A Reassuring Phonecall

When I was at work last night, I found a message on my voicemail. It was from my son's bus driver! I had made up a bunch of business cards for Nathan last year, that stated that he has autism, and here are some things to be aware of (like not to touch him, he has trouble communicating when he is upset or frustrated, etc.) I've asked Nathan to give these cards to any new bus driver he has, and to substitute teachers, and to daycare people. The card has Nathan's picture on it, as well as my cell phone number, just in case.

The bus driver called me to let me know that she has a grandson, slightly older than my son, who has autism, and she is familiar with autism, and she will have a lot of patience with my son. She also asked if he required any special seating considerations.

I was so surprised! And thrilled! I didn't need to ask for any special considerations for seating, but it is so good to know that they are willing to do this if needed. And it's just great to know that someone undertstands; someone who spends a great deal of time with my son during the course of a school year.

I thought that was very nice, that someone would take the time, her personal non-work time too, to call me up and reassure me that she understands and will be patient. It was above and beyond, and greatly appreciated. (I'm sending her a thank you note this morning.) It made my day, and makes me feel a lot better about this school year.

It's good to know that there are people in my son's world who will take that extra step, offer that understanding ear, and demonstrate a patient heart.

One Big Pickle

Last week, dh was on vacation. He and Nathan made a few fishing trips, and after one of them, they stopped at a farm stand outside of Delavan, Wisconsin. Dh is a fanatic for green beans, so he got some of those, some sweet corn for me, and then he picked up a very large zucchini (which surprises me, because he is not a zucchini fan).

Nathan took one look at the zucchini and asked, “How come you’re buying a big pickle?” ROFL! The woman at the fruit & veggie stand got a BIG kick out of that!

When I saw the zucchini, my immediate thought was, oooo, zucchini bread! So I took the opportunity to show Nathan how to make it. First I made a batch, and he assisted me. Then, since I had a ton of grated zucchini left over, I told Nathan, “Now it’s your turn.” I washed out all of the tools and lined them up on the counter, with the ingredients, and, “Go to it. There’s the directions.” Then I left him alone. He was confused at the end, because he didn’t have a bread pan to use (I had used my two glass ones with my batch).

I smiled and asked, “Do we have to bake it in a bread pan?”

He scratched his head and said, “Bread has to be a loaf, doesn’t it?”

“Absolutely not.” Then I handed him a bundt pan. “This is what I used to use when I made zucchini bread for my family when I was a kid.” He grinned.

He seemed to like that idea. I’m not sure if he just liked the idea of a circle of bread, or if it was the realization that I used to make bread for my family as a kid, the same way he’s making bread for his family.

Nathan will NOT, under any circumstances, eat any green veggies, other than green beans, and peas (if I make him). Which, by the way, was the whole purpose of my choosing to make bread with the zucchini, instead of just enjoying steamed zucchini by myself (which I love). I’ll take any opportunity to get green veggies in him, even if I have to sneak them into bread or cake. But not only did he taste some of the raw, grated zucchini, but he had a taste of the uncooked batter, too. That’s really odd, because he doesn’t like to try new things. He even tasted the raw flour for a change, but that fell understandably flat. He was much more appreciative of the batter, since it tastes kind of like cake batter. But we had fun tasting the stuff before it was baked, so we could see the difference after it was baked. He wasn’t impressed with the flavor of the “before” zucchini, either. But you should have seen the look on his face when he got to sample the finished product! His eyes were as big as saucers. Then, when I put a light sprinkling of cinnamon sugar on it, he exclaimed, “That’s the best bread, EVER!”

Success!

But he’s not happy with me calling it “Big Pickle Bread.” Heh heh heh Something tells me he’ll never live that one down. ;)

The Dread Sets In

My stomach is in knots. And it's been getting worse as the day goes on. Tomorrow is the first day of school.

I know I don't have much control over this, and there's every reason in the world to believe that this year will be different. But still, past history rears its ugly head, and my stomach does flipflops.

I keep telling myself that he's grown so much during the past eight months. Amazingly so. He's much more mature and much more independent than he was last year.

In summer camp, he was so outgoing and friendly, they made of point of telling me that he has terrific social skills. I've never heard that before. Ever. He was always the loner. I have pictures of him that they took at school, where he stood off by himself, just watching the kids on the playground. Heartbreaking. But now, he's making friends, and playing games nicely with them.

