Educating Children with Autism- NC School Sets Example

There's this great feature from WFMY News 2 about the progress of children with autism in a regular school. The story features Sam Johnson and Brightwood Elementary of North Carolina. It's a success story each parent with a child that has autism aspires to happen where they are. One is more support in regular schools for programs especially designed for children with autism. The other is an advocacy of parents that are being acted on by school boards.

Setting aside teaching resource for children with autism can be expensive. Teachers have to be equipped with proper training and teacher-student ratio has to be low enough so they could really focus on each child. They also need separate classrooms so these children can work with their teachers in environment that's free of distractions.

For more information on Sam's story and his school, please go to
http://www.digtriad.com/news/education/article.aspx?storyid=140683&catid
=164 and watch the video.

Playgroups Help Up Social Skills -Aussie Study

Playgroup Australia is about to publish research study that sought to prove that playgroups improve socialization skills of children with autism. The report is based on interviews of over 40 families that participated in Playgroup's PlayConnect program. Over 4-of-5 have confirmed the program has had an impact on their children's development. PlayConnect's program brings together children with autism so they could play and socialize in a safe environment. Parents also benefit as they get a chance to interact with other parents in a support group environment.

Karen Merange, Playgroup Australia's Executive Officer, looks forward to the program's continued expansion. “We are delighted that the research will confirm great outcomes from these groups for the families involved. We bring parents together for networking and information-sharing, and show them how to use play-based learning specific to a child with ASD. It is clearly making a big difference to people’s lives," Merange said. Playgroup aims to have 150 of these groups all over Australia by 2011.

The original announcement can be found here: http://www.playgroupaustralia.com.au/index.cfm?objectid=94378DED-E7F2-2F96-30864044DA4E9776

Online Autism Conference

My wife emailed me about this online virtual conference and I'd like to share it with you.  MomsFightingAutism.com organized this conference for April 10-11, dubbed Things to Know About Autism. There will be 16 speakers who will give a variety of talks on a range of topics including new therapies, education and autism awareness.

Talking for the keynote on April 10 Temple Grandin. Dr. Grandin is a noted autistic who is an accomplished author and a valued resource speaker of the Autism community. Her works include books like The Way I See It and Thinking In Pictures: My Life With Autism. She will be talking on Teaching Through Specific Examples and The Importance of Sensory Processing Disorder. Dr. Grandin will also be sharing about her successes in life despite her autism. Dr. Grandin's life had been featured recently in an HBO film, with Clare Danes playing her.

The keynote for April 11 will be by Jeremy Sicile-Kira. He will be presenting Learning With Autism: A Personal Viewpoint, mostly about his personal experiences and therapies that had helped him. Jeremy was featured in the MTV show True Life's "I have Autism" feature. Jeremy's mother, Chantal Sicile-Kira, is also an accomplished author who's penned several books on Autism and her experiences as a parent.

To participate in the virtual conference, register at
http://www.momsfightingautism.com/virtual-autism-conference/register/. The same page also hosts a short video on what participants can expect from the speakers in the conference.

In addition, you can also download 2 free webinar episodes, Autism 101 and Effective IEP Strategies, if you sign up for the Moms Fighting Autism newsletter.

The Beginnings of Summer

Tomorrow is the last day of this school year for Matthew. They're having a party of sorts which will double as a recognition day. Since they're a small school, organizing small events like that is much more appropriate than renting a large space and doing formal recognition programs.

In a bit of good news, he will be joining a class of regular kids this summer. His teachers have seen enough improvement that they recommended it. His learning has picked up and according to his teachers bringing him back to an environment with regular kids might help speed that up more. They also want to get him to become more social by interacting with regular kids.

Although Matthew is 7, he will be joining a pre-school class. The same teachers will be teaching though. When he was in a Prep class at his previous school, he had one kid he liked to hang out with, but was never with friends that he talked or played with. In the past year that has changed somewhat. He now plays with other kids, though not at the social level of play that kids his age are at. He now tries to start conversations, although to someone who doesn't know him all too well, it may be confusing. He still refers to himself in the third person at times, or asks a question when what he wants is for you to ask him that question. He repeats often-used phrases but never really says things in his own words. These are quirks in conversation that  a person not living with him or teaching him would find odd or difficult to deal with.

We are hopeful though that getting him in a class of regular kids will help him improve his social skills. At this age, that is one thing that we need to concentrate on. We are past the critical point, 7-years old. From here on, we are working to teach him skills so he can start doing things on his own.

