Special Needs Swimming Lessons

Thank you to The Autism Society for providing special needs swimming lessons for Brendon. 

A Few Good Words

It's easy to overlook the fact that Brendon is talking more, probably because compared to what would be "normal," he still talks very little.

However,  he can sing dozens of songs now,  and uses pieces of songs to say things,  because he really struggles to access the words he wants.   I've noticed in the past few days that he is answering me more and more.   It might be a simple "yes" or "okay," but it is an answer!

Today, when I stopped at a red light he started saying,  "go" and when I took too long to reach something he wanted he started saying,  "Awe, come on! " over and over.   Evidently,  I took too long chatting with my mom today too, because he said,  "Let's GO!" 

As you can tell,  he isn't a patient little guy.   He wants to be moving ALL THE TIME!  :)  I can tell he WANTS to talk now.   I used to wonder if that would ever happen.   I'm happy he's making progress,  no matter how slow it may be.   We are truly blessed.

Blessed!

Many times it's easy to see the negatives of autism.  All of Brendon's struggles with the tiniest of tasks is debilitating for all us.  But sometimes I can see the good.  Some days I don't have to turn off all the lights, put on dark glasses, and squint really hard to see the positive.  Sometimes, it's just there, staring right at me.  I treasure those moments. 

I love how Brendon simply thinks I am the ultimate, number one, queen of the universe.  He never questions it.  Mom is "It On A Stick."  Period.  He really doesn't see the need for other humans to exist, from what I can tell.  Dad is cool.  Sisters are okay.  Mom is on a whole other level.  He would prefer I be within ten feet of him at all times.  As I move around the house, doing laundry, loading the dishwasher, etc..., he picks up his toys and moves with me to play close by.  He never shows any displeasure that I only stay in one place about fifteen seconds.  He picks his stuff up for the umpteenth time and makes himself comfortable once again, quickly engrossed in whatever he's playing.  He falls asleep every night, with his little arms wrapped around my neck, snuggled up just as close as he can get.  His trust is complete.  I don't take it lightly.   I have worked so hard for his love and his trust.  These didn't come naturally for him, the way it does for "normal" kids.  For the first year of his life, he didn't prefer me to anyone else.  As long as his needs were met, he was happy. 

I'm so thankful to have him in my life.  It's hard.  Sometimes it seems impossible.  But clearly, we are a better family, individually and together by having him in our lives.  I see each of us always put his needs above our own and in return receive so much joy in his smiles.  Thankfully, God chose to send us this wonderful blessing.

E is for Egg!

This evening, as I sat down on the couch to watch TV for a few minutes, Brendon came into the living room carrying an open carton of eggs.  "E, egg!" he said, handing them to me. "E, egg."  I tried not to let the mental picture of ten cracked eggs override what he was trying to communicate.  I ran to the refrigerator and grabbed a hard boiled egg and handed it to him.  "E, egg," he said again and motioned to the stove which is his way of saying he wants to watch me cook it.  He loves to watch eggs cook, for some reason, boiled, fried, or whatever.  Anyway, he's known what eggs are for a long time.  Well, he's at least known ever since I got out of the shower about a year ago and found eggs dropped and oozing all over the kitchen floor and him standing there grinning and saying, EGG!"  But today he associated the letter E with the word and the object AND he came to me to share his revelation!  Or at least that's what I'm thinking.  :)

Giddy-up Bullseye!

This morning Brendon ran up to his dad, threw his arms around him, and said "Giddy-up, Bullseye!"  This means he wants a piggyback ride.  Now you have to understand, the last time we had Brendon weighed a few months ago, he was a whopping 75 pounds.  Add to this the fact that we are both in our forties, with deteriorated disks, arthritis, pulled muscles, etc..  But when your autistic mostly non-verbal five year old requests a piggyback ride BY GEORGE, HE GETS ONE! 
When Brendon does say anything, it can be hard to understand.  He gets close, but it still sounds like baby talk most of the time.  Occasionally, we hear him say things perfectly and clearly, but not often. John has been really trying to teach him to say, Bye, Daddy!  As Brendon and I headed out the door to school this morning, John reminded him to say Bye, Daddy!  "Bye, Bye, Diddee," he said in his sweet little voice.  All the way to school I thought about all the progress he's made in the past year.  Being independently potty trained is still the crowning achievement.  I thought about where we started, and how desperately I had searched for a book, blog, or story that I could see my own son in.  I wanted to know what was possible.  I wanted to read a real story about a severe, non-verbal kid, with absolutely zero receptive language, and parents who weren't able to afford 40-60 hours of ABA per week and wanted to know what that kind of journey would look like.  What progress would be possible?  What happens when you use the pitiful amount of hours your private insurance will pay for and combine it with anything the school system will offer? 
Now, years later, I realize that no two kids on the spectrum will have the same stories or outcome.  They may have a few similarities, but each will have their own unique journey even if they have similar behaviors and symptoms or even if they get the exact same treatments.  Still, every book I ordered or downloaded off of Amazon was about how with a specialized diet and hiring just the right therapist, VOILA!  No more autism!  The books I read about how to work with a non-verbal child were much more helpful and they are the only ones I still have today. 
If I could cure my sons autism, you bet I would in heartbeat!  But I can't.  And I don't think there's a human being alive who can.  He is how God made him.  I don't pray for God to make him not autistic.  I just pray for God to help him learn to communicate.  Mostly I pray for wisdom in how to teach him, work with him, and connect with him. 
Maybe someday, someone will be where I was, looking for a story they can relate to, and they will read something about Brendon.  Maybe it will give them hope to know that even if your child ends up on the moderate to severe end of the spectrum, it's going to be okay.  It's okay to not mortgage every thing you own to pay for every new treatment and therapy available.  Just do your best and never ever stop trying and hoping. 

