April 30, 2015

If I Died Tomorrow

This sounds a little morbid, I know.  But if I died tomorrow, there are some things to know about Brandon.  There are things only his mommy knows - that only his mommy really understands.  (Daddy knows some of these...gotta give him some credit!)  

Brandon and I are incredibly close.  I can't tell you how thankful I am for that.  Sometimes it scares me a little though.  There have been many situations throughout his young little life that I have thought, "Wow.  No one else would have known what he was just thinking just then except for me."  Because of this, it is sometimes hard to leave him in someone else's care, and still enjoy an evening fully.

If Brandon is melting down when you to try to read to him at night, it's not because he's being a brat.  It's because you're reading his Miss Spider book.  Yes, that was what he wanted to read over and over at night, but that was last month.  This month he wants to read, Pete the Cat: I Love My White Shoes.

If when you're reading to him he keeps trying to get out of bed, it's not because he's trying to be defiant.  It's because you finally got the right book, but he left his Pete the Cat stuffed toy downstairs.  He needs to hold his Pete the Cat while you read the book, so he can make him dance while you read.

If he starts having a meltdown in the grocery store, it's not because he's trying to embarrass you.  It's because we always stop at the free cookie counter at Publix before we begin our shopping.  He doesn't know how to tell you, "Cookie!"

If he gets sick and refuses to take his medicine, he's not trying to be difficult.  After all, what three-year-old wants to take his medicine?  Put it in a Danimal smoothie, give him a straw, and he will drink it all up.

If Brandon takes his knuckles and knocks himself in the head, it's not because he's crazy.  It's not because he's violent.  It's because he is intensely upset about something, and knows he has no way of telling you what it is so that you can help him.

If he is having a meltdown in the car (the most aggravating place to hear a child scream) it's not because he's trying to make you feel like you want to drive off a cliff.  Whatever has upset him is made ten times worse because he is strapped down in a harness carseat.  Roll down his window and he'll calm down almost instantly.  Works like a charm.

If he keeps pulling on you to stand up off the couch, but then just runs away, he is not trying to be annoying.  This is part of a very elaborate repetitive behavior.  Just watch for a minute and you will see him do about ten different things (including making you stand up) that are a part of this.  He never misses a step in this process.

He's got some quirks that other children may have.  Aside from the elaborate repetitive behaviors, it's not as though I connect all of those preferences to his autism diagnosis.  The difference here is that Brandon cannot communicate or explain himself.  He can't tell you, "I need to get Pete the Cat."  The only way to communicate that is to get up and do it, and hope he doesn't get in trouble for getting out of bed.

It's impossible to decipher every move he makes between autism and God given personality.   Not only that, it's pointless.  Brandon is who he is.  Whether he does something because of his autism diagnosis, or because it's just his preference, it really doesn't matter at this point.  A behavior is a behavior, and we're going to deal with it (or not deal with it) regardless of where it originates.

PS:  If Brandon is melting down, and you can't for the life of you figure out how to make it stop, play the song, Timber, by Kesha, and it's all good.  :)

April 25, 2015

PART TWO!: You Might be a Special Mom If...

This is PART TWO of the special moms version of "...you might be a redneck."  Click here for part one.  

They were written by a group of strong, intelligent, courageous, loving, special needs mamas.  One of their most important qualities is that they have a sense of humor...something that is a requirement for sanity for the special needs parent.

I will say my little disclaimer again:  If you have any comments like, "Well, my kid does that and he isn't autistic." Or, "Well, all kids do that!" resist the urge to be a know-it-all.  This is my number one pet peeve - number one on my mental list of things not to say to an autism mom.  This post is meant to be funny - a small light-hearted glimpse into what our lives are like.

Again, now that I am done yelling at you for something you haven't even done, get into humor mode! :)

If one of your house rules is that your child gets 30 minutes of naked time, and then must put on underwear...
...you might be a special mom

If your child sits upside down at the pews in church and you say nothing because this has become normal behavior in your eyes...
...you might be a special mom

If you get excited when your child talks back to you just because he talked...
...you might be a special mom

If all you can do laugh when you walk into the kitchen and see your child (who knows how to walk), having to craw. around the kitchen due to all of the broken eggs on the floor...
...you might be a special mom

If you go to a restaurant and know everyone's name and age before finishing your meal...
...you might be a special mom

If hearing the word “retard” makes you want to punch someone in their stupid face...
...you might be a special mom

If you choke back tears when they tell you your kid’s appointment with the nurse will be 30 minutes late...
...you might be a special mom

Then, you actually do cry because your superhero of a doctor swoops in unscheduled, with his compassion and understanding, to check your child's ear in the middle of the hallway between exam rooms...
...you might be a special mom

If your kids are sitting on the couch fighting over an iPad and part of you knows that you should intervene, but the other side of you is secretly excited they are interacting with one another...
...you might be a special mom

If your kid has a certain order his toys go in that CANNOT be messed with...
...you might be a special mom

If you come to thanksgiving dinner with a baggie of chicken nuggets and some microwave mac 'n cheese because they won't eat any "holiday food"...
...you might be a special mom

If you know every line in a single scene of a movie because he only plays that one scene over and over and over...
...you might be a special mom

If you know what your kid is thinking by the sheer flinch of a muscle...
...you might be a special mom

If waving bye, high fives, and eye contact are huge victories worth celebrating...
...you might be a special mom

If a simple kiss means the world because that is how your child says, “I love you, Mom..."
...you might be a special mom

April 17, 2015

Doesn't Awareness Lead to Acceptance?

Clipart by Melonheadz Illustrating LLC 2014

I'm a little nervous to hit publish on this, so let me just ask you to read with an open mind and refrain from any nasty comments please!  Respectful disagreement is absolutely welcome.