At the end of last school year, he won an award. He wasn't there on the last day of school (they only go for an hour and a half, and he was really sick, so I sent him to Grandma's), so he didn't get his report card, or this award. I didn't even know he was going to get an award! When I took him to school for registration about a week ago, they finally gave me his report card from last semester (gee, thanks a lot - how swift), and this award. Wow. It was for Most Improved, in Independence! You know, that's no small thing to us, and it would have been nice to have seen this last June, when he was awarded it. Too bad they couldn't have popped his report card and his award in an envelope. Anyway, I digress. (Sorry. School nerves washing over me again). It was validation for what we have been seeing in him as well. This summer was the first time we left him alone for a short period of time, and it has been a huge success. He has been offering to help around the house, and doing a good job of it, too. He's cooking! Not just out-of-a-box stuff, but he's learning to follow recipes as well. Cooking main courses, even! (I'm so proud!) I wouldn't have pictured any of this last year.

On top of all this, he is learning a little more self control. Okay, this still needs a lot of work, but it's improved, and I'll take all the improvement I can get. He's demonstrated a bit of self-awareness, which really gives me a great deal of hope and optimism. I'll say to him, do you feel yourself getting upset? What can you do to calm yourself down? And he answers in the affirmative now (he used to deny that he was upset, even though it was very obvious to those around him), and he tries to calm down! HUGE! Sometimes it's hard for him, of course. He's had very little practice in controlling himself. But he's trying! He's trying! (Can you hear the relief in my voice?)

At home, we haven't seen a meltdown in so long, I've forgotten when it was. I love this. Has he gotten upset? Sure. But he'll go off to calm himself, most of the time after a prompt from me or dh, and then he comes back when he's more in control. He doesn't often get made at his games anymore! With a new game, he'd often get frustrated while on the initial learning curve, and growl or do foot-stomping type of expressions of anger. I can't remember the last time I saw that, either. Incredible.

Once during the summer, Nathan said to dh, "I have autism. I can't control myself." We responded with a loud and firm, "BOLOGNA!!" We had a conversation at the time about how everyone gets mad, but it's what you do with that mad that makes the difference. Because of his autism, he might get mad about something, but that doesn't mean he has to allow that mad to take over and have control. He can make choices about how to deal with it. He can go off by himself to calm down. He can take deep breaths. He can run around the house a few times to burn off steam. He can do things that help the mad go away or get easier to ignore. For once, it felt like a lightbulb went on. He seemed to have believed that because he had autism, he had no power. He was going to get mad, and it was going to be more than he could control. So why bother. Now, he is getting it. He's realizing that he has a say in how he responds. It's like the cowardly lion in the Wizard of Oz. The lion believed he didn't have courage because he felt fear. But once it was pointed out to him that courage doesn't mean the absence of fear, it means acting In Spite Of The Fear, then he discovered that had courage after all. I think this is what happens with Nathan. He believed he had no control because he got so mad. But having control doesn't mean never getting upset, it means you figure out how to use it constructively, or how to minimize it so you can continue to function civily. It was very empowering to him. Now that doesn't mean he's suddenly In Control. But he's now starting to monitor himself, and to control himself under the majority of cases. If only he can continue this in school, we'll have it made!

During the school's registration, we met Nathan's teacher. She had an strong kindness vibe that really impacted us. I hope this is an accurate assessment. It's SO encouraging. If his teacher really is kind and patient, that could be the one ingredient that makes this school year an enormous success. I'm hoping. Time will tell.

So I have many reasons to be hopeful this new school year. And no indications of anything that would inhibit him from having a good year. The only thing I do have to worry about is the past history. That's no small factor. But it's not a guarantee of failure, right? After all, they started to actually follow the IEP toward the end of the school year, with excellent results - a significant reduction in the number of meltdowns, and a decrease in severity. So that's good, right? Then why do I feel this impending dread?

I guess because we've done all we can on our end. We've done everything we know to do. And Nathan's doing his best. So it all boils down to: will the school listen? Will they actually follow the IEP? Will they be patient? Will they read the info I send them? Will they abandon the idea that he doesn't need accomodations, he just needs a good swift kick in the pants? Will they treat him like he's a "bad kid?" They are the deciding factor in how this year will go. And that's why I'm afraid. He's done well with certain teachers. Will this be one of them?

It will be better this year. It will be better this year. It will be better...

