After stating the blog would go on, I haven’t touched it.
Partly I don’t feel like putting up more because I’m satisfied that Alex’s story was able to really be told. Partly I feel like the updates aren’t helpful since it’s just repetitive information – Alex is happy, now he’s unhappy, now he’s happy, and so forth.
But honestly, a lot of why I’m done has to do with Alex’s situation just not being one that makes for good updates.
The tincture hasn’t helped him very much since the brain surgery in late January. When it does help it’s only a little bit. We aren’t sure why. Many of his best days recently have been completely unmedicated, in fact. Since the surgery, his mood has been a bit better overall (though the initial all-happy-all-the-time situation didn’t stick around), but whether he’s happy or not, cannabis just hasn’t been doing much for him recently. This makes it tough to want to post any updates because … what do we say? On a good day without medication, it’s great to share, but it has nothing to do with our main struggle. On a bad day where he was medicated, I don’t want to share anything. I could say a lot about Saturday’s visit, but it was a really sad visit, and the tincture did nothing.
What’s worse is that we got a high-CBD oil donated from a local follower of Alex’s story (he said to refer to him as “Genesis”). We were very hopeful at first, but after giving it to Alex on two separate occasions, he was visibly uncomfortable and even unhappy. We gave it a minimum of two and a half hours both times and the results were basically the same: Alex was worse off after the dose than before. Since those doses we have only given it once more, and a very small amount (and it still didn’t seem to have any effect).
I feel like his story has done the best we could have hoped. We opened a few eyes to the fact that cannabis needs WAY more research. Children like Alex can be helped, but it’s almost impossible when it’s such a huge guessing game and the medical laws make it so absurdly difficult to try out different strains and get a regular dose figured out. Prohibition hurts children in his situation, and while cannabis clearly isn’t an easy cure-all, it’s got the most potential for helping deal with rage and pain.
I more or less said this during my interview with Russ Belville. I feel like there’s a strain and/or method of dosing that could work wonders for Alex, but I don’t really have much faith anymore that we’ll find it.
Alex’s story doesn’t have a happy ending right now, and I just don’t want to keep saying the same things over and over again about our inability to figure out what’s right for the kid, and generally my feeling that I failed him, that I wasn’t strong enough to keep him home or smart enough to figure out how to fix the situation. People have asked why we feel the need to defend our very personal and painful decision to place Alex outside the home. Why do we feel that we have to justify it? Because we have to remind ourselves that it was for the best. Because some days we just feel like shitty parents. Because a part of me will always believe that what we did was unfathomable, cruel, unfair, and inhuman.
We’ll keep doing the best we can, and we’ll keep trying different strains and dosing and delivery methods. I might come back to post very significant changes or particularly important activism information. Who knows, maybe one day the story will have a happy ending. But for now, I just need to focus on my family and not worry about telling the story.
I just wanted to say that i came across your story and am touched by how much you love your son. I think you’re doing your best and not having him in the home has got to be tough but don’t think that you’re bad parents because of it. When people need help, refuse to admit that, and then endanger their child – now that is what I see as being a bad parent. Keep fighting and don’t lose faith because there are people all over hoping for the best along with you.
Hi, I know you do not know me, I have a son who is borderline Autistic and OCD, that is far as we can get with a diagnosis. But I understand the “rage” and the “fits” mine even in his “borderline” status, bangs his head against the wall and floor, slaps, scratches and bites himself, when he is in a rage. As a parent there is so much pain because you see your child hurting both physically and emotionally, but there is nothing that can console them. As a registered voter I voted yes to Medical Marijuana in our state. But the law is a joke, I have seen people sent to jail when the law was revoked and released when the law was put back. Now few will distribute here because of fear of retribution. And the only people who suffer for this is the people who need it. It’s horrifying. I do hope things will go better for you and you have my positive thoughts.
You have my sincere condolences. You have hit the crux of the problem currently, a Catch-22 the DEA, NIDA and DoJ are perpetuating to protect corporate interests. The needed research cannot be done, and will not be comprehensive, if dependent on official channels to supply cannabis for research. The plant is so diversified it is impossible to draw conclusions from research on limited varieties. I hope you can find someone to work with you in providing the properly prepared and balanced combination of cannabinoids that could help Alex. One suggestion, if you haven’t already tried it, would be to allow medium – high % THC oil to degrade enough to convert the bulk of the THC into CBN. Finding someone with a variety tested high in THCv might also be beneficial. Good luck to you.
