Autism: My beliefs and ideas Saturday, Jul 28 2012 


If you know me at all, you understand that I get extremely frustrated when I’m misrepresented. My beliefs are as thought out and consistent as I can make them, and when folks make assumptions about what I believe I get angry. Real angry. So, to prevent frustration and help folks better understand where I’m coming from I’m going into some detail about my beliefs.

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April 2012: Autism Acceptance Month Friday, Apr 20 2012 


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I normally write these posts on World Autism Awareness Day, but this year I’ve been so busy I haven’t had time to write until now. Also, I have a lot to say and wanted to let my thoughts coalesce into a more solid form prior to posting my annual self assessment. I like to take stock of where my family has been and where we are now, and I finally feel ready to do that.

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Is it medical or educational? Wednesday, Dec 7 2011 


I recently watched a local news story that upset me. You can watch it yourself at the WUSA Channel 9 site. It is about a 6 year old boy who came home wearing a weighted belt, which is an OT support used to help kids regulate themselves. The mother was quite upset and is calling it a case of restraint.

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Art, autism and vision: seeing the world differently Thursday, Sep 2 2010 


I call that one “Stairway Picture on cellphone camera with random camera effect.” I’m not a photographer, but this stairway looks different through the lens of my camera than it does when I’m looking at it. Throw the effect on and its a totally different place. (Bonus points for whoever can tell me where this was taken. The points aren’t worth any money, only social media meets real time l33t/\/355. )

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Awesome summer camps in Fredericksburg! Friday, Aug 27 2010 


Okay, the summer is over and now its time to start blogging again. I’ll start with two awesomely incredible camps that Raymond attended this year.

First up was the Stage Door Stars Sensory and Social Learning Theater Camp. Stage Door is our local non profit theater troupe. This camp had an excellent staff and was fairly affordable. We jumped in as soon as we heard about it, as I loved drama in high school and continued acting into my early 20s. I am familiar with the power of expression and hoped it might help Raymond express himself. The camp itself was a small army. Every child had a buddy, who was a volunteer. Additionally, they had 2 occupational therapists, a speech therapist, a drama teacher, a special ed teacher, and I think a few other folks I’m forgetting. (The camp was in early June and its now late August, so forgive me.)

Raymond had a rough first day, but the staff really pulled together and made a plan to help support him. That, more than anything, made me feel great about this camp. I know my son can be difficult, but I felt like they saw his potential like I do. They switched his schedule around, got some sensory support and trained his buddy a little bit and he had a wonderful remainder of the week. The performance was at the very end of the camp.

My wife and I, Raymond’s grandparents, our good friend Sheila, Raymond’s autism teacher and school paraprofessional all attended the performance. It was incredible. They did a narrated version of “How I Became A Pirate,” an adorable little book about a child who imagines himself at sea with pirates. Every child had a line, and Raymond said his nice and loud! I think my wife cried the whole time. Raymond looked in the audience and his face lit up when he saw everyone that was there. He did everything he was supposed to and the entire performance went off without a hitch.

The second camp was with Raymond’s occupational therapist, Helping Hands Pediatric Occupational Therapy. Lisa Worcester, the owner, managed the camp. Again, she had a buddy for each kid and plenty of staff on hand to help create fun activities. The camp was called Camp Adventure, and every day they studied a different country.

What I really liked about it was that Raymond was calm the entire day after camp. They must have done a ton of heavy work, because Raymond’s sensorium was totally at peace. It helped us have a wonderful week at home in addition to his enjoyable camp experience. The food was also gluten and casein free. Lisa is really sensitive to the needs of the autism community, and she really does her homework. She is a clearinghouse of good information and a great person to have on your team.

Best of all, Raymond had a smile on his face when we showed up and a bigger smile when I picked him up. He brought home a camp “passport” with information on all the different countries and recipes for the foods they ate. He still, several months later, knows all the countries, how to pronounce the different names and can sing a couple of the songs they learned.

I highly recommend both of these organizations. Check their websites for information. Stage Door is a wonderful organization that hit a home run with its camp this summer. Helping Hands is Raymond’s OT shop, and we have been going there for 3 years. Check them out!

