerful enough message? How about using the boys?

Besides, the avatar is usually pretty small. About a half-inch square. How legible is my face at that size? And trying to fit two faces in there? Ha! Perhaps something a little more legible in mini would be better. Something like Maddy's goldfish- clear, loaded with symbolism and meaning, and yummy. Maybe something like Miss Kitty's cat, which goes with the name and expresses love for cats. Or Stimey's gerbil. Actually, that kinda fits her to a T. She kinda look like that gerbil. Cute and fuzzy with the tiny claws ready in case you threaten to mess with her, if you know what I mean. Seriously, meet this woman, and tell me I'm wrong. Stimey totally rocks, in a comforting, wonderful way.

Maybe something more graphic. Sunday's banshee comes to mind. Or one of my favorites, mommydearest's gothgirl.

Right. So I made my choice. And I chose...


For those of you unaware of our history, Joey basically learned to talk watching Oobi, with the help and support of intensive early interventions. He loved Oobi, the talking hands on Noggin. The show is hilarious, gentle, imaginative, and beautifully captures the concerns of young children. Uma is Oobi's little sister. No, that isn't my hand. I can tell you that the voice is Stephanie D'Abruzzo, but I am not sure if she is also the "puppeteer" or not.

I have been Uma now for four and a half years. I wonder how many people think of me as a hand puppet with googly eyes. Hey, Stimey, do I look like Uma? Or more like a Shmoo?

My kids are 6 and 8 now. Oobi has been left behind with a world of preschool cares and joys. They are growing up. I do sometimes miss those little babies, so squishable and giggly, but I do so love the boys they have become, and I look forward to teh men they are going to be. Perhaps it is time to move along, and find something new.

Maybe a shmoo.

Saturday, October 16, 2010

Enjoy the Ride

Sometimes when the boys are all bouncy and out-of-sorts, we find it a good idea to break it up, so each little guy gets some 1:1 time with Mom or Dad. Such was today.

It was my turn to have the Joey-Boy all to myself. Joey has been too overwhelmed to be able to actually pick out a nice pumpkin or enjoy the pumpkin patch, one of his favorite activities. I was so glad when he said he wanted to go for his activity. Off to Snead's for a fun-filled afternoon of chickens, hay, and pumpkins!

I didn't take a camera. I just spent the afternoon enjoying being with my son.

As part of the treat, he got to sit in the front seat with Mom. We drove through the fields, looking at the growing Christmas trees, the overgrown asparagus fields, and of course the pumpkins. We drove through the ford to the back fields, a very exciting moment as we were in my little neon, not the jeep, and it rained yesterday. We took our time picking out pumpkins. He picked a green one, of course, and then we picked out a really big orange one together. We wandered back to park near the barns, so he could play in the hay. We patted goats. We hugged baby cows. We giggled at alpacas. We even touched a baby chicken!

Then we went for a hay ride. The lady who runs the tractor saw us and laughed about us being return customers. Something to the effect of "you should get bulk rates!" But she didn't give us bulk rates. Besides, it was just the two of us today. Our hay ride was a small group. Joey bounced around the cart- looking through the floor slats at the ground passing beneath and the wheels turning, checking out the different places to sit in search of the best view, trying out laying down, sitting up, laying on his back, laying on his tummy. He called out random words to the pumpkins and to the people we passed. He giggled. He leaned against me. He wrote in the air with a stick. He looked at me like I was crazy when I pointed out the pumpkins and the trees and the horses. He was busy.

We played in the corn teepee for a while. It really needs some restoration now; it was really lovely when it was first done, now it is about to fall over. We wandered past the alpacas again, and picked out some gourds. Then he found the golf cart. Folks from the farm use it to tool around and check on things. Apparently, they leave the keys in it. Joey loves golf carts. He wanted to get in it, but I managed to get him over to the gourds to pick some out. He liked ones with lots of colors and bumps. When I was young, the popular gourd was a little white one that looked like a shmoo. I like those, but you don't see them anymore. (If anybody remembers them and can tell me what they are called, I would be very happy. It is not a white cushaw, they are too bumpy; these were smooth).

