Online survey aimed at parents of autistic children
Participants are being sought for an online survey that explores elements of
autism as part of an honors thesis project. The survey has been developed to
be taken by the parents/primary caregivers of children on the autism
spectrum. This survey involves the gluten-free, casein-free dietary treatment
for children with autism spectrum disorders.
Read the full story on Live: http://ping.fm/kd2eg
Sunday, August 17, 2008
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.
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Portland houses of worship try to include challenging members
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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."
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.
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?
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.
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."
Thursday, August 14, 2008
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.
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.
Sunday, August 10, 2008
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
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
Friday, August 8, 2008
Summertime Dream
Summer daycamp has come to an end. Nathan's not happy about that. Neither am I, to be honest. It was so nice to just be like a regular mom, for a change. I could just drop him off, and not expect the phone to ring, telling me to come and get him. I didn't have to coax him into going. He was happy there, and I didn't have to fear, every time I dropped him off. It's a luxury I never get, and I'm so sad it's over.
Now I have to prepare for school to begin. Oh how I dread that. I keep telling myself that it's a new teacher, and that can make all the difference in the world. But how can you be optimistic when year after year it's been horrible?
I don't want the battles. I don't want the frustration. I don't want the restraint. I don't want the judgemental advice. I don't want the medical advice.
I just want my boy to have a positive experience at school. I want zero restraint. I want positive attitudes. I want people who accept the diagnosis, and don't inject their own opinions. I want my son to do well. I want him to be happy. I want him to have friends.
I want the school to realize that I want my son to succeed academically. I want him to be polite and well behaved. I want him to study, and participate. I want him to love school, the way he loves learning. I want the school to see the Nathan we see at home. Happy. Helpful. Bright. Cooperative. Productive.
I don't want the anger over his symptoms. I don't want his video game obsession to be constanly under attack. (I don't send the game to school, it's not like that - he just talks about little else, and it really pisses them off.) I don't want them telling me that "we don't think he has sensory issues" or "we don't think he's really autistic." I don't want to hear that "all he really needs is more discipline." And I especially don't want to hear, "He's just manipulating us!"
Give me a frickin' break.
All the moms I work with are getting excited that the kids will be returning to school soon. Not me. I'm in tears over it.
Now I have to prepare for school to begin. Oh how I dread that. I keep telling myself that it's a new teacher, and that can make all the difference in the world. But how can you be optimistic when year after year it's been horrible?
I don't want the battles. I don't want the frustration. I don't want the restraint. I don't want the judgemental advice. I don't want the medical advice.
I just want my boy to have a positive experience at school. I want zero restraint. I want positive attitudes. I want people who accept the diagnosis, and don't inject their own opinions. I want my son to do well. I want him to be happy. I want him to have friends.
I want the school to realize that I want my son to succeed academically. I want him to be polite and well behaved. I want him to study, and participate. I want him to love school, the way he loves learning. I want the school to see the Nathan we see at home. Happy. Helpful. Bright. Cooperative. Productive.
I don't want the anger over his symptoms. I don't want his video game obsession to be constanly under attack. (I don't send the game to school, it's not like that - he just talks about little else, and it really pisses them off.) I don't want them telling me that "we don't think he has sensory issues" or "we don't think he's really autistic." I don't want to hear that "all he really needs is more discipline." And I especially don't want to hear, "He's just manipulating us!"
Give me a frickin' break.
All the moms I work with are getting excited that the kids will be returning to school soon. Not me. I'm in tears over it.
Thursday, August 7, 2008
The Ortho
I went to the ortho again today. I'm all done with PT, and I don't go back to the ortho until the end of October! YAY!
My range of motion has greatly improved, and so has my muscle tone, and my strength. The pain has really improved. If I reach behind my back, I still have trouble, but I've gotten to the point where this just isn't so necessary anymore, and each week I can move just a little bit more in that direction. I haven't taken any pain meds in weeks, either. Never liked taking that stuff. (I have a high pain tolerance anyway.)
The doc told me to wean off the double dosages of Celebrex, but I've already been doing that. Once in a while I take a second dose, when the pain gets strong again, but that only happens about once or twice a week anymore. He told me this was fine.
I'm not back to full use. I don't lift anything heavier than my purse. And I don't lift anything with my arm extended at all. Or over my shoulder height. But at least I'm able to function in my everyday life again. I can drive. I can hug my son. I can sleep.
It amazes me that a few months ago, my GP was telling me that I'd have to learn to live with that pain. The nurse told me "getting old is tough." Shoot. Old?? I'm not old. Grey, yes, but not old. And I'm not ready to give up having a left arm. Now why couldn't they have sent me to PT like my ortho did??? Sigh.
I love my Ortho!! :)
My range of motion has greatly improved, and so has my muscle tone, and my strength. The pain has really improved. If I reach behind my back, I still have trouble, but I've gotten to the point where this just isn't so necessary anymore, and each week I can move just a little bit more in that direction. I haven't taken any pain meds in weeks, either. Never liked taking that stuff. (I have a high pain tolerance anyway.)
The doc told me to wean off the double dosages of Celebrex, but I've already been doing that. Once in a while I take a second dose, when the pain gets strong again, but that only happens about once or twice a week anymore. He told me this was fine.
I'm not back to full use. I don't lift anything heavier than my purse. And I don't lift anything with my arm extended at all. Or over my shoulder height. But at least I'm able to function in my everyday life again. I can drive. I can hug my son. I can sleep.
It amazes me that a few months ago, my GP was telling me that I'd have to learn to live with that pain. The nurse told me "getting old is tough." Shoot. Old?? I'm not old. Grey, yes, but not old. And I'm not ready to give up having a left arm. Now why couldn't they have sent me to PT like my ortho did??? Sigh.
I love my Ortho!! :)
Tuesday, August 5, 2008
You can't.
I'm so sad.
Nathan met this boy at camp, and they became close buddies, right off the bat. The other boy is about as obsessed with Pokemon as Nathan is.
The other boy wasn't going to be in camp for this last week. They exchanged phone numbers and stuff, so they could keep in touch. The other boy wanted to get together, and said he would ask his dad if Nathan can come over.
Nathan finally got ahold of him tonight, after a few days of phone tag. They excitedly went on about Pokemon - it was really cute. Then Nathan asked when he can come by.
The other boy asked his mom when Nathan can come over, right then and there. She said, "he can't."
The other boy relayed this to Nathan, then quickly ended the conversation.
I am so sad for him.
I'll try this weekend or early next week and see if maybe we can take the boys to a movie or something.
Nathan met this boy at camp, and they became close buddies, right off the bat. The other boy is about as obsessed with Pokemon as Nathan is.
The other boy wasn't going to be in camp for this last week. They exchanged phone numbers and stuff, so they could keep in touch. The other boy wanted to get together, and said he would ask his dad if Nathan can come over.
Nathan finally got ahold of him tonight, after a few days of phone tag. They excitedly went on about Pokemon - it was really cute. Then Nathan asked when he can come by.
The other boy asked his mom when Nathan can come over, right then and there. She said, "he can't."
The other boy relayed this to Nathan, then quickly ended the conversation.
I am so sad for him.
I'll try this weekend or early next week and see if maybe we can take the boys to a movie or something.
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