I had my first "high school" meeting for my daughter. A very exciting thing- as it was an audition class that she got into. Couldn't be prouder-
And as I sat there, with all these other parents of students who also made it into the class- they need lots of parent volunteers. LOTS!
Apparently they will be holding monthly meetings for parents to discuss all the specialty events outside of school.
And all this meeting did was turn my amazing proud and exciting moment for my daughter, into worries, sadness, and almost anger.
I can't commit to monthly meetings for just this 1 class! I can't commit to being on this committee of that committee to support all the different events that will be not during school times.
It was just another huge reminder, that even on a good day I am having with my boy- this reality of ours still sucks. I am trying so hard to give our girls all that they deserve and have earned and opportunities that bring joy and smiles to them. But why does it always have to come back to this type of stress and reminder of what we deal with every minute of every single day.
It's a class for high school. I shouldn't feel like this if I can't "help out"! And I"m sure they would understand- once again our family can't pull their weight in whatever event, situation, activity where parents are required to help out. What isn't understood that even on our best of days- it's beyond exhausting, beyond draining, beyond hard, and yet I took moments and still found joy and smiled. I saw my boy smile while playing with the dog- a good moment. I saw him handle a moment of frustration without lashing out- a good moment. He showed flexibility when it came time to change an activity- a good moment.
And then off to a meeting- where I feel so down and disappointed in myself because I cannot even comprehend committing to volunteering and helping out as much as they need/require! And I see how excited my daughter is, but I know she knows much of what is being asked of us is impossible. She gets it now that she's older. But it doesn't mean it doesn't disappoint her and make her feel sad too. I hate that!
UGH...... Autism sucks- because it's not just Autism- it's this entire world it's created that makes our boy struggle so much he can't function! His medical issues are constant. His challenges are greater than his abilities right now. And even when things are progressing in a good way- it's this type of meeting that almost feels like a big slap in the face wake up call of what our reality really looks like!
Because when I got home from this meeting, which went way past the time it originally said it would be over (which of course only puts in my mind- oh shit.... a change in my expected arrival for Ty- what will this do to him???) And when I finally do arrive home- later than our anticipated time,
yep- transitions suck too! This is what I come home to. A world that is ruled by Autism and it's hold it has on our son. And even on a good day, life happens, things need to happen, and there is a pretty consistent result in these events of life! And it is exhausting! This is what sucks.
Thursday, May 19, 2016
Monday, May 16, 2016
when your bar is low
We are continuing this path of treating our son with medical cannabis, and we are turning a new corner once again.
Just ordered a new cannabis oil that I definitely feel based on my research could be even more helpful to him.
Ordered Haleigh's Hope oil.... and based on my research may be a better choice for our boy and his issues.
I can't believe how far he has come since starting MMJ, but know there is a long way to go.
When you have a bar set pretty low, in fact, lower than most people can even imagine- in our world, we can only go up from here!
What is hard for people to understand is how low functioning he really is. The good news is I haven't been hit (really hit) in weeks, he hasn't climbed out any windows lately and hasn't gone up on the back deck throwing rocks at the house. All things that are pretty typical when he's struggling greater than usual and having "a behavior".
But leaving our house is still monumental, and you can see the level of stress it causes him- his level of agitation sky rockets. We are still "recovering" from his Mother's Day hoopla and sister's birthday. All regular events for most- but in our world cause chaos and behaviors due to many factors- change in routine, increased anxiety, overwhelming feelings that are difficult for him to process, stimulating environments, I could go on-
Seeing the world through his lens has helped us realize how difficult the world is for him. But as I always said, we'll never give up. The bar may be low, but I have hope of raising it and continuing to see the progress he is experiencing! And trying a new oil is going to help us- I know it!
Just ordered a new cannabis oil that I definitely feel based on my research could be even more helpful to him.
Ordered Haleigh's Hope oil.... and based on my research may be a better choice for our boy and his issues.
I can't believe how far he has come since starting MMJ, but know there is a long way to go.
When you have a bar set pretty low, in fact, lower than most people can even imagine- in our world, we can only go up from here!
