December 26, 2014

How Did You Know He Has Autism?

The most common question people ask me is this: How did you know he has autism?  This is an understandable question.  Most people are pretty unfamiliar with what autism is - thus, my blog.  Brandon doesn’t have any physical characteristics of a disability.  In fact in the begining, some of my friends and did not believe me, and made me feel like they thought I was trying to make something out of nothing.  It’s not obvious that he has autism until you spend some time with him.  Even then, (when he is having a good day) people unfamiliar with developmental stages at his young age don’t realize he is delayed unless they see him alongside another child his age.  Often when we’re out and about, such as the grocery store, someone sees my adorable little boy and tries to say hi to him or ask him a simple question.  I don’t go into Brandon’s whole story to a stranger in passing, so they probably think he’s just shy…or rude!

So how did I know? The truth is, I didn’t know...not at first.

A Regular 15-month Check-up
When I took Brandon to his 15-month check-up, our doctor asked a series of standard questions for that age.  He was saying "mama" and "dada" but, when she asked if he responded when I call his name, my answer was no.  “He doesn’t even look.  In fact, it’s something I wanted to ask you about.  I know he can hear though, because he comes running when he hears his favorite TV show.  Here watch this,” I told her.  “Brandon!” nothing. “Brandon!  Brandon!,” I said louder.  Still nothing.  She told me not to be alarmed, but she wanted to give me an M-CHAT screening to fill out about Brandon.  I had no idea what that was, but I remember my face feeling hot and flushed.  How could I not be alarmed?  I didn’t even have any idea what an M-CHAT was.  All I knew is she needed to test my child for something wrong with him.  She explained that it was an autism screening tool.  These were questions about his development.  I relaxed completely.  My child did not have autism.  (Not that I even actually knew what autism was.)  I was not worried about that.  But I would take the questionnaire anyway.  I started to read the questions.  Some of them, I knew he should be doing by now.  For example: If you point at something across the room, does your child look at it? Or, does your child show you things by bringing them to you or holding them up for you to see - not to get help, but just to share?  He didn’t do any of these kinds of things.  At all.  I still wasn’t worried though.  He was only 15 months old.  Children develop and different rates.  There were so many things he did far ahead of his peers like holding his head up, rolling over, sleeping through the night, walking, etc.  At the time I suppose I didn’t realize these were all gross motor skills.  He still has superior gross motor skills and strength.

My doctor told me that the screening did come back positive, although it was low-risk.  She was adamant that this did not mean he has autism.  She recommended that he have a developmental evaluation.  I called right away to schedule an evaluation at the children’s hospital where we lived at the time.  In the meantime, he had a hearing test which was inconclusive.

The Initial Evaluation
He was 17 months by the time we had the evaluation.  I would come to realize that even though early intervention is key, everything takes forever to get started.  After a series of activities, a team of doctors and therapists told us that autism is not typically diagnosed until a child turns at least two but, “We really do not think he has autism.”  I was so relieved.  They were diagnosing him with a global developmental delay” and said that we should get started with early intervention services right away.  “Well, that makes sense.  Technically, he is delayed developmentally,” I thought, still not alarmed.

Eventually, I Just Knew
By 18 months, Brandon had started early intervention with a developmental therapist.  By the time Brandon started those early intervention services, three months after our initial concern, I knew.  I had done enough research to know that my son had autism.  He hadn’t “caught up.”  Three months is a long time at that age, developmentally.  I had come to realize there were many other parts of his behaviors that lined up with autism.  He still didn’t respond to his name.  He didn’t understand anything I said.  He understood, “No!” but it was really just the tone of voice that he understood.  I could have replaced the word “no” with anything.  He obsessively lined like items up by threes.  He spun in circles over and over.  His eye contact was very minimal, and he seemed to be in his own world.  Most noticebly, he stopped saying "mama" and "dada" and he was not saying any words.  Today, at almost three-and-a-half he only has a couple of words, and has to be prompted to say them most of the time.

Throughout this time we had two more hearing tests, which were again inconclusive.  They were in a tiny room, and they expected him to react to things I knew he would not be interested in.  We needed to rule it out though, so the next step was an ABR.  This is a hearing test where they put him under anesthesia to track his brain waves and see if there is a hearing problem.  We needed to get this done before his next evaluation.  To be honest, I was hoping I was wrong about this too.  I was actually praying that my child had a hearing problem.  What a weird thing to say.  A hearing problem was easier for me to imagine coping with than autism.  The test came back saying he had no hearing problems.  It was the epitome of a bittersweet situation.