As I was paying for them, I heard the golf cart start up. I looked up to call Joey so he could see one of the farm people riding in it, and wave... to find that it was Joey. One quick call and he stopped, thank all goodness! But it also was a good signal that it was time to go home. Joey started on his "I'm a stupid boy" routine because he was upset (and probably embarrassed) about his golf cart adventure, so I softened it a little by letting him look at the baby chicks one more time (they were right next to the car). Then we had a talk about safety and how you have to be 16 to drive a golf cart as we started for home.

He said he'd like one for Christmas, anyway.

Friday, October 15, 2010

A Day Off

Today is Friday. That means it is my "day off." This is the one day I don't work any of my jobs. The children are in school. The husband is at work. The purpose of this day is to nap. That never seems to actually happen.

What usually happens is it gets cancelled. And I end up running around getting nothing I intended to do done.

Today, I totally kicked butt and took names.

I got the guys on the buses with no pouting, screaming, or tears. Win.

I went home and moved the rest of the boxes I needed to move out of the guest room into the attic. Win.

I moved some furniture that also needed to be moved. Win.

I got dinner going in the crockpot (Autumn succotash stew!) Win.

I removed my entire fabric collection to the attic for the holiday season, so we can stop tripping over it in the livingroom or kicking it under the table in the kitchen. two large plastic storage bins, five bankers' boxes, and three assorted shipping boxes' worth. Not counting the collection already in the attic. I love fabric. Win.

I made my bed. Win.

I made Joey's bed. Win.

I cleared the mantel to prepare for Halloween decorations. Win.

I got the Halloween decorations out and the mantel decorated. Win.

I bought cat food and fish water. Win.

I dropped off some baby toys and books at school to be used or passed on to Ms. Macy's little darling. Win.

I got to talk to Ms. H and Ms. Macy. Bonus Win.

I got to have lunch with Mom. Superwin.

We tried to go to Joey's book fair, and discovered the school was in lockdown. Fail. And we never did find out why it was in lockdown.

So we went shopping at Tuesday Morning instead. I got a new roaster pan for Thanksgiving. Very win.

I got the fish tank cleaned and the water changed. Win.

We got the boys, then dropped Mom off at her truck, and spent the afternoon playing games and watching Halloween movies and squishing boys. WIN.

That's a rockin' day off!

Wednesday, October 13, 2010

How to Define "Dramatic Change"

So we went to the doctor, we made the decision, and we started the meds. I can tell you it was not an easy decision, and not one made lightly. The doctor said we'd probably see a change right away.

But holy freakin' COW.

I have notes from teachers about how Joey is asking permission to have breaks or leave the room. He is sitting and doing work. He read ten pages of a book for one of his teachers on Monday. He spent 25 minutes on a single activity on Tuesday. HE gives his teachers hugs, says please and thank you, and takes turns. He's being silly and smiley and... who is this child, and where has he been for the last five months?

If nothing else, Joey's teachers are getting a taste of what he can really do if he's given the correct supports. We just need to figure out what those are. Joey gets break from the overwhelming anxiety that was dragging him into the abyss. Maybe he can then help us by being able to better communicate what he needs, and have a chance to settle in to his routines and get used to his teachers.

I much prefer the giggly Joey, I can tell you. I bet he does, too.

Sunday, October 10, 2010

Happy Digital Day!

Don't you just love the digital age? We do! So Happy Digital Day!

Why do I love the digital age?

I can scan all of Joey's paperwork into my computer. If I lose anything, I just print it again. In meetings with really savvy folks, I don't have to print it at all; I can just search the desktop for what I need. Oh, and can cross-reference with supporting studies and articles, which I can also keep on my laptop for quick access.

I can get research materials delivered right to my laptop. Most journal articles are available in digital formats through my library website, which makes them searchable and instantly retrievable. Many books are also available this way. No need to go plowing through card catalogues for hours trying to find something that might or might not be relevant to what I am researching.

I can talk to my friends and send them awesome cards instantly.

I can send a letter to a friend in India, and get a reply as soon as they log in- sometimes in 15 minutes.

I can carry my entire collection of music and books in my hand, all the time.

If somebody asks me to back up facts about anything with hard study, I don't have to come back in a couple days. Now I can just say, "OK. Give me five minutes... oh, wait, here you go."