What is hard for people to understand is how low functioning he really is. The good news is I haven't been hit (really hit) in weeks, he hasn't climbed out any windows lately and hasn't gone up on the back deck throwing rocks at the house. All things that are pretty typical when he's struggling greater than usual and having "a behavior".
But leaving our house is still monumental, and you can see the level of stress it causes him- his level of agitation sky rockets. We are still "recovering" from his Mother's Day hoopla and sister's birthday. All regular events for most- but in our world cause chaos and behaviors due to many factors- change in routine, increased anxiety, overwhelming feelings that are difficult for him to process, stimulating environments, I could go on-
Seeing the world through his lens has helped us realize how difficult the world is for him. But as I always said, we'll never give up. The bar may be low, but I have hope of raising it and continuing to see the progress he is experiencing! And trying a new oil is going to help us- I know it!
Friday, May 13, 2016
Interesting - MMJ and GI tract information
"Chrohn’s Disease, Irritable Bowel Syndrome (IBS), ulcers, constipation, diarrhea, nausea, anorexia, bulimia, acid reflux, and appetite loss are some of the diseases and conditions that medical marijuana patients have treated using medical marijuana.
Studies indicate that cannabinoids in marijuana bind with cannabinoid receptors in the digestive tract, especially the small and large intestine, causing muscle relaxation, reduction of inflammation, analgesia, increased nerve-muscle coordination, anti-emesis, and relief of spasms such as those that cause nausea.
Cannabis is also an adaptogenic immune system modulator that can increase or decrease immune systems function in ways that almost always contribute to healthier outcomes.
Cannabis is unique among medicines because it has a comprehensive range of actions that can alleviate several symptoms by altering how the body and brain communicate, and how the self perceives its internal organs and systems."-
http://www.kindgreenbuds.com/medical-marijuana/marijuana-and-treatment-of-digestive-disorders/
Studies indicate that cannabinoids in marijuana bind with cannabinoid receptors in the digestive tract, especially the small and large intestine, causing muscle relaxation, reduction of inflammation, analgesia, increased nerve-muscle coordination, anti-emesis, and relief of spasms such as those that cause nausea.
Cannabis is also an adaptogenic immune system modulator that can increase or decrease immune systems function in ways that almost always contribute to healthier outcomes.
Cannabis is unique among medicines because it has a comprehensive range of actions that can alleviate several symptoms by altering how the body and brain communicate, and how the self perceives its internal organs and systems."-
http://www.kindgreenbuds.com/medical-marijuana/marijuana-and-treatment-of-digestive-disorders/
No matter what!
I am just feeling amazed that medical marijuana has helped my son so much.
Are his bowels actually healed? He has a hole in his colon because his bowels were so dysfunctional from birth- and now since being on micro doses of medical marijuana and absolutely has refused for 5 weeks now of doing bowel irrigation, but remains out of the hospital and it's been 1 year since his last hospital visit.
Seriously- this is so huge! There is definitely a lot of evidence and research supporting the use of medical marijuana (MMJ) and bowel disorders.
But regardless, we see what it is doing for our son. It's literally like a miracle has happened! And this is just one part of his very complicated puzzle. But it's a start.
I guess this is why we don't ever give up. We don't let others railroad us from what we know about our son. We continue to fight and advocate for him at every turn in this journey. No matter what.
Are his bowels actually healed? He has a hole in his colon because his bowels were so dysfunctional from birth- and now since being on micro doses of medical marijuana and absolutely has refused for 5 weeks now of doing bowel irrigation, but remains out of the hospital and it's been 1 year since his last hospital visit.
Seriously- this is so huge! There is definitely a lot of evidence and research supporting the use of medical marijuana (MMJ) and bowel disorders.
But regardless, we see what it is doing for our son. It's literally like a miracle has happened! And this is just one part of his very complicated puzzle. But it's a start.
I guess this is why we don't ever give up. We don't let others railroad us from what we know about our son. We continue to fight and advocate for him at every turn in this journey. No matter what.
Thursday, May 12, 2016
A successful birthday day!
