Posted by: jbkautismwheel on: January 9, 2011
Ian had a god-awful experience with my long-term (25++ years) dentist and his hygenist when he was about 4.5 years old. It was prior to his diagnosis of high functioning autism…but still it was a bad experience for any kid. I won’t go into a lot of detail but let’s just say we didn’t even begin to talk about going back to dentist until he was 7.
So we first started reading the dentist stories – what they do and tools they use. Just to refamiliarize him with the process. But in my heart, I knew we had to find someone new. So I called around to a couple of pediatric dentist offices. Told them our situation and a couple of the front office people said the right things, but when I asked about being back in the treatment room with him, they hesitated.
Not Dr. Erin Carpenter’s office. Her front office staff said “of course! Would he be better off with an end of day or beginning of day appt? We’ll keep it to just him so he doesn’t feel overwhelmed that hour.” Wow.
We went in for a meet and greet and if he wanted, a cleaning. They let him touch everything. Use mirrors to see what was going on. Explained in however much detail he wanted on what they do and their tools. They did x-rays…he was so excited about the pictures that after several tries (and much patience on their part) when he saw his first x-ray, he was able to stand absolutely still to get the whole head x-ray. (“Wow Mom! I look like an alien!!!”)
Fast forward 6 months, we go in for a cleaning and he’s got two cavities – one that hadn’t shown a clue six months ago and has become huge and a very tiny starter cavity. Dr. Carpenter was mystified on how fast the big one had grown.
Come back a few days later so we can get them filled. Ian decides he wants to try the nitrous (part of his awful experience last time). So they explain in detail how it might make him feel – he decides to go ahead.
An hour and a half later we have one crown (yikes!) and one cavity filled…and a boy who thinks having a metal tooth (in the back) is cool!
I cannot begin to say enough good things about this practice! They get it. They understand that every kids needs to be approached differently and some kids need more than others.
Most importantly, I am so proud of Ian, because he overcame something he was deathly afraid of and is now extremely proud of himself.
I am too.
Posted by: jbkautismwheel on: January 8, 2011
Sorry I’ve been missing in action the last few months. Let things get too out of balance regarding work. I’m going to be posting over the next couple of weeks on:
“Who’s your network?”
“Ian’s excellent dental adventure”
“Socially Speaking”
Blog with you soon!
Autiemom Julie
Posted by: autiemomkate on: January 7, 2011
I’ve told a couple of people that I cry at Chris and Luke’s school almost too often, and I got another reason lately, and I didn’t want to let this joyous season go by without explaining. We moved last year to get into our current school district. You can read about some of the research I did to find our current school back in an intuitively-titled previous post, but the clincher was interviewing with the principal, bringing along my slew of reading material and justification (including my books from Wright’s Law and several of the “what they wish you knew about autism” books—on the Recommended page) and having the principal point out that she had the same books in her own library right next to the table we sat at. After the meeting, I had a good sob in my car for a couple of minutes and then called Karl to let him know we’d found a good fit.
Since then, we’ve experienced kind of a SpEd Nirvana. People in Littleton School District’s elementary ed are absolutely gifted at figuring out Chris, how to engage him, and how to help him (and us) thrive in their environment. He’s doing more of his own work independently than we’ve ever seen. We have also enlisted the help of a tutor who comes twice a week. She’s trained in ABA, working toward her master’s, and she’s helped Chris find his voice to start to ask for help, compose original paragraphs, remember times tables and monitor his own progress in assignments.
What are they doing that’s so marvelous? They’re making him accountable for his output. This includes turning in homework on time, finishing classwork, asking questions when he doesn’t understand, behaving himself like the young man he’s becoming before my eyes. They expect it of him. And he delivers.
So what made me cry lately? A mom. I work with her in the PTO. She is raising a couple of NT kids and asked me about autism the other day. Her daughter has an autie (not Chris) in her class and wants to know how to be his friend but doesn’t know how. This mom wants to raise her kids to be compassionate and understanding, so that autism is just another thing people have sometimes. She asked if she could come to me with “stupid questions” about autism and how to help her kids be friends to their autistic classmates. After another good sob, I insisted
If I could impress one thing on any person who cares about a person with autism, it would be this: expect excellence in every interaction, every process, every product of that relationship. Demand it. Demand respect, dignity and thoroughness, and impress upon them that they should expect the same fromyou. Help them realize that what they do is visible and leaves a permanent impression. Reward good behavior proportionately, and be willing to admit to it when you make mistakes. Believe in them, and give them reasons to believe in you. They will meet your expectations, so give the best and expect the best.
I have many, many reasons to be grateful as 2011 gets underway. I am grateful to my children’s teachers, administrators and staff for paving the way for them to thrive. I’m grateful to our neighbors and friends for their compassion and willingness to stay engaged and curious around my kids. I’m grateful to the voters of Arapahoe County for approving school funding. I’m grateful to Littleton Public Schools for achieving top rankings in Colorado for academic success and the Littleton School Board for their leadership.
