He even makes cooking dinner interesting
February 8, 2009
I think I’ll be saying this every day for the rest of my life but my son continues to amaze me. He found my husband’s old Nintendo Atari game system. He was so excited because he said it was “old technology” that would work with the “old technology” tv someone gave him the other day. He hooked it up and was very excited to have yet another set of electronics in his room. Then he found my husband’s old Xbox game system. He then needed a newer tv in order to play it. As I often do, I made him some sort of deal that if he did really well in school and with his homework, I would buy him a tv (mind you, it was a $10 tv from value village). He was so excited - and when he gets excited, he’s like shaking and his whole face is lit up. He hooked up the Xbox. Then he found an old amplifier of my husband’s (where was all this stuff stored?), again, very excited. He carried it up the stairs, planted it right in the middle of the kitchen floor (where I was cooking dinner). He went up to his room, grabbed a pair of speakers, brought those down to the kitchen one at a time. Disappeared again. Came back with a bunch of cords. Disappeared again. The next thing I know I hear music coming out of the speakers - it sounded great. He was playing it from his Ipod. I am so clueless about electronics. I was impressed. So, I’m cooking dinner with a wonderful sounding stereo strewn all over the kitchen floor. My life is never boring - even when I’m just cooking dinner!!
CNN covers behavioral intervention
February 7, 2009
I loved reading this article as it is so good to see articles in mainstream media about behavioral therapy and how it works for autism. Unless you live autism every day, the public is largely unaware. If you haven’t already seen and read this, here it is:
http://www.cnn.com/2009/HEALTH/02/04/autism.resolution/index.html
What about the undiagnosed kids?
February 6, 2009
I’m struggling with something philosophically that I need to write about. So schools are often wondering what is the right placement for a child with autism. And with the high functioning kids and Aspergers kids, they can either fall on the side of appearing to not need much services so they go without, or they need some services and get placed in an autism classroom away from NT peers. There doesn’t seem to be a good middle ground, at least in the Seattle Public Schools - they either fit the program or they don’t - period. And inclusion to them means physical inclusion only. The private schools are just as complicated. The school may not want to go down the path of accepting ‘less than perfect’ kids or they end up in ’special’ schools. Again, there doesn’t seem to be a good middle ground there either. This is particularly complicated for children with autism who NEED ABA therapy but in a mainstream classroom with NT peers. For my son, his success depends on this mix.
I didn’t have time to fight with the Seattle Public School district and their ‘rules’ and ‘guidelines’. They move so slowly that my son would be out of school by the time they get things even close to right, even with a lot of advocacy. Remember my earlier blog post that they are 20 years behind! My son doesn’t have time for the beauracrats to finally do what’s right for the child vs. what’s right for the district. He doesn’t have a single month to waste - no child with autism has time to waste.
So I stuck with the private school route. I was lucky to find a school that was willing to work with us. I even started this Foundation to try to encourage other schools to do the same thing and to open up options for kids with autism. But will even my school take more of these kids?
I’ve run into an interesting situation and it brought up something that I felt strongly about. My son’s class at his school (about 60 kids total in 3 classrooms) happens to have a lot of kids with behavioral or learning issues. My son is the only one with a diagnosis of any kind - that we know of. We provide full time assistance for him in the classroom. There are many other children in his grade that are struggling and the school has provided part time assistance in another one of the classrooms. Now they are unsure if they can open up their doors to any more kids on the spectrum because they already have so many kids with issues. My thought is that they should be happy to have these kids that have had evaluations, have a diagnosis, have therapeutic and educational support, and have all the components in place to help that child succeed. They should be concerned about the children who have not been evaluated, have behavioral issues that have not been clinically addressed, and do not have the necessary support in the classroom to help them succeed. These are the children they should be drawing out and working with. They shouldn’t be as concerned with the kids on the spectrum, especially since the parents are providing the additional services out of pocket.