Your Child Has Autism
I called and made an appointment for an evaluation for less than two weeks after he turned two.  By that time it was just a matter of getting an official diagnosis.  I didn’t tell the psychologist that I “knew” he had autism.  I didn’t want to put any ideas in her head.  I was still praying that he didn’t.  She went through everything, and it told us it was clear that Brandon has autism.  I said, "Okay.  Where do we go from here?"  When we discussed next steps, she mentioned that I didn’t seem surprised and I was handling it well.  I then told her I was expecting it.  I was hoping it wasn’t the case, but I was prepared for it.

It wasn’t this major shock like many people have when their doctors said, “Your child has autism.”  It was something I gradually came to terms with as I observed my child from a different perspective.   I may have been prepared for the diagnosis, but I had a lot to learn about autism.  I still do, as he goes through different stages.

Brandon was diagnosed early..less than two weeks after he turned two.  This is a pretty early diagnosis.  I am not modest when it comes to admitting that I am proud of this.  I know how easy it can be to get caught in the denial stage.  If I hadn’t had a pediatrician that caught the mere potential for a developmental disorder, there’s no way Brandon would have been diagnosed as early as he was.  He certainly wouldn’t have gotten early intervention services as soon as he did.  I will be forever grateful to that doctor.  She changed everything.


December 19, 2014

Merryish and Brightish

May your days be merry and bright! Well, not every day that we did a Christmas activity was merry and bright.  But it's okay.

This year we bravely made our way out to a Christmas event at our church.  It was pretty fantastic.  There was snow, sledding, food trucks, and kinds of fun activities.  Brandon did not do so well.  We did go down the sledding hill a couple of times, but I quickly was reminded that he really has no idea of the concept of waiting.  Having to wait in line is our doom.  He truly does not understand that I am not preventing him from doing something fun, but that we just have to wait our turn.  He was falling out.  (This is what I call his meltdowns when they're behavioral, not sensory related.  There's an important difference, which I will explain in another post.)  We didn’t stay long.  “Leaving already?” an unknowing volunteer asked, innocently.  “Yeah,” I replied with a fake smile and a pang in my heart as I looked over my shoulder at all the family fun happening behind me.

On another night went to Brandon’s family night at school.  Again, we didn’t stay long.

Going to see Santa was perfectly fine, though.  His dad took him and was cleverly armed with mini marshmallows for Santa to give him.  He sat on Santa’s lap and waited to take a picture.  I just never quite know how he is going to react in a given situation.  It doesn’t stop us from trying.  It’s just disappointing when things don’t go the way I hope.  Part of this is behavioral.  Like many young children, he wants to do what he wants to do.  When he doesn’t get his way, he lets you know he is pissed.

Just like any other parent, making these holiday memories is important to me.  I want to look back on the holidays with Brandon and remember fun moments.  I don’t want to remember the time he was kicking and screaming and I had to carry him out of an event like a sack of potatoes.

The key to this is making happy memories in our own way.  Brandon flips out when he can’t play with the ornaments on the tree.  So, he has his own tree about his height with unbreakable ornaments that he can do whatever he wants with.  My memory will be of him enjoying his tree.  He may not care to help me put ornaments on our tree, but he likes to spin the ornaments on his own little tree.  So, I will join him and spin away.  That will be my memory.  He won’t rip open all of his presents on Christmas morning with a big grin on his face like all the other kids.  I will have him open one present every hour or so to keep him from getting overstimulated.  Instead of memory where he had a meltdown from being overstimulated by all the presents, wrapping paper, and people, I can look back at the memory of him opening that one present that he really loved and played with all morning.

Most the time I have to learn these adjustments the hard way.  Even though we don't do many things the way I dreamed of, they are worth doing just a little bit differently in order to make memories we can cherish.

December 13, 2014

On the phone at the park...yeah right

 

I’ve seen a lot of chatter recently about cell phones, and the call to action for parents to get off their phones, as quality time with their kids is a blur around them.  It’s funny, there are so many things that being a special needs parent changes.  When asked to think of something of the top of my head, I always pause.  Maybe it’s just because there are so many, it’s hard to know where to start.  How about this.  Just name something you do with your kid, and I’ll tell you how it’s different for me…how it requires accommodations, extra planning, or all-together avoidance.  That’s an easier way to explain it.

