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)!

 

Follow Your Gut

Follow your gut is a popular piece of advice in mom world.  It's even higher on the greatest hits list in autism or special needs mom's world.  You hear this piece of advice for women's safety, children's safety and essentially as an overall fallback when choices are more gray.

There is a delicate/indelicate dance going on here with this advice for some families however.  Between exploring new treatments, supplements, therapies and balancing what works.  Over the years, I've found myself in a number of contradictions.  Listen to your gut vs. never give up on your child.  It would seem from the 1,000 foot view that these two directives would not be mutually exclusive, but, they are.  If my gut is terrified of trying something new, or is responding to the negative outcomes from said new treatment, I’ve yet to encounter a para-professional that responds:

“You’re right mom, your gut is right! Our new, life changing treatment we thought would work is wrong.” 

 

  Rather, I hear a lot of:

“Give it time.”  

 

 Or just general and polite implications that the reason why their treatment is upsetting my gut is for another reason (environmental factors,  parent failure, alien invasion…etc.).

The number of times you get told you don’t fit as a parent of a kid with a condition that is unexplainable is really, painfully high.  When it comes from the outside, “normal kid” world, it is expected.  When it comes at the end of yet another time consuming, emotionally and financially exhausting therapy or treatment, it sucks.  We are all super special, unique, quixotic, whatever.  We each are miracles of God’s creation and this will be the only time each of us will be here in this format.  The most true answer I have found in this quagmire of parenting is “I don’t know.” 

So, if a parent is trusting their gut, and it doesn't look "right" to you,  maybe take a beat, and ask yourself if maybe, that parent might know a bit more about their kiddo than you do.

Numbers + Vent =

Thank you state testing results for reminding me how academically delayed my child is.  Thanks SO much for that handy bar chart ranking him at the bottom. That was super helpful as a visual.

I get it.  There are many reasons to test special education.  Not everyone receives the same results and every student should be counted.  The data has value, I assume, and our depressing results are ours, not everyone's.  I don't want to change the system, I just want to vent.  Similar to stepping on a scale to affirm what you know but avoid; or looking in the mirror at an aging face, or getting a crappy credit score or low bank account - numbers can hurt.

You have cancer? Then you probably have thousands of examples  you can recall of numbers hurting.  You ever compete in sports; numbers hurt, scores can hurt.  Not getting the results you want SUCKS.

I don not consider myself to be in denial about my son's autism.  It is accepted and praised, and loved in our household.  But, when I have to recognize hard truths, that still sucks.  Filling out the new intake form for a therapeutic or medical professional sucks.  Re-visiting dates of first smile, walking, crawling, all the milestones that tracked perfectly and then all of the ones we still haven't hit, breaks my heart a little every time.  Revisiting the perfect, easy pregnancy and labor and then trying to answer; "What do you think caused this delay in your child" - gives me very strong profanity/ middle finger vibes.  I appreciate this question's value as in certain cases it a parent could have an answer that informs the therapeutic process.  Since I am NOT living in that case, I go towards sarcasm which while it immediately entertains me, I'm sure isn't really helping anyone.  But since this is a blog, here are some of my possible answer candidates:

• Because I'm a terrible person
• Bad Karma (I actually did put this one down)
• The universe hates me
• God has a different plan for us
• I am a terrible mother
• I have no idea, but would love to know...

I know in my heart, we all have those days / moments when the crap tornado blows through your home (or life), and that this minor storm was mine.  It's moved on, and I'm back to the wonders of the day to day which are plentiful.  Hopefully though, my vent helps you vent, or laugh or just think about numbers in a different way.  Perhaps the next time a number that isn't the one you want bonks you in the ear, you'll think of me, and my karma and know that though you're disappointed you are certainly not alone. 

