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!  ;)

New Classroom, New Teacher!

We officially survived Brendon's first day in his new classroom with his new teacher.  One of us acted like a big baby and cried and carried on for hours.  It was ridiculous!!!  That person called another autism mommy and received some much needed encouragement, so we were able to make it through our stressful day.  The OTHER one of us did great!  They didn't cry at all and were very brave.  The one who cried and threw a fit is getting an early bedtime...or I hope so, anyway.  ;)

Driving Me Crazy!

  Today was one of those days that I hit a wall.  One of those days that I've had all of the autism I can possibly stand.  I'm done.  Thankfully, I made it until everyone fell asleep and now I plan to write down my thoughts and feelings and then recharge for tomorrow. 
  I've had enough stimming, teeth grinding, jumping, destruction, body slamming, putting his hands in the toilet, fussing, pinching, falling in the floor, mess making, bouncing up and down, and spitting on his hands for one day.  It never stops.  It's every waking moment.  I love him.  Oh, do I ever, but I just want to cry.  Why does it have to be so hard?  Why him?  Why?
 

Stop Licking Your Flip Flops!

As parents, we inevitably hear ourselves say things that we never thought we'd say.  As parents of kids with autism, this can reach a whole new bizarre level of crazy utterances, that we don't say just once, but probably hundreds of times a day.

A fly on the wall at our house would hear things like, "Get your fingers out of your _______!!!"  You can insert literally ANY word in the blank.  The most commonly used line:  "Where are your PANTS?"  Two seconds later:  "WHERE ARE YOUR PANTS?  GET YOUR FINGERS OUT OF YOUR...!!!

I almost choked on the words, but I'll admit I've actually said, "Stop licking the walls!"  This is the worst part.  We were in the bathroom at Walmart. 

"Stop licking the windows.  Stop licking the dirt off your feet.  Stop licking the tops of ALL the cookies.  Stop licking me.  Stop pinching me.  Stop pinching the dog.  Stop, stop, stop, STOP!"

In comparing notes with other ASD moms about things we say that no one would probably believe, my favorites are:  "Stop licking your flip flops!  Get your tongue out of the dogs nose."  And last, but not least, "Stop licking the BEES!"

These kids keep us on our toes and always thinking outside and every which way around the box! 

The Between

Unlike when Brendon was first diagnosed, I now know there are a million hurdles and milestones between "non verbal" and "verbal."  I used to literally dream that he spoke a word and would wake up so excited! 

Eventually, he actually began to repeat a few words.  Now, I hear him practicing lines from movies and singing songs with his iPad.  He can speak words now, but can't answer yes or no, most of the time, to a simple question. 

I'm still dreaming of the day he can speak to me.  The day he can tell me what hurts or why he's crying.  Tell me what he likes and why he likes it.  I'm still dreaming!

Mommy

I was called, "Mommy" today.  It was unprompted, very clearly, and because he wanted something.  This is the first time, in five and a half years, I can ever remember him saying the word mommy.My heart feels like it has wings!
Oh, and he said it like six times while he took my hand and led me to where the plug had come out of the outlet.

Putting on a Brave Face

As parents of kids with special needs, we have to guide them down a path that is sometimes just as new and scary to us.  We have to put aside our own fears, take their hand, and lead them on a journey that we didn't foresee or plan for.  We spent so much time dreaming of how their "normal" life would be, and all of the activities we would teach them to enjoy or experience with them.  Our reality is that we have to deal with the loss of what we'd hoped for and at the very same time help them navigate a life filled with pain, frustration, tests, doctors, therapists, medical procedures, and surgeries.  We have to teach them that we care, and this can be a huge task with a very handicapped child or one with limited communication.  It's a long process, learning to face our own worst fears and helping them to be brave when we feel anything but.  Some days are black bottomless pits of despair.  Thankfully, and by the grace of God and the prayers of others, we are able to keep going for our angels. It only takes a good report from a doctor or therapist or seeing the slightest improvement to have us soaring in the clouds once again!