So, this cell phone thing…I’ve seen three articles recently centered around being on your phone while you are with your kids at the park.  And here’s how this little blogosphere controversy is different for me…it’s just not an issue.  I don’t have the luxury of even considering if I want to get on my phone.  (Blessing in disguise?)  If I get on my phone for even ten seconds, my son could be halfway across the parking lot or climbing a tree.  Calling out “stop” or “come back” will likely do nothing.  He is fast and he cannot tell someone if he has lost me.  I have to be two steps behind him.  He is fast.  I know I have said that twice now.  He is.  He is fast and he is strong.  I have to watch him like a hawk.  Literally.  I do not take my eyeball off of him for even one second.  If I get my phone out to take a picture of him, I hold his hand while I get the camera ready.

I’m not saying I’m Miss Perfect Mom who is never on her cell phone when she could be playing with her kid.  When we are in the safety and comfort of our own home, I certainly have more flexibility.  Full disclosure, I am guilty too!  This is just one of many things that carry a different meaning for a special needs mom.

December 5, 2014

As Long as it's Healthy. Dear Mommy-to-be...

Dear Mommy-to-be,

Someone asks you, “What do you want?  A girl or a boy?”  You reply, “I don’t care, as long as it’s healthy.”

Let me ask you this: If it’s not healthy, then what?  What about all the moms and dads who have babies who were not born healthy?  Are their babies less?  Unworthy?  Too much trouble?  A shame?  A tragedy?

I know you, so I know this is not what you mean.  What you mean to say is, “I don’t care, but I do hope and pray I have a healthy baby.”  Because if that turns out not to be the case, you will not love that baby less.  Cut out the “as long as.”  It changes the meaning of what you intend to say.  Unconditional love holds no ultimatum, and there should be no ultimatum with motherhood.

November 27, 2014

5 Things Every New Autism Mom Should Know

There are tons of blog posts out there for autism like…
"Things Not to Say to an Autism Parent," or "10 Things You Didn’t Know About Autism," or "10 Things You Should Know About Autism."  This post is about the brand new Autism Mom (or Dad!) who just got her world rocked.  There are a million things to know.  I have narrowed it down to 5 Things Every New Autism Mom Should Know.  Having a child diagnosed with autism is overwhelming to say the least.  Here are a few things to get the new Autism Mom started without putting her in a panic.


1.  Take time to grieve, but keep moving forward

Hearing your child has been diagnosed with autism is gut wrenching.  What exactly is autism anyway?  He doesn’t look like there is anything wrong with him.  Should we get a second opinion?  What if he’s just going through a phase?  I’m sure he’ll catch up to the other kids soon.  Some kids just talk late.  He’s just quirky.  
It’s okay to be sad.  I have grieved for the life I had pictured for with child.  With just about everything we do, we do it a little bit differently than I imagined.  I still grieve sometimes. I’m sure I will for a long time.  Maybe forever.  But there does come a point where you couldn’t imagine your child any differently that how he is.  Brandon has taught me so much.  The denial stage is hard to avoid, but the sooner you look into services the better.  Take some time, but then get going!  Remember that it is okay to continue to grieve, but you have to keep moving forward. 


2.  Know your rights

Do not take anyone’s word for anything.  If something doesn’t seem right to you, verify!  This isn’t a negative attitude or lack of trust.  I believe in maintaining a positive relationship with any and all people who work with my child.  I tell them all right away that I am one of “those moms” who likes a lot of updates and asks a lot of questions.  I go ahead and warn them of my potential annoyingness up front, and let them know that I am just a very involved mom who wants her son to succeed.  This has always been appreciated by Brandon’s teachers and therapists.  My advice is not to go in with guns blazing – with the notion that you are going to have to constantly battle the school.  Don’t start fighting battles unless you have one to fight.  If you do, then buy all means, fight for your kid!  But, don’t take someone else’s challenge with the school and automatically apply it to yourself.  You were not there, so you do not know the story, and it has nothing to do with your kid.  The law is complicated.  There is a lot of information out there and some of it is hard to understand.  It is scary.  Remember that it’s not just scary to you.  It’s scary to all of us!  Go to an IEP (Individualized Education Plan) workshop if you can find one near you.  The website, www.wrightslaw.com, is a place you can go to answers you’re your questions.  They also have a couple great books that you can use to help with IEP meetings.  Keep this in mind: Special Educaiton is a service, not a place.