(my new mantra)

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Read the full story on Live: http://ping.fm/kd2eg

Welcoming Autistic Church Goers

I was so impressed and encouraged when I read this article, I wanted to share it with you. This is from Portland, Oregon.
*****
Portland houses of worship try to include challenging members

Posted by kyan August 15, 2008 21:22PM

BENJAMIN BRINK/THE OREGONIAN

The Rev. Ron Raab (left) of St. Vincent de Paul chapel in downtown Portland talks to Peter Curtin after noon Mass on Thursday about the upcoming church picnic. Curtin, 54, has been a member of the faith community at the Downtown Chapel for 26 years.

During weekday Mass at St. Vincent de Paul Catholic Parish, also known as Burnside's Downtown Chapel, two dozen people stand, kneel, make the sign of the cross and receive Communion.

But one homeless man, who struggles with mental illness, sits when others stand. He crosses himself over and over and over again. His voice is heard above the rest of the congregations as they speak their lines. He dashes from his seat in the last pew to be first in line for the Eucharist.

The Rev. Ron Raab, associate pastor, offers a softly spoken homily on forgiveness. Then, as he leaves the chapel, he bumps fists with the homeless man. The two have become friends.

"He teaches me every day how to be honest," Raab says. "He prays for a shave or a shower. He prays out of his real life, not his pretend life like everybody else does."

Raab and other Portland ministers don't want to second- guess the Bertha, Minn., priest who banned a 13-year-old boy with autism from services, saying his behavior was disruptive to others. But many Portland ministers can't imagine ever doing that themselves.

The Rev. John Beck, pastor of St. Timothy Lutheran Church in Southeast Portland, says his weekly congregation of about 85 includes five to 10 physically and mentally challenged people, including some from neighborhood group homes.

"Sometimes, we need to make accommodations so they can be part of the community," he says. At a recent service, a woman walked to the front of the church and took the microphone. "She can't talk well and she stumbles, but she thanked everyone for praying for her brother," Beck says. Sometimes he must remind her not to put her fingers in the common Communion cup.

Two members with Asperger's syndrome are greeters before services, Beck says. The presence of people with disabilities or those suffering from illness is a blessing to St. Timothy's congregation, he adds.

"All together, we are the body of Christ."

Arthur Zuckerman, senior rabbi at Congregation Shaarie Torah in Northwest Portland, says he helped a teen with autism prepare for his bar mitzvah at a San Diego synagogue.

Was it challenging? Yes. "But there was not a dry eye in the sanctuary when he finished," Zukerman says. "It's easy to chase someone away, but how else would a child receive a Jewish education" if clergy and congregations couldn't be flexible?

Anne Kayser, 45, is the mother of Tom Kayser, 17, who is autistic and has attended First United Methodist Church in downtown Portland his whole life. There have been, she says, some difficult moments. When he was noisy and people who didn't know him turned around in the pew to complain. When he was younger and sometimes aggressive, he would lash out at other children in Sunday school. His parents volunteered to teach his class so they could monitor his behavior.

And the time someone suggested Tom be trained as an acolyte, his mom had doubts. "You want to put a lighted stick in this child's hand and have him walk between hundreds of people?" But he did, with only one close call.

"Now Tom sits with us through the worship service. We've worked on that for years," she says. "He loves classical music, that is his passion. First Methodist is known for sacred choral and organ music, and Tom responds to that."

But, she says, she would not have kept taking Tom to church unless she believed it was valuable to him on another level. "Tom can't understand the theology he hears from the pulpit, but I know he understands that he belongs. He feels at home, safe in a church where he knows most of the people. There is a need for that -- in his life and for most people."

The Rev. Chuck Currie, interim minister at Parkrose Community United Church of Christ in Northeast Portland, says churches deal with disruptions all the time: "crying children, homeless people walking in off the street, people suffering from mental illness speaking out during sermons."

Sometimes, other worshippers' first reaction is "kick them out," he says, but that can't be the ultimate response. "Our call as a church is to minister not just to the well-behaved and the well-dressed. The church needs to be open and affirming of everyone, or it ceases to become a place where you can honestly proclaim the Kingdom of God."

No More Funding

Just heard that the grant that funded my son's behavior therapy may have run out. I'm bummed, but I really can't complain. It was good while it lasted. And I'm grateful for the help that we did receive through the therapy. And I can't expect them to supply therapy support forever.

It's just a shame that it has to end now. I can't afford to continue it on my own right now. Not after the summer we've had. First was the unexpected medical bills. Even with insurance, the out of pocket expense was huge, with specialists, MRI, and physical therapy. Second was the unexpected demise of our car. That really hurt. We had been hoping it would hang in there until my car was paid off in the spring so we could avoid two car payments. No such luck. We had to buy a "new" (used) car, and couldn't even use the old for a down payment - it went to the junk yard. Ouch. So throwing on another doctor bill is out of the question. We're just spread too thin.