I can shop for fabric online, not just be limited to whatever they happen to have at my local store.

With one tweet, everybody can know what's up.

I can have a lot of photos in one frame on my wall- it changes every 2 minutes.

My students have Instant Access to their professor, any time of day or night.

I can watch movies in my house.

I can work from my house- and have a job that is sufficiently challenging and well-paid.

I can reach my son's teachers with important information, day or night.

I can own a computer, and have it fit in my hand.

I know you. And that is totally awesome.

Friday, October 08, 2010

He's good at math.

I had my sixth meeting with school folks today. This one was completely different. For one, the principal called me and asked for the meeting. For two, I didn't go in with a powerpoint or notes about my kid's strengths and weaknesses, drawn up specifically for the meeting. I just took The Notebook.*

Apparently, they figured out that when I said Joey is "good at math", what I meant was, "he's frickin' BRILLIANT at math."

So the principal wandered into Joey's class, mostly to see how he was doing. Often if Joey is having a hard time, and Mr. R walks in, Joey can pull it together and at least get to his desk (kind of like having the CEO come in to your office, even if the politics around there are awful... you do your best to pull it together so you don't get fired). So he sometimes just pops in and checks.

It was math time in the inclusion room, and the class was busily working on a math test. Well, everybody except Joey, who was at his computer. Mr. R immediately asked why Joey wasn't also working on his math test, and Ms. C handed him Joey's test: he completed it in about two minutes, and got a 100% on it.

Yeah, Joey is good at math.

Whatever else I might say or think about Mr. R, he definitely has this going for him: he knew this was Not Right, and that having Joey bored in a classroom would aggravate the problems we're already having. Hence, the meeting today.

The plan is to see where he is in math skills, and get him in a proper math section, even if he has to be in a fourth or fifth grade section. If he goes to a fourth or fifth grade section, he will absolutely have to have his own aide to take him and help him navigate all the non-math stuff that one deals with in a classroom while learning math. As I said to Joey's kindergarden teacher, Ms. S, long ago: It's not the academics that are the problem. It's Everything Else.

It was a really interesting meeting. We were seriously trying to get a general idea of what might happen if he blew away the fifth grade test and needed sixth or seventh grade math instruction. They saw it as a very real possibility. They were serious.

So was I.

*The Notebook contains all the papers, IEPs, letters, emails, etc. for a given school year. We're already into a 3-inch binder for this year.

Tuesday, October 05, 2010

Back to School Blues

Welcome to Week Five of the school catastrophe. If there was a mistake to be made, we've made it; we now stand as an example of why appropriate service is absolutely vital to the success of a disabled child in school. You can't just shove a child into a program, it has to be individualized with appropriate support- both in quantity and quality, and year-round. Poor transitioning results in disaster.

Transitioning seems to be a major weak point in our school system and faculty training. The teachers Joey has are, to be clear and honest, working their butts off trying to get his puzzle figured out and come up with appropriate solutions to support Joey. However, it is hard to think of solutions when you don't have sufficient understanding of or training in the problem. When one tends to focus on behavior rather than understanding communication and issues, everything becomes a problem of discipline. This can be reinforced when Joey can pull himself together enough to be functional when someone such as the principal or one of his old teachers comes into the room. That the distraction might give him extra incentive to swallow the frustration he is trying desperately to communicate is something that seems ignored, or at least unrecognized. How does one get teachers to recognize that my child is so overwhelming, he has shut down?

And in the meantime, what to do? I have a child so completely overwhelmed, his teachers feel the need to separate him, and have gotten to no academic work in five weeks. When I say this child has shut down, I mean he becomes so completely non-functional that he is removed to a 1:1 self-contained setting- and still gets nowhere. How do I help my child survive this problem of transition, this overwhelming new-ness, this bump on his road?

When the stress is overwhelming, what do you do? After all, shut-down is not an option for most folks who read this blog. We have to keep going, keep functioning. Our children are depending on us to be functional. We're not allowed to be tired and overwhelmed. How do we dive through anxiety, exhaustion, depression, and frustration, to come out the other side with smiles, clean clothes, and possibly a cooked dinner?