3.  Learn the lingo

With all the acronyms and legal terms out there, being a new autism parent is overwhelming to say the least.  Here are some terms I have found to be helpful to know.

Autism Glossary – A Complicated Language Made a Little Bit Simpler

4.  You are not alone!

You may not feel like talking to a stranger about your life, struggles, or triumphs.  Let me tell you though, there is so much comfort in talking to someone who actually understands what you’re going through.  There is no pity, and there are no blank stares because no one knows what to say.  Friends and family do the best they can; but much like any other life struggles, unless you’ve been there, it’s hard to truly understand.  Browse Facebook to find a group you can connect with, or find a local support group.  There is an opportunity here to learn little tips from other moms and activities in your area that are autism friendly.

5.  ABA (Applied Behavioral Analysis)

ABA is the most widely recommended treatment for autism.  If this is not the route you chose, that's okay!  I am a firm believe in ABA for autism treatment for MY child.  You are your child’s best advocate, and only you know what the right treatment is.  That said, learn what ABA is so you can make an informed decision about the best course of action for your child.  Click here for a link to some more information about ABA.

November 20, 2014

I can do all things: How being a special needs mom can be a blessing.

For the longest time, I could not understand people who would call a significant struggle in their lives a blessing.  I tended to take it either as blind faith rather than mature faith, or just masking a hardship and putting on a brave face.   Brandon has helped me to understand this.  I think about how many more moments of joy and pride I get than the average parent.  Those accomplishments that are small or not even noticed by other parents, give me immense happiness.  I may struggle more than the average parent sometimes, but honestly in many cases, not by that much.  Let me tell you though, I have the opportunity to appreciate the small things.  I get splurges of excitement over Brandon looking me in the eye for an entire activity, putting his shoes on when I say, “Brandon, shoes!,” waiting patiently in line for something, drinking from a regular cup, playing with another child, or getting a kiss when I didn’t even ask for it.  Watching him hold another child’s hand is like Christmas morning for me.  Every. Single. Time.

People always give me encouraging one-liners.  I love it.  I love talking about Brandon.  I love talking about autism.  I love the encouragement as well as understanding of how difficult it can be.  It makes me feel strong.  One I hear a lot is, “God doesn’t give you anything you can’t handle.”  I reflect on this often because I’ve recently come to the realization that this is not at all true.  He gives us things we can’t handle all the time.  It is through Him that I find my strength to handle this unexpected and welcomed part of my life.  Regardless of what you believe, I can tell you that it is a fact that the more I trust in Him, the stronger I am, and the happier I am.

I can do all things through Christ who strengthens me.
Philippians 4:13

November 13, 2014

He Sang. He Danced. He Wiggled.


Yo Gabba Gabba Live!

Brandon’s dream come true.  He is crazy for Yo Gabba Gabba.  His five TY beanie baby Yo Gabba Gabba people that our dear friend Angie gave him for his birthday are his favorite toys.  He engages in pretend play with them, which is a struggle for children with autism.  They have a special order they go in.  If you mess up the order when he's not looking, he'll fix it as soon as it catches his eye.  So, when I heard Yo Gabba Gabba was coming to Nashville, I didn’t give it a second thought.  We were determined to go as if our lives depended on it.  Several of my friends heard they were coming to Nashville and sent me messages about it.  I love my friends…so thoughtful!  Thank you!

Brandon did a fabulous job.  He sang. He danced. He wiggled. 

Remember this video I posted, asking you all what he was saying?
You were right on the money with “wiggle.”  He knew exactly what he was doing when that song came on.
Brandon said “Gabba” for the first time.  In fact, he said it several times!  While we were waiting for the show to start, the large screen up on the stage would randomly flash the Yo Gabba Gabba logo.  Each time it did, all the kids yelled “Gabba!”  Brandon was so excited that he joined right in!  There are so many words on the tip of his tongue that are just waiting to come out.  Lately he's said: please, help, up, cookie...and a few more! Here are some more photos from our wonderful night! Music is Awesome!