Autism and the Dentist

We made the four hour trip to Dr. Rose's Pediatric Dentistry.  We attempted the extractions and filling without sedation and guess what?  He did GREAT!!!  We've had to do sedation for dental work before, but this time
I didn't even have to hold him down!  I held his hands during the shots, but he was a trooper!  Our pediatrician had prescribed him Ativan for this visit and we think it REALLY helped him to not be as anxious.  Dr. Rose was SUPER fast and so kind.  We were glad to have it over with.  The pictures were taken on the way, right after the procedure, and him completely exhausted when we finally got home.

Selfless Siblings

Many special needs kids have extra special siblings who daily go above and beyond to help out, protect, and care for their brother or sister.  Many of them get little attention or praise for all their efforts because mom and dad are simply too exhausted and busy to notice all the little things they do.  These "normal" kids selflessly put the needs of their special sibling(s) above theirs and never complain that so much money, time, and attention go to help the kid next to them, while their own needs must come second.  Our daughter Lauren is such a kid.  She was born into a family with two older sisters each with special needs and into their world of therapists, specialists, counselors, doctors, etc...  Then, when she was just 18 months old, her brother was born.  It was apparent from the beginning that he was different from other children and needed lots of round the clock attention and care, since he almost never slept and cried for hours on end.  When he was diagnosed with autism at 23 months she was officially the only typical kid in our house, and that wasn't in her favor.  I was used to mothering in unconventional ways and dealing with one crisis after another.  What I wasn't used to was a kid who didn't need to be told everything fifteen times in a very gentle voice and with visual aides.  I've had to learn to listen to her when she stops me and simply says, "I get it, Mom.  You only have to tell me once."  She loves her siblings with all her heart.  She faithfully goes with me on twelve hour trips every other weekend to visit our daughter who lives in a hospital four hours away.  I've seen her many times grab her brother when he was headed toward danger and hang on for dear life while screaming for help as he dragged her toward a street.  She's such a blessing to all of us, but she's made it her mission to teach and help her brother.  She stands bravely by in the grocery store as he has meltdowns, grabbing my purse, his shoes, handling the cart, never embarrassed, she handles it like a six year old pro.  I thank God for sending us this precious little girl who has such a loving and giving heart.

More Fowers!

It was a BEAUTIFUL day for a bike ride.  I stopped and picked a few weeds for Brendon to fiddle with while he rode.  Before long I heard him saying, "More fowers!"  So of course I stopped and got him more "fowers" every time he said it.  Our sweet dog Pepper goes every step of the way whenever we go riding.  She's not about to let Brendon out of her sight!  :)

Playing in the Rain

Brendon loves to experience things from head to toe.  Running through the raindrops and splashing in the puddles makes him so happy!

Autism Induced Exhaustion

However rewarding being the parent of a child with autism may be, it's also exhausting. Indescribably so.  There's the hypervigilance required to constantly (and I mean 24/7) keep your child from escaping and wandering into a street or drowning in a nearby pool, burning themselves on anything hot while you're cooking, turning on a faucet and flooding your entire house, and emptying the contents of your refrigerator into the kitchen floor, all in the amount of time it takes you to run to the bathroom, When you combine that with the never ending insomnia that usually accompanies the autism diagnosis day after day and year after year, it can honestly make you feel like you're losing you're mind. 

When I meet a parent who raised a child on the moderate to severe end of the spectrum to adulthood, even the fact that they're both alive seems awe-inspiring.  I mean it.  That the parent actually kept their child from drowning, getting run over, etc... for that many years on almost no sleep gives them almost superhero status in my estimation.  :)

Adaptive Bike

A few months back, I entered Brendon in the Great Bike Giveaway Contest for an adaptive bike.  Many friends and family were nice enough to vote for him and when he didn't win a bike, several said they wanted to help get him one.  Several people sent money, either by mail or online, and with grandma and grandpa pitching in what we were short, WE GOT HIS BIKE!  :)  We are so thankful to everyone who helped purchase it.  He loves it.  After he learns to balance and hold himself up on the bike we can start teaching him to hold onto the handlebars and how to do the pedals.  All of the seat supports are removable and the pedals have straps for his feet.  We're on our way!