Matthew's Computer

Last Sunday, the wife and I went out to buy a computer table. I've been planning to revive an old Dell I had laying around and repurposing it to be an all-around computer for the kids. My son has simple needs. He has great fun playing the games included in Child's Play and Gcompris. Well the wife and I ended up buying a cheap computer table from Saver's Mall in Balibago.

After I got home, I immediately started working on the machine. I had a little trouble getting it to work but I eventually managed to get it booting again. After I got it working I tried a live linux distribution. These have an advantage over installed versions, since an operating system running from a CD can't be modified like one that is installed. I tried Fedora 12 Games, but it was just too slow. I tried another linux distribution, called Linux Mint 8. It booted a lot more faster than Fedora, but it still took 8-10 minutes. I could just imagine my son jumping in anticipation only to get tired before the machine had fully booted. He's a little hyper over waiting time and jumps excitedly at times. I tried another one called  DreamLinux. I had been able to run 3.1 before on this same machine and it worked okay. DreamLinux didn't have any games on the Live version so I had to install it. I used the latest version,  DreamLinux 3.5. The computer was having problems booting into it so I gave it a rest.

The next few days I spent trying all sorts of tinkering on the computer to make it work. I decided to try an old Edubuntu CD from 2006 that I had lying around. for those of you who are unfamiliar with it, Edubuntu is a version of Ubuntu that is packaged with educational software with games and applications for both educators and students. Good thing is it's packaged with games even for pre-schoolers. I have to download them though because these were optional applications.

I finally had it booting but I was disappointed becaused it had too few games that would suit Matthew. The problem is the servers for this older version are already outdated so I wouldn't be able to download more games even if I wanted to. I'm now downloading the latest DVD version of Edubuntu, plan to install it, test it and download more games if there aren't that many on there by default. Wish me luck :-)

Balloon Fun For Matthew

Last Valentine's Day, the whole family flocked to the last Day of the 15th Hot Air Balloon Festival in Clark. We woke up real early and I was just relieved that the kids weren't as grumpy as I had anticipated. Matthew had a lot of fun watching the balloons inflate and then fly. Even more so when the balloons took on different shapes and sizes.

I was half-expecting he'd be afraid of the balloons. I was delighted that he liked them even if the things looked so gigantic up close. He told me with all enthusiasm that this balloon was 'Ketchup' when I pointed it out:

The Pilseners won't be too happy about that I bet. It was still great fun for him, even if we only stayed for 2 hours.

The Out-of-Sync Child Has Fun

When it came to activities for our child, we used to turn to therapists and doctors for everything. Most of the activities that we had for Matthew were usually limited to what he also performed in therapy sessions and speech therapy. We've reached a point however that when activities are repeated too often, Matthew becomes less enthusiastic and less compliant. Tantrums aren't too far away if you force him to do activities that he feels he has already done well in the past.

Good thing my wife was able to spot a copy of The Out-of-Sync Child Has Fun, Revised Edition: Activities for Kids with Sensory Processing Disorder at National Bookstore. And it was on sale at the time! Every September, National Bookstore has a half price sale for a lot of their stock. This is a yearly book event that I actually look forward to.

Anyway, back to the book. The Out-of-Sync Child Has Fun is just full of activites that you can use to help you child get better with certain skills. Like one activity that we have Matthew do to make him cooperate with the next activities. We have him blow balls of cotton across the floor using a cut piece of straw. The blowing helps Matthew develop the muscles used for speech. He also has to move while he is on his hands and knees for this activity and that improves his tactile sense. Another activity we got from the books was marble trails. It's painting with marbles! Using marbles dipped in paint, Matthew can create a 'painting' by rolling around the marble in a pan lined with paper. He can use different colors, using a marble from each of the paints.

The Out-of-Sync Child Has Fun has already helped us, and we haven't even gone through a fourth of the games in it. It will surely be useful still in the future. If you want to buy a copy, The Out-of-Sync Child Has Fun is available in Amazon for just US$10. I am sure it will be a great resource for any parent, therapist and care provider of children with sensory disorders.

Matt Turns 7

Today we had a party for Matt. As with any sort of event that we have to accommodate Matt in, we had to make sure the party would be enjoyable for his special needs. We also wanted to make it meaningful. The party had to be short, no more that an hour and a half at most. We also had to have some sort of way to divert his attention away from the music being played on loudspeakers. He actually loves music, but wants to always be in control of what's playing. We've often had to watch him and warn him beforehand at parties not to "turn off the CD". He often gets away with it anyway and that manages to upset some party hosts. And then we wanted the celebration to be meaningful. So key things were that it had to be short, meaningful and the music had to be something he wouldn't want to "turn off".