The Individual Education Plan or IEP Part 3: The IEP meeting Friday, Nov 20 2009 


Alright, you have done your prep work, research, and you are ready to sit down with your child’s IEP team and find the supports that will make your child successful. I’m going to start this with a list of “Dos” and “Don’ts.” If some of them seem like common sense then you are ahead of the game.

DO:

Dress Nicely
Remain Calm
Bring materials with you
Have your materials organized
Have outside OTs, PTs, SLPs and other experts attend the meeting
(If a couple) Sit on opposite sides of the table
(If single) Sit at the head of the table
Have a notepad handy and take notes

DON’T:

Dress like you are going to the gym afterward
Attack everything they team members say
Bring cookies, muffins or other snacks
Agree when told that your child doesn’t listen, sit still, etc.

First off, if you dress nicely they will take you more seriously. It seems elementary, but I have seen folks show up on clothes that looked like they had never been washed. I’m also going to give you a mantra to help you stay calm. “Whoever loses his/her temper loses the battle.” Its okay to be strong and firm, but yelling and screaming will derail all the positive work you have done in a second. If you have materials, bring them and make sure they are organized. Bring your child’s other therapists if they will attend. They can help you make a good case for your child receiving more services. You need to be able to see everyone’s faces to gauge reactions, thoughts, etc. As a couple you can do this most effectively by sitting on opposite sides of the table, and if single sit on the end.

You can’t attack everything people say and expect them to take you seriously, or even want to work with you. That’s the key to the IEP team. You have to get everyone on your child’s side. I’m not saying be a milquetoast, but respect everyone’s right to their opinion. You can change their minds later with the right tools. I’m going to capitalize and restate this one for you: DO NOT BRING COOKIES, MUFFINS OR OTHER SNACKS TO YOUR IEP MEETING! Some administrators may view it as a bribe, others may refuse on principle, but the main reason not to do it is because the IEP meeting is a business meeting, not a social event. The last one is a bit of a paradox, since I’ve told you not to attack everything they say. However, allowing people to have their say and agreeing with them are two different things. You can listen to them respectfully and still not nod your head or say “Yes I have seen that.”

The key, in my opinion, is to start the meeting positively. We are very friendly with our child’s IEP team. Typically it will start with a review of information, and this is a good time to present your child’s PLOP. Make sure it is entered in the IEP. This puts a positive view of your child right up front. Other people on the team will also add their observations at this point. This is a good thing. It starts the process that I like to call “puking.”

Working with our kids is hard. As parents, we know that. Just because it is hard, however, doesn’t mean it is impossible. However, in the beginning of the meeting I want you to listen. Be an active listener. Ask questions, make notes of rebuttals or ideas and show genuine interest. The puking can go on for over an hour, due to some weird group speak phenomenon I have witnessed. When the puking finally peters out, then and only then can you go to work. It may take a while. We have had IEP meetings lasting 3-4 hours. Don’t worry. Take all the time you need to make sure they are done puking all over the conference table, then you can start working on changing their attitude.

As an advocate, you have to be the catalyst. Since the people reading this probably don’t have a law degree, we have to figure out how to be catalysts in a positive way that makes people want to help us. The first part of that is listening. The second part is responding. Its tough to get through the puking without getting mad, but remember whoever loses his temper loses the battle. Remain calm, and make notes about how you will address these issues.

Your time to shine is when the team starts going through the modifications and supports. This is where you start asking for things, and when a team member objects using their “puke,” you simply use your notes to refute their argument. For example, one IEP meeting we attended, the consensus was that our son didn’t listen. We know that, as he has an auditory processing deficit. However, we had to let them puke that out for a good half hour. Once they were done my wife said “He has auditory processing deficits. He may not understand what you are asking him to do.” Then it was like a light bulb came on.

The real misconception with autism and autism spectrum disorders is that these kids are behavior problems. In fact, most kids on the spectrum have sensory issues and their “behavior problems” are due to overloaded sensoriums that lead to them acting out. This is the key point we need our IEP teams to understand and support. When they are puking, listen to the complaints. Are they complaining about behavior? If so, you should always put that back on them. “What was happening when he had this behavior?” “Who was in the room?” “What was the class doing?” The hope is that you can find what triggers and overloads your child’s senses and give him support then, because that’s when he needs it.

Okay, this one is long enough. Next up: What to do if things don’t work out at the table.

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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