Autism Can Be Scary At Times

For the most part, Brendon is a happy laid back kid.  He plays and entertains himself all over the house, dragging out his toys and playing everywhere.  He plays outside in his safe area, swinging, playing in his sandbox, and talking in his own language to all the trees and leaves.  However, as he gets older, any deviation in routine, refusal to let him do something he wants, or the attempt to get him to do anything longer than he wants to leads to meltdowns that can easily consume the rest of his and my day. 

This meltdown stuff is getting worse.  The other day, we were working in the yard and he was playing with the garden hose.  Anytime he gets really dirty outside, he immediately thinks he needs to go straight in and take a bath.  Halfway through the job I was doing, he came, took me by the hand, and led me into the house.  He went straight to the bathtub and started taking his shirt and pants off.  I could see he was muddy and was wanting to splash and play in the tub for awhile, but I really needed to finish what I was doing outside first.  "In a minute." I told him, trying to lead him back outside.  He wasn't happy, but I only needed about ten more minutes and I would be finished. 

This all led to him getting more and more upset a he kept trying to pull me back into the house and to the tub.  Eventually it became impossible to finish cleaning the yard with a child who weighs seventy five pounds pulling on me as hard as he could and crying.  When pulling didn't work, he started slamming into me, then he reached the point of no return, where nothing I do can stop him. He's like a runaway train and goes to another place in his mind, where all hope is lost, and I can't get through to him anymore. 

These times used to be few and far between and just ignoring him and letting him calm himself down seemed to work best, but lately he seems to keep escalating to the point where he's rocking, crying, and hitting himself as hard as he can, over and over again.  It's getting scary.  He's only five and I can't help but wonder what it will be like when he's ten or a teenager.  What will I do?  How will I physically handle him and keep him and everyone else safe?  The possibilities make me so sad.  At these times I feel so helpless. 

Right now, the best thing seems to be to turn on a fan (he likes the sound), put him in his bed, cover him with a heavy blanket, and sit beside him without touching him.  Sometimes it takes a couple of hours for him to work through it and get control of himself again, so everything comes to a stop where I'm concerned, for awhile.  Seeing him so miserable is heartbreaking.  At these moments I'm scared of what the autism is doing to him.  It's taking the happy boy I know and making him so miserable and unhappy that he seems to be trying to beat it out of himself.  I stay close, pray for him, and let him know I care, but not being able to stop it and save him from these meltdowns is excruciating. 

Fun at the Fair!

Every fall, around this time, we visit the State Fair.  Other than the delicious hot funnel cakes and frosty lemon shake ups, it's not really my thing. My kids, on the other hand, look forward to it all year. 

As Brendon has gotten older and his autism has become more "pronounced" or "severe," each year we have faced a new set of challenges at each visit.  At one time, just the commotion, lights, crowds, and noise were too much.  The next year he relaxed just enough to discover the carousel.  Then, last year he figured out the rides were so much fun that getting him off meant a meltdown and a fight to pry him off of small airplanes and out of train cars while parents and kids rolled their eyes, muttered under their breathes, and waited impatiently. 

This past Friday night, I took him and it was by far the easiest visit so far.  I had anticipated a rough time with transitions from one ride to another and since he weighs 73 pounds, I knew I would be pushing my limits to win every battle.  I decided against taking the stroller or wagon, and opted for the harness and leash instead.  Grandma had purchased him an armband so that we wouldn't have to worry about tickets, and off we went! 

At the ticket booth the lady asked him to hold out his arm and so of course I had to explain about his non verbal autism and that he would probably have an issue with it no matter where we put it.  She opted for his ankle and sure enough he immediately dropped to the ground and feverishly tried ripping it off.  She directed me to the office and the nice lady there said we could give the stuffed monkey on his harness a "collar."  Armband crisis averted. :)  I really wanted to hug the lady when she said she would call around and let all the rides know we were coming and to watch out for him. 

When we got to the first ride, the operator smiled and said, "I've already been told about him," and it continued everywhere we went.  Almost every ride waived the height rules if he was too tall or just went out of their way to make sure he had extra time to load or unload and transitioning was no problem at all!  He understood that it was okay to get off because it meant we were going to get on something else! 

I honestly don't expect him to get preferential treatment everywhere he goes, but it sure did make it so much more relaxing and enjoyable, so I'll take it any time we can get it!  ;)