Let's Get Physical - and what to expect when you get there

Disclaimer:  I used to cry in PE.  Well, I used to fake cry a lot.  I would use any skill in my dramatic arsenal to be excused from running.  I was a PE weasel.  I can admit it now, 30 years later.  I tried to claim asthma, severe cramps, ANYTHING to not have to run, or even exert myself physically.  I would envy a peer's broken leg, and wish for anything to derail me from the dreaded short run around the field.  I'm sure this has ensured tons of karma kickbacks along the way, and it makes my current day to day exercise routine that much more unexpected.  Historically, I have not been keen on exercise.  The fact that I do it as often as I do, and have tried so many classes in the area is nothing short of semi-unbelievable, but what can I say; "'Expect the Unexpected''!!!!

I recently had a mom ask me about my experiences with different classes in the area so I thought, why not share a little wrap up of what I've learned so far.  If you don't have a lot of time, and are interested in trying something new, but are scared of what to expect, read on for a lazy convert's review of spots where you can sweat in the OC:

YAS - Yoga & Spin classes.  Very conveniently located and typically on the easier side to attend classes last minute as they aren't terribly full and are so frequent.  This is a good spot for beginners as they have classes that can be adapted to different levels and the mix of people is a bit more diverse than other more intense studios.  The YAS classes (1/2 yoga, 1/2 spin) are a good full body workout and leave you all stretched out and worked out.  They offer great packages and monthly specials so you can get your class cost down to $11 or even lower at times.  A good starter spot, good for people with schedules all over the place who need to pop in last minute, and good for people who need a more affordable spin option.
BRING: Spin shoes, water, a towel (you'll have to buy one otherwise), yoga mat and yoga towel if you take the yoga classes.

Full Psycle - Spin classes.  More intense than Yas, some good instructors, dark-ish room.  The theory is that everyone's output from the bike is on the board so you work to beat the person ahead of you.  I didn't like it because  I was on the bottom and felt bad putting someone else there, BUT, that could just be me.  Go early to your first class to get set up and pre-register ahead of time!
BRING: Spin shoes, water, possibly towels ---it's been a while since I went!

RA Yoga- I love this place.  I've been going for a few years and am pretty biased because I've been there so much.  When you try your first class, you get the rest of your first week free.  But come prepared!  Hot yoga is sweaty. You're welcome for the obvious note. Try a Hot Ra class if you're new to hot yoga, or call them about a beginner class.  The strength classes are an awesome workout, but they do take up a lot of time considering you need to get there a bit early and you'll definitely need a shower after.  So hard and awesome though.
BRING - yoga mat, towel for yoga mat (so your sweaty feet don't slip all over the place), towel to wipe your sweat, and water.  Come a few minutes early for your first class and if you haven't done it before, just set your goal to stay for the whole class.  Shockingly you will get addicted to what seems like torture - crazy but true.

Radiant Hot Yoga- I blame groupon on this one.  And possibly too much wine the night before.  This spot is serious about hot yoga in a swamp.  I took a few classes here and had to quit.  They add steam and heat in some classes and I truly thought I was going to die.  Everyone leaving the class looked like they were walking out of a swimming pool.  I thought a fireball was going to burst out of my chest and melt the rest of me. Not good for me, but if you feel like you need your hot yoga hot hot hot, check it out.  I got trapped in the studio, and am still so embarrassed about leaving early (major yoga no no).
BRING- yoga mat, yoga towel, water, towel for your face, and plan to shower afterwards, maybe bring a towel to sit on as you drive home cause you gonna be STINKY!!

Grit Cycle- Holy workout tribe.  This spot is next level.  I went to class late for my first class and the entire room was so pitch black, I am pretty sure I annoyed everyone in the room and almost broke a toe.  Get there early for your first time, parking is not easy and you need the intel from the pretty front desk gals.  The room is very dark (pitch black ish) at the start of class and the room steams up as the class progresses.  Be prepared to see people exercising at a level that is beautiful and disturbing all in one sweet package.  I thought I was kind of being hazed and hugged at the same time.  Instructors are mostly terrific (exceptions are the instructors-in-training) and the lemon/heaven scented cool towel you're given at the end of class feels other-worldly.
BRING:  Your party pants, spin shoes, water and a plan to shower afterwards, prepare to get WERKed.

