So thankful
to live in Ca
Gave my son his dose of THC while in the ER.
Everyone should have safe access to cannabis
Unfortunately surgery is now scheduled for Thursday....and until then
We wait and hope he doesn’t get worse and have to go back to ER
Friday, March 23, 2018
Friday, March 9, 2018
A welcome addition
Yesterday was a good day. Not for any particular reason except for adding an awesome team member to our team Ty. Team Ty requires the most compassionate, patient, creative team player. Someone who adds knowledge, expertise and support.
Yesterday was a good day because I met with someone who is all of this. But even more importantly, as parents, especially for me MOM, I feel like I will learn so much from this person. For most of this journey, WE are the experts. WE are constantly having to educate others on how best to support, and treat Ty. Even when he was little, we discovered he needs “this amount of pre-medication because other wise he remembers EVERYTHING. When he was in hospital for bowel clean outs pre cecostomy, and they had to use an NG tube to feed large quantities of golytely for days.....we had to consistently tell the docs to run it slow. Like super slow. Like so slow it’s just dripping. Because otherwise he blew up like a balloon, literally and would vomit and not stop vomiting for days. This is our experience with him. Despite ‘textbook’ says to do this...which we heard a lot, we know our kid. We know him so well. Where he and I literally have a communication system. He doesn’t need to say a word, we speak with our eyes. We started doing this through his so many hospital stays. When he was so little, so vulnerable, and didn’t understand much of what was happening. And even today, when he loses his words, when he is unable to communicate in a more meaningful way, when he is stressed, confused, overwhelmed, and even mad sometimes, he still communicates with me with his eyes. I know what he is telling me. I get it. He understands my eyes.
We have fought hard for him whether it be for an appropriate education, for medical needs, for therapies, everything. We have needed to educate everyone around him. He is unique. He is a more complicated patient. He is a more challenging child. He is also loving, sweet, and smart. This is the side of Ty that few know. That few understand. That few take the time to understand. Many don’t want to understand.
So to find someone who brings hope back to us, who wants to understand, who wants to support in any way they can, no matter what that looks like. Someone who we feel we can learn from. This is huge for me in particular. So many of my days, years have been spent researching. Researching to help Ty. Trying to put this complicated puzzle together piece by piece. Thirteen and a half years of reading, researching, trying to understand. Trying to make sense of it all. When you have a child who from day 1 is not well, you go into fight mode for answers to help them. This is our child. No one is going to tell us ‘sorry nothing we can do’....which we did hear ALOT.....we never gave up, we promised him through all of this, we would NEVER give up on him. NEVER! No matter what. When things got tough, and boy did they get tough, when others clearly gave up, we pushed forward. We found a new path. We explored new options.
We are happy to have a new team Ty member who wants to go down this path with us. Someone who is ready to explore options as necessary. Someone who sees the uniqueness in him and wants to celebrate that, with us. We look forward to you coming along with us on this journey.
Yesterday was a good day because I met with someone who is all of this. But even more importantly, as parents, especially for me MOM, I feel like I will learn so much from this person. For most of this journey, WE are the experts. WE are constantly having to educate others on how best to support, and treat Ty. Even when he was little, we discovered he needs “this amount of pre-medication because other wise he remembers EVERYTHING. When he was in hospital for bowel clean outs pre cecostomy, and they had to use an NG tube to feed large quantities of golytely for days.....we had to consistently tell the docs to run it slow. Like super slow. Like so slow it’s just dripping. Because otherwise he blew up like a balloon, literally and would vomit and not stop vomiting for days. This is our experience with him. Despite ‘textbook’ says to do this...which we heard a lot, we know our kid. We know him so well. Where he and I literally have a communication system. He doesn’t need to say a word, we speak with our eyes. We started doing this through his so many hospital stays. When he was so little, so vulnerable, and didn’t understand much of what was happening. And even today, when he loses his words, when he is unable to communicate in a more meaningful way, when he is stressed, confused, overwhelmed, and even mad sometimes, he still communicates with me with his eyes. I know what he is telling me. I get it. He understands my eyes.
We have fought hard for him whether it be for an appropriate education, for medical needs, for therapies, everything. We have needed to educate everyone around him. He is unique. He is a more complicated patient. He is a more challenging child. He is also loving, sweet, and smart. This is the side of Ty that few know. That few understand. That few take the time to understand. Many don’t want to understand.