I guess I'll have to keep my fingers crossed that Nathan will have matured enough to really improve his behavior. He did do well in camp. He's had a great summer. I've got every reason to be optimistic that he can turn things around this year. Even his teacher seems really nice and kind, and might be just the type of person we were hoping for in a teacher. (Fingers crossed...)

School is just such a big unknown for us. We never know how he will respond there. He had a great summer last year, too, (without meds, too!) but the meltdowns started almost immediately upon his return. Oh well. Maybe this year will be different. He was dreading going back. Me too, to be honest. But once he met his teacher, he really started to get excited about school again. I'm cautiously optimistic. But that's more than I expected to feel. I'd probably be downright optimistic about it, if we didn't have such an awful back history to beat that feeling all to hell.

Nathan's made a lot of progress in the past eight months. He's really grown, and shown a lot more maturity. Perhaps he'll do okay without behavior therapy. I hope so. And DH and I have been working a lot of overtime lately. Maybe that will help us get back on our feet after the summer's financial blows. Maybe we can resume therapy later, if it comes to that.

The news is just very disappointing.

The Autism Handbook

This is a repost of something I wrote last year at this time. I think this could be helpful to a lot of parents and teachers, so I'm going to post it again.



The Autism Handbook

Okay, I've been busy. I put together a "Nathan Handbook," to give his new teacher.

I got one of those 3 ring binders, a "view binder," which has a clear plastic window on the front where you can slip in a cover sheet (or in this case, a photograph). I put an 8 x 10 picture of Nathan on the cover, and put his name down the spline.

Inside, I put a letter to the teacher, telling her that I created this book to help her with working with my son. It has some personal info in the binder, because the more you know about Nathan, the easier it is to work with him. It has some things that we do to prevent meltdowns. It also has suggestions from autism sites for how to teach autistic kids.

I started with "6 Things a Teacher Should Know About Nathan." This is a quick list, stating things like how he has sensory issues, and has trouble with transitions. It also says we want to keep the lines of communication open.

Then I had a "Student Profile." This tells a lot of personal info about Nathan. Some good things about him, his strengths, his successes, our hopes for him, his weaknesses, etc. I'm sure the whole school is aware of Nathan's aggression; I wanted her to know some good stuff, too. And knowing, for example, that Nathan loves certain cartoon characters, could help them reach him when he gets uncommunicative, or if they want to get on his good side.

I included a whole chapter on "Avoiding Meltdowns." This is anything I know that sets off a meltdown, and anything I know of that helps to diffuse it or avoid a bad situation. At the end of this chapter, I included the behavior chart Nathan and I created for his iep. This shows what he looks like as he goes through the steps of getting aggitated, right up to full blown meltdown. It also lists what he might be feeling at each stage, and steps that can be taken to help de-escalate the situation. Hopefully, she already has this, but best to err on the side of caution, right? It wouldn't be the first time the school neglected to give information to his teacher.

I figure the information provided up to this point takes about 7 pages, in large print. Easy to read, and she can gain a ton of info in a short amount of time. Then I also added in printouts from the internet, such as Ten Things Your Student With Autism Wishes You Knew and Ten Things Every Kid With Autism Wishes You Knew. Perhaps a bit repetative, but hey, it's good info. I also printed out various articles from the net regarding teaching guidelines and suggestions for students with Asperger's or autism. Most were from the OASIS site. If she wants to read more in depth info, it's there in the back of the book.

For good measure, I tucked a couple of my business cards in there from the NW IL Autism Support Group, which has the website address, my email address, contact info for the group, and even this blog. (Nobody from the school has bothered to check any of it out yet, but ya never know).

Finally, I tucked the book Can I Tell You About Asperger's Syndrome? into the pocket of the ring binder. I love that book. It's easy to read, appropriate for Nathan's age group, adults can read it and get an overview of what it's like to live with Asperger's Syndrome, and it isn't full of medical jargon. I give this book to anybody who works with Nathan - especially the busy adults who don't have the time (or the interest?) to read anything else.

So now I have my handy dandy little Nathan Handbook. Or our personalized Autism Handbook, for exactly his specific spectral variation of autism. I hope his teacher and para will read it, or at least the first seven pages. Wouldn't it be amazing if we could prevent the majority of the meltdowns?

One can hope...

You can see further details about the handbook here, including sample pages: http://www.rockfordautism.com/Handbook.htm