November 7, 2014

A monkey, Mr. Fredricksen, Woody, and Plex as portrayed by Brandon

I called Brandon, "Monkey" when he was a baby.  This is my little monkey at 2 months old on his first Halloween.  We strolled around the neighborhood with our friends Pat and Angie.  We were both moving from Nashville in the next few months, so it's a memory I will always cherish.  I came back to Nashville, but Angie hasn't.  Angie, I miss you dearly!

This is Brandon at one year old as Mr. Fredricksen from the move Up! for Halloween.  Even at this age, he would sit and watch the entire movie from beginning to end.  Squirrel!

All we cared about for Brandon this particular year was comfort.  He was two-years-old and having a hard time.  He had a lot of tantrums and meltdowns due to not being able to communicate.  His concept of waiting was non-existent.  He wore pajamas as his consume.  Pajamas for Woody's outfit and slipper boots!  It worked out perfectly!  I didn't get to go trick-or-treating with him because I had class that night.  I was pretty bummed out.

Brandon is obsessed with Yo Gabba Gabba!  This year he was Plex, and he wore his costume for days.  He even tolerated the hat!  This year was great because it was the first time he knew exactly who he was dressed as.  In a few days we are going to see Yo Gabba Gabba Live!  He is going to freak out!

October 31, 2014

Our Autism Journey to a Big Boy Bed


Brandon is three.  He has been in a crib up until about a month after his third brithday.  This is fairly old to still be in a crib.  He's had the ability to climb out of his crib for more than two years before we made the switch.  He loved his crib, and bedtime was easy peasy for me, so we went with it!  He climbed out a couple times, but that was a very rare occurance.  As active, strong, and athletic as he is, he stayed in the crib.  Up until about a month ago...

Brandon takes a long time to fall asleep at night.  He always has.  He just can’t seem to shut his little racing brain off.  When he was in the crib it wasn’t that big of a deal because even though he could climb out, he never did.  All he had to entertain himself was his self and his blanket.  Sometimes I would hear him belly laughing…just cracking up hysterically and I would have no idea why.  It was a little creepy actually!  I knew that transitioning to the big boy bed was going to be a task.  I started week one on my Fall Break at work so that I would have the flexibility for several late nights in a row.  The most important things I (try to) do are…

1.  I do not give up.  No pleading, talking, scolding, reading to him, etc.  He has to lay there until he falls asleep, and that is that.  I just keep laying him back in bed.  No muss no fuss.  No reaction to his antics.

2.  I am consistent.  I don't let him sleep with me one night, or have a toy one hard night, or allow him to put a foot on the floor one night, and then not let him the next night.

3.  
I downloaded an audiobook (free from the library) to help me pass the time; especially in that first couple weeks when I spent most of the time in his room.

4.  Nanny cam! Staying in there was boring, frustrating, draining, hard on my body, and not how I wanted to spend my evening after I long day at work.

5.  
I installed a light switch guard so that Brandon can’t turn on his bedroom light.  This cuts down his desire to get out of bed tremendously.

6.  
I put a doorknob safety cover on the door.  He knows he can’t get out of the room, but more importantly, this is a safety issue.  This prevents him from trying to walk downstairs in the middle of the night, climbing the catwalk rails, or getting into some other sort of trouble!

7.  
Week one of the transition I was off work.  I needed to be able to stay up super late to make sure Brandon did not get out of his bed.

Big Boy Bed Journal Entries  
This is how it happened for us...
Night 1:
Brandon did not nap at school today.  So, my first thought is, “Yes!  He is going to pass out at 8 a.m. and sleep in his big boy bed all night long without a fight.  We’re sitting at the table eating dinner, and I am pleased.  He is happily eating his mac ‘n cheese while I am eating a sandwich.  I turn and look at him and he is zonked.  He is passed out…in his high chair, MID-BITE, at 6:30 p.m.!  So I think, “Okay, this is still not so bad…he will be up at the crack of dawn, but at least I don’t have to fight him to stay in his bed the first night.”  He’ll wake up and realize, “Hey!  I sleep in a regular bed now...cool!”  I lay him in bed, still asleep, turn out the light and creep away.  At 8:30 p.m. I hear the pitter patter of his little feet running around his bedroom.  He took a two-hour nap, waking pretty much up right at bedtime.  SIGH….he did not go to sleep until 2 a.m. on night one.  I lay on the floor next to his bed dozing in and out of sleep, waking up every 15 minutes or so to lay him back in his bed.  Night one was a just a bust.

