Nothing Stays the Same

Thoughts During Autism Acceptance Month. 

(** I wrote the original version of this 9 years ago, but have updated it a bit. **)

So, your kid has autism!  Oh, boy!!  Your friends just don't know what to do...what to say...how to act.  It's not like you do either. You kind of muddle through the first few months, and maybe even the first year, and your friends are appropriately supportive, sometimes in a "trying too hard" kind of way.  Then things slowly start to change.  You don't talk like you used to.   Hanging out gets trickier.  You can chalk it up to your kids are growing up, they have different interests. But basically you have completely different paths. Conversations become fleeting, and finally you just don't have any interactions.  And that's okay.

And it really IS okay.  Thankfully you had some warning about this from a friend whose child had been diagnosed with autism a couple of years before your own.  You knew, in the back of your mind, that some of your friends would kind of fade into the background because you simply wouldn't have time for them (remember the zillions of therapies that start to fill in every second of free time?).  You really try not to let anyone fade...you put forth that more than good faith effort to keep up the lines of communication.  But in the end, you just aren't mentally prepared for certain friends who end up fading.  

So you start to make friends with people who have only known you since "the diagnosis."  You reconnect with people from your past through social media.  They are really genuinely supportive, and in some cases, have turned into your own personal cheerleaders.  Some have wonderful kids with special needs...others have delightfully typical kids.... and some have no kids at all. And that is pretty cool. 

And then there are the times you run into someone that faded. Because you are now fully capable of putting yourself out there to advocate for your child, you find yourself screwing up every ounce of courage you can muster (because you know it will be awkward as hell), smiling and saying hi... only to have the other person look straight through you, as if you weren't even there. You sit in your car and wonder, "did that really just happen?" And then other interactions come with conversations that are brief and pretty awkward, albeit friendly. The hugs you receive are genuine and heartfelt, and you're left with pangs of bittersweetness.

But occasionally you just have to wonder...what the heck happened to those other people?? This happens throughout life, I suppose.  But you will always be grateful for those who stuck by you through to the other side of normal...

And Now a Word from the Peanut Gallery...

Thoughts During Autism Acceptance Month.  

So when you have a child with autism, people don't know what to say or do.  They seem to try to compliment you and/or your child, but often it just seems like a backhanded compliment.   Sometimes statements are made based on stereotypes, and we all know how that can go!! You tend to get a LOT of uncomfortable silences and stares... and consequently you wish you were invisible.  

Basically I just want people to treat me as normally as possible, and I believe that Lulu feels the same...

In any event, I thought I would share some of my "favorites" as far as comments go:

"You wouldn't know she's autistic just by looking at her!"  How about just telling me how CUTE or CLEVER my kid is instead? 

"God doesn't give you what you can't handle."  This statement makes me absolutely crazy.... does it mean that if I were a weaker person, I would not be dealing with autism??  So...PLEASE stop saying that. There is so much involved, and just when you think you have a handle on things, another curveball comes your way.  And then you just go with it the best you can.  It's a matter of just dealing with things as they come up, and trying to contingency plan knowing that something else may go awry.  Each day people are given their own curveballs, and oftentimes it has nothing to do with autism at all.  Most people just deal with whatever it is and move on.  That's simply what I do.

"Oh, I know that chelation therapy/gluten-free diets/jumping out of airplanes/spinning in circles will CURE autism."  I know that these things are said with the best of intentions.  With all due respect, please...just BE. QUIET. I'm already constantly bombarded with information, and it's difficult to sort through it all.  Instead, try suggesting that you have some information that you've researched, and that you'll share it with me if I would like.  It's showing that you care!

"What are your thoughts on the causes of autism?"  Unless you have an idea of where a person stands, or you genuinely want to know, please leave that one alone and say nothing.  Really.  It's such a red-hot soapbox issue, and I will not change my opinion.

"Wow, she's really a handful, I'll bet!"  Yes, she is.  But so is any child.  And quite frankly, I know many adults who are handfuls as well!  LOL.  But seriously, telling me how energetic my child is really leaves me with nothing to say except "yes."  

This is not to say that one cannot bring any of these subjects up...just know your audience first, or possibly just ask me how I'm dealing with it all.  And more than anything, please know that I genuinely feel appreciate knowing that you care!!

Small Progressions

Thoughts During Autism Acceptance Month. 

Today I celebrate small progressions. 

This week is spring break.  Lulu has already had approximately 587.5 OCD episodes. It's been simply maddening for all involved. 

When the OCD isn't running high, one thing she has wanted to do is sit with me and have me read/sing aloud from one of her song books:

I'll point to the words, and she sounds them out a bit. I've lost my voice, so it's challenging, and so Annie has been stepping in, which has been fantastic to watch. The coolest thing about this? Lulu initiated this on her own. Maybe we're on our way to reading independently? 

Realistically I know that this won't happen all of the time. But knowing that it did happen a few times? That's priceless.  

One baby step at a time! Go Lulu!!

What's It Like To Have Autism?

Thoughts During Autism Acceptance Month. The other day someone asked me what it was like to have autism. I'm clearly not able to answer that firsthand, but I did post this a few years ago (I'm not sure who the author is). It more or less lines up with how I imagine it to be.

What is Autism?