Since our children spend so much of their developing years in school, my hope is that schools will become much better at being willing to refer children out for evaluations. If the school believes that a child is “not typical” in some way, it is their responsibility to let the parents know and I think the school should demand these evaluations be done in order for the child to continue with the school. It is the only way they can truly help the child. Early intervention is so important with so many developmental delays, etc. Many of these children are being diagnosed with things when they are much older.
Well, these are my thoughts for now. Every day I feel like I’m putting together more pieces of the puzzle and some day we’ll hopefully have good and accessible solutions for kids all across the spectrum.
Cords and electronics
February 5, 2009
I am constantly trying to figure out my son - wondering if there is some sort of rhyme or reason to his behaviors and actions - or is it “just how he is”.
Most recently, he has been overly obsessed with cords and electronics. He will walk into a room and the very first thing he notices is all the electrical wiring. He could care less if there are people in the room. Now, he’s always been obsessed with electronics, so this is nothing new. It’s more the intensity to his obsessions that seem to change. We are going through a change in au pairs right now - which is a big change - so I wonder if he has become overly obsessed because of this change.
What amazes me is how quickly he figures out how everything is wired. It just clicks with him in a way that I’ll never truly understand. He walked into my daughters classroom in the morning (we always drop her off in her classroom first before going to my son’s classroom) and every classroom at their school has a smart board in the room connected to a laptop and projector. From the doorway he noticed that the speakers were not hooked into the laptop correctly. He ran over to it, followed the cords from the speakers to the laptop, yelled across the room for the teacher (who was his beloved teacher last year in kindergarten), and told her that her speakers were not plugged in correctly. She came over to check out what he was talking about. She tested it both ways and, sure enough, he was right. Suddenly she has sound! He was so impressed with himself - he gets this cute little shy smile on his face - like he’s trying to hide the smile but he can’t. You should see what he’s done to our house - in every room the electronics have been re-arranged. One day after school he ran upstairs and yelled “Momma, are you using the Internet right now?”. I said “no”. He went darting off down the stairs. I thought about it for a moment and thought, “no, he’s probably just wondering why the Netflix is downloading slowly”. Well, I was wrong. He re-wired our Internet.
We decided to transform his room into his little electronics laboratory. He chose a bunch of toys that he was ready to part with, took them to Goodwill, and picked out in exchange some speakers to go with my old CD player and amplifier. He was given an “old technology” (as he calls it) TV and found my husbands old Nintendo Atari game system. They apparently hooked up nicely together because they were both “old technology” and had the appropriate cabling or something. He also has a number of other things and big box full of cords.
Well, if the brain transplant neurosurgeon, aeronautical electrical engineer, or outerspace housing architect careers don’t work out for him - by the way, these are his ideas, not mine! - then he can always be some kind of electronics expert. I’m sure he could be employable now to those of us who can’t even work a remote control let alone figure out how to connect things!
So telling, and so inspiring
February 4, 2009
Winning bid lands $20,000 for family
Couplegets to keep goods they sold on eBay to help pay children’s medical bills
BrittinyPeters reflects on the recent events her family has been through after she andher husband, Gregg, decided to auction all their belongings on eBay to helpraise money to take care of their three children, two whom have special needs.
SCOTT ROGERS (The Times)
By MelissaWeinman
mweinman@gainesvilletimes.com
POSTED Jan. 31, 2009 12:25 a.m.
Gregg and Brittiny Peters had no idea that what started out as a crazy way to pay their children’s medical bills 10 days ago would soon make them international celebrities.
At 1a.m. Friday, the Gainesville family sold everything they own on eBay to Douglas and Donya Blair of Fort Worth, Texas, for $20,000.
It wasn’t long before the Washington Post, The New York Times, CNN and even the”Tyra Banks Show” were calling to get an interview with a family willing to part with all of its material possessions to take care of each other.
“That’s one of the things that has been very eye-opening for us, is what a materialistic world this is that a family selling their things — especially with very good reason, to help their sick kids — would make nationalnews,” Brittiny Peters said.
Afterlearning she won the bidding, Donya Blair called Brittiny Peters at 10:30 a.m.Friday with a surprise.
