If anyone has any doubts of why so many families, like mine, are seeking medical cannabis for treatment for their children- whether it be for Autism, Epilepsy, cancer, and so many other well known disorders that impact these children on a 24/7 , every single minute of every single day- just be thankful you are maybe a parent that doesn't even need to think about medical treatments for your child.
For the rest of us, we are just trying to help our children, and usually when everything else "by traditional medicine" has failed, leaving many families, including ours, hopeless, with no options. And after seeing so many incredible changes happening with our son since being on medical cannabis, including the THC (the known component for "getting high" which does no such thing for many of these kids, especially one's on the spectrum). Remember, we don't fully understand so many of these rare, but common disorders of the brain, and we need to get rid of the ideas and social stigma that marijuana is bad.
It's medicine. It's helping my child. It's the only thing that has helped our child. Everyone deserve to be able to use medicinal marijuana to help improve their childs quality of life, improve their medical conditions, help ease any symptoms they may be experiencing due to their medical condition.
I will never give up on my son- and I hope our story can help other families who struggle.
Our kids deserve it!
Monday, May 30, 2016
Sunday, May 29, 2016
Yippee!!!!
HE TRANSITIONED WITH OUT BEHAVIORS!!!
END OF STORY- NOTHING ELSE MATTERS!
He transitioned us home from little one's birthday party
WITHOUT ANY BEHAVIORS!!!! Yippee!!!!
END OF STORY- NOTHING ELSE MATTERS!
He transitioned us home from little one's birthday party
WITHOUT ANY BEHAVIORS!!!! Yippee!!!!
Friday, May 27, 2016
What he said to me!
We ventured out yesterday!
We visited the ranch where little one will be having a birthday party this weekend.
Along the short drive outside our town, it's open space, view of the coastal mountains, and colors everywhere.
And you know what he said to me?
It's so beautiful, so much space, and "it's probably the only place left in the world where you can see for miles and miles!"
Wow!
Then he went on to tell me he wanted to keep driving to see what was up the mountains. (Unfortunately we didn't have time-but I liked his idea!)
I"m pretty confident that he is using "scripts", conversations he's heard before either from us or TV (usually); but the fact that he can communicate an expression of beauty when he see's the countryside- well, that's pretty amazing!
Now I will look forward to taking that drive with him someday! And until then, just celebrate the moment we had and the smile it brought to his face!
A year ago we were already struggling with some pretty severe behaviors again due to his hospitalization. It was a slippery slope of him falling into a darkness. A time we felt like would never end.
It was the turning point in how we viewed our situation. And although we reached out for help from every angle, we received none. Which led us to take more control over how we were going to help our son. And led us to Medical Marijuana.
It is unfortunate it took such a dark time for us to start this new path with cannabis. Maybe, just maybe our son would not have had to suffer for so many years, had we tried it years before. Because it is the ONLY thing that has improved our son's quality of life. That is all the evidence we need to see that it is working.
I'm glad we took that path for the sake of our son. It does almost feel like a bit of a miracle- simply because at some point we thought there was nothing that could be effective! I know we still don't even know everything that is going on with him- and we've most certainly passed the "window" to more easily explore, run further tests, see the right doctors. But at least in the mean time, he is no longer "stuck"! He is thriving, smiling, happy, engaging, and safe!
I look forward to more drives with him and hearing him talk about "the beauties of the world".
We visited the ranch where little one will be having a birthday party this weekend.
Along the short drive outside our town, it's open space, view of the coastal mountains, and colors everywhere.
And you know what he said to me?
It's so beautiful, so much space, and "it's probably the only place left in the world where you can see for miles and miles!"
Wow!
Then he went on to tell me he wanted to keep driving to see what was up the mountains. (Unfortunately we didn't have time-but I liked his idea!)
I"m pretty confident that he is using "scripts", conversations he's heard before either from us or TV (usually); but the fact that he can communicate an expression of beauty when he see's the countryside- well, that's pretty amazing!
Now I will look forward to taking that drive with him someday! And until then, just celebrate the moment we had and the smile it brought to his face!
A year ago we were already struggling with some pretty severe behaviors again due to his hospitalization. It was a slippery slope of him falling into a darkness. A time we felt like would never end.
It was the turning point in how we viewed our situation. And although we reached out for help from every angle, we received none. Which led us to take more control over how we were going to help our son. And led us to Medical Marijuana.
It is unfortunate it took such a dark time for us to start this new path with cannabis. Maybe, just maybe our son would not have had to suffer for so many years, had we tried it years before. Because it is the ONLY thing that has improved our son's quality of life. That is all the evidence we need to see that it is working.
