A few definitions, concepts and other stuff Monday, Dec 22 2008 

Okay, I began thinking that I’m probably somewhat jaded with the terminology associated with autism, biomedical intervention, therapy and the like. On that note, I felt a glossary of sorts might help people sort things out regarding treatment options and ideas. If some of this seems elementary, keep in mind I am trying to make this as simple as possible. These are in no particular order, although I may edit and alphabetize them in the future.

Nutritional supplement – vitamins, enzymes, transfer factor, probiotics, most antivirals and antifungals that are not prescribed by a physician.

Homeopathic, homeopathic remedy – any preparation made according to homeopathic rules, typically not recommended for use unless under the care of a homeopath or naturopathic doctor

Prescription drug – any drug prescribed by a physician

OTC drug – over the counter drug, no prescription necessary

Vitamins – nutritional supplements that are either single or mulitple vitamins to supplement intake

ND – naturopathic doctor

GFCF – Gluten Free Casein Free diet, very popular in the ASD community.  Variants are GF for gluten free and CF for casein free.

SCD – Specific Carbohydrate diet, and specialized and restrictive diet designed to help find out what allergies are present

Feingold – an ADHD diet that removes food additives and salicylates to treat ADHD and certain ASD behaviors by removing irritants and allergic material

Now let’s talk about some therapies.  I know the ASD savvy will know most of these, but this is also for folks who don’t know anything.

OT – occupational therapy

SI -Sensory Integration, a specialization in the OT field

Sensory Diet – certain sensory activities done on a regular basis to help overcome emotional and physical sensory processing difficulties

PT – physical therapy

Speech – speech therapy

ABA – Applied Behavioral Analysis, a type of behavioral therapy, currently the gold standard in ASD treatment

DIR, DIR/Floortime – Developmental, Individual Differences, Relationship-based approach, another type of behavioral therapy

RDI – Relationship Development Intervention, yet another type of behavioral therapy

Now let me put some of it in perspective.  I chose these terms because

A) the were the first ones that came to mind, and

B) we use most of these terms in our household and chatting with our friends about autism and ASD.

First off, the biomedical terms are especially useful when dealing with nutrition.  For example, My son Raymond is on a CF diet and takes no prescription or OTC drugs.  We are starting Feingold at the beginning of January, but will still remain CF.  Raymond takes specific, measured amounts of nutritional supplements, homeopathics and vitamins under the care of his pediatrician. His pediatrician is not an ND or homeopath, but has received training in both areas and uses them regularly in her practice.

Obviously knowing the code is half the battle when talking about autism and ASD.  Now let’s talk about therapies.  Once again, I will use my son as an example.  Raymond attends speech and OT with local practitioners. His OT specializes in SI and has given us a sensory diet to help Raymond develop and maintain his emotional stability and self regulate. We also use DIR/Floortime to help Raymond better understand communication and how it works.  We considered ABA and RDI, but felt that DIR was the best alternative for him based on his function level, play style and ability to overcome challenges.

Naturally, there are a thousand more terms I’d like to put in here, but I feel like this post is long enough.  I’ll be throwing some more posts like these in my blog, as well as exploring these therapies and why we chose the therapies we use, but for now I’ve got to go chase after my son before he dumps another container of syrup on his trains!


Christmas Ideas, or toys for kids with Autism and ASD Thursday, Dec 4 2008 

One of the biggest problems we have is buying toys for our son. First off, we have to limit the number of toys he has access to at any given time so he doesn’t go into sensory overload. Second, we are paranoid about toxins, chemicals, effluence and the like, so we try to buy stuff that will not poison him or fall apart in his hands. Third, every toy has to have a use over and above being a toy. For example, if we buy Raymond a train, he has to tell us which train he wants, thus creating a language opportunity. Then, the train he picks out will be used with the appropriate train set with mommy or daddy, thus creating another language opportunity during play. We keep his train sets boxed up, so he has to ask for whichever set he wants to play with, and he has to clean up whichever train set he has out prior to getting another one. This cuts down on clutter and forces language. Toys aren’t just for playing anymore, or rather playing isn’t just for fun. It has a purpose, and its purpose is development.

