A look back and how we started to look forward

 Thought I would share one of the first blog posts I made when I first started this blog.

It is important to remember how far our family has come, how far our boy has come.  So much progress.  It is a bit weird reading my inner thoughts from years ago, and what our daily life routine was like, or what it wasn’t like.  

These experiences are why I blog.  Why I share some of the more difficult moments of our autism world.  Why I reach out to support others.  Once upon a time, as you will read, I literally felt so alone in our day to day struggles.  Finding others who “get it” makes a difference.  Plus if I knew then what I know now, if I had access to resources maybe things would have been different.  Or maybe just not as difficult.  Who knows?  

I do know we did the best we could with the information we had.  But wow, to see how the research and understanding about Autism, Sensory Processing Disorders, anxiety, bowel disorders, cecostomies, behaviors, behaviors , behaviors....oh boy the information about kids who are aggressive, struggle to regulate, how trauma effects the brain development in those early years, and so much more.  

Would we have done things differently....absolutely.  We always were seeking the WHY.  And no body could ever help us understand the why behind or beneath the behaviors.  But that has changed.  We did change the way we looked to our child.  We knew if we followed his lead, maybe that would give us some insight.  We took him out of school, we ultimately stopped ABA (that’s another revelation that I wish we learned before we ultimately did).   He and I played.  I played with him.  We played Uno (one of our favorite games), we played legos, we built volcanoes that erupted, we hardened together, we cooked together, we played with the dogs together, we built things like chairs and tables together.  

Curriculum, formal schooling, worksheets, textbooks, homework, writing, math....none of that happened in the formal sense that we think of in school.   

He wasn’t able to do that.  I had to meet him where he was at.  I had to do what helped him.  I had to step back to see how to best support him.  

I think it was the most effective and critical “therapy” that actually made a difference for him and for us.  We existed.  We were present.  We were a we.  I call us Team Ty.  We were learning together.  We had no expectations, no demands on him.  He needed this.  He needed us to understand this.  And this is why following his guidance led us to actually seeing him make progress.  

Here is the post from July

My mornings.....

well, a typical morning in this household. Ty is already onto a nap by 7:00am, usually for a few hours (nice respite). Girls playing quietly, my soft tunes of piano or guitar playing- time to make my coffee..... had to give up Starbucks a few years ago- Ty just couldn't handle getting into the car and even just going through a drive thru.... it didn't happen without his anxiety getting the best of him and then him lashing out with behaviors and even at times trying to escape from the car... so that wasn't going to happen anymore. But my good ol' Mr. Coffee Espresso maker has been quite faithful the last 2 years- everyday, making me my cup of energy- I make my own Peppermint Mocha- and it allows me to use Almond milk. It's delicious! I look forward to it every morning... kind of sad, huh??? I guess it's my ritual. But drinking my coffee, listening to calm music, and things actually quiet in our house for the time being- allows me to breath for just a moment - before the rest of the day begins. Now, as some of that history I mentioned in an earlier blog, this blog to me is like my diary- and a place to share my fun craft ideas, recipes, and support for others who have struggles everyday, like our family. Because unless you know what it's like to deal with constant chaos, constant conflict, constant behavioral problems, constant medical needs, then it's hard to understand what some families in this country go through. And dealing with it everyday- well all I can say is it's hard-even on the greatest of days.... it's still so hard. Our great days are still filled with conflict. I just consider it like this, hey he only screamed at us today, I wasn't hit. Yes, my son age 9, who has autism, PTSD, Mood disorder, ADHD, Reflux, asthma, bowel motility disorder that requires nightly irrigation through a devise that is external in his colon, has probably been in the hospital more then at school in his lifetime- anyway, he has major aggression, behavioral meltdowns and major sensory processing problems.... and this is where my "paradise in a bubble story" starts. I do wonder if there is another family somewhere who deals with what we deal with. There hasn't been one specialist who hasn't said to us, well, he's very complicated. And this is in terms of his medical problems that are poorly understood, his mental health....everything. But also our society loves to put people, kids, everything neatly into a nice little box, so that they can fix it. And if you don't fit into this box, hmmm a lot of head scratching begins, many over the years have blamed us as parents. I'll save those stories for later. But We love our son, are committed to our son and our family, and we promised him a long time ago- that WE would never give up on him - as so many others have (professionally speaking). He can be the most generous, loving, sweet little boy- but his world is really tough, so tough that leaving our house- makes him literally try to crawl out of his skin. Think of it this way- he is allergic to the world. So our bubble is what we know helps him to be the little boy God intended. He is just a little boy... and has been through more in his short life, you can't even imagine. But like I said, we will never give up on him. well, behaviorists will be here in a few minutes, so better start my day and I pray today is a better day. He's just been really off the past week... and we have to really focus our energy into helping him. Helping him deal with life, deal with coping, deal with everything that happens throughout the day- because he has no coping skills!!! And when you're 9- ummm yeah, kind of tough- and throw major sensory problems, umm yeah, kind of rough, my sweet boy- we just love to see him smile and laugh and be a little boy- and that's not easy. So my day begins- and pray it's a better one!