Agenda

It’s hard to figure out without reading the whole blog, so I decided to try to regularly update our current agenda. Basically this is to answer the question, “what do you want?”

Simple:

  • We want Alex on cannabis in his group home
  • We want to expose others to how much pain prohibition has caused a completely innocent child

We want Alex’s group home to give him the one medicine that has shown great promise.

  • We want him off every other medication if possible.
  • We want to see if cannabis can manage his seizures, high blood pressure, and behaviors without need for other, toxic medications.
  • The pie-in-the-sky dream would be to see Alex back home, at least for a little while. I don’t dare hope that we could actually care for him long-term again, but it would be incredible if marijuana could stabilize him enough to have him stay with us on weekends or something.

Prohibition is an utter failure. It’s a debate of science vs. ignorance. For us, it has meant that we don’t know how to get the right dose, what kind of dosing would work best, what strains could be better for Alex, etc. Basically, prohibition of cannabis has taken away a very good option for Alex’s medication choices.

In any elections in your area where marijuana initiatives are on the ballot, vote wisely — marijuana is one of the safest medications we have, and education is the most powerful weapon we have. I for one have decided to look at every politician’s drug policy stance as my number one issue prior to voting. Other issues are important to me, but none so much as ending the drug war.

17 Responses to Agenda

  1. Pingback: Marijuana, autism, and failure: a true story « Alex's Story

  2. Amy Deed says:

    I listened to your interview on ‘A Different View,’ and was touched by your dedication to your son. I read an article once about THC in a pill form. I was wondering if perhaps this is somthing that your sons care providers would be willing to provide, or if you had ever tried it for your son.

  3. Dad says:

    We did try Marinol, but Alex doesn’t really understand pills. He would just spit them out. The center would administer it if he were willing to take it.

    • Ceann says:

      Dad, could you reach out to me, I need some support from parents that have placed their child. Mine is 21 and same if not worse off then your son. I have struggled for years at the thought of placing her and need someone to talk to. Let me know if you or your wife can reach out and lend an ear and support.

  4. Fannie Rein says:

    Look into research on THC being done in Israel where they have isolated the compound and do precise research and testing. I don’t remember the name of the Dr. I read about but I am sure you can find it on the net. Good luck!

  5. Ryan says:

    THC may not be the key. I found http://abclocal.go.com/kabc/story?section=news/health&id=6989085 an article about a lady treating her 10-year-old autistic son who is now a different boy his mom says.

    While the mom didn’t release her name, it may be possible for you to give the station your information.

  6. Colorado says:

    I just ran across this, seems like this blog has been going for a few years now so i am not sure what progress you have made in finding medicine for your son. But I can probably help you, I own a center in Colorado. Obviously I cannot mail you anything but i can teach you how to make edibles for your son. There are ways for you to make your own hash oil, its not that difficult. That is my first thought. My second thought may even be easier…..you should move you and your son to Colorado where mmj is legal. We have an entire industry devoted to medical marijuana out here. If anything, you should visit Colorado, I am sure it would help you.

    I wish you the best. If you want to talk, please reply with an email address and I will send you my contact info.

    • Laura says:

      Actually, if they want to keep Alex in a group their problem isn’t actually about the State laws so much as the federal laws governing marijuana. The state receives a $3 to $1 match. For every $1 the state puts towards institutional {Group home} care the feds give $3. This means they are stuck until federal laws change. Any Medicaid {CMS} money must follow federal laws. OR they need to figure out a way to administer themselves daily. My thought would be to actually sit down with the case manager, a few key state people, and a medical Dr. who does prescribe and figure out ways to think outside the box. Colorado is onto something regarding medical marijuana foods. Again the group home will not administer something that is federally illegal but it might make it easier to give though from what I saw in the video he is taking the oil willingly. HMMM. This is a tough one. I agree with you all wholeheartedly that this is the right track for Alex. Given I support people on Haldol and other awful medical restraint drugs and know first hand the effects of some of these are permanent. I will contact privately with my thoughts.

  7. K O says:

    Be careful with certain strains of medical cannabis, as they can actually trigger twitching and more seizures. Those strains are almost always the sativas. Safest way to give autistic children MMJ is to stick with hybirds mostly indica and make sure the strain is low in THC higher in cbds.

  8. Jessica says:

    As an adult with autism who was on most of the drugs out there (including street), I sympathize with your plight. I was very much like your son, very abusive, both to myself and others. Most prescription drugs don’t mesh well with me because my mind tries to discover ways around the blocks the drugs place in my head, it was like my brain would work overtime, just to find ways to be myself.

  9. I’m happy to help you with fundraising and media. I would be willing to donate a mutually agreed amount of hours to help you get the exposure and help that you need. I have reviewed your agenda. You’re welcome to contact me directly on 310.779.4797. I just spoke with Russ Belville who is a good friend of mine. We’ve worked together as activists for many years. Please feel free to reach out. God bless you and your family. Help is on the way. All the best, Cheryl Shuman

  10. Darragh O'Regan says:

    Hi there,

    I hope things are going well for you and your son. I would highly recommend you look into securing the services of a behaviour analyst. They will assess the reason why your son is engaging in this behaviour and give you evidence based treatments to help him overcome this difficulty.

    I don’t have an opinion about the medical marijuana but I would say to be careful about it’s interaction with any psychotropic medication he may be on e.g. that prescribed by a doctor. This could be dangerous depending on the medications he is on otherwise.

    If you have access to a behaviour analyst, make sure that they have the appropriate qualifications (i.e. BCBA or BCBA-D) and they have given you a copy of a functional behaviour assessment and a behaviour support plan.

    If you are in fact working with a behaviour analyst and are not happy with the results you are seeing from their input, ask them why they think the treatment is not working. If you are not satisfied with their answer, ask them can you get a second opinion. They should be open to this and if they are not, again ask them why. Depending on where you live, you should easily be able to find another professional. Check out this site for a list of Board Certified Behaviour Analysts in your area. http://www.bacb.com/index.php?page=100155

    While I don’t have a child with autism, I know lots of people who engage in severe self injurious behaviour and while it can be very difficult to treat, the overwhelming majority of people see significant reductions in their behaviour with the right behaviour analytic treatment. With that in mind, I hope you can find the right person for the job.

    I really wish you and your son the best of luck. If you want to discuss any of this with me, I would be glad to do what I can to help.

    Kind Regards,

    Darragh O’Regan

  11. Angie says:

    Is this lady Darragh for real? Really? Holy moly lady, this family doesn’t need a friggin Behavioral Analyst! They need medical help for their child to rid the child of tumors causing him unbearable episodic pain that triggers the self injurious behavior. Behavioral therapy doesn’t do jack for most children or adults with severe self injurious behavior because the underlying cause is UNTREATED medical issues that are causing discomfort. ONLY when these are treated would you even attempt a behavioral therapy plan. Imagine if you, the behavioral analyst, had cancer. And everyday you were puking your guts out and had severe headaches and stomach pain. And you were so stressed by this you started biting your nails and banging your head. And then in walks a behavioral analyst to save the day.

    • Ceann says:

      I agree, we have tried ABA 3 times and no success. Our daughter is now 21 and is only getting more and more aggressive with SIBs and going after others, with property damage. I am seriously considering medical marijuana…… what have we got to lose at this point vs keeping her on these prescriptions that are toxic to her liver.

  12. Ceann says:

    Our next resort is a group home, and I have been sick to my stomach just thinking about this.

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