 

Imagine if…

You had a bee buzzing around your head

And someone asked you to say the alphabet backwards

 

Imagine if…

You were in the middle of a really loud rock concert

And someone wanted you to name all your aunts and uncles

 

Imagine if…

You were wearing three pairs of gloves.

And someone told you to eat a box of raisins one by one

 

That’s what things are like for me, a lot of the time.

I’m autistic.

 

Your brain is like the inside of a computer, full of connections and wires.

With messages to your body whizzing around telling you what to do

My brain looks the same as yours, except some connections work really well, and some work really differently.

And my brain wires can get crossed really easily.

 

So, if I’m doing something a bit funny looking… try not to laugh at me.

It’s just one of my brain connections clearing itself out.

 

And if I tell you something over and over… just ask me to stop repeating.

It’s just one of my wires plugged into the wrong socket.

And, if I freak out at some sound that you think is really normal… maybe help me get away from the sound.

It’s just because my ears have their own unique volume control.

And, if you think I’m ignoring you… I’m not.

I’m probably just focused on something else, like a tiny spider on the ceiling on the other side of the room.

 

Autism is a different way of seeing the world.

And seeing things the way I see them is awesome, but it makes me really tired sometimes.

 

So, I might not always understand what’s going on.

And, I might need time by myself to thing things through.

Or, I might crash or jump or swing for a while to straighten myself out.

Don’t worry if I don’t always do things the way you do.

Try to imagine what it’s like inside my head, then you’ll see…

 

I’m not being rude

I’m not being naughty

I’m not sick

I’m autistic

And I’m just being me.

Tantrums and Obsessions

Thoughts during Autism Acceptance Month.

There is a misconception that a meltdown is the same as an ordinary temper tantrum. A tantrum is generally driven by a "want" of something and is an attention-seeking behavior, whereas a meltdown generally results from a person who is overwhelmed or overstimulated (sensory overload) and will continue even if attention is not given.

I vividly remember her first full-fledged, out in public, tantrum several years ago. It occurred in Target when we were there working with her behavioral therapist (who is amazing, by the way). Lulu did not get to go to the toy section like she wanted to because we were working on waiting. Screaming, crying, and carrying on ensued, and we left the store (through some physical redirection).  

Lulu was not upset because the lights were flickering or the store was too warm or too cold. She wasn't hungry. There wasn't anything medically wrong with her. Lulu was angry because she was not allowed the immediate gratification of going to the toy section.

To ward off meltdowns, a lot of time is spent contingency planning. I try to guess what she would like and have it ready to give to her, especially if she's going a long distance. Redirection is used quite a bit,  and we also try to give a lot of choices, but sometimes for our own sanities, battles must be picked and giving in will win over. But giving in can't happen too often, because she's smart and forgets nothing. She knows that if we give in once, she will just have to keep at it long enough, and then we'll give in again. 

Lately the OCD has ramped up to a MACH 20. Lulu obsesses over things seemingly at the drop of a hat. She is unforgiving if we cannot produce what she wants immediately. If it's something she's had but lost, she'll overturn the entire house, flipping couch cushions, emptying drawers and shelves, throwing stuff wherever. She will incessantly ask for said item over and over until you just want to scream. She's even gotten crafty enough to steal your phone and try to order it online. 

Lulu also obsesses over things she sees on YouTube, thanks to everyone and their brother making videos of people playing with toys (WHY. IS. THIS. A. THING?!?) If you try to order it, it's often no longer made, so you are at the mercy of eBay, or private sellers on Amazon, who jack up the prices.... because autism isn't expensive enough already.  

It is, in a word, exhausting. 

But you keep going, because what else can you do?

One of those little MP3 players, but not that one, is the object of her obsession lately. 

National Siblings Day

Thoughts During Autism Acceptance Month.  

I love that National Siblings Day falls during Autism Acceptance Month. Cheers to Annie and Lulu.  You both have a tough road, but you travel it together, and handle it with grace, humor, and sometimes just a little brute force...

Interactions

Thoughts during Autism Acceptance Month 

Today has me thinking about how we interact with one another.  A lot of how we relate to people is from watching other people interact with each other, repeated exposure, learning from our mistakes, and reading body language.  It is quite a process when you think about it.

People who are on the autism spectrum tend to have a lot of difficulty with interacting and relating to others.  These are skills that must be learned, and it can be quite arduous.  Many autism programs have social skills as the main part of their curriculum.  Some kids on the spectrum are able to be integrated into the regular curriculum classes.  And if you are fortunate enough to live in an area where they have social skills groups/classes outside of the school setting, you can have your child participate.  

Often it is up to the parents of the autistic child to arrange for opportunities to socialize. For example, before COVID, we have had Lulu participate in Girl Scouts, special needs soccer, Special Olympics swimming, and sometimes the after school programs at her elementary school.  We have tried to have play dates with both her schoolmates and with neuro-typical friends. At each event we don't force her involvement the entire time...instead we try to have her do something little, like simply eat snack with the other kids, say hi to someone, or sing along with the group.  Little by little we are making progress...each time she participates a little longer.  It helps that people try to understand what we want to accomplish with her.  

So don't be afraid to try to talk to someone who has autism or who has a child with autism, or to arrange for a play date for your neuro-typical child and the autistic child in his/her class. You are helping out far more than you may realize, and plus, you never know what all of you may learn!