Tomorrow, we are going to the doctor with Joey. I haven't yet gotten him into a psychiatrist, so we are going to try a back door- our family physician- to see if there is anything we can do; in other words, we're exploring medication. This is a touchy subject, and I am sure I will get comments and emails, some in great detail, for both sides (pro and con); but sometimes you realize you are fast running out of options, and running out of time, and damage is being done. Sometimes you have to examine the options, so that educated, reasonable, and informed decisions can be made. If Joey continues to be overwhelmed and uncomfortable at school, we could go from bad to worse in a way that would be even more catastrophic.

We'll keep you posted.

P.S.: What she said. That's kind of my life right now.

Sunday, October 03, 2010

And How Was Your Weekend?

Well, it's a good thing we went to the farm and had a hayride, so we could get this:

Because the rest of the weekend, we had this:

It may be a long week, folks.

Friday, October 01, 2010

I think Andy likes his teacher.

Andy and I had a little chat about his teacher. Her name is Mrs. Woodfolk. Every now and again, we refer to Andy as an elf, fairy, or (more often) brownie, because he has that sparkly, elfish quality about him.

"So, Andy, how do you like your teacher?"
"Oh! She is named for the people who live in the woods, the Wood Folk! You know, fairies! Because she is one! Just like me!"

I think we may have a winner here.

Meeting #5

Three IEPs, one meeting with the principal, and now one meeting with the Director of Student Services later...

Well, I think I made some things very clear today.

I think the school OT sucks, especially professionally.

Summer for Joey is going to look very very different from now on.

I know what a transition is, and everybody else better get on board with how it is done.

I expect people working with Joey to get some training in autism.

If this happens with the next school, I am going to have a conniption. I mean, a worse conniption.

But once again, by actions shall all be judged...

Wednesday, September 29, 2010

Happy Mountain Day!

Wish I could take the day off and go play in the leaves today!

Tuesday, September 28, 2010

We had a meeting.

Nothing makes you feel quite as much of an ineffective failure as an IEP meeting. I went in with a 31-slide presentation about Joey, a 3-page handout of concerns passed out a week before, and I came out with... a flip-flopped schedule. He'll go to math in the inclusion room, and language arts in the self-contained room.

Some things got said. The school OT insisted the IEP go back to consult-only because she "can't deal with his behaviors in 1:1". She's right. She can't. Because she doesn't have the skills to provide my child with appropriate OT. And I said so. I don't think I beat about the bush, either. I'm not happy because my child clearly is in desperate need of OT services, but this lady definitely does not have the skill set to provide them, and there is no other OT in the school. Is that clear enough?

We tossed around some strategies for dealing with Joey's issues, because I learned at this meeting that 3 weeks into the school year, and the inclusion folks have been able to do zero academics with him. The school folks asked how long it took for Joey to settle in at the last school. They were a bit unhappy when I noted he was settled in within a couple weeks there. We're not even close to settled here.

But in the end, what actually happened? We flipped his schedule. Woo. Hoo.

It may help. It may not. Im not sure they understood why they were doing it, just that it was a suggestion tossed out there to try.

I'm working on a follow-up letter. This is starting to get ugly.

Saturday, September 25, 2010

At the Fair

We arrive, all in one piece. Which is pretty good for us this year.

Watching the hog judging with Dad.

Looking out for Wilbur. The boys really enjoyed watching the pigs being judged. We actually watched two and the start of a third category in pig judging.

Hooray for the fair! I have a picture of my Dad and his Mom in this very same little cut-out.

Andy liked the rabbits.

Joey loved them, too. They're soft.

There was some unusual livestock, a few different breeds than we usually see- totally awesome.

We got to watch some sheep shearing, and there were plenty to pet this year.

Joey liked the 4-H projects, too.

Andy dreams of winning his own ribbons someday. And owning a bunny.

Joey and Andy both liked the alpacas. The alpacas were not too sure if the feeling was mutual, but Joey did get to touch one.

Time to get on the midway! Rides first, then games. But Mom doesn't do so well in taking pictures of playing games.

Joey on his Crazy Bus ride, one of his favorites.

Andy is still small enough to go on some of the kid rides, like the pony cart.

Joey went on the bumper cars, but got "stuck in traffic."

He liked the jalopies mostly because he could just sit and ride.

Andy liked them, too!