My youngest turned 9! My baby, my sweet little one. Can't believe she's 9! Wasn't Ty just 9- well i guess 3 years ago! Wow! Where does the time go?
A really happy thing - as most "special" type days are filled with more tears and anguish then smiles and laughter...... but this birthday was definitely different.
Ty was different. It might not have started off so great- I guess he decided his water "wasn't cold enough" so in Ty style dumps it on the floor and throws the cup. Eh, could have been worse! But he definitely recovered from this. And with it being little sisters birthday- I had the opportunity to go to her classroom, bring a birthday treat for the class and participate in a special "birthday circle" to celebrate her. At first, Ty simply stated he wasn't going and so that's how it was.
But with a little more time (allowing him to process, and for me to think of just the right incentive), he agreed. In n Out! 2 plain meat patty's, french fries, 3 sides of pickles, 5 packs of spread, and a cup of water.
Okay- that is worth it for me to be able to participate in little one's class birthday celebration.
It all worked out. He was definitely a little more on edge today than he's been. But he is also "recovering" from Mother's Day festivities. It's just been a different kind of week with him. Not horrible, but he's been more off and explosive than he's been lately.
And our typical "birthday" kind of days usually bring on well ALOT for Ty. But he is handling the day pretty well. We all enjoyed a really nice dinner of Sarah's choice. Fesajune (A Persian Chicken with Pomegranate sauce) and in his usual fashion ate in other room in front of TV. That's best! But he did participate in watching her open gifts and singing happy birthday and having cake with us. That was pretty cool to see! I know it meant a lot to Sarah. It made the day even a little more special for me too!
A successful birthday day for sure. We have medical cannabis to thank!
A really happy thing - as most "special" type days are filled with more tears and anguish then smiles and laughter...... but this birthday was definitely different.
Ty was different. It might not have started off so great- I guess he decided his water "wasn't cold enough" so in Ty style dumps it on the floor and throws the cup. Eh, could have been worse! But he definitely recovered from this. And with it being little sisters birthday- I had the opportunity to go to her classroom, bring a birthday treat for the class and participate in a special "birthday circle" to celebrate her. At first, Ty simply stated he wasn't going and so that's how it was.
But with a little more time (allowing him to process, and for me to think of just the right incentive), he agreed. In n Out! 2 plain meat patty's, french fries, 3 sides of pickles, 5 packs of spread, and a cup of water.
Okay- that is worth it for me to be able to participate in little one's class birthday celebration.
It all worked out. He was definitely a little more on edge today than he's been. But he is also "recovering" from Mother's Day festivities. It's just been a different kind of week with him. Not horrible, but he's been more off and explosive than he's been lately.
And our typical "birthday" kind of days usually bring on well ALOT for Ty. But he is handling the day pretty well. We all enjoyed a really nice dinner of Sarah's choice. Fesajune (A Persian Chicken with Pomegranate sauce) and in his usual fashion ate in other room in front of TV. That's best! But he did participate in watching her open gifts and singing happy birthday and having cake with us. That was pretty cool to see! I know it meant a lot to Sarah. It made the day even a little more special for me too!
A successful birthday day for sure. We have medical cannabis to thank!
Monday, May 9, 2016
Mother's Day sadness
Why do I dislike Mother's Day so much? It definitely feels like a slap in the face at times. A reminder of how different our world is- which under all other circumstances I've accepted, I take joy and pride in how we embrace "our world" and make the most of every single little thing and moment given to us. And I feel pretty damn proud of it.
So why after Mother's Day, and on Mother's day do I just feel so absolutely worthless?
As if the societal standard of a "good mom" is what I actually measure myself by. Which the other 364 days out of the year, I don't. So why on this 1 day out of the year, I fall into this trap of "happy go lucky, all things awesome, yay life is grand all the time" crap? My dear friend suggested I avoid FB. She's so right. And again, I know better. I know that those are just snap shots of time and no one has a "perfect life". But why do I let myself go down this road of even allowing myself to feel sad this day- it's just a day, just like any other day.