As a way of accomplishing what we set out to do, we invited kids from the Children's Joy Foundation. We set it up so that guests were informed ahead of time that instead of gifts for our son, they should bring along any donations they would have. We wanted to give these kids a good time and at the same time we promoted their particular organization.

They did share a wonderful gift for Matt. They played songs for Matt, live! Matt had no way to "turn off" the music. He sat attentively while watching these kids perform. In a very rare moment, he behaved so calmly.

Overall, the party was a success. We were able to gather about 10 small bags of clothes and school supplies. A few friends also shared cash for the kids. There were also a few guests who asked if they could have the kids perform at their events as well. So we were able to make it enjoyable for Matt and at the same time meaningful. It was moving to see smiles on these kids' faces. It felt like we were making a big difference, even if just for a day.

Key Dates in Autism History

If you'd like to see a timeline about autism, the Washington Post published an article about the Key Dates in Autism History. I also included this in my Del.icio.us bookmarks. I hope you find this useful.

Pain all over

Today, Matthew was not himself. He was crying in pain. The joyful good mornings are greeted with a tears and screams. He is suffering from a bad case of dental carries. Tsk..tsk..tsk.. a nightmare for every parent and kid to endure.

Like most babies, Matthew was bottlefed. He would suck until he falls asleep. All the acid the milk produced had destroyed the enamel. He never liked water so he drank lots and lots of apple juice. It was a bad habit but we had to suck it since not drinking any fluids other than water was bad for him. We chose the lesser evil and bought hundred bottles of Mott's Apple juice. Secondly, he was so mad at his toothbrush. All the prodding Elmo did and the rest of the Sesame Street Gang was futile. We would run around the kitchen, sing "The Wheel on the bus goes round and round, round and round, round and round. " I would go down with him on the floor just to brush his teeth, which I found ineffective. It left him furstrated and tortured.

We thought that by the time he reached 6 yrs of age, all his baby teeth will fall off and permanent tooth will come out and that will be our time of redemption for inflicting harm to his health.

By the time he turned five, he knew how to use his toothbrush. Thanks to creative people of Colgate who created a brush with a handle shaped like a neat car. But it was too late. He only knew how to brush his front teeth.

We went to the dentist at 10 am . The kind doctor explained the situation that a simple extraction may be done but in children, the procedure may be difficult. Kids are scared and afraid to let anyone see their mouth. At Matthew's age, it is mine vs. yours mentality. The doctor also said that as much as possible, extraction is not recommended but a pulpotomy, like a root canal to numb the nerve endings which are responsible for the pain sensation. He knew much about it since his child, a toddler had undergone the same procedure three years ago. He was ashamed that a child, with a dentist father was not able to help in preventing tooth decay. The culprit was also bottlefeeding.

While the doctor was explaining, Matthew was tinkering the dentist's chair, faucet, mirror and other paraphernalia. He was so relaxed that he was able to greet the dentist and sit comfortably on the dentist's chair.

It was recommended that we go to Philippine Children's Medical Center in Quezon City and look for Dra. Salcedo. She is known to do such procedures for children with a help of an anestheologist. Her clinic being inside the hospital gives another guarantee that the procedure is easy and is regulary done and most importantly, is safe. It would only take an hour for it to be done. Only localized anesthesia is given to keep him quiet and steady.

Now, the challenge for us is to have him immediately brought to Manila for consultation and prepare ourselves for the operation and expenses. I pray I can pull all my resources today and tomorrow for a worry free trip on Friday.

Favorite Entry

As I was looking at my inbox, I found this email from a dear friend commenting on the entry made by my hubby last 2007 holidays. All the contents and comments I received from this entry never fails to bring tears to my eyes. Tears of gladness that some folks understand what families like mine undergo. Yes, the most simple endeavor an ordinary child can do may easily be forgotten, but this event has brought tremendous joy to my soul and gratefulness to the Lord. It brought faith and continuous hope inspite of all the tensions it brings to my marriage and to my wit. It brought laughter inspite of all the furstrations and anger everytime I try new methods on how to get through to Matt. It washed away my fears of giving up easily and made me realize that this is the gift we receive.