SoulCycle- The hype is real.  I attended a hip hop Friday class that made me feel like queen of the dance floor - on a bike.  Very pricey, few to no specials at this spot.  The crowd is fancy but oddly more mixed than the usual 17th street workout crews.  The classes are very good, and hard, and the walls steam up and the instructors motivate you to work even when you want to quit.  Fancy and worth it, but hard to sustain on a budget.
BRING: water, spin shoes, and an open heart.

Orange Theory Fitness- High intensity interval training with heart rate monitors.  Running, rowing and weight training.  If you are looking to do an all over body workout and burn calories, this is your spot.  There is tons of accountability built in to the class assisted by the heart rate monitors, and sometimes you feel like you got your groove and workout on.  Endorphin high is definitely a possibility here, but the crowd can be intense, so bring your workout apparel A-game if you care.  They do have packages, which can make this less of a budget buster, and you will see results.  I used to say I only ran when I was being chased, but that isn't true any more because of the instructors at these classes.  This spot has also been the scene of  many an injury, so don't drink so much OTF kool-aid that you pull your hammy.
BRING: water, a towel and running shoes - come a few minutes early and sign up beforehand.  I have the app on my phone now, but there are some classes you can drop into during the less than peak times.

The 12- This place has community, and if you aren't a big high 5-er, you will become a mini-5er (or, at least a fit bumper) with your group.  The workouts cycle through the room and can be adapted to your level.  Instructors, and the group you workout with will push you as well.  You see it all here, high fitness to new fitness to no fitness, its a mixed bag and not as "sceney" as some other spots can be.  You end up doing 12 exercises in all at 3, 4 or 6 stations on rotations that will make your muscles say HELLO DOLLY.  You will not sweat as much as you may during other classes but you will get stronger, and feel that muscle grow and start to burn your bits and pieces.  I was a fan of adding in the classes 1 to 2 times a week.  The first class and subsequent week is free here, and they have good packages and specials. Be careful of your body here, and don't get hurt trying to get fit.  #COUNTERPRODUCTIVE
BRING:  athletic shoes and water, they have towels and all the equipment you need.

Poof ---- Halloween Historical

I'm feeling nostalgic today and thinking it would be a good time to look back.  Things have been going well with the people that came out of my belly, and that is when I find nostalgia to be positive rather than disarmingly harmful.  Looking back after days that are hard skews my perspective so much, it's hard to know what the point is of any of it.  

Blake's first real Halloween, where we attempted trick or treating, he bit me so hard I still have a scar from it 7 years later.  He wanted to go into the house.  Of the stranger we had never even seen before.  He was not interested in saying trick-or-treat, not interested in the candy, and he was not interested in walking back through the crowd of kids behind him.  He probably figured hiding under the couch in a strangers house looked safer than "out there" with all of the noisy, excited trick-or-treaters.   It was horrible.  The bite really hurt, and I know I'm going to sound like a huge weenie, but it hurt a lot.  He got me good, and to be fair, he had tried other ways to tell me he had other plans for the evening and I pushed him to have the super weird "normal" Halloween experience, so I get where he was coming from.

It's taken a few years, but this year, we may actually get closer to the ''normal''-ish  Halloween experience.   Over the past two years, we've been able to pull him in his wagon as we go around our neighborhood.  If he wants to, he can go up to the door, and if he doesn't he doesn't have to.  We have popcorn and other sensory supports in the wagon, and we are set to go around the neighborhood with friends who he is really comfortable with.  I'm feeling optimistic.  But mostly, I'm feeling grateful.  Because it has been a long and bumpy journey thus far, and I'm happy to be where we are now, instead of where we were back then.  Blake isn't running away, and he's been stopping when we call him to stop, so I'm very grateful for that.  His functional language continues to improve, so he can express preferences that are known, so that is another point in the outings category.  And finally, he seems to enjoy being with kids more now.  He's not ready for a rave, and we are still going to struggle in novel, loud activities, but through painful training, he has become more adaptable and seems to actually enjoy being around other kids right now. 

I still continue to have no idea where his story is going, but I'm not quite as scared about it as I used to be.  Maybe that is just wishful thinking, but I know that worry isn't going to help him, and is only going to fry me faster.  

So happy Halloween to all, and hopefully you experience some wins and fun tonight!