Kids use play to develop. The studies I’ve read show that play is essential to building creativity, decision making and abstract thought. However, our son has difficulty doing some of that himself, or will get stuck endlessly recreating a video he watched about Thomas the Tank Engine. We have to help him break out of that loop, so we do it by introducing challenges into his play that he has to overcome. I’ll get into that a little more when I talk about DIR behavior therapy, but suffice it to say that we have made a lot of progress using that method.

So let’s talk about toys. The first couple links I’m going to give you will get you on the safety path, because nobody wants their kid chewing on a train covered in lead paint.

Environmental Working Group – http://www.ewg.org – This is a non-profit focused on finding toxins in every day products. This site is a wonderful source of things to avoid and get out of your home. This isn’t so much a toy toxicity site, as an overall household toxicity site. Still, it does list some chemicals, like Bisphenol A, that are used in toy manufacturing.

Healthy Toys – http://www.healthytoys.org – I’m sure most moms have heard of this site. These folks to an amazing job finding toxic toys and rooting them out.

Healthy Child – http://healthychild.org – I’m on the fence about this one, but that’s mainly because I see Harvey Karp’s face staring at me, and he has stated point blank that toxins do not play a role in developmental delay. However, read it over and see if it sounds reasonable. They do seem to have some relevant and well written articles, so you be the judge.

Let me take a minute to acquaint everyone with a term I learned in a Green Building class. Its called “Greenwashing,” and a number of companies are doing it. Greenwashing is misleading consumers regarding the environmental practices of a company or the environmental benefits of a product or service. For example, the auto industry is currently greenwashing ethanol because it is renewable. However, ethanol burns hotter and faster, meaning cars burn more of it, and it still creates CO2, which means it has a bigger carbon footprint. Although it is renewable, it is not truly “green” as it causes more harm to the environment than it does good. There is a lot more information on greenwashing at the Greenwashing Wiki Site.

Okay, on to the toys! I’ve listed a few sites where we order toys.

The Therapy Shoppe – http://www.therapyshoppe.com – Great source of therapy related toys

Super Duper – http://www.superduperinc.com – Another great place for therapy toys and educational materials

Professional Development Programs – http://www.pdppro.com – The best place for low cost, high quality OT toys. Thanks to our former OT Cindy for telling us about it.

Southpaw Enterprises – http://www.southpawenterprises.com – These guys are great too, but the price tag is higher as they typically sell to schools and therapists. Still, we bought our platform swing from these folks and it was worth every penny.

Also, we get a lot of toy advice from our therapists. In fact, probably 50% of the toys we buy come directly from therapist recommendations. We were very fortunate that a couple OT’s from our local school system had a class on therapeutic toy buying last year, and that really helped us reorient our buying. Below are some lists from folks on the internet and some corporations that are trying to help out.

Preschooler Autism Toys on Amazon – This woman did a great job putting together a list of toys you can buy right there. Check them out and see if they’ll work for your child.

Toys for Autism– We haven’t purchased anything from these guys, but the toys look pretty good.

Discovery Toys – They make great, high quality toys. We have several things from them.

Ikea – They have some surprising finds. The “egg chair” or Lomsk is one of Raymond’s favorite places to sit and relax. They used to have a crash pad for about $80, but I don’t see it on their site. Poke around in the store. You are bound to find something good.

The real key, for us, is multiple use. Does the toy only do one thing? Then its probably not the right toy for us. We need multiple uses from every toy, because we spend all of our extra money on therapy. Shop for value, but also shop for quality. Our theory is that one multipurpose $30 toy is better than 3 $10 single purpose toys.

Also, my pal Bonnie over at Autism Family has some similar hints and additional sites on her site. You can check it out at Bella Online. Happy shopping!

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