Welcome!

I am not an expert, this advice is intended to be helpful and humorous, with flashes of wit. Please know this is a futile attempt at getting the world to do things the way I see fit.

If you need advice on any topic, I'm happy to help you by either giving my own recommendations, or seeking out recommendations from others, then claiming them as my own. If you have no sense of humor, please do not read this blog.

How it works...please post a question in the comments section of the blog (or send me an email if you'd like more anonymity). I'll post it with my advice. Take the advice, leave the advice, but don't let me tell you
"I told you so!"

Thursday, June 21, 2018

Graduation Day


Image result for graduation images
4 students from Blake’s class are graduating from 6th grade tomorrow.  2 of them I’ve known since Blake started his autism preschool program back when he was 3.  One of the mommas I knew before she had her second, third, fourth and FIFTH child.  She is an incredible woman / philanthropist / style maven/ superstar with a huge heart.  The other momma and I bonded through autism parenting classes together, and at a time we were so close, her son thought Blake and Olivia were his cousins.  From the sidelines, I’ve watched these kids grow.  From tiny toddler tots to now pre-teens, we’ve all checked in over the years; shorthand rattling off things that work, things that don’t, and gnarly stories only autism moms would “get’’- then laugh-- and then cry over.  I’m so weepy when I think of these kiddos graduating.

When I think of them, standing up on a stage to mark their progress, I think of how far they’ve come and how many hands had a part in the process.  How many teachers, specialists, doctors, administrators (good and bad), crossing guards, therapists (OT, PT, Music, Speech, ABA, etc. etc.), family members, friends, or even babysitters helped to shape the kids that graduate tomorrow?  I think of myself, and how many hours I’ve spend over the years; crying in the bathroom, praying to the ceiling in the middle of the night, banging my head against the wall, wiping the tears away in my car to slap on a smile and collect my precious kiddo from his day at school.  Countless hours.  So much time and heart and prayer and effort spent to get to where these guys are tomorrow.  The road has been tough.  It has had some wrong turns for us, I am positive I’ve made a ton of mistakes with my kiddo. But when I see these friends, and think of them today, I am tearful with pride for my fellow mommas and dads and “Teams”.  Because this milestone didn’t just happen.  We didn’t loose these kids or give up or quit.  We just kept trying to do what we could with what we have.  And now, they’re where they are today because they didn’t quit and neither did we.

Cheers to the teams of all of the graduates tomorrow.  Sending so much love and tons of tissues.  Victory lap for everyone!!!

XOXX Emily

Thursday, May 24, 2018

Fourth Graders, wrinkled brows and failed attempts.


 
 Blake and John Muir -- And a ducky that he likes to chew.  Blake, not John Muir.  From our Yosemite trip in April.

Written during Autism Awareness Month.......
 
I just left a 4th grade classroom.  OF sweet, typically developing kids.  I gave a presentation about autism awareness, which attempts to explain autism and encourage students to including autistic kids in their activities.  I came up so short.  Explaining autism feels impossible.  It is not cohesive.  I sound like a phD student (or wannabe) when I try to go into autism-explanation-mode with adults; riffing on neurotransmitters, individuality along the spectrum and whatever other $15 word I can regurgitate to try and educate people about it.  I always come up short.  The more you try to define it, the more confused kids and adults alike seem to get.  The expressions, the squinty eyes, the “huh?” expression, the “why does she keep talking but still not make any sense?” looks are ones that are usually floating around at the end of the discussions. 

Honestly, their questions are my questions;
            What causes it?
            Does it get better?
            What is it?

The answers I have to these questions are so frustratingly vague.  And flawed.  The answers I have, the ones I know, well, they aren’t universally true.  So now, instead of trying to raise awareness for autism, I get fearful that I could in fact be mis-informing people.  At this point, I think I’d have a better shot at defining heaven.

Example:
Q: Can you have 2 of the symptoms of autism but not all 3?

A: ummmmmmm yes? 

Here’s what I want.  I want all of the typical kids to have empathy for kids and adults that are differently abled.  I want the typical peers to include the special needs friends and help them thrive.  I want kumbaya homies.

But instructing this want, well it feels like trying to define the ether, or love.   I’m sure I said something so wrong.  Because “if you know one person with autism, you know one person with autism”.  Generalizing doesn’t work. 

The kids have other questions that come up almost EVERY time.
Q:        Can I catch autism?
Q:        Does it ever go away?
Q:        How is it cured?

A:  ummmmm NO, Not really and we don’t know?!?!

