Monday, April 21, 2008

Great workshop!

So Stafford County Schools invited James W. Partington, PhD.,BCBA to come present two workshops. Today's workshop was Teaching Language to Children with Autism and Other Developmental Disabilities. He is a great speaker. He's capitivating and easy to get. He said some very interesting points today that really struck a cord with me.



I've never felt Brady's preschool class was the right placement for him. The teacher is wonderful however she has other students to teach. She cannot follow Brady around and break everything down into discrete trials like he needs. The other children are great. The peer models are cute and they try to engage Brady. The problem is basic really. Brady lacks the language skills to learn and socialize in the classroom.



Some very key things that I keep replaying in my mind.




  • What does he need to learn?

  • They tune out when what they hear has no functional value to them.

  • Teach functional skills...Why teach him something he doesn't need to know on a daily basis?

  • Brady isn't repeating what his peers say. If he can't repeat them he can't learn from them.

  • If they're not looking, they're not learning.

  • When education providers are taught a little bit of different methodologies treatment gets "watered down". (his words)

  • It's not good enough to just sit in circle time.

He brought up the study that supported that children who receive intensive ABA treatments improve significantly more than those who receive an eclectic program. Remember, my county invited him to speak. Also remember that my county has told us that there are studies that claim that eclectic programs are better. He has supported what all the professionals have recommended for Brady yet the school has refused to offer such services. Doesn't the irony make you want to laugh and scream all at the same time?


Let's add to said irony. Last Thursday the Parent Resource Center asked a well-respected developmental pediatrician to speak about autism. he said that the only proven effective method for teaching children with autism is ABA.


Laugh some more. Scream some more.

Thursday, April 17, 2008

Can't you just do your job?

Why can't I get people to call me back? This is life when you have a special needs child. You spend half of it on the phone when you could be spending time with your kid. You call to schedule an appt, a very important appt. They say they'll call you back. They don't. You call and leave a voicemail. Then another. And yet another. Finally someone calls you back. It's ridiculous. I am waiting on 3 different places to call me back with dates. I need to schedule an IEP and I can't because it's contigent on those appts.

Monday, April 14, 2008

It's not fair that money controls it all!

It's so sad and frustrating that we don't have the money to do everything we can for Brady. We've sunk into a hole of debt that's scary and strangling. It's a disgusting injustice that the insurance companies and school districts aren't providing what they should. They each point the fingers at each other while the children are falling further and further behind.

I worry about running out of money to continue all we're doing for Brady. I dream of a wealthy person deciding that they would love to help Brady out and donating a large sum of money to his recovery fund. It would be such a relief to not worry about how to fund ABA, biomedical treatment, and therapies like the feeding clinic.

It's not fair that how much available credit you have determines your child's future.

Going SCD on Brady!

Sounds funny doesn't it. I wish I could talk into a taperecorder during the day and then plug it in and have it update my blog for me. By the time I'm able to get on here at night I'm exhausted. Most of the time too mentally exhausted to type out my thoughts.

Like I haven't blogged about the DAN! conference. I love going to them every year. They renew my fighting spirit and I always learn something new. This year I found out that there is a feeding clinic not too far away. So I've spoken with them and we're in the process of getting started with that. I'm hoping we can get the insurance company to pay for some of it. Brady's eating is terrible and it makes my heart sad. He's eating for two....him and the freaken yeast parasites living in his gut.

We're never going to kick the yeast to the curb once and for all until we change Brady's eating habits. He's sustaining himself on potato chips, Tings (sorta like a chip but made from corn), and a soy yogurt he'll eat occasionally. See....total yeast food. I describe Brady as an addict and the yeast is the drug. They have to have their fix as well so they make Brady crave the carbohydrates and sugar. As long as he gives them what they want it's all good.

So that's where SCD comes in the picture. It's the Specific Carbohydrate diet. This says it way better than I could....

WHAT IS THE SPECIFIC CARBOHYDRATE DIET?
SCD is the autism diet that is in accord with the latest scientific findings. Research confirms that gut pathogens (the microorganisms in the gut) cause digestive and brain problems. This research has established that gut pathogens can damage the GI tract and impair the brain function of autistic children. It attests that harmful gut pathogens survive because they feed and thrive on carbohydrates that are difficult to digest. When SCD eliminates the pathogens' favorite carbohydrates, it starves them out. They can no longer live and continue destroying our children's guts and brains
.

Brady had said up to 60 different words at one time. But something has happened and it's like he's unable to say them anymore. I can't tell you how much that scares the crap out of me. How can we be losing words???!!! We waited for so long for all those words and now all we get is "go" and "bye"? For some reason it didn't dawn on me till a fellow autism mom mentioned it. The yeast has stolen his words. It might sound crazy to the typical person but in the world of autism yeast is a mighty beast that can impair your child's brain just sort of the way a vaccine can. It's scary crap and it's hard to beat. Antifungals just aren't doing it. We can keep taking the antifungals but the yeast is constantly being fed so it's going to continue to thrive.

Now the first few weeks of SCD are going to ugly, and I mean ugly! Brady's going to be like an addict coming down, falling hard. The SCD diet is our version of intervention. He's got to start eating vegetables, fruits, and god forbid meat. We always joke that he's a self-imposed vegan minus the vegetables.

So I've ordered The Gut and Psychology Syndrome book, and a yogurt maker. I bought a whole organic chicken, organic carrots, and organic pears today. I'm going to prepare all those and then freeze them in daily portion sizes. That way by the time we start the diet I'll have the food cooked and ready to go. Who is going to have time to cook when your cute little addict is jonesing for some potato chips and you have to keep him from tearing the house apart? But you know what? I welcome that kind of behavior because I will know for sure we're doing the right thing.