I’m grateful for my family, for my dear Karl, whose generosity of spirit is matched only by his determination to create a fulfilling and interesting environment for our kids. He never gives up and always keeps hope in his heart. And I’m grateful for Chris and Luke. I see their optimism as a signal that we’re doing OK. They look forward to the new day as a mountain to be climbed and then shouted from the top of (pardon the dangling participle in my maternal enthusiasm). And all those people behind them—us; the school; the district; the Autism Society; fellow Autie Moms Julie, Betty, Carol and Audra; the football team; the gym; Club 4 Kids; my coworkers (who I also consider my friends)—helped make their optimism (and mine) possible. I thank you all deeply and profoundly.
Posted by: autiemomkate on: January 6, 2011
Dear Dr. Grandin,
I am the mother of two children, one developing typically and one developing autistically. We watched the HBO film Temple Grandin over the holidays. My husband and I had seen it once before but decided it was important for both boys to see it as well, so we watched it as a family.
You have mentioned in your books, and your character mentioned in the film, that you want your work and your life to mean something. I want you to know that, not only have you provided me a wealth of information as a parent and advocate, but you have also provided a role model for my autistic son. We watched the film together, replaying interactions and conversations to make sure Chris understood them. After we finished, he told me, “I’m going to start acting more like Temple Grandin.” Now, that might mean that he wants to learn to control his impulses to hop and flap when he gets excited. It might mean that he wants to attend class without a para assisting him most of the day. But it might mean more, too.
I can’t express my joy at hearing him, at 10, start to think about his ability to achieve his dreams. You have provided a vehicle for him to understand that he CAN direct his learning, he CAN advocate for what he wants, he CAN solve problems and achieve his own goals. For that, I am grateful.
We had a good laugh at the “Would you like for me to open the gate?” scene. He likes to run lines from his favorite programs, too, and was delighted when it turned out that the line from the program worked so well in real life. We’ve had those moments, too.
What struck me most, though, about his reaction to the film was his interest in your problem-solving techniques. As a fourth grader, he’s only just beginning to develop critical thinking skills, but you provided some food for thought about how to convince people that what you want is reasonable, even if it looks strange at first. While I can tell him those things, I don’t share the bond of autism. You do, and your story has galvanized him. He got to watch you refuse to give up, think of new ways to argue your point or solve a problem, and he’s realizing that he can do that, too.
Thank you for providing a concrete example of a successful, determined adult who uses her autism to solve problems and find compassionate solutions for animals and humans. You have shown him that he can be his own advocate and take responsibility for carving out his own place in the world. You have demonstrated what I can only talk about. Thank you for sharing your story with the world, but thank you, particularly, for sharing your story with him and other young people with autism.
Posted by: autiemomkate on: December 7, 2010
This is a brilliant posting I found on one of the Yahoo groups I subscribe to. If you haven’t looked into them yet, gems like these come along frequently, but I wanted to share this one, with the author’s kind permission (thank you, Kristen) because it’s something I don’t have insight on yet, since Chris is still in elementary school.
The question is how to help your autie make a successful (read “mostly independent”) transition from high school to college. Here is one fellow autie mom’s answer, edited only slightly because it included references to other replies:
Where’s the line between supporting independence and enabling by “doing for” our kiddos? My son N. is a Junior now at CU, and it’s been a struggle sometimes, but we’ve learned a lot. College was a given. He was going
Unless he could prove to us that he could make a living some other way. Here are a few tips/reminders that helped us along the way:
Remember that graduating HS and going to college is a major time of “Transition.” Think about how your kiddo does with transition. (My son gets scared and anxious, and that looks like him “checking out,” not moving forward on his own and not wanting to do anything but play video games). Lastly, be careful in saying that your child “could never” turn in work on time or be organized enough, etc. You could be surprised. My son is doing things I never imagined he could. I think the most important thing that helps our family is the fact that we have a “Help N. in college Support team” consisting of extended family, professionals, family friends and the college staff. If we didn’t have a team we purposely put together, I would be stressed out trying to do and figure out everything myself. Good luck during this transition time!
-Kristen
Posted by: autiemomkate on: December 2, 2010
Hi everybody! I haven’t posted in about a week. Sorry about that, but I have an autie who’s turning 10 in just a coupla, so been pretty occupied with that. Here’s a link to some helpful holiday tips while I do the birthday thing. Back soon. In the meantime, if you have ideas or things that work for your family over the holidays, birthdays and other reasons to celebrate, leave a comment and share with the community.
In this blog post, autism advocate and writer Laura Shumaker offers eight tips to help families and children affected by autism survive the holiday season. Being careful not to overstimulate children’s senses with decorations or too many toys, and being prepared for meltdowns by soliciting extra help and arranging for separate transportation are among Shumaker’s suggestions. http://www.sfgate.com/cgi-bin/blogs/lshumaker/detail?entry_id=77993
Posted by: autiemomkate on: November 18, 2010
I’ve been giving this some thought lately. When you live in a family, any kind of family, you end up having to work with/around other people’s behaviors. The difference, when you live with someone with autism, is that you’re coming at behaviors from different perspectives. It’s still communication; it’s still interaction. It’s just that you go into it with a different set of expectations.