Memorial Day

Today has been a good day in our autism world.  Brendon "helped" Daddy grill out by standing close to the grill and shouting "HOT" every time John opened the lid.  And he repeated "Don't touch that!" Every time he heard us say it.  You have to understand that this time last year he stuck his hand into the hot coals of an open grill last year and so we spent the rest of that afternoon in an icy pool trying to get Tylenol down him without making him throw up too much.  It was awful. 
Today, we talked him into tasting the watermelon, and even though he called it "apple" we were thrilled! 
John and I both agree that he finally WANTS to talk to us, something that he hasn't been interested in before.  He has a few words that he's been taught to say and he uses them to request what he wants to eat or do, but lately, when he doesn't know what to say, he just starts repeating everything we say.  He even repeats laughs, coughs, and sneezes!  It's sad and funny at the same time.
He's been more interested in what we're doing, lately.  For the first time, I can see he's actually interested in repeating the words for the actions of what we are showing him.  It gives me hope.  Hope that he will continue to make progress and that next Memorial Day he'll be talking to us and interacting with us even more. 

If only...

He can't talk my leg off or ask a thousand questions like a typical five year old can.  If I could just know what he's thinking...

Circle of Water

Two of my sons favorite things: circles and water, and when you combine the two he's in heaven!  He kept motioning for me to help him climb in, and saying "watau" over and over.  I think he might have said "SWIM" a couple of times.

Mysteries of Autism

I love mysteries, and it's a good thing, because I've been handed one of the all time greatest mysteries of the universe, the mind of a son with autism.  He intrigues me, frustrates me, amuses me, and drives me nuts all in the same day. 

He can read phone numbers perfectly, but is always stumped when he comes to a zero.  Does his mind confuse the zero with the letter O and a circle?  I don't know.  He knows all of his letters, but only in uppercase.  He can read some sight words, but only if and when he wants to.  He can be hilarious, but there are so many things I see and hear him do that he won't do at school or therapy.  This is so frustrating! 

I see all the time that we love and accept him exactly how he is.  We adore him.  But it's a fine line we have to walk between accepting his limitations and pushing him to do the things he can do, but doesn't want to try on his own.  Most of his life, from about 20 months until now at the age of 5, he has been in therapy of one kind or another to push him a little farther ahead than he naturally wants to go.  Has it been worth it?  It depends on how you look at it.  It hasn't cured him of autism.  He hasn't made any huge strides in therapy.  I think he learns much more at home than he does in therapy, but we have to be a team.  I can't do it all at home, school can't do it all, and neither can his therapists.  If we're all teaching him the same things, though, it eventually starts to stick.  A little.  Sometimes.  :)

Motherhood

The second John and I married, he wanted kids.  I wanted to be a mother, but not immediately.  As time went on, we began to realize it would be complicated.

When we had been married for about two years, we went to see an infertility specialist.  We underwent lots of tests and I was put on Clomid.  I did the temperature charts and received progesterone shots month after month.  No results.  Eventually we were told that IVF would be our next step.  It was at this point that we began to consider adoption. 
We found an adoption agency in Memphis and attended orientation.  Here we learned that the waiting list for each baby was 1-2 years.  On the way home from the meeting, we noticed a billboard advertising fostering to adopt and it seemed to make sense.  After all, didn't these kids need us more than the ones with the long waiting lists?

Within six weeks we had attended foster/adoption classes and were matched with a beautiful four year old girl.  A few weeks after that, we were asked if we also wanted to adopt her little sister who was thirteen months old.  We said yes.  Both girls birth mother agreed to sign them directly to us for adoption since her parental rights were going to be terminated.  Six months later their adoptions were finalized and we were officially parents!

For me, adopting our girls had completely fulfilled that hole I'd had in my heart, but we always planned to someday adopt a boy.  We told the girls that someday they would have a brother.  At one point we fostered a nine month old little boy with special needs, but he was eventually returned to his family.  Now and then, we fostered other children, but never any with the goal of adoption. 