Night 2:
Brandon has realized that he thinks it’s funny not to get out of bed…but to almost get out of bed.  He’s still in bed, but he has one foot on the floor.  Or he’s still in bed, but he’s laying the wrong way.  He’s still in bed, but his legs are hanging over the rail.  Whatever.  If I move him every time he’s not laying down appropriately, I’m just giving in to this “game.”  In fact, I would be losing the game.  Once he realizes he’s getting zero attention from me (positive or negative) his shenanigans are fewer and further between each other.  He got out of bed only twice.  I heard the snoring begin at 11 p.m...music to my ears.  Can I really be this lucky getting him into a big boy bed?

Night 3:
I put him to bed at 9:30 (about 30 minutes later than normal) to make sure he is tired.  I start off sitting next to his bed, facing the door.  He gets out of bed, and without looking at him or talking to him I put him back in bed.  This happens repeatedly.  One time he almost made it to the light switch.  He’s sure messing with me tonight.  He thinks all of this is hilarious.  On roughly the eighth time, I can tell I’m close to losing my cool.  I put him back in bed, and walk out of the room.  I take a deep breath...several deep breaths actually, and count to 10.  I walk back in and of course he’s out of bed, so I put him back in, still not saying a word.  I fade myself out by inching my way to the door every few minutes.  Eventually, I stand just outside the door with it cracked so he knows I’m still there.  He doesn’t get out of bed for 15 minutes, so I shut the door.  I stand outside the door for 30 minutes and he doesn’t move, although I can hear that he is still awake.  I went down to bed and he didn’t get up the rest of the night.  I don’t know what time he actually fell asleep but he did stay in bed.  I am so glad I didn’t give up.

Night 4:
It’s 9 p.m. and he’s asleep in the car on the way home from Nanna and Poppy’s house.  Yes!  That was how night one was supposed to go, but hey…if there’s one thing Brandon has taught me, it’s that life doesn’t work out just how you plan.



Nights 5 through 14 are all about the same.  He lays in bed, and I lay next to the bed.  He makes noise and wiggles around, but for the most part he stays in bed.  It is time to start fading out so that I don’t have to lay on the floor for two hours every night waiting for him to fall asleep.  I start fading out by slowly inching my way to the door, eventually just standing outside the room out of his view.  If he gets up, all I have to do is walk in the room and he’s already darting back to his bed before I can even get to him.

Night 15 and beyond...
Why didn’t I think of this before…nanny cam!  Now I lay Brandon in bed and watch TV in the bonus room with my phone in my lap streaming video of Brandon in his room.  I can be up and laying him back in bed before he even makes it to the light switch.  I couldn’t have used the nanny cam any sooner than this though, because I had to set the foundation for him knowing he has to stay in bed.  


Update, Dec. 19:  I am over the mon about Brandon’s progress in his big boy bed.  It took a lot of time, patience, and late nights, but now I am at the point where I lay Brandon in his bed and he does not get out.  I don’t have to go in his room at all to lay him back down.  It’s been this way for at least a month now.  It is so freeing.  All kids are unique in their progress, but these things worked for us.  I am so proud of my little man!
 



October 21, 2014

Autism Glossary

 

If a parent with a typically developing child hears me blabber on about autism related stuff (which happens a lot), they constantly have to stop me to ask me what something means.  There are so many terms and acronyms to know that special needs talk often sounds like another language.  We special moms tend to forget that most people don’t know what these things are!  It reminds me of going to an office party for a company you don’t work for.  Everyone talks about their work, and you don’t understand what or who they are talking about.

Other autism glossaries online are jam-packed with terms.  Talk about overhemling!  I’ve pulled the ones I use most often to make it easier.  The more meaty terms/definitions are cited with a link to that website for additional information.  I have included some of my own tidbits, which are indicated in italics.

Applied Behavioral Analysis (ABA) – ABA is widely recognized as a safe and effective treatment for autism. It has been endorsed by a number of state and federal agencies, including the U.S. Surgeon General and the New York State Department of Health. Over the last decade, the nation has seen a particularly dramatic increase in the use of ABA to help persons with autism live happy and productive lives. In particular, ABA principles and techniques can foster basic skills such as looking, listening and imitating, as well as complex skills such as reading, conversing and understanding another person’s perspective. (Autism Speaks)

Autism Umbrella – In May 2013 all autism disorders were merged into one umbrella diagnosis of autism spectrum disorder (ASD). Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. (Autism Speaks)
So, if your child was evaluated after May 2013, he/she wouldn’t have gotten a diagnosis such as Aspergers.  It’s all autism spectrum disorder now.

