HappyChucks   For Families Navigating the Autism Waters

There are hundreds of alternative treatments available for parents of autistic children to try.

Researchers, scientists, and the medical community at large have made a lot of noise about the validity of most, if not all, of these alternative treatments, saying things like, "They haven't been scientifically proven to work" and "They're treating something which has been scientifically proven to be inaccurate".

They would prefer to test these various treatments using two different methods, either of which would be scientifically valid.

Double Blind Studies. Take 200 similar kids, give 50% the treatment and the other 50% a placebo, and study the effects. If the results are different between the two groups then the treatment works.

Identify a Single Variable. Keep everything else in your child's environment exactly the same, and introduce one new variable. Then see what happens. If you see improvement then the variable made a difference.

Both of these methods are great, but both of them have major problems for parents trying to help their little ones.

Problem 1. There is no such thing as 200 autistic kids who are otherwise similar - autism affects each child differently, all the way down to their brain and central nervous system's ability to process information. There are many cases where a treatment/supplement helps one child and has no effect on another child, or even makes him worse.

Problem 2. In many cases, a child will make improvements based on multiple variables working together. In these cases, it would be impossible to isolate the one variable which caused the improvement.

Problem 3. Time. If we wanted to try 200 different remedies, treatments, therapies, supplements, diets, etc., and we kept everything else constant, and we tried each "variable" for one month, it would take 17 YEARS to get through all the possibilities. And that's just doing them one at a time!

Personally, we didn't want to wait 17 years. We believed we had a small window of opportunity, a few years at the most, to make the biggest impact on Calvin's life.

We listened to the scientists for the first year or two, but then we realized they didn't really have an answer - they were guessing as much as us, but would only try one thing at a time.

After that, we tried a lot of different things, often times in combination. If we threw 6 new things at him, and if/when he improved, we were happy with the improvement. Then, over time, we could try to reduce or eliminate some of the new things to figure out what wasn't necessary and/or helpful. If we introduced new things and he had a bad reaction, we could pull the plug on some/all of them quickly.

One of the keys is to keep a detailed record of what you're doing, which I've written about before. Another key is to be patient, yet impatient, at the same time. But listening to the doctors and scientists and taking their words as gospel - that's not the key. Maybe if they had an answer or a solution I would think differently. But so far they've proven that their methods aren't helping each individual family out there.

If you're fairly early in your journey into autism, this is a very important post. If you've been at this for awhile now, you still might find a few good ideas, but it'll take some effort to pull off a change!

This month marks the 7-year anniversary of Calvin's first home ABA program. That means we've been gathering paperwork from doctors, schools, therapists, the internet, etc. etc. for 7 years. And we've been making our own notes and journals as well, just trying to help make sense of what's going on at any given time. (why is he sleeping better, or worse? why did his bowel movements change? etc. – you know what I'm talking about..)

I could tell you the 8 schools Calvin has attended so far, and the dates he was at each one of them, but you'll need to give me a couple of hours to dig through everything first. What was the med trial we did when he was 4 or 5 that had horrible side effects? I'll need more time to find that answer, too.

You see, at the time things are happening, they seem so easy to remember. But a few years and a couple thousand pieces of paper later the details get fuzzy. If I was starting down this road today, here's what I would do differently..

Keep track of key events in a digital format (on your computer) in a highly flexible format with dynamic search capabilities. Here are some ideas, depending on your level of tech-savvy.

Create a personal blog. You can visit www.blogger.com and build a personal blog in less than 5 minutes, and it's free. You can easily checkmark (or uncheck) boxes so that the blog is not available to search engines, and can only be read by those you give permission to. This makes it a private blog, not available to the public. (although I would still avoid writing personal info like SSN, DOB, etc.)

You can create categories to assign to each post (you can even assign multiple categories to a post.) I would create categories for: ABA, Fidget Items (or Stims), Hab, Homeopathy, Horses, Illness, Medication, Music, OT, PT, Speech, School, Sleep, Social Settings, Vacation.

Write a short post whenever something noteworthy happens, with a few of the details & highlights which can jog your memory later. IEPs, Doctor Visits, Medications prescribed, Sleep patterns (he slept through the night for a week straight – yea!). Etc. The blog will time stamp each entry for you.

Over time, you'll be able to search by category, or by words, or by time, and you'll find the posts that match your criteria. Then you'll see the date you wrote it, so it will be very easy to go find the specific IEP you're looking for in your file cabinet. ;-)

Buy Microsoft One Note (<$100). (info here) Imagine having an unlimited amount of notebooks, and each one can have anything in it. A quick, handwritten note. A webpage printed directly to your notebook. Contact information for the doctor's office. etc. You can have a notebook for each of the categories, and you can add anything which pertains to that category to them.

You will find One Note fairly intuitive if you use Microsoft Office products already. It's not quite as fast and easy as the blog idea, and it's not free. On the other hand, it's more robust in what you can store, and it's on your computer so privacy is never a concern.

Use Microsoft Word or Excel. There's no reason you can't build your own journal with either one of these. It may not be as fancy or as dynamic, but either option is a whole lot better than paper stuffed into a file cabinet. Again, I would focus on making notes regarding key people and events. I would try to use the Category Words at the end of each entry, which will help you find things later.

The process can be as simple as opening Word and beginning to type – no different from opening a spiral notebook to write a journal entry. It can also be very detailed with tables, filters, drop-down categories, and more. Those of you who know how to use the power of Excel could build something pretty fancy.

Other thoughts

I'm sure there are other options out there – Outlook Journal comes to mind as another alternative. There are also some great scanners available which have come down in price. I've heard that you can get a commercial-size scanner to scan different sizes of papers and convert the paper text into searchable text for about $700. Someday I might consider one of these to sort through our mountain of paper.

BACKUP YOUR DATA! Regardless of the method you choose, please backup your data. Always think about this: what happens if your computer doesn't turn on tomorrow? CD-ROMs, DVDs, External Hard Drives, www.mozy.com – there are many choices available, please use one.

This is a very serious question, and I think the answer lies in 2 different parts.

1. What is there to gain (or lose) by testing? If it will make a difference in the services available to your little one, it might be worth your while.

2. How fair is the test? If the test can be administered in a fair manner, then it might be worth considering.

Our local school district wanted to test Calvin a few years ago, and we almost shouted NO! in unison.

First of all, their assessment of his abilities was the lowest of everyone he worked &/or played with.

Secondly, there was nothing to gain by testing – it didn't matter if he did really well, since they had already proven they couldn't teach him. But if he did not score well, they would have the option of moving him into a lower-functioning class where he wouldn't need to be "taught".

Thirdly, they couldn't administer a fair test. They agreed that he had (has) apraxia and is non-verbal, yet they weren't willing to make accommodations for the test. Everyone else who worked with Calvin (ABA, Speech, OT, PT, NMT, and friends and family) would attest that he knew everything that was being spoken to him. He just needed to communicate via alternative communication methods, such as PECS (Picture Exchange Communication System), word cards, or Facilitated Touch.

This is one of those questions that doesn't have a right or wrong answer, per se. Just think about who wants the test, and why, and remember that the results will become part of your little one's permanent record...

I've lost enough time, energy, and frustration over getting this blog to look and perform the way I want.  Sometimes the best thing to do is to admit when you're in over your head - it's time to call in the professionals.

I'm going to start writing - hopefully good, solid, high-quality articles that you'll want to read.  That is, afterall, what I had set out to do in the beginning.

Fortunately, I know people who know how to make blogs do what they're supposed to...  (we have ways of making you talk.)  Look for some nice changes over the next month or two, and some fun and interesting writing...