John was gone for a year on active duty and when he returned he wanted to go ahead with IVF and try just once more to have a baby.  I agreed, and we began the long process.  I traveled back and forth to Nashville for my doctor appointments, learned to give myself shots, and literally put a while box of hormones and medications in myself in about six weeks time.  I became very ill at the end and we learned I had hyperstimulated.  Instead of making the expected 8 or 9 eggs, my ovaries had made 42.  I was hospitalized for about two weeks in Nashville.  By the time I returned to the clinic for a pregnancy test, my hopes were not high.  I was so sick.  The medications had poisoned my body.  I felt barely alive, and I didn't see how the three embryos could have possibly survived.  I was correct.  The invitro had failed. 

John was depressed.  I was grieving something I never even had.  It was a rough time.  John and I eventually separated for a few months and the girls and I lived close to my parents.

A few months later, we decided to start putting the pieces of our family back together.  It wasn't easy.  Slowly we started to heal and life seemed to be returning to normal.  My cousin called me from Arkansas and announced she was finally pregnant!  She described how she had been sick and had finally decided to take a pregnancy test.  Everything she said sounded weirdly familiar, so I decided to give it a try.  Why not?  It was POSITIVE!  I called John, but he didn't believe me.  Not after 12 years.  I took another and he started to hope it was for real.  The doctor's office confirmed it and scheduled our first sonogram.  My mom drove all the way from Illinois down to Tennessee to be at the first sonogram.  We were so excited, but I was still uneasy.  It just couldn't be, could it?  Not this easy. 

I remember being afraid to be happy.  And the look on the face of the sonographer confirmed my feelings.  She told us that the baby measured at 11 weeks, but that there was no heartbeat.  I wasn't surprised.  Sad, but not surprised.  
A tornado hit Newbern and Dyersburg Tennessee at the same time I was scheduled for a D&C.  Our house had a lot of damage that wasn't covered by insurance and we were heartbroken.  We decided to move to Illinois and start over. 
Shortly after moving to Illinois, I suspected I might be pregnant again.  I was right.  I left John a card on the table to find when he came home from work.  We were both cautiously happy.  Throughout an uneventful pregnancy I never completely relaxed or let myself believe it was really going to happen.  At every sonogram I secretly expected bad news.  When Dr. Gates finally laid my daughter on my breast I cried.  He never understood why I kept saying, "She's really REAL!" over and over.  But I didn't care.  God knew it was the first time I allowed myself to believe in her.  To believe she could actually exist.

Eighteen months later, our next miracle was born.  We finally had our son.  God has been good.  He knew my journey into motherhood would be long and difficult, so he made it more rewarding.  He allowed me to appreciate it more than some people might, because I never take one second of it for granted.  I feel like every second of motherhood is a gift and an unexpected bonus.  Sometimes I'm completely exhausted raising children who have so many special needs, but I am still in awe that God thought enough of me to entrust me with their care. 

Baby Steps!

There are teeny tiny steps Brendon takes forward that eventually do add up, but it takes looking back quite far sometimes for me to see that there is progress.  Also, Brendon has always had periods of regression that don't seem to correlate with anything.  When you mix the super slow progress and the regression it gets quite discouraging. 

Sometimes, however, he just does something new.  Period.  No regression.  Those are the times that keep me going.  Tonight, he did something new.  We celebrated my oldest daughter's nineteenth birthday with cupcakes and just for kicks I had her to blow out a candle on one as we sang the birthday song.  Now you have to understand that Brendon has never shown the slightest interest in any of his birthday cakes (he doesn't even eat cake) and he has never blown out a candle.  Tonight I caught him with the old discarded candle trying to stick it in the top of one of the leftover cupcakes.  I told him to stop and so he motioned that he wanted it in the cake and then he pretended to blow on it.  I of course spent the next hour lighting it over and over again so he could blow it out. Then, he showed us that he wanted us to clap our hands and cheer for him every time he did it. 