Autism Spectrum Disorder – Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less. (CDC) We have to keep in mind that autism is a spectrum disorder. So, all people with autism have different symptoms, and to varying degrees. The Autism Tennessee website is helpful in giving a more detailed explanation of the diagnosis, signs and symptoms, causes, treatment, and demographics. http://autismtn.org/about-autism/

Comprehensive Development Classroom (CDC) – A CDC classroom is a special education classroom.  Placement in a CDC classroom is decided by the IEP team.

Echolalia – Parroting or repeating what another person says.
This includes, but is certainly not limited to, repeating a script from a T.V. show or movie.

Expressive Language – A broad term that describes how a person communicates wants and needs. It encompasses verbal and nonverbal communication skills and how an individual uses language. Expressive language skills include: facial expressions, gestures, intentionality, vocabulary, semantics (word/sentence meaning), morphology, and syntax (grammar rules). (Pediatric Therapy Network)

FAPE (Free and Appropriate Public Education) - The Section 504 regulation requires a school district to provide a “free appropriate public education” (FAPE) to each qualified person with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the person’s disability. (Department of Education)

General Education Classroom – Typical classroom in which education is received based off of state standards.  

Individual with Disabilities Education Act (IDEA) - The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.  Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B. (idea.ed.gov)

Individualized Education Plan (IEP) – A written statement for each child with a disability that is developed, reviewed, and revised in a meeting in accordance with IDEA.  For more information about what is encompassed in the IEP click here.
The IEP is a legal document.


The IEP team consists of:
- Special education teacher
- Regular education teacher
- Parent(s)
- Local education agent (LEA) such as the principal or assistant principal
- Interpreter of evaluation results such as a speech therapist or psychologist
- At the discretion of parents or agency, other individuals with knowledge/special expertise regarding the child


Least Restrictive Environment (LRE) – According to IDEA, to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and that special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.
Children with disabilities, to the maximum extent appropriate, have the right to be educated alongside their non-disabled peers. It is up to the IEP team (which includes the parents) to decide the best course of action for the education of your child.  The general education classroom might be the most appropriate place, or might not be.

Occupational Therapy (OT) - Occupational therapy teaches skills that help the person live as independently as possible. Skills might include dressing, eating, bathing, and relating to people. (CDC)

Parallel Play - Children sit side by side but play on their own.

Picture Exchange Communication System (PECS) - augmentative/alternative [picture] communication intervention package for individuals with autism spectrum disorder and related developmental disabilities. (PECSUSA).
I initially started with pictures I took of things in his life that he actually used.  For example, a picture of his actual high chair for when it was time to eat, or a picture of my actual car for when it is time to go.  The picture of the car was the most useful of all because it was the only way I could communicate that we were going to be leaving somewhere without having to pick him up and upset him.

Presumptive Placement – The presumptive placement for all students is the general education class.  Students should only be removed from the general education classroom if the IEP team agrees that it is in the student’s best educational interest to be in a more restrictive setting.
I look at is as the general education classroom being the starting point of the discussion.  Students should be educated in the Least Restrictive Environment to the maximum extend appropriate. 

Pretend Play – Imaginative play
This is just as it sounds – playing pretend.

Receptive Language – What we hear and understand.

Response to Intervention (RTI) – Visit A Family Guide to Response to Instruction and Intervention from Rutherford County Schools for more information about how RTI works.
RTI is used to identify a student’s needs and matches appropriate instructional strategies to the student’s specific academic needs.  There are three Tiers to RTI, explained in the link above.

Self-injurious – Self inflicted bodily harm.