But then I realized. When little one and I were at the grocery store, doing the shopping for the week, everyone asks you- "how's your Mother's Day going?" "Feeling spoiled today?, "did you do anything special for your Mother's day today?", and on and on. And I guess this is where it's hard. It's a different response than my usual basic "how is your day?" kind of questions. Those get my simple "oh fine" response. No need to elaborate, no need to tell others about how my day is really going. I know no one wants to actually hear how my day is. It's just polite small talk. But on Mother's day- it's a bit more specific.
"Oh, did your kids make you breakfast in bed?"; "Having a special meal cooked for you?"; "Get taken out somewhere special?"
All reminders that- this doesn't happen, never will happen, and my reality is not one others like to hear about.
It's a reality of an extreme Autism family where leaving our home environment is just TOO MUCH for my son, and we never leave as a "family". It just doesn't happen.
I didn't even get to eat dinner last night because upon returning from an event the boys went to, my little boy came home, was upset over pretty much everything he noticed,(this is the fall out of an overwhelming, over stimulating environment and he began behaviors that quickly escalated to him swinging items and threatening - his world was crashing down around him now that he was home and he couldn't stop it.
So the end of my day was spent in tears- it was just the reminder that even on a calm day, how in the blink of an eye it can just crumble to pieces. Reality is I'm not sad for me. I'm sad that I am so helpless in these moments to help my son. I'm sad that my girls are constantly affected by the behaviors and miss out on a lot because of what our reality is. And for some reason, Mother's Day always just makes me feel sad.
So why after Mother's Day, and on Mother's day do I just feel so absolutely worthless?
As if the societal standard of a "good mom" is what I actually measure myself by. Which the other 364 days out of the year, I don't. So why on this 1 day out of the year, I fall into this trap of "happy go lucky, all things awesome, yay life is grand all the time" crap? My dear friend suggested I avoid FB. She's so right. And again, I know better. I know that those are just snap shots of time and no one has a "perfect life". But why do I let myself go down this road of even allowing myself to feel sad this day- it's just a day, just like any other day.
But then I realized. When little one and I were at the grocery store, doing the shopping for the week, everyone asks you- "how's your Mother's Day going?" "Feeling spoiled today?, "did you do anything special for your Mother's day today?", and on and on. And I guess this is where it's hard. It's a different response than my usual basic "how is your day?" kind of questions. Those get my simple "oh fine" response. No need to elaborate, no need to tell others about how my day is really going. I know no one wants to actually hear how my day is. It's just polite small talk. But on Mother's day- it's a bit more specific.
"Oh, did your kids make you breakfast in bed?"; "Having a special meal cooked for you?"; "Get taken out somewhere special?"
All reminders that- this doesn't happen, never will happen, and my reality is not one others like to hear about.
It's a reality of an extreme Autism family where leaving our home environment is just TOO MUCH for my son, and we never leave as a "family". It just doesn't happen.
I didn't even get to eat dinner last night because upon returning from an event the boys went to, my little boy came home, was upset over pretty much everything he noticed,(this is the fall out of an overwhelming, over stimulating environment and he began behaviors that quickly escalated to him swinging items and threatening - his world was crashing down around him now that he was home and he couldn't stop it.
So the end of my day was spent in tears- it was just the reminder that even on a calm day, how in the blink of an eye it can just crumble to pieces. Reality is I'm not sad for me. I'm sad that I am so helpless in these moments to help my son. I'm sad that my girls are constantly affected by the behaviors and miss out on a lot because of what our reality is. And for some reason, Mother's Day always just makes me feel sad.
Saturday, May 7, 2016
It's been a year!
We have hit a milestone today! A huge milestone!
It has officially been 1 year since Ty had his last hospital visit for bowel disimpaction. Never has he ever gone this long between procedures!
NEVER!
It has consistently been at least twice a year for bowel disimpaction, even with his cecostomy.
And that is better than it was before the cecostomy, which sometimes was 3 or 4 times a year.
One YEAR!
This is huge for many reasons. First being these procedures trigger his PTSD so badly that it feels like it takes months to recover psychologically from them, and then by the time he is improving- it's time again. But there were no other choices!
