Thursday, July 15, 2010

Time out!

Abandoned blogs are one of my biggest internet pet-peeves, and I’m about to become one!  <sniff>

I haven’t written much lately, due to a combination of my time being spread across too many projects, and because Calvin’s getting older (turns 11 next month) and our life has stabilized somewhat (if you can call it that) - I don’t have as much day-to-day material coming out of his program/education/life experiences.

New Readers – Even though I’m not adding new content right now, I hope you can still find some useful information ‘round these parts.  Here are some posts I’d recommend you start with…

Keeping Track of Mountains of Paperwork.  And the follow-up post, Keeping Track of MORE Mountains of Paperwork.

A success story – A ‘Bolter’s’ Parent’s dream come true.

Calvin Writes – a first-hand account of living with autism.

Siblings and Multiple Activities – it can be a struggle to keep everyone in the family involved.

Get Over It.  My favorite motivational story ever.

I appreciate everybody I’ve met through this site; I’ve learned a great deal, and I hope I’ve been able to help a couple-few families out there as well…

Friday, June 4, 2010

New Study Working on Urine Test to Diagnose Autism

Researches from the Imperial College London and the University of South Australia have zeroed in on the GI and digestive challenges many people with autism face as a way to identify chemical markers which distinguish individuals with autism.

The researches believe their findings could make diagnosing autism in children as simple as a urine test…

urine sample

Wow!  Admittedly they have a few years to go, but could you imagine if they’re right?

* Earlier diagnoses could lead to more help for younger kids, when the help is most effective.

* More accurate diagnoses which could be performed in a pediatrician’s office.  No more hearing the ped say “he looks ok – all kids develop differently” while the child wastes precious time.

* Less expensive diagnoses – a simple test at the ped’s office sure beats being referred out to specialist after specialist before having a psychiatrist make the ultimate call.

* and eventually, Better cures – identifying a specific chemical change could allow researchers to develop better enzymes to aid in digestion of “regular” food.  Or, as is always my dream, maybe the chemical differences permeate throughout the body, which could allow the development of a medical cure!?

I know this doesn’t have an effect on my family’s life, at least today, but I love seeing research moving forward.  Autism is a disorder which needs to be done away with..

I still get choked up when I think about what a great kid C is – how smart & friendly he is, and how hard he has to work just to maintain focus and accomplish simple tasks.  I also get choked up when I think about other families out there going through everything we have – emotionally, physically, financially..  Even worse, knowing there are young couples out there - in love, getting married, and dreaming about their white-picket-fence future, who are going to get blindsided by autism.

Researchers out there – Keep pushing forward.  Find causes.  Find cures.  Find answers. 

Wednesday, April 14, 2010

Pocket SLP – another useful iPhone app

Last year I wrote about Proloquo2Go, a pint-sized & modestly-priced iPhone app which could replace a large, bulky, expensive “talking” device.

Today I learned about Pocket SLP, a $30 app which gives you a deck of SLP flashcards, along with diagrams, audio feedback, statistical scoring, and lots of options – that you can bring with you anywhere!

pocket slp

(click the picture to see a demo on their website.)

Thanks to Jennifer at Jabbermouths (a terrific SLP) for sharing with us!

Full Disclosure – I am NOT an Apple guy.  In fact, I’m almost an anti-Apple guy!  Although I can’t help but to be impressed with Calvin’s iTouch & the apps he has available to him.  We’ll be buying Pocket SLP this week.  I did not (and will not) receive any compensation or free product for writing this review.

Tuesday, January 12, 2010

Keeping Track of MORE Mountains of Paperwork

I wrote about keeping track of mountains of paperwork in May, 2008.  (That’s still a very good post, and I highly recommend reading it & taking action.)  Here’s the short version:

j0422184When you start your journey down the road of living with autism, you have no idea how many people, places, prescriptions/recommendations, and ideas you’re going to cover in the coming years.  By the time you realize you can’t keep track of everything, it will be VERY DIFFICULT to go back in time & recreate your records.  Better to start keeping track right away, using a digital format that’s easily search-able.

Today I’d even recommend using a digital journal to keep track of your medical history for everyone in the family, autism or not.

What I’ve done.

I’ve been keeping an online journal since 5/08 – our past year-and-a-half is time stamped, labeled, tagged, and easily searchable, all in a password-protected non-indexed blog.  This makes it easier to flip through & find things, but I think I can do better.  I have 3 forces pushing me to make a change this year:

1. My online journal gives more freedom & flexibility to words – describing the appointment, what was discussed, etc.  But I’m finding this is the minority of the information I need to keep – dates, who, and what are the primary records.

2. Once I have the framework for keeping track of these things, I should be keeping track for everybody; why not have a “family” medical journal rather than just a “Calvin” journal?

3. We scheduled an appointment for Calvin to see a specialist, and the pre-application paperwork asked for information in such detail we weren’t able to complete it accurately.  I need to go back through the old files and make notes; might as well use this opportunity to bring them online.

My next format.

Good ole Microsoft Excel.  I’ve built a spreadsheet with the following column headers:

* Date – inupt the date

* Family Member – who had the appointment?

* Appointment With – who did we meet?

* Reason for Appt – why did we meet?

* Tags – key words, easily searchable, to describe this entry.  using the same key words when possible makes searching easier.

* Notes – memo field to discuss details, Rx, therapy changes, iep notes, etc.