Next birthday he can blow out the candles on his cake!  Woo hoo!  Better late than never!

Out of the cart!

We stopped at the grocery store this evening and for the second trip in a row Brendon walked beside the cart for the entire trip.  This is BIG!  Before now, I've had to put him in a cart with his IPad on every trip.  With my six year old daughter's help we made it through the checkout without him getting too far away. 
An elderly man behind us noticed Brendon dancing around and flapping his hands happily.  He spoke directly to Brendon and said, "Oh, so you're a karate kid?"  I smiled.  Of course Brendon showed no indication of hearing or understanding him and continued his happy flappy noises, so I said, "No, he's a kid with autism."  The gentleman grinned and said, "So YOU don't get any sleep, huh?"  Maybe he had a family member with ASD, but hurray for autism awareness!  :)
We made it home and the kids are enjoying playing in the backyard.  Lauren is spinning her brother on the swing, something she knows he loves.  He's laughing and saying, "Go!" every time the swing stops.  It's a good day.  A really good day.

Our Dog

About two years ago, a starved, hairless, beaten down dog who had obviously recently had puppies was dumped out in the country around where we live.  She was so afraid of humans she ran off if she saw one of us even look out the window at her.  We began leaving food out for her and slowly moved it closer and closer to our house.  When we finally got to see her she was covered with old and new wounds and was infested with fleas and ticks. You could see every bone, but her attitude was even sadder.  She was so afraid of us that she would cower and shake.  Today, that poor dog is my son's guardian angel.  She seems to know he needs extra watching over.  If he's out playing in the rocks or swinging you can bet she's crawled under the fence and is laying close to him to watch his every move.  She's a pit/shar pei mix and a sweet and loyal member of our family who does her part to watch out for our autism angel.

Do I Allow My Autistic Son to be Used in Research?

The answer to this is:  Yes, with stipulations.  Brendon has been involved in two studies so far in his five years.  I do say "so far" because in the future, as long as a study fits our guidelines and his abilities, I would probably put him in it.  Some people will think this is horrible and that my child is being used as a guinea pig.  Let me explain my point of view.

In the first place, a study must be harmless to him, not exacerbate any issues he already has, not irritate him emotionally or physically, and must not be a burden on our family.  Second, it must have a potential to benefit other disabled people in the future.

The first study simply involved him wearing a small unobtrusive recording device so many hours a day to record the sounds he made.  The one he's finishing up now is a behavioral study.  I take him once a week to a one hour session.  The idea is to see whether he will continue to use a method of communication he chooses longer than an alternative when all reinforcements are removed.  I sit on the other side of a two way mirror and watch every second of every session.  Let me tell you what it amounts to.  In essence, Brendon plays with bubbles, play dough, or an IPad for an hour, but he has to request whichever item in some way to get it.  Meanwhile, he is being videoed and three people with computers are taking notes on his every move.  He has a lot of fun and hopefully this information can someday be used to tailor therapy for other disabled people. 

What is our benefit?  There is no monetary compensation, even for gas, but the doctor heading the study has been willing to give us ideas and input on some of Brendon's problem behaviors. 

So do I allow my autistic son to be involved in research?  For me, it's a YES! 

Color Run!

This weekend we joined other local families and individuals for the 5K Color Run to support our local Autism Society.  Thanks to Grandma for providing a soft comfortable wagon for Mr. Brendon to ride in.  He made it the whole 5K and even got a little bit of color on him! 
It was so encouraging to see all the support for our kids with autism.  Sometimes it's easy to feel so alone in our struggles.  To see so many of the people in our support group and from SIU Center for Autism Spectrum Disorders was great.  I was thrilled to recognize and meet Ryan, an adult with autism, who was one of CASD's original clients and is now a thriving and talented young man. 
Thanks also to my sister, her husband, and all four kiddos for being a part of Team Brendon!  :)

Tiffany

Our oldest daughter, Tiffany, will turn 19 in a few days.  We were privileged to adopt her at the age of four.  One of her diagnoses is autism.  She is higher functioning than our son, Brendon. They have many similar issues, but at different levels.  I haven't posted much about her disabilities on my personal Facebook page because at her age and cognitive level, I felt she should have a choice in what and how much people knew.  I discussed it with her and she has given her permission for me to post about her on this page.  If that changes, I will quit. 