I'm glad we took that path for the sake of our son. It does almost feel like a bit of a miracle- simply because at some point we thought there was nothing that could be effective! I know we still don't even know everything that is going on with him- and we've most certainly passed the "window" to more easily explore, run further tests, see the right doctors. But at least in the mean time, he is no longer "stuck"! He is thriving, smiling, happy, engaging, and safe!
I look forward to more drives with him and hearing him talk about "the beauties of the world".
Thursday, May 26, 2016
Warning- you may become exhausted from this post!
A lot of people ask about how Cannabis is helping our son! I am on several FB groups, and thank goodness social media like this exists for parents like us to be able to share and connect with other parents. This is definitely a world in which no one has answers. Most don't understand, and certainly is very isolating. Especially when we cannot really leave our house.
Even for the simplest of errands.
And when I do, it is a carefully structured, planned with details, event as if were were taking a European vacation.
But we aren't.
We are simply picking up little sister. Maybe dropping off at the drop box over due library books because the last time I "attempted" to drop them off, he wasn't having it.
I usually hear "what's in it for me?" because not uncommon for kids with Autism, he doesn't have the ability to be self motivated, or motivated to just comply. His anxiety becomes so great and his ability to think calmly and rationally decreases greatly, which then many times has created situations that put himself or others in danger. Yes, he's attempted to jump out of a moving car more than once. And yes, that sucks!
So, when we leave our house. It cannot be our entire family first of all. It's just too much for him and instantly results in issues.
I give him plenty of "transition signals", starting usually over 20 minutes before our Estimated time of leaving. I continually give him warnings so that he is prepared to change activities, no matter what he is doing. I give him warnings of what we are doing- picking up sister. I get Gretchen leashed up and ready helping to give him another visual cue of what time it is. I remind him at about the 10 minute mark to please use the bathroom. I ALWAYS have his MP3 player, a particular pair of headphones, and his DS in my purse for him to use as helpful transition items. If I do not have these items, well- let's just say it becomes a pretty big issue and usually results in us being late to pick up little one.
It is a critical part in this process- it may seem simple but you have no idea how sometimes difficult and chaotic the moments leading up to us leaving the house becomes and my head is already spinning trying to remember everything- and yes, as a mom I have been known to screw up! That day usually sucks- because this is what Autism is.
So, our routine proceeds. And on a simple, calm day I get Gretchen in the car, and despite all my signals and warnings that we were leaving and to please get in the car, he may still struggle to transition from his activity (usually Lego's), has still has not used the bathroom, and will typically decide to find some random transition toys that he thought of at the last minute that to him is absolutely necessary to bring for this 1/4 mile drive to pick up sister- even though we will be home in less than 10 minutes.
So as Gretchen and I sit in the car, simply waiting- and time is ticking away, and he still is not in the car, I simply yell ("gently" of course because I've learned if he feels pressured for time, it only makes things worse) for him to get in the car. But he decides to get these muddy dinosaurs from the backyard, which means of course he needs to clean them off. Which he proceeds to do (which I'm also thinking, wow he's doing that all by himself- yay!) because a typical scenario used to be no way would he touch the muddy toys laying in the backyard and would need me to rinse off all the muddy toys.
So him doing it himself is a victory. But it's sometimes hard to remember that as I'm trying desperately to get him the car so that we can go pick up little sister. So a typical day would be he would finally get all the toys cleaned, and go to the bathroom, he doesn't usually bother with shoes (why would he, right!) insert lol-
So he brings all these dinosaur toys into the car, and then proceeds to put them into my purse and then put on the headphones and listen to his mp3 player. Not even touching the dinosaurs again during this entire 1/4 mile trip to pick up sister. sigh...... it was clearly just a way for him to organize himself and prepare himself for this big outing of driving 1/4 mile in the car with just me and Gretchen at his feet, to pick up little sister from school and drive back home.
BTW there is no talking allowed in the car (it really really bothers him, but okay- at least he is in the car because again, this is progress. This entire process is progress. This is a big deal in my world). And as I pull up into the driveway, he simply jumps out of the car, will sometimes comply when I remind him to get Gretchen, depends on the day- and quickly wants in the house. This event takes everything out of him.
This event of leaving the home, drains his energy to the point that he needs nothing but quiet after. This event that pretty much everyone else takes for granted is such a huge fatiguing overwhelming experience for him.
But because of Medical Cannabis, it is an experience for both he and I that we are being successful at for the first time consistently this school year. This simple act of getting into the car, driving 1/4 mile, having little one come to front of school (because we actually don't get out of the car), and drive 1/4 mile back home- the transition first getting into the car, then the transition coming home is progress. He is being safe in the car. He is transitioning.
And if you feel exhausted reading this post about all that HAS to take place prior to us leaving to pick up little one, imagine having to do this routine, with no forgiveness if I forget something or mis read his body language, or simply make him "feel rushed" even a little bit- well, it makes for a pretty rough afternoon in our house.