So, what's different? What has happened that it now has been 1 year since his last hospital disimpaction procedure?
I have 2 words to explain what is different.
MEDICAL CANNABIS
Yes, also known as Medical Marijuana. This has got to the the explanation for him doing so well. And the research supports it. We had hope when we decided to try it. Nothing else helped him. Nothing else was ever effective, nothing else helped him enough to allow him to be a little boy.
Until we started him on MMJ (Medical Marijuana). We were desperate after last summer's events. We are so thankful we live in a state that allowed us to access MMJ to see if it could help our boy. And it has. In so many ways! In ways we never even thought were possible. Especially for his bowels. MMJ has done something to help his bowels to the point that he is still not even showing signs of being backed up. And of even greater note: he has routinely REFUSED to do his bowel irrigations. He's older now- we can't force this on him. He has to "decide" and make the choice to do it. And despite our constant efforts, he refuses a lot. It first started with a few times, then a few more times, then a week would go by. All in all, I would say he has "skipped" well over 8 or 9 weeks total in the last year, spread out over time- but even as of today, he hasn't done his "flush" in 4 1/2 weeks. This is a whole other blog post- and yes we are on pins and needles waiting for some sign of impaction.
It will happen at some point- and well- he again has to take that control and recognize what consequence there may be. But other than supporting him and encouraging him, we can't do anything about it. But considering how much he has skipped, how long it has been since the last hospital visit, how long he has been on MMJ, it's helping him in ways we never expected.
Medical Marijuana has given our boy his life back. Given him joy and happiness that we've never seen consistently like this. Sure a few days here and there, maybe a week, or two. But it has never been a sustained mood or existence. There was always something around the corner, waiting to rob him of simple pleasures in life. Some we could control, some we couldn't. Some we could identify. Many we couldn't.
Medical Marijuana has helped our son in ways we never thought possible. We never knew there could ever be some improvement with his bowel disorder. That particular issue seemed to just be, something that wouldn't improve, and the fact that we had been talking with doctor's about the possibility in the future for bowel re-sectioning surgery to see if that could help- I still can't believe we are here, at this point in time, with him being 1 year out from his last hospital visit. Something we had just grown accustomed to since before we can even remember- his bowels were the first thing that we were challenged by since birth. It was the focus of everything since he was a newborn. It was to blame (or so we thought) for all his other health issues, developmental issues, behavioral issues. But regardless, his bowels were the cause of so many procedures, tests, hospital stays, pain, frustration, confusion, doctor's visits, xrays, and so much more.
And now, 1 year later, after 10 months of beginning Medical Marijuana, we are at this point. A point that my kid hasn't had to endure another traumatic hospital visit. Another bowel disimpaction surgery that causes him so much stress and triggers his PTSD to the point of spiraling down a black hole that seems like it's impossible to again see any hope and light.
Medical Marijuana has given our son and our family hope again. Hope that he can now find joy in life and see that there are pleasures and experiences that are happy and good. He has never had this before.
So forget about his Autism, ADHD, Bipolar, OCD, SPD- we've seen amazing things improve in these areas as well from the medical marijuana- but today I"m focusing on his PTSD, his bowel disorder, and how his PTSD was triggered every single day, robbing him of joys and experiences he should have been able to have. Medical Marijuana has helped him so much with his PTSD and clearly his bowel disorder. We may never fully understand how or why..... but even beyond the overwhelming research on MMJ and bowel disorders, our experience, our son's experience tells us it's effective. It has literally performed a miracle we never thought could happen. And I feel very compelled to tell our story, share our son's story to help others. MMJ should be available for anyone who needs it medically. It's medicine. It works. It has been the ONLY thing that has been effective and has forever changed our son and our family for the better. Our son deserves to have a happy, full, pain free life. And as of right now, MMJ is the only thing that has helped him on this new path of hope!
It has officially been 1 year since Ty had his last hospital visit for bowel disimpaction. Never has he ever gone this long between procedures!
NEVER!
It has consistently been at least twice a year for bowel disimpaction, even with his cecostomy.
