This year, we opted out of summer school offered through the school district to try something new. I am hoping to "home school" Lucas with the Waldorf curriculum. It is a non-rigourous curriculum which I plan to use to increase his awareness of changing rhythms in the environment as well as his every day schedule- after all, that is the main goal of early Waldorf education. I plan to incorporate lots of time outside (better get him used to wearing his hat even though he hates it), "help" around the house with chores (or at least try to include him), bake cookies, wash dishes, do laundry, etc... I am not sure how much of it he will absorb, but it will be fun spending time with him and I hope to get the ABA therapist on board to help me out. If nothing else, the therapist can ensure his safety during the activities.
Why I Left ABA from a therapist's point of view.
I found an interesting article written by an ABA therapist on why she left ABA. She found the process very abusive to her clients and corroborates her view with first hand accounts by adult people with autism who share how very abusive and tortuous the method was for them growing up. William Stillman states, "...there are precious few, if any, adult self-advocates who joyfully espouse the childhood rigors of systematic programming, and I haven't yet seen any studies that demonstrate how this programming builds esteem and mental wellness into adulthood." It is, of course, the only "evidence-based" method to produce significant results hence only method covered by our insurance. True, but I am sure chinese water torture would also be just as effective in getting wanted behaviors, but would that be the most humane and best way to get compliance? I think not. Besides, no studies have been done with adult individuals with autism the impact ABA had on their emotional well being.
Our ABA is more play based than the traditional version of a decade ago. As always, I keep an internal Luki's "happiness gauge" with any activities and therapies and if the reading is on the low side, I am quick to stop whatever it is we were doing. As William Stillman stated in his book Empowered Autism Parenting, "Too often, parents are conditioned by the autism industry to become overly dependent upon autism therapy because of the messages sent by the autism industry that more is better and that your child is broken and needs to be fixed, now. Yet, many children scream, kick, or cry during treatment or therapy, If this happens, parents should intervene immediately and if it happens more than once, cease doing it! Your child's "autistic behaviors" aren't behaviors at all - they're communications, communications that something is very wrong and why aren't you coming to my rescue, Mom!"
There are other drawbacks to the method, too as William Stillman elaborates here:
In examples I've observed, the ABA professional, seated across from the child, holds up a flash card of, say, a cow and prompts the child to identify ?cow" until he does so correctly and often enough to be considered to have mastered the skill. Negative responses, tripped by "behavioral triggers," are identified and modified in the environment or discouraged in favor of positive reinforcement. The positive response of the successful child may be rewarded with verbal praise, a food item..., favored activity, or toy.
Sounds great, right? The only problem is, as noted, that's not how most persons with autism think, learn, process, and retain information, let alone possess the capability to transfer what's learned in ways that are functional and appropriate. And if it sounds similar to what Pavlov did with dogs you're not far off base, though what thrills many parents is behavioral compliance - their child has been conditioned to suppress his autistic traits long enough to be less of a "behavior problem" and to outwardly present as "normal" But compliance for the sake of obedience does not equal success. It means someone has been conditioned to reply by rote. Further, we've disempowered parents from parenting. We've supplanted their ability to develop a relationship with their own children by dictating that a professional, previously a stranger to the child, is solely qualified (and required to be so) to interact with their child for hours on end. ....
If you want me, as the one with autism, to learn "cow" help me learn it naturally in the context of a mutually respectful, reciprocal relationship that makes it interesting, pleasurable, and intellectually stimulating to learn, If you want me to learn "cow", show me a cow. Take me to an open pasture and introduce me to cow; or at the least, let's learn about cow together, parent to child, by reading age-appropriate material, watching video of cows, and creating recipes using the food produced by cows, This is the type of quality interaction that those of us on the autism spectrum record for safe-keeping and replay years later as a pleasing recollection.
,,,And THAT is why we are doing Waldorf this summer!.
school for autism and developmental disabilities.
I found a school started by another parent with Dup15q Syndrome in the inland empire. I think the school just opened. Will need to look into more information about this school.
Ketogenic pill to treat drug resistant epilepsy
Brilliant new idea for getting the benefits of a ketogenic diet without actually having to sacrifice eating carbs. This drug sounds like an enzyme blocker to shunt carbs broken down from the anaerobic pathway away from the TCA cycle and directly into the lactic acid pathway. But of course! From what I can recollect during my biochemistry days, I think it would be 2 pyruvates per glucose molecule shunted to lactic dehydrogenase or the fat anabolism pathway. The person taking the pill would need to drink a lot of water to hydrolyze the stored fat. This could be a possible cancer therapy method as it would starve cancer cells of sugar which they love. Will be keeping an eye out for this in the future.
horse therapy for the disabled.
Summer is going to be filled with swimming lessons (by me), horse back riding therapies (click above), bicycle riding and Waldorf School for all Seasons curriculum along with floortime and ABA. The equestrian center stated that 30 minutes once a week is the schedule for summer but I'm not sure if Luki will be able to handle being on a horse for 30 minutes straight. Just look at his interesting exit strategy on a merry go round.
I can see him trying to get off after 10. Gabe and I are going to take him to a pony ride in Griffith Park to see how he handles horses and whether he will freak out.
Epdiolex clinical trials for intractable epilepsy at UCSF
Epdiolex, pure CBD oil with no THC, has now been included in a clinical trial at UCSF. Our stingy neurologist told me about this today. I ordered 200 mg of charlotte's webb extract in MCT oil for $50.00 yesterday through CW pharmaceuticals without even a note from a marajuana doctor. The email invoice I received states it has been shipped already...Wow, it has become so easy to get hemp products now which is great, but I worry still about the THC in the mix as it can cause adverse effects such as sleepiness, weight gain, mood disturbance...No studies have been conducted to show its effects on autism or neurodevelopmental delays, but I am optimistic about its neurogenerative capability to help with brain development. Not sure what dosage needs to be given as no studies for this purpose has ever been done. I am thinking maybe 1 mg a day as a low maintenance dose for him and see where this goes.
New type of seizure detecting watch called Embrace.
We just purchased this new and upcoming product which purports to detect seizures and stress levels in people prone to epilepsy. Not sure if Lucas actually needs it yet but I have noticed a handful of time when his eyes were blinking rapidly under his close eye lids. I mentioned this to the neurologist today and he thinks it is highly unlikely that what I witnessed was a true seizure (his eyes being closed made him think so). But, one never knows when, or if, it will happen and I would like to be prepared. I asked for a letter of need from the neurologist today so that we can get reimbursed from our healthcare reimbursement account since Kaiser doesn't provide such a device. He said he would not do it because Luki has not been diagnosed with epilepsy. Really? Jeez, why can't he just work with us? What harm would it do for him to just write a little note stating that it may help us with monitoring him? We are paying for it with our own money which we set aside. I am seriously considering changing neurologist. He seems just too uptight, rigid and not thinking outside the box for my comfort. I asked our pediatrician for same said letter and she said, "sure, will send it out in the mail today"..
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