But it's all worth it, because this is about progress and seeing improvement. Him doing things he's never done before and being successful at it. And leaving our home is one of the biggest challenges he has always faced- and is never just "leaving the house" to him- so many things get in the way of him being able to successfully do this.
But having a dog be able to come with us every time, being on cannabis allowing him to be more calm and present and less rigid and open to new experiences, as simple as it seems for others, and him willing to allow me to help him during these transition points that prior caused him great pain, and he and I working together to help him be more comfortable doing this activity. It's a big deal!
It's just the beginning I feel, and is exactly why we will never give up!
Even for the simplest of errands.
And when I do, it is a carefully structured, planned with details, event as if were were taking a European vacation.
But we aren't.
We are simply picking up little sister. Maybe dropping off at the drop box over due library books because the last time I "attempted" to drop them off, he wasn't having it.
I usually hear "what's in it for me?" because not uncommon for kids with Autism, he doesn't have the ability to be self motivated, or motivated to just comply. His anxiety becomes so great and his ability to think calmly and rationally decreases greatly, which then many times has created situations that put himself or others in danger. Yes, he's attempted to jump out of a moving car more than once. And yes, that sucks!
So, when we leave our house. It cannot be our entire family first of all. It's just too much for him and instantly results in issues.
I give him plenty of "transition signals", starting usually over 20 minutes before our Estimated time of leaving. I continually give him warnings so that he is prepared to change activities, no matter what he is doing. I give him warnings of what we are doing- picking up sister. I get Gretchen leashed up and ready helping to give him another visual cue of what time it is. I remind him at about the 10 minute mark to please use the bathroom. I ALWAYS have his MP3 player, a particular pair of headphones, and his DS in my purse for him to use as helpful transition items. If I do not have these items, well- let's just say it becomes a pretty big issue and usually results in us being late to pick up little one.
It is a critical part in this process- it may seem simple but you have no idea how sometimes difficult and chaotic the moments leading up to us leaving the house becomes and my head is already spinning trying to remember everything- and yes, as a mom I have been known to screw up! That day usually sucks- because this is what Autism is.
So, our routine proceeds. And on a simple, calm day I get Gretchen in the car, and despite all my signals and warnings that we were leaving and to please get in the car, he may still struggle to transition from his activity (usually Lego's), has still has not used the bathroom, and will typically decide to find some random transition toys that he thought of at the last minute that to him is absolutely necessary to bring for this 1/4 mile drive to pick up sister- even though we will be home in less than 10 minutes.
So as Gretchen and I sit in the car, simply waiting- and time is ticking away, and he still is not in the car, I simply yell ("gently" of course because I've learned if he feels pressured for time, it only makes things worse) for him to get in the car. But he decides to get these muddy dinosaurs from the backyard, which means of course he needs to clean them off. Which he proceeds to do (which I'm also thinking, wow he's doing that all by himself- yay!) because a typical scenario used to be no way would he touch the muddy toys laying in the backyard and would need me to rinse off all the muddy toys.
So him doing it himself is a victory. But it's sometimes hard to remember that as I'm trying desperately to get him the car so that we can go pick up little sister. So a typical day would be he would finally get all the toys cleaned, and go to the bathroom, he doesn't usually bother with shoes (why would he, right!) insert lol-
So he brings all these dinosaur toys into the car, and then proceeds to put them into my purse and then put on the headphones and listen to his mp3 player. Not even touching the dinosaurs again during this entire 1/4 mile trip to pick up sister. sigh...... it was clearly just a way for him to organize himself and prepare himself for this big outing of driving 1/4 mile in the car with just me and Gretchen at his feet, to pick up little sister from school and drive back home.
BTW there is no talking allowed in the car (it really really bothers him, but okay- at least he is in the car because again, this is progress. This entire process is progress. This is a big deal in my world). And as I pull up into the driveway, he simply jumps out of the car, will sometimes comply when I remind him to get Gretchen, depends on the day- and quickly wants in the house. This event takes everything out of him.
This event of leaving the home, drains his energy to the point that he needs nothing but quiet after. This event that pretty much everyone else takes for granted is such a huge fatiguing overwhelming experience for him.
But because of Medical Cannabis, it is an experience for both he and I that we are being successful at for the first time consistently this school year. This simple act of getting into the car, driving 1/4 mile, having little one come to front of school (because we actually don't get out of the car), and drive 1/4 mile back home- the transition first getting into the car, then the transition coming home is progress. He is being safe in the car. He is transitioning.
And if you feel exhausted reading this post about all that HAS to take place prior to us leaving to pick up little one, imagine having to do this routine, with no forgiveness if I forget something or mis read his body language, or simply make him "feel rushed" even a little bit- well, it makes for a pretty rough afternoon in our house.