Parents raising kids with autism have to get out of the house just like parents raising typical kids. Everybody needs a chance to recharge their batteries (this includes the kids, too) around other people. The problem with autism is getting a babysitter to show up twice. After going through all the teenage girls on our block, I can attest to the fact that it gets demoralizing to have to listen to adolescent girls stumble around for nice words to say, “I do not want to babysit your kid because he’s confusing and a little scary” when I know my boy and his behaviors and how good he actually is. It feels easier not to try to go out instead of feeling like you have to beg for a little time to yourself.
But it’s necessary. For you and for him or her or them…completely necessary and completely healthy.
Enter flexible thinking. Instead of reinforcing the rigid thinking patterns and scheduling you—and because they learn what we model—your child can fall into, you need to shake things up. You need to be able to think straight for a moment. Your child or children need to be able to behave themselves around strangers, other kids, and other adults. They need the exposure to new experiences.
And, like most of your experience with autism, it takes repetition: it’s not a one-off “oh, great, now my kid knows how to deal with other kids” experiment. It’s a process. You have to provide the opportunity to expose your child to other people repeatedly and let them succeed (and fail) repeatedly before it becomes part of the landscape.
If babysitters don’t work, and you’re sick of hearing from your MIL how your husband never behaved like that when he was little, it’s time for a new plan. In the Links section, click the Gimme a Break link. The Autism Society of Colorado trains caregivers who specialize in respite for parents (this means the caregivers know what autism looks like and understand what to do). Give them a chance, give yourself a chance, and give your kid a chance to do something new. If it’s scary to bring a stranger into the house, do it anyway.
Also in the Links section, click the Club 4 Kids link. They are a drop-in care center. They don’t specialize in autism, but they are run by moms, some of whom are special ed instructors in the public school system. They have recommendations from the STARS program here in town. They have asked me to let you know that they are willing and able to care for your autie or aspie with compassion and understanding. I can vouch for them because we’ve been taking Chris and Luke there for about 8 years and have never had them call us in the middle of dinner because they couldn’t cope with Chris’ needs…it’s never happened. Imagine a whole dinner…out…without being a spectacle. It’s beautiful.
And then, go pick them up or go home and kiss them good-night. You will feel refreshed and be ready to handle the next onslaught (there’s always a “next” onslaught), and you will have opened the world a little for your child or children, too.
Posted by: autiemomkate on: November 9, 2010
I’d been meaning to visit Beau Jo’s Pizza for one of their Autism Society “pizza nights” for some time. We’ve been plugging them on the blog, and it sounded like a really good idea, but Wednesdays can be kind of busy around our house, what with the tutor finishing up at 6PM and then the rest of the night to contend with. But this time, we made it. And what a great night!
First of all, I must express my gratitude to Beau Jo’s for opening their restaurant to “our people.” Autie Mom Julie brought the clan, too, so there were auties and enties at our table, adults on the Spectrum, kids, adult advocates, probably around 50 people or so, all told, during the evening. The food was great, the company was outstanding. And it all came off without a hitch. How many times can you say you’ve brought your kids (autie or typical) to a restaurant and can come away saying that??
So: good for Beau Jo’s! We had a great time, the kids played, the grown-ups talked. I got to meet some more advocates…it was like regular going out to dinner.
I know it can’t have been easy, training a wait staff to handle a crowd of people who are susceptible to bright lights, loud noises, crowds, unfamiliar places…but they did it. I hope they will one day show other restaurants the secret of their success, but for today, I just want to say to them: “Thank you for opening your hearts and your space to my family and my extended circle of friends and fellows. Your generosity of spirit and willingness to welcome us in (and back) is much appreciated.”
If you haven’t had the chance to visit Beau Jo’s for their Autism Society Pizza Night, I heartily recommend it. We went to the location at Colorado Blvd and Yale. It’s the first Wednesday of every month, about 5:30-7:30. It’s well worth the trip: fills the tummies and warms the heart.
Posted by: autiemomkate on: October 28, 2010
There are evenings when my house sounds ordinary, and it’s so special when it does. It’s an evening when Karl can get his homework done. I can catch up on email. And we can breathe.
We’re not finishing times tables at the kitchen table for the umpteeth time because that’s what it takes. We’re not listening to an increasingly-frustrated boy trying to remember the order of events in the story he just spent 30 minutes reading and now can’t recall because sometimes “autism scrambles my brain.”
After a week of IEP review and tutors and communication between the SpEd staff and home about how Chris doesn’t want to be in the 4th grade musical show and how he doesn’t talk about anything personal in his life except Scooby Doo during his social skills pull-out…bang head here
…it’s so nice to listen to the sound of the boys tonight.
Chris is playing a new racing game on the PlayStation. He’s really good at it, and he has Luke cheering for him. That makes my heart sing. I can hear both of them participating in the moment. Chris yells about how fast he’s going, and Luke encourages him to keep going…then they laugh…wow. So this is what it’s like to have an ordinary evening.
I want to take a mental picture of this moment because I know there will be tantrums and thrash tomorrow as Chris struggles to come up with a couple of paragraphs for his reading journal.
But for tonight, I get to hear my boys having fun…together…my entie and my autie, just acting like brothers.