“Weare so happy, honored, to be able to place the bid and win this auction, and weare even more honored to tell you that our sole purpose in purchasing theseitems was to able to give them back to you as a gift,” Peters said Blairtold her.
Peterswas overwhelmed by their kindness.
“Istill couldn’t find the words to say to her,” she said. “I told her Iwant to say ‘thank you,’ there’s a lot more I want to say, but I don’t have thewords.”
TheBlairs’ eagerness to help her family inspired Brittiny Peters to do the samefor others.
“We’regoing to be spending the next few days really working on a plan, my husband andI, on how we can … take the kindness that’s been shown to us … andreciprocate and pass on that kindness, and use some of the smaller items andmonetary donations we made and pass this on to other people and help otherpeople,” she said.
Asidefrom the media attention, Brittiny Peters said she has received donations ande-mails from people in all 50 states and 11 countries who were inspired by their story.
“We’ve had over 2,000 donations,” she said. “Most of them have been $1, $2.People say, ‘this is all I have, but you’ve inspired me and I want to give it to you.’ We’ve gotten e-mails from people who don’t have anything to give whowant to say … ‘y’all have inspired us to make some changes.’”
The Peters have three children, two with special needs. Daughter Ayla, 7, hasStill’s disease, a form of rheumatoid arthritis; 2-year-old Noah is autistic.
Brittiny Peters, a stay-at-home mom, said she and Gregg realized they needed to dosomething drastic or they would not have enough money to give their childrenthe best medical care.
She said one of the most immediate needs is therapy for Noah, who goes to differenttypes of therapy several times a week.
“We weren’t going to live without all our stuff forever,” she said. “Wewere just sacrificing those things for the time being because my son will be three in April and he has autism. Anyone who knows about autism knows thatearly intervention is the key to him reaching his maximum potential as an adult. … We’re willing to sacrifice those things for the time being so thathe could get what he needs now.”
Brittiny Peters said she plans to donate a portion of their earnings to Autism Speaksand the Still’s Disease Foundation to fund research for both incurable diseases.
Many people have questioned how they could consider giving away money that they needso badly, but Peters said that she thinks it wouldn’t be right to keep all of it.
“The outpouring of kindness has been truly amazing,” Brittiny Peters said.”We’d be pretty selfish people if we held on to that.”
“Stimulus” bill - but could it help fund IDEA
February 3, 2009
I received this information from a fellow member of an autism group I belong to and decided to pass it along. Often those of us in the trenches dealing with our own kids do not have time to keep up to date with what’s happening with legislation or policy.
Please consider also contacting our U.S. Senators Cantwell and Murray about the funding for special education in the American Recovery and Reinvestment Act (the “stimulus” bill).
According to the Council for Exceptional Children, the bill passed by the House of Representatives DOUBLES funding for IDEA over the next two years. CEC has a link to a chart showing how much is estimated to go to every school district in the U.S. The totals for my area: $3 million (over 2 years) for North Thurston SD; $2 million for Olympia; $1.4 million for Tumwater. It still isn’t full funding, but it’s worth fighting for.
In the Senate, the allocation is facing opposition, and the amount could be reduced. See www.cec.sped.org Here’s an excerpt:
As U.S. senators attempt to strike a compromise on the economic stimulus bill, funding for IDEA programs serving children and youth with disabilities continues to face mounting opposition. CEC urges its members to contact Congress today and share how critical IDEA funding is for maintaining special education programs and personnel.
What do you think about the first-born study?
February 2, 2009
I think it is interesting. I haven’t heard much debate about it out there on the internet so I’m curious what people think.
Study: Firstborn children at greater risk of autism
February 1, 2009
CEC SmartBrief | 01/06/2009
Although older parents are more likely to have a child with autism, children with older siblings are less likely to be diagnosed with the disorder, according to a study from University of Wisconsin-Madison researchers involving more than 1,200 autism cases. Lead researcher Maureen Durkin, an epidemiologist, says a woman’s first child can be more vulnerable to toxins built up in the mother’s body or less likely to develop normal childhood infections that trigger important autoimmune responses. Milwaukee Journal Sentinel (01/03)