Read on and I hope you learn to appreciate all the simple everyday and ordinary things in life that happens may suddenly be big miracles (or gifts) for some.
-------------------------------------------------

Earlier this morning, we brought our son Matt to his school's Christmas presentation. I was a bit worried as I stood backstage with him. He was fidgeting, as the noise and chaos was getting to him. It was noisy and people in colorful costumes were running around. It was sensory overload for him. I worried normal people wouldn't understand if he "misbehaved". I held his small hand in mine as long as I could. As one of the teachers led the kids to the stage area, I held my breathe.I saw the teacher lead Matt to the open area beneath the front of the stage. There were too many kids to fit into the small elevated stage. As the teacher (my son's favorite, actually) climbed up the stage, I saw my son running in a panic and then bolting to climb to the stage. I almost ran to him. I told myself, if no one steps in to guide him, I'll do it myself. Good thing another teacher saw him and guided him to an open spot on the stage. She was patient enough to talk to him to get him to stay on the same spot. The music came on and they began to sing. Matthew sang along.After the performance, the teachers marched the children down the stage and Matt was one of the first. I gladly took his hand as one of the teacher guide him over to where I was. I breathed a sigh of relief, the ordeal was over. My son had coped and made his mother proud.

The thing that gets me is for parents of children with autism, simple milestones like these are special. It doesn't take much to make us happy or proud of our children. Small steps make the biggest impressions on us. Things that normal parents with normal kids most likely just ignore, we treasure. It's both a blessing and a cross to bear. These contradictions will never see light in the perspective of regular people.
-------------------
Matthew got bored waiting for the rest of his classmates get their formation right. From down the stage, he went up to get a nice spot. He was still walking when the music began. He stopped immediately and just sang loudly the Rudolph the Red Nose Reindeer with all confidence and in the right tune and lyrics.

I was definitely the proudest and happiest Mommy that day.

--------------------------
Wow! ala kung asabi.

I am also proud of you, both. I know how it feels for you to have Matt and how he makes you proud especially for times when you are counting on him. Several children and parents alike have that same blessing, as I have met and talked, and live with them. I know that both of you are very kind and well in guiding Matt to the normal path, but what is normal is what you are right now. A proud mother, a very strong father, a deserving child. One happy family....

Happy New Year!

piNong

Autism Is Also A Class Issue

As I read an article published in PSL Website, I found myself nodding as I went. I can definitely understand how frustrating the costs can be. For our situations, therapy costs account for roughly 15% of my salary. Though I may be seen as fortunate by some, It still takes a toll on the budget.

Parents in the US have it better in terms of research and advances. They also bear the brunt of higher therapy costs. In the Philippines, or at least where I live, the costs are a whole lot lower. I expect to have spent around 37,000 pesos this year for therapy costs alone. We are fortunate that we started therapy at the time that we did. Booking therapists is getting to be a frustrating affair for parents who been asking schedules lately. The waiting lists seemed to have increase exponentially during the last few months. We already have our slot and we are sticking to it. We can't change schedules now unless the therapists have free slots. The demand in our area is that big. As the months roll by, more children are seeking treatment.

I can just imagine how hard it would be for parents who earn less than I do. It would be difficult enough for them to get a slot for therapy. They also have to contend with the costs.

Web Browser for Children With Autism

One of the things that has always amazed me in the open source development circles is the rise of grassroots developed applications. Users who are capable of programming often develop applications because they need them to do specific tasks and behave the way they want them to. They then share them to others so these apps can be debugged or improved.

Another source of great software applications would be individuals who want to create something for their loved ones or for causes. One such piece of software would be the Zac Browser. It was created by a grandfather who wanted to help a grandchild with autism browse the web safely and independently. The Zac Browser helps autistic kids focus their attention by using a simplified interface. It protects them as well by limiting their exposure to inappropriate content, filtering out any violent of otherwise disturbing content. The sites have been pre-selected by the developer and is updated regularly. The best part of it is that it is free to anyone who would want to try it.

I discovered this little gem while browsing for news about autism. AP featured it in a news article. I posted a video featuring the Zac Browser below:





The Zac Browser can be downloaded as an installer package or a "just run" no-install package. It works with Windows Vista, Windows XP, Windows 2000, Windows ME and Windows 98.