So, if I negatively impact you, or your loved one on my crusade to try and help, please know that I am truly sorry.  But in my mind, talking about these things, even if they are confusing and messy, well, isn’t that better than not saying anything at all?

Friday, March 2, 2018

Stuff that works - The Big Buddy story



Stuff that works.



I have a long list of things that haven’t worked when it comes to autism.  But one thing that we’ve done, that has worked, is the Big Buddy group we started this year.  It all began with a boy we will call Tom, a one-of-a-kind unicorn of a middle schooler who needed to complete volunteer hours and wanted to do something that worked within his tight school and sports schedule.  His mom and I have been friends since Blake was born, and when she was wondering aloud how to help him complete his volunteer hours on such a tight schedule; half-joking; I said

“Well he can always come over and hang out with Blake”.

Social skills are very important and very difficult to teach to kids on the spectrum.  For Blake, when he is around other typical kids that he likes, he lights up.  He’s interested in what they’re doing, he does things that he doesn’t do for therapists, and shows me that he is more capable than he likes to act around his mom. 

"Tom" came over, riding his bike (a bonus for his mom who didn’t have to drive him) and joined the after-school therapy session with Blake and his ABA therapist.  That day, they were working on play routines.  We were trying to teach more leisure skills for Blake, to give him practice at more functional skills with the hope that after practicing these skills he might grow to enjoy them. 

Non-Autism Parent Note: With Blake, he doesn’t initiate new skills often, so if you wait for him to “figure it out”, you’re dooming him to a long period of doing the same thing.  Not because he necessarily wants to, but probably because he doesn’t have any way to do something else.  So you have to guess at what he might enjoy, what he can do, and what might be something he could grow to do later in life.  It is usually rough in the beginning and then he enjoys the activity.  Usually :).

Knowing Blake needs to learn new skills step by step with tons of repetition, we started with the steps for t-ball.  Prior to Tom’s arrival, Blake was still working to attend enough to put the ball on the tee.  Within minutes of Tom’s participation, Blake put the ball on the tee, hit the ball, and ran around the bases.  Zero to HERO that kid!!!  And the “ah HA” moment hit.

 Peer model => more fun for Blake => more authentic play => more skills => happy / more able kid => mom and therapist doing backflips.

When something works for Blake, I go into MAJOR exploitation mode.  If this worked, then could we try X?  Could this work for other people?  How do we grow this? How do we do more of what works??  How do we share it so other people can do something that actually works?!?  

And then the idea for the Big Buddy program was born.  I realize, there are many of these types of programs, but I’m not involved with them, and I was scared to try them or the timing for them didn't work, or Blake is not the right severity of autism for them.  I know I didn’t invent the wheel, but I’m thrilled to be a part of a special magic that makes an impact for families in my community.

What we did

Tom’s mom and I then worked to figure out a way to connect our groups.  Hers, the group of boys who, like Tom could be good at playing with kids with autism, were interested in this type of community service, and also needed volunteer hours.  Mine, families with special needs children who would benefit from a typically developing kiddo a few years older than their child, showing interest and playing with their kid.  We invited all of the players and had our first event.  It was a pretty huge success full of higher power, WOW moments.  We heard feedback about increased awareness/interest/compassion from typical parents.  We heard feedback from the typical kids about how much fun they had.  We heard teary-eyed feedback from parents who saw their child show their parents skills that mom or dad didn’t know they had. 

“This is so great for my son and our family” (From both typical and special needs families)
“I’m loving the conversations we are having after this event about different needs.” (from typical families)
“I can’t tell you how grateful I am to see my child so happy playing with his big buddy” (from special needs families)
“This is the first time I’ve been able to relax while my child has had fun in I don’t know how long.” (from special needs families)

And also; “This is really special”.

So, if you have the ability to copy this in your own community, DO IT.  It hasn't been perfect, but each time we do a Big Buddy event, I get a couple of major thank yous that keep me from giving up.  Coordinating people, pleasing everyone isn't easy and I fail at it every time.  But if it helps one family, then I figure that's worth it.  

I often find that among the many gifts we get from having a special needs child, it is the opportunity to help others to be a little more patient that is one of the most frequent and greatest ones.  For typical families, there seem to be numerous benefits: increased understanding, patience, less fear of differences, increased leadership opportunities and shifting of perspective.  For special needs families, the benefit of increasing community, your child being able to attend something that is “for” them (not adapted to accommodate them), and watching your child play in a more natural environment seem to be a few.

We are having our next Big Buddy event in a few weeks, if you have a child with special needs and are in orange county, please message me or comment below if you’re able to come (or would like to be invited to come to the next one)!

Image result for image of friends