A new post for this new dimension of life

My need to advocate for not just my kids, but for all kids with disabilities is stronger than ever.

I have many plans to keep my voice loud and plans to enact change.

Wether it is from an educational point of view, which is key to properly supporting our kids, or from the stand point of legislation, which needs to change to keep our kids safe and educate them so they can live to their full potential, I will rise to be seen and heard.

 I will lend my support to those who need it.  I will not be dismissed.  I will not be shut down.  I will tell my families story.  I will bring awareness to the community that values education, but falls short for including education for ALL.  I will go beyond my comfort zone to help our most vulnerable kids.

I will share the resources I find invaluable.  I will continue to learn and educate myself on topics that help support my kids and share what I learn for those that are interested.

I have pledged to make this year the year that things change!

After the death of our beloved friend Max, we cannot sit by any longer and risk losing another child due to abuse at a special education school.

 I will continue to raise my voice for all the kids like Max, like my son, who were pushed to the side and only viewed through the behavior lens of reward or punish.  We cannot continue this ignorant way of viewing our children who struggle.

I will be their voice if they need me to.   I will try my hardest to help them raise their voice.  Now is the time for everyone to listen.  Not just to their cries for help.  Not just to their surface behaviors that can be seen.  It is time to understand how these kids communicate.  It is time to see the beautiful souls our kids are.  It is time to learn from them; even if we don’t always understand it ourselves. It is time to show our kids they have value.  That they have so much to contribute to this world, and it is far past the time for everyone to show compassion first and foremost.

Safe access for all

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

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.

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.

doggie halloween costumes are the best!

We had quite a nice evening last night. As a family. Something definitely more than rare these days. It's just something my boy isn't able to handle most of the time.

It started with a good day for him. Lots of dog scripting. He wanted to play a game with me... third day in a row!!! And this time he agreed to play a game I recommended, Sequence. We spent probably an hour and a half yesterday playing sequence and then checkers. It was pretty amazing.
Then we had doggy dress up time. Because when it's Halloween, of course the dogs get costumes too.
 
This was all wonderful. This definitely filled my soul with happiness. But what was even better than all of this.......
we all sat in one room, together, to watch a new show on TV called Speechless. And we all laughed. We all enjoyed it. We had 30 minutes of family time, together. That was pretty incredible. It feels like it's been a very long time since we've been able to do this. And we did it last night. And best of all, there wasn't any problems.

 He didn't get overwhelmed. He didn't get angry just from the fact that we were all in the same room breathing the same air. There was nothing except laughter and smiles.
And if you know anything about this new show, it's about a Special Needs family (ironic isn't it).... the boy has CP and is in a wheelchair.... and it's centered around all the craziness that comes when you have a child with special needs. And it is written in such a humorous way. It's real, it's raw and let me tell you how much I can relate to it. It is so well written and so incredibly funny. And laughing is good! And that is what we were all doing last night! It was beautiful.

502 pages

502 pages!

That's how many pages in the book that my boy finished yesterday.

Yes, I said yesterday!

This kid just is always keeping us guessing, keeping us on our toes at all times, constantly surprising us and amazing us. 

502 pages kept him so focused, engaged, and literally transcended him into another world inside that book.  Not much can do that..... that is pretty powerful!

And this is all from a boy who never demonstrated to ANYONE that he even understood the most basic of words, the beginning of understanding written language, of even having an interest.

But unlike most kids, my kid didn't ask for him with a word like; to, or, maybe, sit, eat, or any other word that is considered beginner reading.  My kid liked books, especially encyclopedia type books with great pictures.  But one day when he was about 7, again he had never made an attempt to show us he knew how to read anything and refused to ever demonstrate this skill to us or anyone, and what does he do one day?

He asks for help with the word "experience"..... huh???  and from that point on we realized he knew how to read.  He taught himself, it clicked just one day, we always kept books everywhere.  So this is my kid.... his favorite books were always non fiction.  He loved dictionary's, encyclopedia's, nat geo books on animals, space.  He loves reading maps, books on geography, anything to do with FACTS!!!  That's what has been his reading material- the type of book that would actually keep him engaged, keep his attention and focus and of course it gave him material.  Material to then tell others all about these facts that he has now learned.  It's part of his scripts!!! 
But it's changed recently.  Slowly it started with a "How to Train your Dragon" chapter book.  That kept him pretty engaged. 

And slowly over the last year, he has read a little more like this.... not just a book of FACTS!

Then this week comes.... and he's been reading the last month like a crazy maniac.  It's great- he sits in a chair, puts a blanket on his lap, dogs at his feet and reads.  And reads, and reads!!!  
I'm trying to keep up with him and his interest and picking books that will keep him focused and he is interested in.  What can be hard is he literally judges a book by it's cover.  If the picture on the front doesn't spark him immediately- forget it!   But I have found this series, actually several series by author Brandon Mull........and well it has sparked him.  He read the first in the series, Five Kingdoms end of last week, and then he read book 2 and 3 this week.  And yesterday he read book 4 in the series.  All 502 pages of it!! In one day!  This kid just is always full of surprises!!   But it gives me so much joy as his mom to see him enjoying something.  So little in life brings him joy, and to see him calm, engaged, focused, and completely engulfed into the world inside those pages......well, it. gives makes my heart smile really big!   Now, to just find another series that will capture him.  (book 4 was the last in the series for now..... ) 

Is it my stresses?

I just don't know what to think right now! 

Do I have super low patience setting him off?

Is he just so dysregulated that simple things are making him explode?

He is on a very emotional up and down mood these days.  One minute quietly reading a book in the corner wrapped up in a blanket.  And yes it is really awesome to see this.  But as quick as a flash, some crazy idea disrupts him and next thing I know water is being poured all of the floor and he's yelling.

I never knew what that was about.  Luckily my ignoring him and his act of throwing water everywhere was effective today.  I never said a thing about it- just continued on like it never happened.  Except I did ignore him and any requests he had.  Because clearly engaging in a conversation will likely end up with another behavior.  So I decided to make little one a new bed.

I was successful making her bed using wood from an old Ikea bunk bed that I had saved (see, you just never know when I might have some brilliant plan and need wood that I can just reuse, like from an old Ikea bunk bed.... it was perfect.... made an entire new twin bed with not buying one thing).

But back to Ty, and his quick to erupt emotions.  Hoping today is a better day.  Funny thing he had a pretty good evening last night.  He was watching the debates!!  Yes, the presidential Trump V Clinton debates.  And he had opinions.  It was quite funny, and adorable to hear him try to make sense of what was being said.  But for the most part he has heard many things probably from us and some shows on TV, ESPN, commentary's, news..... and repeated many of the pro-Hillary statements regarding Trump and the craziness that he has brought to the Presidential Race of 2016.  He definitely talks as if he's an authority on the subject.  That's my boy.  He knows and don't question him. 

Ahh.... my mind is all over the place.  Probably not helpful to him.  I get that, but we have a pretty big day tomorrow.  Can't talk details... will post when I am able to... but I am nervous and he will be in the care of my best friend for most of the day.  It will be fine I'm sure.... I'm more worried about Thursday and Friday.... the aftermath as we call it.  So, maybe he is just being super sensitive to me and my own stresses.  But I just want to get him back to a more predictable, stable, calmer state where he is happy, smiling, and we can see even a bit of his personality, of my fun loving silly boy.  I miss that!