Today, I took her to the doctor's office for a physical for Special Olympics.  We had a two hour wait to see the doctor and then stopped for lunch before I took her to school.  This is her junior year and she is in the REACH program at her school.  This program trains and supports her academic and functional skills for independence. 

Through the years she has struggled with speech, pica, swallowing, sensitivity to clothing, borderline IQ, understanding social rules and cues, understanding danger, etc...  There are honestly too many things to name, but our hope is to see her achieve as much independence as possible. 

Her progress hasn't always been smooth and it's even been under protest from time to time, but we refuse to give up!   Hopefully, someday she will understand how much we love her.

Easter Update

Surprise, surprise! He didn't fight us getting dressed at all!  :)
However, he hasn't felt well all day.  I'm not sure what's wrong just yet, but he has serenaded us with his unhappy wailing most of the afternoon and nothing I do makes him happy.  I attempted over and over to get a good picture in his dress clothes, but as you can see, he just wasn't feeling well.

Easter- Autism Style!

Brendon woke up first thing this morning, put on his Spider Man shoes, and went out to swing.  He wasn't even aware that it's Easter, as far as I can tell.  Sometimes it makes me sad, that he never looks forward to special things, like Christmas or his birthday.  I've had to make peace with the fact that it's okay for him to spend special days celebrating in his own way or not at all.  I do insist on a few things that are important to me, but other than that... If he wants to swing on Easter rather than hunt for Easter eggs, who cares?  Not me.  Well, not much.

Something that I will insist on, later today, is that he wear a real outfit (not shorts or sweats) to Easter service at church. From all indications, and by that I mean when we tried it on him, it will take every ounce of strength John and I both have to get a polo shirt and a pair of jeans on him.  It will be about a 30 minute fight and he will be upset and teary for at least a couple hours afterward.  I'm not looking forward to it.  At least he will like the hat I bought him to wear.  Or as he calls it, his "at."   I'll post a picture later, if we are successful in getting everything on him at once.  :)

5 in1 Doctor Appointment

John and I took Brendon to a doctor's appointment this morning with his pediatrician.  It was our usual 5 in 1 appointment.  I wait as long as I can to take him in, so when we go, I always have a list on my phone to go over with her.  This time I had even bookmarked pages on autism blogs and Google searches for medications.  She's always patient with me and my lists.  She seemed happy to look over my research and used it to help us make our decisions about med changes.  She gets an A+ in my book.  :)

We haven't been able to get height, weight, temp, blood pressure, or anything on Brendon at doctor appointments in years!  We've been guessing for a long time.  We usually push him in his special needs stroller, no.1 so that he's not trying to escape, and no.2 because he views his stroller as a safe haven when he's scared or has a lot of anxiety.  Well, today we decided to change it up and let him walk.  It was sort of amusing to watch people's reaction as he twirled, flapped and chattered in the line to check in for his appointment.  His loud noises were proof of his nervous excitement, to those of us who know him well.  Expressions ranged from pained annoyance to exasperation to downright amusement. 

As soon as we were called back and Brendon saw the scales his noises changed to unhappy wailing sounds.  However, to my utter and complete shock he allowed the nurse to weigh him, measure him, CHECK HIS TEMP (WOW!), and even do the blood pressure cuff thing on his arm!  After we talked to the doctor we had to take him down to the lab to have blood drawn.  I was a nervous wreck!  I've seen five nurses on top of him  trying to hold him down to just get an IV in him in the ER.  And they didn't succeed.  So I was scared.  But to my surprise it wasn't bad.  We had two quick and good nurses and although he cried, he didn't fight much at all.  I was one happy mommy when it was all over!   :)