Well, after a lot of fighting we got Alex to the Kennedy Krieger Institute. It was a ridiculous battle, and shame on Providence for trying to deny somebody as obviously in need as Alex. Their initial denial was flimsy at best, claiming various administrative errors. We appealed and they denied with much more coherent (but still ridiculous) reasons.
Their position was that ABA was experimental and therefore not necessary. Not only is that somewhat absurd, it’s also not the only thing KKI does. They have a toolbox filled with possibilities, and while ABA is an important part of their process, it is far from being the only thing.
Providence went on to claim Alex wasn’t going to benefit from the therapy anyway because he’s developmentally delayed, and Providence doesn’t cover developmentally disabled people’s mental health services.
Then they actually tried to claim that Alex’s Tuberous Sclerosis could be to blame for his behaviors, not his autism. I don’t know what kind of back-woods doctor they have on their team, but any decent review of Alex’s medical history would show that no doctor has ever believed that to be a possibility. We had a lot of hope that getting tumors out of his brain might help, but they just aren’t a significant issue in terms of behavior. And even if they were, KKI can look into that further anyway! Repeat after me: KKI isn’t just ABA therapy.
When we saw their statement, we asked to skip the level 2 appeal and jump straight into an expedited independent review. Less than one business day after we submitted our counter-arguments, the independent reviewers overturned Providence’s decision.
If anybody out there has a child with autism who is being denied something important, FIGHT. It almost seems like the denial was just a formality to see if we were serious, because the independent review was so quick to point out how ridiculous Providence’s claims were. Now I’m aware autism therapies are very expensive, but I’m convinced the costs could be lower if kids like Alex could get the help they need before things go to hell. Early intervention as opposed to constantly fighting to deny important treatments.
So leaving Alex a million miles from home is awful. But at least this time we know he’s with very specialized people who exclusively deal with major behaviors like Alex’s. There were a lot of people at Alex’s group home who did an amazing job, but it just didn’t have adequate staffing, and the staff who really cared weren’t given the support they needed to stick around.
Once Alex returns from KKI, he’ll have a doctor-ordered plan that needs to be followed, and per KKI’s suggestion a new group home where everything will be new to him – no falling into old habits or having staff who are used to doing things one way having to be retrained.
Giving up on cannabis, at least for now, is also pretty disappointing, especially for me. I had put so much faith into this little plant, especially after some of our amazing successes. But in the past year or two, it hasn’t done more than give him that “two point boost” I described a while ago. The huge improvements we saw early on have been very difficult to reproduce, and while we usually saw improvements, they weren’t consistent, they weren’t amazing transformations, and they only happened when we could get him to take the medicine – i.e., not every visit, not when he was extremely anxious, not when he was ruminating, etc. KKI can’t help with the cannabis, but what they offer is still incredibly important. They’ll be figuring out how to make him feel more in control and setting up a plan so he always knows what’s going to happen next.
A more pressing issue is why cannabis can’t get the hell off schedule 1. If it were allowed to be prescribed and grown, finding the right strain and getting consistency wouldn’t be so tough, and combining regularly low doses of cannabis with a solid behavior plan would probably do wonders for Alex. So while I am not renewing Alex’s OMMP card, you can bet I’m still watching carefully for who does and doesn’t support reforming our nation’s destructive war on drugs.
I understand your frustration with getting the RIGHT strain of medical cannabis. Too often, parents of severely autistic children have a horrible time finding the right STRAIN high in CBDs for their autistic child. Yet, it’s as frustrating as going to 16 doctor appointments trying to figure out what “conventional medicine” (aka ritalin, seroquel, risperdone, haldo) will be the “magic pill.” for your autistic child. Mainstream media and medicine just doesn’t understand how BEHIND in treatments and supports our entire healthcare and social service system is in treating autism and self injurious behavior. Our country needs more experts in this field to shed light into how to help this most desperately in need population.
So true. I hope with the situation in CO and WA, not to mention Uruguay and potentially other nearby countries, that science can start doing some good on this topic. There’s just so much potential for so many ailment. It would be one thing if there was any significant research showing cannabis as a poor choice… but right now there is precious little research being done, and the research that is done only shows us the possibilities. We’re only scratching the surface, finding out it’s a good pain-killer, anti-cancer agent, etc. We need to really dive in and figure out what works best for kids like Alex.
Ideally, you want your children to be healed whilst still being able to function normally, not stoned out of their heads. CBD Crew Seeds have strains with CBD and THC in ratio of 1:1, which should be ideal for kids who need this vital medicine.
https://www.facebook.com/CBDCrewSeeds
My son was a lot like Alex. He’s 15, nonverbal and self-injurious. Calvin is a medical patient here in Co. We’ve been using cannabis oil for 5 months. We dose three times per day & see best results with a 8:1 ratio. I think about Alex everyday. Thank you for the updates.
We are looking into starting our son on cannabis sometime in the near future. He is 7 with PDD-NOS and has severe mood swings. We tried oxytocin and it worked miracles – for 3 weeks. Then it faded away. Lately we have been doing homeopathics. He takes carcinocin 1M 2x/day and that really cuts the anger and mood swings. You have to stay up on it but at least it goes in water and is easy to get him to take.
It isn’t a miracle cure but it can help – and – it doesn’t interact with anything else. Just a thought – if you are trying options.
Thank you SO MUCH for your blog! We all need all the help we can get!
Our daughter has PDD nos too. We got her off of guanfacine and her daily Rages decreased. Now its about once every couple weeks only at school she gets violent. I am curious about where or how to get carcinocin?
Hi!
I’m actually a CA in the NBU with Alex, and he’s such an incredible case. I’m so so glad he’s doing better, and everyday we watch him get a little better, bit by bit. It will be great to get to see him go home!
Good luck!
Should try out “Charlotte’s Web” strain.. High CBD low THC
This is at a complete tangent but I feel if more people knew about it that it would speed legalization.
Cannabis cures cancer. Look up:
Dennis Hill biochemist cancer – or – Dr. Christina Sanchez molecular biologist cancer
Hello, I am a care giver for a company named RISE inc. and at the program I work at we are getting a young boy named Alex from KKI. I was just wondering if this was Alex.
Medical cannabis strains high in CBD are a miracle for autistic people with self injurious behavior….