Bless you and your family! Do what you must and don’t look back…thank you for sharing your story. That took Moxie! You are awesome! If I were face to face with you, I would give you the biggest, tightest hug and I would cry with you too! I wish there were words that could ease your pain, lift your spirit and let you know that you are doing great…there are no failures, only lessons to learn. Failure comes when you stop caring and trying. My love and prayers for you and your family…
You DID NOT fail your son, you are STRONGER than you know, and you are SMARTER than you give yourself credit for. I believe we choose our destiny, and you have chosen to not sit back, to not just accept it. You have chosen to fight. Warm wishes to you, your family and especially Alex.
I do thank you for letting us into your lives. You taught me the trials that families with disabilities face. Trials that I didnt even know existed until reading about Alex and your family. I’ve watched the videos of Alex and I’ve smiled with him, laughed with him and cried with him. He is a beautiful boy and I do hope that one day there will be a happy ending for him. Until then my prayers are with you and your family. Keep your family strong and vigilant in their love and help with Alex. Please do not ever feel guilty for not keeping a bunch of strangers up to date about your precious family. Your family is always first and foremost. If you feel up to posting maybe once a month or once a year if thats how you feel we will appreciate it but if you dont, then dont. Thanks you again. And from what I’ve seen you guys are the superman of parents. Most people either park their child in a room or send them off to a home and only acknowledge them on holidays or when they have to. You guys are an active part of Alex’s life. That is very important for his well being, not his address.
Thank you for sharing with us. I have experience working in the medical field with children like Alex in a group home and institutional setting. I have really had my eyes opened to the possible good of medicinal marijuana tinctures and so forth. You are very right, we need much more research into this. Hang in there! I have to say that Alex’s story ALONE is the reason I even started looking at things differently and tried to learn more. Thank you so much. I hope you do continue to share but if you don’t, please do not feel bad. You have made a great impact already. Thank you again.
I am sorry to hear you are not going to be posting updates for us anymore, I am sorry the tincture isn’t working, I am sorry the system will not allow for you to try different things, I am sorry society sucks, and I am sorry that you cannot legally do what you want for your child…however, I am not sorry that I have followed Alex’s story, I have learned so very much from you, and I love it when Alex is at home and seems happy. I just wish that somethings could be different, but I know you feel that you have done everything you can, but you must continue to go forward. I know that staying strong is hard, it is so easy for me to say, because I am not in your situation, but for the sake of Alex, you must. You are not bad parents, and that is a repeat YOU ARE NOT BAD PARENTS. You are doing everything in your power to keep him safe, and happy, but sometimes you feel as if you aren’t. please don’t ever doubt that….EVER. You are wonderful parents, but you have other children as well. I will pray for you and your family, and just keep doing what you are doing. I do believe that you will find an answer one day…..but even if there isn’t one for Alex, then your battle will not be in vain, because every day you are touching someone, you are giving someone else hope, and you are fighting to help someone else to change laws, and open new doors for other people like Alex. Please hang in there…..and above all, just keep loving Alex, and your family….and never give up…
God bless you all. Thank you for putting your story out there. I’m sorry that things don’t have a happy ending YET. Don’t worry about everyone else, concentrate on you and Alex. Concentrate on what makes your family work. Love in Christ.
My heart aches for you. Alex is a beautiful boy, and he is so lucky to have you for parents. The Lord knew what he was doing when He sent Alex to you, and He is never wrong. This journey has been painful and frustrating, no doubt its not what you expected. Yet you are carrying on with dignity and love. You are heroes in my eyes. Please don’t let those who would judge hurt your spirit. They know nothing of your struggles and have never walked in your shoes. I thank you for sharing Alex’s story up to now, and will look forward to good news when it comes. In the meantime, please know that many prayers and thoughts are with you.
As a parent of a child similar to Alex. I can completely understand how you are feeling. We recently were told to change our sons meds and doctors assumed we did it. We didn’t. His school.called me and said they love the way the new meds were working and keep it up. Hes been a different kid lately but he has been totally healthy. So we have no clue as to why he is doing better. who knows what tomorrow brings but bring it on! Stay strong. You are amazing parents to one special kid.