Sensory Integration Therapy - Sensory integration therapy helps the person deal with sensory information, like sights, sounds, and smells. Sensory integration therapy could help a child who is bothered by certain sounds or does not like to be touched. (CDC)

Speech Therapy (ST) - Speech therapy helps to improve the person’s communication skills. Some people are able to learn verbal communication skills. For others, using gestures or picture boards is more realistic.  (CDC)

Stimming - Self-stimulating behaviors or "stimming" are stereotyped or repetitive movements or posturing of the body. They include mannerisms of the hands (such as handflapping, finger twisting or flicking, rubbing, or wringing hands), body (such as rocking, swaying, or pacing), and odd posturing (such as posturing of the fingers, hands, or arms). Sometimes they involve objects such as tossing string in the air or twisting pieces of lint. These mannerisms may appear not to have any meaning or function, although they may have significance for the child, such as providing sensory stimulation (also referred to as self-stimulating behavior), communicating to avoid demands, or request a desired object or attention, or soothing when wary or anxious. These repetitive mannerisms are common in children with ASD. (Autism Speaks)

Supplemental Aids and Services – Aids, services, and other supports that are provided in the regular education classroom or other education-related settings.
This can be accommodations or modifications, and may include an adult aid who works with the child.

Tennessee Early Intervention System (TEIS) – Serving ages birth up to age 3, TEIS helps families with disabled or developmentally delayed children connect to the supports and services they need. (TEIS)
Brandon received Developmental Therapy with an Early Interventionist, Speech Therapy, Occupational Therapy, and Applied Behavioral Analysis through TEIS, at no cost to us.

October 17, 2014

Through the Eyes of My Son With Autism

My mom loves me.  Even when I kick and scream, refuse to eat, or try to hurt myself when I’m mad.  One time right before bed I slapped her right across her face.  She didn’t get mad or yell though.  She told me “no” and put my hands by my side.  She still snuggled with me and read my books to me.

Sometimes I like to take mom by the hand and drag her around the house for fun.  If don’t whine, she does it…even when her eyes are droopy.  Sometimes I walk her back and forth, back and forth, back and forth.  I give her my biggest toothy grin.  She calls me a jokester, laughs and tickles me.

When I don’t know how to tell mom what I want, sometimes I scream and cry.  She doesn’t care if we’re right in the middle of the grocery store.  She waits for me to calm down before she helps me.  I know she knows what I want.  If she would just give it to me I would be quiet.  She doesn’t give in though…even when people are watching.

My mom plays with me a lot.  She protects me.  She kisses me all over my face…a lot…like all the time.  Even when I am trying to do important stuff like run around or watch Yo Gabba Gabba.

I show my mom that I love her.  I kiss her, snuggle with her, and I give her a big hug when she picks me up from school.  Someday I will tell my mom, “I love you;” because I do.  I just don’t know how to say the words yet.

To read this post through mom's eyes click here.


October 3, 2014

Lessons from My Nonverbal Son

Brandon has taught me so much in just three years.

He has taught me what is means to love unconditionally.  He has given me a glimpse into the love our Heavenly Father feels for us.  He’s shown me what it means to love someone so much it hurts; what if feels like when your heart is so full that it feels like it could actually burst.  There is nothing this child could do that would make me love him any less.

He has taught me selflessness.  He has shown me what it means to give your whole self to another, not to make yourself feel good, look good, or for others to notice, but solely for the happiness of that person.

He has taught me not to pass judgment.  People go through struggles and are fighting battles every day that we have no idea of.

He has taught me to keep my priorities in perspective.  We can all list our most important priorities, but do we actually live that way?  He reminds me of this every day.

He has taught me nothing if not patience - to have patience in the short term, as well patience in the long term.  He has taught me that I don’t need all of the answers right now.  He has helped teach me what it means to be still and to still be moving.  He has taught me to how to lean not on my own understanding.

Because of him I am a better person.

He has taught me all of these things without saying a single word.



Click here to read this post Through Brandon’s Eyes


September 28, 2014

FREE Autism Identification Sticker (Editable)




I made his sticker to put on my autistic son's back any time we're at a busy place where there are a lot of people and he has the potential to get lost (airport, Disney, etc.) A lot of people notice it and read it when we're around in public, so maybe we're spreading a little awareness too!  My son is not functionally verbal (essentially nonverbal) and cannot give someone our names or his own name, let alone phone number. 

I am offering this to parents for FREE! It is editable, and you just print it on large address labels. 

***PLEASE NOTE: You may want to consider removing the “my name is” part if your child might leave somewhere with a stranger that knows his/her name.*** 


Click here for a FREE editable version of this! 

If you would like a version of this that indicates something other than autism, please comment below and I would be happy to make one for you!


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