Pre-Term, Low Birth Weight Girls Face Higher Autism Risk

Found news links that all point to research that indicates the autism risk in pre-term and low birth weight baby girls is greater:

• Autism Risk Higher For Preterm And Low Birthweight Girls
• Low Birthweight Linked to Autism
• Study Links Low Birth Weight To Autism on Eve Of March On Washington
• Low Birth Weight, Premature Delivery May Increase Autism Risk in Girls

Therapeutic Vest Promises Relief

Children and adults may soon find anxiety relief in the form of "portable hugs" if inventor Brian Mullen finds success in selling his Therapeutic Vest. The vest, which can also be used by adults suffering from mental illness, delivers a “portable hug” called deep pressure touch stimulation (DPTS). Deep pressure stimulation was proven in several trials to increase attention to tasks and reduce anxiety and harmful behaviors by providing different sensory stimuli. Mullen recently won grant money worth $50,000 when he won in the UMass Amherst Technology Innovation Challenge.

For more details, you can read the Science Daily news article here: Therapeutic Vest Will Help Children With Autism, ADHD, Anxiety.

Autism Test Can Screen 6-month Old Babies

North American researchers reveal that their studies have proven that autism could be detected as in children as you as 6 months. Detection this early on can equip parents with the knowledge they need to deal with autism and it's effects. Early intervention also helps the child adjust better as they grow up.

The telegraph reports on the results here: Tests can spot autism early, claim scientists.

Research Links Autism Risk to Environmental Mercury

Science Daily reports that a study released by the University of Texas - Health Science Center at San Antonio links the occurrence of autism cases to industrial mercury released into nearby environments.

The recently published study compared data from a Texas school district and industrial mercury-release data. The reports says it showed a statistically significant link between the amount of industrial release of mercury and increased autism rates in the immediate area. The study "also shows—for the first time in scientific literature—a statistically significant association between autism risk and distance from the mercury source".

You can read the whole article here: Autism Risk Linked To Distance From Power Plants, Other Mercury-releasing Sources.

You can view the news release in it's original form from here: Study links autism risk to distance from power plants, other mercury-releasing sources.

Obama Supports Autism Cause

I was browsing my news alerts when I happened upon this blog as a result of my clicking through several sites. A fortunate succession of events :-)

I discovered that Barack Obama actually has a position on how he plans to help Americans with autism. You can find his position paper here: http://www.barackobama.com/pdf/AutismSpectrumDisorders.pdf (found via the blog Hyperlexicon).

Yet another reason I like Obama :-)

Autism Books

There are a lot of books out there about autism, providing information about the disorder. It can can be confusing at times when different books present different conclusions on what's best for your child. I can only share what limited insight I have. I've read a few books and those that I found useful I share in this post. One of the first ones I read was Understanding Autism Spectrum Disorders: Frequently Asked Questions by Diane Yapko. We got this book as a present. This book presents Autism Spectrum Disorders using plain language. It was easy to read and strives hard to make the subjects tackled less complicated and easier to understand.

Another book that was greatly insightful was A Parent's Guide to Special Education: Insider Advice on How to Navigate the System and Help Your Child Succeed by Linda Wilmshurst and Alan Brue. This one centered on education and how to take advantage of available resources to help your child cope. This book had me wishing there were similar initiatives in the Philippines to address special education. In an email to an officemate, I said mentioned that in our city there were a few public schools that had special education classes. Sadly, they are not well-funded and as a result are over-crowded. The teachers assigned to these classes are doing their best, but there is only so much one teacher can do when you have to handle 20 or so kids at any given time.

The third book that was sent to us by my sister-in-law. Healthcare for Children on the Autism Spectrum: A Guide to Medical, Nutritional, and Behavioral Issues (Topics in Autism) by Fred Volkmar and Lisa Wiesner tackles health issues. There's a lot of medical information in here about autism, from how to detect common symptoms to finding the right kind of medical treatment. I did find myself re-reading the articles in this book, as it was not as easily readable as Understanding Autism Spectrum Disorders: Frequently Asked Questions but I do refer to this when my child gets sick and it is just as valuable a resource as What to Expect the Toddler Years was to us.

One book that I am eager to buy and read is Ten Things Every Child with Autism Wishes You Knew. I plan on buying this book as soon as I get enough money saved up. This isn't available locally, so I have to get this online from Amazon or Barnes & Noble. So I need to save up, because shipping charges to this country are atrocious.



Technorati Tags: Autism, Autism Books, Books

Article Hits It Close to Home

Parents are autism's invisible victims. This article just made me realize what I feel is normal. It's comforting to know that I am not alone.