But having a dog be able to come with us every time, being on cannabis allowing him to be more calm and present and less rigid and open to new experiences, as simple as it seems for others, and him willing to allow me to help him during these transition points that prior caused him great pain, and he and I working together to help him be more comfortable doing this activity. It's a big deal!
It's just the beginning I feel, and is exactly why we will never give up!
Wednesday, May 25, 2016
AMAZING!
Little one got a new game from Aunt and Uncle for her birthday! And feels like a miracle has just happened!
Ty and her are playing, TOGETHER- and being kind towards each other (easy for little one- but Ty struggles greatly interacting and playing games!!)
This is amazing... amazing amazing! I am just listening to them and smiling so hard on the inside!
This has not occurred for so long it's hard to remember... maybe well over a year ago, maybe 2 quite honestly! Games have not ever been good for him- and especially interacting with little one at the same time! My heart is warmed by this today! Amazing!
It feels like it's been so long to see such consistent progress from him... thank you medical cannabis! It is helping him in ways we never thought possible!
Ty and her are playing, TOGETHER- and being kind towards each other (easy for little one- but Ty struggles greatly interacting and playing games!!)
This is amazing... amazing amazing! I am just listening to them and smiling so hard on the inside!
This has not occurred for so long it's hard to remember... maybe well over a year ago, maybe 2 quite honestly! Games have not ever been good for him- and especially interacting with little one at the same time! My heart is warmed by this today! Amazing!
It feels like it's been so long to see such consistent progress from him... thank you medical cannabis! It is helping him in ways we never thought possible!
Tuesday, May 24, 2016
Well, he is consistent with this 1 thing...
One thing we let Ty do that we most certainly WOULD NOT allow the girls to do: Eat only pizza!
This is a homemade pizza we make twice a day- that's what he eats. He's consistent.
First pizza is when he first wakes up, regardless of what time it is- could be 7:00am or 12:00pm! Pizza is the first meal of the day for him!
Then when he's "hungry" he'll request another pizza. Sometimes, but rarely, I can convince him of something else unless it's dinner time. He typically does not eat what the rest of the family eats. He eats- pizza!
It's a pizza crust, pizza sauce, DF cheese, and slices of pepperoni.
I have no idea how he eats this so often- never gets tired of it- and enjoys it so much! Cut just a certain way, presented on the plate in a certain way, with 8 paper towels and a Giants cup of water filled just to the top of the SF symbol. Yep, want to come on over and take my job! It's a tricky one for sure- especially if you "forget or mess something up".... this is the life of Autism and friends.
But no way would I allow the girls to live off pizza. These are where things are just different- no matter what, of course it's not "fair", and all the other complaints I've heard over the years- but it is how it is! Because it's how it has to be for now.
So, just delivered the first pizza of the day!
This is a homemade pizza we make twice a day- that's what he eats. He's consistent.
First pizza is when he first wakes up, regardless of what time it is- could be 7:00am or 12:00pm! Pizza is the first meal of the day for him!
Then when he's "hungry" he'll request another pizza. Sometimes, but rarely, I can convince him of something else unless it's dinner time. He typically does not eat what the rest of the family eats. He eats- pizza!
It's a pizza crust, pizza sauce, DF cheese, and slices of pepperoni.
I have no idea how he eats this so often- never gets tired of it- and enjoys it so much! Cut just a certain way, presented on the plate in a certain way, with 8 paper towels and a Giants cup of water filled just to the top of the SF symbol. Yep, want to come on over and take my job! It's a tricky one for sure- especially if you "forget or mess something up".... this is the life of Autism and friends.
But no way would I allow the girls to live off pizza. These are where things are just different- no matter what, of course it's not "fair", and all the other complaints I've heard over the years- but it is how it is! Because it's how it has to be for now.
So, just delivered the first pizza of the day!
Friday, May 20, 2016
Lawyer to Lawyer
I'm nervous! Thankfully we have legal representation, but it still makes me nervous.
We are having "issues" with our current school program- won't go into details now- but yes, we have a lawyer, they have a lawyer!
As if we just don't have enough on our plate with taking care of Ty 24/7!
But it was time that we got some legal help when it comes to schools. It's been so long, everyone else wanting to "pass the buck"- and in the meantime my son is growing up!
So fingers crossed things go in favor of supporting Ty and his needs when it comes to a fair and appropriate education that he deserves!
But I'm still nervous!
We are having "issues" with our current school program- won't go into details now- but yes, we have a lawyer, they have a lawyer!
As if we just don't have enough on our plate with taking care of Ty 24/7!
But it was time that we got some legal help when it comes to schools. It's been so long, everyone else wanting to "pass the buck"- and in the meantime my son is growing up!
So fingers crossed things go in favor of supporting Ty and his needs when it comes to a fair and appropriate education that he deserves!
But I'm still nervous!
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