My goal for 2010 will be to pull all the old data into this spreadsheet.  Once it’s in there, I’ll be able to filter by family member or doctor, sort by date, search for anything, whatever I need.  Wish me luck!

ps – I can’t stress enough how important it is to BACKUP YOUR DATA!  You don’t want to put a lot of effort into this, and then lose it all one day when your computer stops working…

Monday, November 23, 2009

the other side of the bridge

Last month I wrote Bridge to a 2-Wheeler, outlining our gameplan to get C off his training wheels & onto a 2-wheeler.

He has practiced balance-type exercises so much over the last year or two that I thought it would be possible.  He’s sought out 2-wheel and 4-wheel scooters, scooter-boards, curb-walking.. anything and everything that tests his balance.  I just thought it was going to take us all winter to get it figured out.  Boy, was I wrong!

One month later…


(if the embedded video doesn't play, you can try it directly from youtube.)


One of the things about ASD is you learn to celebrate smaller achievements on the way to bigger things.  And sometimes things that are so easy for “typical” kids can take years of practice for C.  But when he climbs a mountain like this, well…  You won’t find a prouder Dad on the planet!

Love you, C.  Keep it up!

Thursday, October 29, 2009

bridge to a 2-wheeler

Calvin has always loved riding trikes and bikes, but his balance isn't the best. He got a big-boy bike for his birthday 3 years ago, with heavy-duty training wheels attached. I've wondered if we'll ever be able to remove his training wheels, but I've also mentally prepared myself that he'll end up getting a 3-wheel bike at some point in the future as he gets bigger.

This year he's been really interested in his scooters - both a 2-wheel Razor and a 4-wheel 'skateboard with a post' type. He's gotten pretty good at them, and last week he even took my regular skateboard for a few pushes without falling down. I decided to give him the benefit of the doubt, and we're going to try like heck this winter to learn to ride a 2-wheeler!

Schwinn Hitchhiker Trailer

Here's the plan:

We bought this bike-trailer and took it for a spin last weekend. At the beginning of the ride, Calvin leaned so far to the side he almost took us both down! By the end of the ride, 45 minutes later, he was staying upright and we were moving along at a pretty good clip.

I think we can give him some balance/practice on this trailer, then work on using his current bike w/o training wheels. And we've got 6 months of great weather coming up to do it.

Can this trailer be Calvin's bridge to a 2-wheeler? (that and a lot of practice and patience!) I'll post an update in the spring...

Thursday, October 22, 2009

Test Post

sending a post from LiveWriter.  works great for ThePhoenixAgents on WordPress, but I’ve never used it with blogger before.  I wonder what it does with pictures…?

Sedona

ok, let’s give it a spin..

Friday, October 9, 2009

High School Basketball success story

This is one of my favorite stories ever. The video is a couple of years old, but a friend just sent it to me again, so I thought I'd share. If this doesn't bring a smile to your day, well... Just watch the video.

Friday, October 2, 2009

Blockbuster Study of Primates Shows Harm From Thimerosal

Mark Blaxill at AgeofAutism.com wrote an article this week that caught my eye. In fact, it did more than just catch my eye - it blew me away (even though the results shouldn't be too surprising..) Here's the short version...

Research studied 20 young male macaques' development after being vaccinated at birth with a dose of Merck’s Recombivax® hepatitis B vaccine to which a weight-adjusted amount of the ethyl mercury-containing vaccine preservative thimerosal had been added (each dose included 2 micrograms of ethyl mercury as opposed to the human infant dose of 12.5 micrograms). 13 of the primates received the vaccination; 7 received either a placebo or no shot at all.

Over a two week period following birth, the researchers examined the infant macaques daily for their ability to perform nine basic reflexes (four reflexes were tested in two ways, so the paper reports thirteen performance results). Three of nine reflexes showed significant delays in vaccinated macaques while two other reflexes were delayed and “approached significance.” As for the three significant reflexes, vaccinated macaques learned more slowly to: 1) turn their head in response to a brush on the cheek (the root reflex); 2) open their mouth in response to a brush on the forehead (the snout reflex); and 3) suck on a nipple placed in their mouth (the suck reflex).

The article goes on to discuss more about the findings, what the researches want to take away from the study, and what NOT to take from the study. I encourage you to click through to read the full post.

I wrote a long time ago about the difficulty I have in believing ever-stronger vaccinations can be 100% safe, 100% of the time, for 100% of our children, especially when other medicines being developed fall so far short of these numbers. This week that argument gets even stronger..

Great find, Mark. Thanks for sharing.

Monday, August 17, 2009

Siblings and multiple activities

One child with autism; one child without...

Life is always a balancing act. Heck, I grew up in a family with 4 kids - our weekends were always filled up with sports, hobbies, and school & extra-curricular activities. Didn't seem like a big deal back then, but today I have no idea how my parents managed to get us to every event on time, let alone stay and watch!

We've always bumped up against this problem with C & J, but balancing the two's activities is becoming more of a challenge as they grow.

I read an interesting article about this topic last week, written by Steve Heureux.

Unfortunately, no one has a perfect solution and there's no magic recipe. Just to do the best you can - include the siblings in each other's activities as much as possible, let them learn from each other & learn about each other, and provide parental love, support & encouragement. At least until I can clone myself &/or the kids...

(Steve's article also touches on the challenges of finding help, since a typical baby-sitter probably can't/won't handle the child with autism. - and neither will some family members! But that's a topic for a whole 'nother post..)