Brain science will get us through!!!

This post is actually a response I made on another post.  I’ll also copy the original article which I think is not only outstanding, I wish all the professionals and doctors and everyone with kids, who works with kids could finally get on board with the science behind behaviors, truly brain science and so care for our kids who struggle can be better coordinated and a comprehensive  team approach to actually helping and supporting families, like ours.  Versus the old paradigm, as they call it, of behavior is something we must extinguish.  Behaviors of non compliance are always bad.  Kids with behaviors are bad and need to be punished.  Parents have “no control” over their children.

This narrow view (and many times ill informed) of behaviors just isn’t helpful, makes things worse and leaves families and kids very frustrated and can even have long term consequences, trauma because the child didn’t get what the child needed in times of distress during developmental years.

 Safety, connectedness and comfort is shown to be crucial to actually helping our kids.  We must educate teachers, caregivers, and the numerous professionals in the fields that work with children and stop pointing fingers, judging, and blaming parents or worse, blaming and shaming the kids.

Here is my comment and the. The article will be posted below
I highly recommend reading this article.

Love this!!!  I know it can be hard (first hand experience with our complicated son).  But it is so important to see our kids behaviors as not intentional and realize our kids are struggling in those moments.   My son frequently went to blue state shutdown.  We saw this as a very scary experience for us all.  But none of our professional team for so many years ever saw this as the serious event it is.  We were told over and over it was a delay tactic and a way for our son to avoid a task, etc.   NO!!!!     Thank you for writing this book and giving parents the tools to recognize and better understand their own children and the brain science behind what many of us parents experience all the time with behaviors from our kids.  I just wish schools and other professionals would get up to speed on all the brain science because as you know, behaviors are seen as an event to judge and assign a consequence.  And for so many of us, who can now recognize our kids behaviors most of the time, as a stress response (esp sensory in my sons case) we are better equipped to properly support our son and help him through connections and co regulating!!  We experienced his high need to co regulate from very early on (he has medical trauma since infancy) as well as autism, but advise from professionals and doctors, be more strict, have consequences, he’s manipulating you.  I’m glad we always walked away from those professionals.  But with so few understanding our son, and blaming us the parents, it was incredibly stressful and made things much more difficult and took our energy away from really helping our son.  Ultimately we knew our son best.  We needed to focus on helping him, and it was a 24/7 parenting marathon, unlike any other typical parenting.  But it’s what he needed.  Especially since he constituted to be in and out of the hospital several times a year, which caused regression every time.   And one step forward, then 2 steps backwards was difficult for him and our family.  We took joy in the littlest of experiences.  To see our son experience a moment of joy was the greatest gift as parents.  Laughter and togetherness is what has gotten us to this point.  He will be 16 in June.  I share your book and the ideas of brain science with our local parent support group, many who are parents with invisible disabilities and behavioral issues.  If I could go back 14 years with the knowledge I have now, well, hind sight is 20/20!  But I want to help support other parents who are struggling, getting advice that they instinctively don’t agree with (reward, consequences, charts, points, etc....without being able to really understand is the behavior intentional?  Or is it a stress response?  Especially right now during a global pandemic.
Thank you for all you do for our families, professionals and our kids!!!  Our kids can be successful!!!!!  💜💜

https://unyte.com/blogs/news/why-a-child-s-behavior-is-not-what-you-think-it-is

Homeschooling vs. crisis schooling during a pandemic

Excellent blog homeschooling vs crisis schooling.    Everyone right now is crisis schooling.  It is not easy for anyone even veteran homschoolers!!!

......."Don't artificially create busy work to do school for 6 hours a day. That is soul sucking, will anger and bore your child and make you tear your hair out. When you're done, you're done! Go do some fun things! Or... even crazier... have fun learning! See my next point. ........"

https://www.heatheranneworld.com/post/homeschooling-is-not-the-same-as-crisis-schooling-advice-during-coronavirus-covid-19-shut-downs

But my kids therapies!!!!!

I keep hearing so much from parents who are very concerned for their kids and what about all their during this emergency crisis!

Here is my response to a recent question about “what about my kids therapies?”