You ARE good parents! Even in a shitty situation you guys put him first. You don’t stop thinking, fighting, and helping your son. That right there says you two are good parents! Hope things get better for him (and his family)
Is it possible that because of the change in environment (not being at home ) would affect the results of the medication? From what I’ve read, autistic children do not like change.
You are amazing parents. You obviously love your son. Nobody can judge you for placing him outside the home. And just because you did, doesn’t mean you’re giving up. It is more than reasonable for your family to take time to heal from the hell you’ve been through trying to get help for your sweet son. Placing him doesn’t mean erasing him. You can always bring him back home anytime you want. It’s your choice. It’s your life. Nobody else is living it. You deserve some happiness, peace and joy. Your son deserves the best treatment possible. I hear your pain when you describe the ups and downs of dealing with a child’s behavioral and medical issues. And the despair and agony of finding the RIGHT treatments. And when you do, they work for awhile and then don’t. You are not alone here in your suffering, if that’s any comfort. Blog after blog tells of parents of special needs children fed up, struggling with conventional medications. I’m sorry the cannabis doesn’t always work for your son. I understand what you’re saying about how absurd the search is for medical cannabis strains. It’s an unregulated ambiguous mess leaving parents in crisis mode trying to figure out what strain works, where to get it, how much to give and what scientific studies support each specific strain and why. I agree, further research is critical in understanding the underlying mechanism of action of cannabis strains on the brain. I don’t know much about your son’s medical condition (TS), but it sounds like you are doing everything possible to help him. I wish for you and your family the next years will be filled with peace, joy and miraculous breakthroughs. Don’t lose hope, though I know there are days you do, and I understand that hopelessness. I don’t want to tell you to keep fighting because that puts you in a constant battle mode. So, I’ll just say, keep researching, keep praying (and yes I understand wondering what kind of God would put a child through such hell, but pray anyway so you have at least the hope that someone outside this crazy world is hearing your cries for help, your rage, your pain, your disappointment, and despite how you feel , is going to help). “No one whose hope is in God will ever be put to shame.” (Psalm 25:3). Please God help this family. Do not let there hard work be for nothing. Do not let their child continue to suffer these hellish ups and downs. Direct the parents to the right doctors. The RIGHT treatments. Don’t let them stay in this chaos. No more God. Please, deliver them from this nightmare. Do a miracle for their family God, hear the cries and pain and move fast to help them.
Thanks for telling the story. Sometimes you’ve got to distance yourself. Maybe if you do want to continue writing, you can start a blog about cannabis news and research? There’s plenty out there when you get a core set of sites to check. SF Gate’s good, Denver Westword’s good too. I’m sure you know after all this time. Sometime, we’ve also got to talk and I’d love to also put the story out from a father’s standpoint. In the meantime…good luck.
I have been wondering about Alex and your family and how it was going since the surgery…….sadly,I just read. But that being said…you have been wonderful,caring parents for your son……advocating for better care and treatments….researching……searching…….I can only imagine the torment,pain and anger….you feel when looking at your beautiful boy and feeling so helpless……….Only those that have walked in your weather beaten shoes….would know….XXX Stay tough….
Mara
I just came across your family’s story, and I just want to send love and good wishes. Know that at least I feel you have been incredible parents to your son, and I’m pretty tough to please.