And that is better than it was before the cecostomy, which sometimes was 3 or 4 times a year.
One YEAR!
This is huge for many reasons. First being these procedures trigger his PTSD so badly that it feels like it takes months to recover psychologically from them, and then by the time he is improving- it's time again. But there were no other choices!
So, what's different? What has happened that it now has been 1 year since his last hospital disimpaction procedure?
I have 2 words to explain what is different.
MEDICAL CANNABIS
Yes, also known as Medical Marijuana. This has got to the the explanation for him doing so well. And the research supports it. We had hope when we decided to try it. Nothing else helped him. Nothing else was ever effective, nothing else helped him enough to allow him to be a little boy.
Until we started him on MMJ (Medical Marijuana). We were desperate after last summer's events. We are so thankful we live in a state that allowed us to access MMJ to see if it could help our boy. And it has. In so many ways! In ways we never even thought were possible. Especially for his bowels. MMJ has done something to help his bowels to the point that he is still not even showing signs of being backed up. And of even greater note: he has routinely REFUSED to do his bowel irrigations. He's older now- we can't force this on him. He has to "decide" and make the choice to do it. And despite our constant efforts, he refuses a lot. It first started with a few times, then a few more times, then a week would go by. All in all, I would say he has "skipped" well over 8 or 9 weeks total in the last year, spread out over time- but even as of today, he hasn't done his "flush" in 4 1/2 weeks. This is a whole other blog post- and yes we are on pins and needles waiting for some sign of impaction.
It will happen at some point- and well- he again has to take that control and recognize what consequence there may be. But other than supporting him and encouraging him, we can't do anything about it. But considering how much he has skipped, how long it has been since the last hospital visit, how long he has been on MMJ, it's helping him in ways we never expected.
Medical Marijuana has given our boy his life back. Given him joy and happiness that we've never seen consistently like this. Sure a few days here and there, maybe a week, or two. But it has never been a sustained mood or existence. There was always something around the corner, waiting to rob him of simple pleasures in life. Some we could control, some we couldn't. Some we could identify. Many we couldn't.
Medical Marijuana has helped our son in ways we never thought possible. We never knew there could ever be some improvement with his bowel disorder. That particular issue seemed to just be, something that wouldn't improve, and the fact that we had been talking with doctor's about the possibility in the future for bowel re-sectioning surgery to see if that could help- I still can't believe we are here, at this point in time, with him being 1 year out from his last hospital visit. Something we had just grown accustomed to since before we can even remember- his bowels were the first thing that we were challenged by since birth. It was the focus of everything since he was a newborn. It was to blame (or so we thought) for all his other health issues, developmental issues, behavioral issues. But regardless, his bowels were the cause of so many procedures, tests, hospital stays, pain, frustration, confusion, doctor's visits, xrays, and so much more.
And now, 1 year later, after 10 months of beginning Medical Marijuana, we are at this point. A point that my kid hasn't had to endure another traumatic hospital visit. Another bowel disimpaction surgery that causes him so much stress and triggers his PTSD to the point of spiraling down a black hole that seems like it's impossible to again see any hope and light.
Medical Marijuana has given our son and our family hope again. Hope that he can now find joy in life and see that there are pleasures and experiences that are happy and good. He has never had this before.
So forget about his Autism, ADHD, Bipolar, OCD, SPD- we've seen amazing things improve in these areas as well from the medical marijuana- but today I"m focusing on his PTSD, his bowel disorder, and how his PTSD was triggered every single day, robbing him of joys and experiences he should have been able to have. Medical Marijuana has helped him so much with his PTSD and clearly his bowel disorder. We may never fully understand how or why..... but even beyond the overwhelming research on MMJ and bowel disorders, our experience, our son's experience tells us it's effective. It has literally performed a miracle we never thought could happen. And I feel very compelled to tell our story, share our son's story to help others. MMJ should be available for anyone who needs it medically. It's medicine. It works. It has been the ONLY thing that has been effective and has forever changed our son and our family for the better. Our son deserves to have a happy, full, pain free life. And as of right now, MMJ is the only thing that has helped him on this new path of hope!
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