Of course this all sucks, but my comment for everyone (cause I know this is on everyone’s mind) and as wonderful as all of our kids therapists are, as incredible as their speech therapy, OT sessions, counseling, ABA and anything else others do to help support our kids in their daily lives, and although everyone’s lives are literally upended in a way none have us have ever experienced I want every parent reading this to know
Your child only needs you!!!!  As parents, all the therapies were also big lessons for us.  We learn how to help support our child in a particular area that’s being worked on.  You already know so much, you just need to keep doing everything you are doing.  Will it be hard, absolutely, but everything the therapists do for your child, is probably already done at home with you, the parents.
Is it a change in routine that will be hard at first, yep!   But this is a chance to create a new routine, involve your child , if they are able, and make it fun and engaging.  That’s what therapists do, we all have watched them work magic at times.  Now it’s in our hands, the parents.  It doesn’t have to be scary or overwhelming.  Quite the opposite.  It can be a time of connection and engagement.  This naturally all leads to learning.  Learning isn’t just sitting at a desk, doing a worksheet, it can look so different.  This different actually is  more likely to engage your child to want to keep learning.  Learning doesn’t have to occur between 8-2pm.  It can occur any time.  In fact, you might find a more optimal time that your child is more alert and enjoys participating in learning activities.

My point with all this:  embrace this opportunity.  Nobody has a choice.  But we do have a choice to do what our kids need.  And their needs will change during this time of uncertainty.  Everyday is not going to productive.  That is okay!  We need to maybe lower expectations for ourselves, and recognize that again, kids learn through play!!  Play a game, play cards, cook together.  There are no limits.  It all makes a difference and is every therapy that supports our children.
We all just need to be creative and think outside of the box that we know.  Have confidence.  You are all that your children need!  Period.  It is a time to slow down, get back to basics and really take each moment as it comes.  Everyone here-  You got this!!!   And we are all here for each other!  So no one is alone!  We can all share ideas and resources.  🙏💙 to all the parents!!!

Autism life is already isolating

As if our Autism world isn’t isolating enough, with the rapidly developing Pandemic upon us, I put together a list of family friendly educational documentaries and TV shows that have been apart of our Autism world for the last 10 years.  Besides homeschooling our son for 9 years, our family naturally enjoys these types of programs, we watched together especially when the kids were much younger and it created a “family together time” and helped all our children become life long learners.  The engagement we experienced by  watching these shows together, we found it supported our son and created an environment where he could be present, calm and safe.  This connection our entire family created helped us all in so many ways.  I treasure those moments.  I know those moments helped all of us.  I know these moments helped all our kids and fostered the love to learn and that screen time doesn’t have to be considered negative.  It can be utilized to support, engage and be connected to each other.  Which is so critical when supporting our kids with neurodiversity.  Connections and compassion are crucial to help them be successful.  I will continue to post on other suggestions and helpful ideas, especially now that so many schools are closed and parents are now in a position of  having to support their children in many aspects of their lives now that they are home, isolated from their usual routines.  This is a time our kids need us now more than ever.  The difference that watching something educational together is not only a wonderful shared experience, but fosters our children’s innate passions for learning.  

My families recommended educational documentaries that are family friendly.  

Disclaimer:  all children are unique and what their sensitivities are when viewing shows.  Use your own discretion regarding these recommendations.    (*indicates favorites)

1. National Geographic shows (nat geo channel). *
2. BBC earth. *
3. National Geographic kids. *
4. History channel (more for older kids)
5. Bill Nye.   (billnye.com).    Save the world (Netflix). Bill Nye science Guy (Netflix).  Public library has a great video collection.  *
6. Disney nature
7. Magic school bus (Netflix). *
8. PBS nature.  (PBS.com). *
9. brain pop.com. *
10. Nova. *
11. nasakids.com ( NASA climate kids, solar system. NASA.gov, *
12. Cosmos
13. Impossible engineering show. *
14. Engineering disasters show
15. California Gold by Huell Howser (PBS). *
16. Weather channel. ( Extreme Weather). *
17. Dream Big— Engineering our *
18. Dangerous Animals
19. Nature channel. *
20. How’s it made?  Tv show. *
21. Science channel (what on earth?) *
22. Discovery channel
23. Animal Babies show
24. Nat geo wild. *
25. The Blue planet. *
26. Wild Keats (PBS)
27. Zoboomafoo (PBS). *
28. How the Universe works. *
29. How the Earth was made *
30. Planet Earth. *
31. Earths Natural Wonders *
32. California Academy of sciences.org. *
33. Online.kidsdiscover
34. Cloud docu-series (Wild Stallion of the Rockies). PBS

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.