I’m am very glad that I came across your blog. I am supporting a man with autism who is almost 40 years old and for the past year and a half I have witnessed the medical community stand with there head in the sand while his life is turned upside down. When he was younger he had self abuse behaviors, and from what I gather they just keep throughing meds at him with no regard to his physical and mental health. For many years he was on stable ground. He was even working at a job parttime and volunteering at a daycare center. He loves to be around kids, be in the community and ws enjoying his life. It wasn’t until he began having seizures a year and a half ago, and his doctors started throwing medications at him that he has reverted to self injurois behaviors once again much like Alex. I have been trying to advocate on his behalf for the use of medical marijuane as it is legal in our state, so far no doctor will agree to write him a script. I was told by one neurologist that the hospital they were affiliated with has a strict policy against medical marijuane. Unfortunately this is the current system and until this effects their lifes in a personal manner they will never be able to open their eyes. Your absolutely right that more research need to be done to help you figure out dosing and plant strains. Awhile back when I was just starting this process I remember coming across several blog sites that parents where discussing which strains where working. I also found information supporting the importance of the plants being grown organically verses herbacides. Never, Never, Never give up is my moto. Just today I read an article that might provide some information for you about a little girl and medical marijuane. http://gazette.com/medicinal-marijuana-stops-seizures-brings-hope-to-a-little-black-forest-girl/article/1502070
Perhaps they could give you some information, it appears that they have actually been able to work with the medical community to grow a new strain and get the dozing right. It contains only traces of THC and is high in CBD. Thanks again for being a beckon and shining light on the possibilities of bringing relief to those who most deserve it. Sincerely, Kimberly
Jeremy, Like you we felt one day that the mmj helped Devon and the next time it did not. Teacher and two of his doctors think his behavior is much better. It is just that the sibs have not stopped completely and we can’t get rid of the wrist restraints. On a daily basis he is much better now. We got him off gabapentin. That drug really had some side effects and withdrawal symptoms. I also think we will get better at the dosing once I have some mmj tested. I am now taking the mmj tar and mixing it with olive oil for ease in giving. It was a fight with the tar and the amount was different each day. I am so glad we found Alex’s story a long time ago as the mmj has really helped.
I love you guys 🙂 Please don’t think you’ve failed. My heart aches for what I can only imagine you are going through. It’s tough being a parent, isn’t it? I am so proud of everything that you’ve done-so many parents would’ve given up a long time ago. It’s obvious how much you love Alex, and how frustrated you are by the inaccessibility to effective health care for him. Just remember that everyone following Alex’ story is on your side 🙂 hugs
My immediate thought was, perhaps what Genesis provided was too strong/intense of a variety. Some people can have a very unpleasant “paranoid” type reaction to certain strains. Have you ever considered beer? It’s generally well-tolerated and low alcohol. Years ago doctors would prescribe it for nursing mothers (relaxation and fluid volume). I’m sorry you are feeling so discouraged. Please do check in sometimes, as we have all grown to care very much about Alex.
Hi, reading what I have so far I feel it is probably as suggested a strain issue. It’s quite common to feel more withdrawn and socially awkward having taken it, I’ve found that myself . It could be just the change in how it makes him feel he finds difficult to cope with.
I see you mix with olive oil, do you heat it at all? I believe if it isn’t heated then it should have less/no psychoactive effect/”high” , but still helps with brain function. So if you do heat it, try not heating it. Best of luck to you
You MAY NOT feel badly about your choice! You made the choice based on what was best for your family. You don’t need to defend yourself to anyone.
Hi – I was recently turned on to your story on facebook and I wanted to send some love and support. This post broke my heart for you… you are NOT bad parents, you are not weak, and you are not unintelligent. I worked at Kennedy Krieger for two years on the in-patient NBU, where I assume Alex will be going. I hope this is not offensive to you – and I’m almost positive it won’t be – but that was the most difficult and heartbreaking job I’ve ever had. Seeing the videos of Alex (on a news story) reminded me of KKI SO MUCH and I can only imagine what your family went through trying to contain his anger and hold him and keep him safe in a home not prepared for someone like him. You sending him to a safe place was the best decision you could have made, and getting him into KKI will, I hope, be amazing for him. There, he will have someone dedicated to his safety at all times, with specialized equipment and padding to be as least restrictive as possible and a team of incredibly knowledgeable people to assess his behavior and give him another way to deal with his anger (or pain, or frustration.. whatever it is that causes him to act out as such). The choices you have made thus far have clearly been in his best interest and your love for him is obvious and incredible. I repeat, you are NOT bad parents, you are not weak, and you are not unintelligent. You are amazing parents for finding him a safe place to grow. You are stronger than any of us can imagine for doing something so painful to help a person you love. You are SO smart to find him the help he needs. I know this has been terribly difficult, and I know you question yourselves daily – and the comments of some strangers can’t stop that. But I hope you know that many people support you and Alex and hold a little candle of hope in their hearts that you all can find peace in your family knowing you’ve done the right thing. I also hope for peace for Alex, who has already gone through so much. Sending courage and love.
I hope we can see another update soon. It’s been since Jan. and it’s now April 🙁