So to find someone who brings hope back to us, who wants to understand, who wants to support in any way they can, no matter what that looks like. Someone who we feel we can learn from. This is huge for me in particular. So many of my days, years have been spent researching. Researching to help Ty. Trying to put this complicated puzzle together piece by piece. Thirteen and a half years of reading, researching, trying to understand. Trying to make sense of it all. When you have a child who from day 1 is not well, you go into fight mode for answers to help them. This is our child. No one is going to tell us ‘sorry nothing we can do’....which we did hear ALOT.....we never gave up, we promised him through all of this, we would NEVER give up on him. NEVER! No matter what. When things got tough, and boy did they get tough, when others clearly gave up, we pushed forward. We found a new path. We explored new options.
We are happy to have a new team Ty member who wants to go down this path with us. Someone who is ready to explore options as necessary. Someone who sees the uniqueness in him and wants to celebrate that, with us. We look forward to you coming along with us on this journey.
Sunday, March 4, 2018
This Autism Life and Siblings
I’m back!
Over a year hiatus, lots of ups and downs. Lots of good moments and lots of difficult moments. Lots of emotions. And all tied up with the worst experience of my life just one year ago; losing my mom unexpectedly. Her passing has put a hole in my heart and soul that I didn’t even know was possible. It’s been raw and it’s been easier many days to just tuck those really sad and empty feelings way deep down and try to forget about them. This blog is about real experiences. My emotions and life with special needs. It’s still hard. Not a day goes by without my thoughts and memories of my mom. But I’m trying to get back to this.
The blog, my flow of thoughts of what our special needs autism life is like. The real everyday. Not just good moments, but the really bad moments too. Our one hundred percent truthful unfiltered moments. And more importantly our new journey into medicinal cannabis and how much it has changed this autism life. How much it has helped our son. So many incredible firsts. So much, oh so much less aggressive behaviors, physical aggression, throwing and destructive behaviors, self harming and eloping behaviors. So many things that defined our everyday existence with our son. And so this first post in over a year is focusing on another new first!! Not just for our son, but his sibling, little sis. Because life with Autism effects the entire family. It effects each member in different ways but the real reality can be heart breaking most of the time when you see no matter what we do, the siblings, our other amazing kids are effected. How can they not be. So here is a good post, focusing on a happy day for a sibling. A happy day for our boy. And a happy day for me to see and to realize we are moving to new experiences and new first moments that I didn’t think possible just a few years ago.
.....................I know for most this is just an ordinary experience.
For Sarah she had a friend from school over for the very FIRST time....It is always too difficult for Ty (and therefore us). But today, he did great (ignored them😅) and Sarah had so much fun. They baked triple chocolate muffins by themselves 💜😊. And yes this is all because of medical cannabis!
Stay tuned for more on how medical cannabis has changed our families Autism life forever. How medical cannabis has improved our sons quality of life in so many ways.
Over a year hiatus, lots of ups and downs. Lots of good moments and lots of difficult moments. Lots of emotions. And all tied up with the worst experience of my life just one year ago; losing my mom unexpectedly. Her passing has put a hole in my heart and soul that I didn’t even know was possible. It’s been raw and it’s been easier many days to just tuck those really sad and empty feelings way deep down and try to forget about them. This blog is about real experiences. My emotions and life with special needs. It’s still hard. Not a day goes by without my thoughts and memories of my mom. But I’m trying to get back to this.
The blog, my flow of thoughts of what our special needs autism life is like. The real everyday. Not just good moments, but the really bad moments too. Our one hundred percent truthful unfiltered moments. And more importantly our new journey into medicinal cannabis and how much it has changed this autism life. How much it has helped our son. So many incredible firsts. So much, oh so much less aggressive behaviors, physical aggression, throwing and destructive behaviors, self harming and eloping behaviors. So many things that defined our everyday existence with our son. And so this first post in over a year is focusing on another new first!! Not just for our son, but his sibling, little sis. Because life with Autism effects the entire family. It effects each member in different ways but the real reality can be heart breaking most of the time when you see no matter what we do, the siblings, our other amazing kids are effected. How can they not be. So here is a good post, focusing on a happy day for a sibling. A happy day for our boy. And a happy day for me to see and to realize we are moving to new experiences and new first moments that I didn’t think possible just a few years ago.
.....................I know for most this is just an ordinary experience.
For Sarah she had a friend from school over for the very FIRST time....It is always too difficult for Ty (and therefore us). But today, he did great (ignored them😅) and Sarah had so much fun. They baked triple chocolate muffins by themselves 💜😊. And yes this is all because of medical cannabis!
Stay tuned for more on how medical cannabis has changed our families Autism life forever. How medical cannabis has improved our sons quality of life in so many ways.
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