Some of you would be surprised at the amount of times I have seen people get upset or offended about autism awareness month.  I know it sounds weird.  What problem could people have about autism awareness?  Let me explain.  They saying things like, "I'm sick of people saying we need autism awareness.  We need acceptance."  This has been said, with annoyance, directed right at me (but not on this blog, so no need to go searching for a juicy comment!)  

I do get where they're coming from.

I completely agree that we need acceptance.  Of course we do.  But, doesn't autism awareness lead to acceptance of autism?  Don't we need our friends, family, and society in general to be aware of what autism is?  What the symptoms are?  How many people are affected?  What this means for the families?  What sort of modifications are necessary?  Being aware of all of these things leads to acceptance.

We autism parents have deeply personal opinions about vaccinations, a cure, whether or not Autism Speaks is evil, etc.  I understand the debate among these issues, and it is healthy and productive to have them as long as they are respectful.  But with Autism Awareness Month here, it is disheartening to come across comments around something as powerful as awareness.  The negativity that surrounds picking apart these words could be time well spent on spreading awareness and acceptance of autism.

Saying you have acceptance for people with autism is wonderful, but we should except all people for who they are.  That said, educating people about autism - making them aware of what autism is - will help them to truly accept people with autism on a deep and personal level.  Acceptance that rises above superficial level or a generalization of accepting all people for their differences.  Don't you want to know what differences your accepting?

Whatever you do to embrace autism, whether is wear a bracelet, volunteer, put a Facebook cover page on your profile, or read a blog to learn more about autism, I applaud you.  Thank you from the bottom of my heart.

April 12, 2015

I Just Realized My Son is a Movement Seeker

Brandon doesn't have any major sensory issues that cause meltdowns.  The one thing is potentially meltdown inducing is crowds of people - even a small family gathering in our home - really overstimulates him and makes him upset.

I realized today that Brandon is very movement seeking.  I knew he could never sit still, but I never thought of it as a sensory seeking thing until just now.  

If you're thinking, "That's not autism.  He's just all boy."  Don't.

Yes, it is true that lots of boys have a hard time sitting still.  With Brandon, though, it's on a different level.  If you spend a significant amount of time around him you will understand.

Every day Brandon and I have dance parties in his room.  We turn off the lights, and he carries a flashlight around while he dances.  It's sensory overload in there - in the best way.  The loud music, the rhythmic beat, and the freedom to dance around the room can change his temperament in a matter of seconds.  He's got his own style of music that he likes.  I can tell right way if a song comes on the radio that Brandon will start bobbing his head to.  (Plus, our dance parties are great on days I don't get to hot yoga, because the crazy dance moves I do for Brandon's amusement are like my own weird version of a Zumba class.)

Anyway, I came to this epiphany today when reading a quote by an author named Alan Yau.  He said, "Bounce.  Many children with autism are very movement seeking.  Trampolines are great."  I had never hear the term "movement seeker" before.

Okay, so what?  All I've done is put a name to something Brandon's been doing all along.  It doesn't really change anything right now.  The significance is that I have a way to explain some of his behaviors to his teachers as he approaches school-age.  More importantly it will allow for a greater understanding of why he does some of the things he does and how we can allow him the sensory input he needs, while still maintaining a quality education to the maximum extent possible.  

My mind is a-whirling about some movement supports and accommodation ideas to help him meet that need in the future without being disruptive.

Any other movement seeking folks out there, please feel free to give me some ideas!

April 8, 2015

A Little Advice On How to Talk to This Autism Mom

If it's hard for you to tell my son has autism, I take that as a compliment.  It's not because I hate autism, but because Brandon and I both work very hard to make sure he is happy and self-sufficient as possible.  One of my favorite quotes is, "If it’s hard to tell that a high functioning autistic child is on the spectrum, pat the parent on the back.  Lots of tears, time, research, repetition, and tantrum battling went into that."

When Brandon was first diagnosed, people doubted that he had autism, even though it was very apparent to me that he did.  There were classic signs of autism all over the place.  Other people say to me, "Lots of kids talk late."  Or, "So-and-so's son didn't talk until he was three."  Or, "Oh, well my kid does [that] too, and he/she doesn't have autism."  

Although these are usually well-intention remarks - you are simply trying to be positive and give us hope - there are three problems with statements like these:

First, I know that you absolutely are not meaning to do this, but you're giving a parent who is going through a major struggle the impression that you think they don't now what they're talking about.

Second, you never know what struggles someone is going through that you can't see.  When you're over at my house visiting, my son may be watching TV like a typical kid.  But what you don't see later on is him knocking his head (hard) with his knuckles because something has upset him very deeply and he has no way to tell me what that is.

Third, autism is invisible.  You can't look at someone and determine they have autism by any physical characteristics.  I've heard a few times, "He doesn't look like he has autism."  The few times someone has said this to me, it was in a tone of encouragement.  The reason he doesn't "look" like he has autism is because there is no "look" of autism.  When I'm walking around the grocery store, and he has a meltdown because they don't have the right kind of cookie, people assume that he is spoiled.  That's what I would have thought before Brandon taught me to know better.  Maybe that kid you see in the grocery store is just spoiled.  Maybe he has autism.  Maybe he has some other diagnosis we are not educated on.  Maybe he's got an ear infection.  Maybe his parents just split up and the inconsistency has him rattled.  Who knows.  Just be conscious of reserving the judgment.  It's also very important to know that autism goes beyond being socially awkward.  It is a spectrum disorder, and children with autism have vastly different symptoms and characteristics.  Just because you know some other kid with autism, doesn't mean those symptoms have anything to do with Brandon.

I wan't to wrap this up by saying that I appreciate all the love and support I receive from my friends and family. I still get these kinds comments, but not nearly as often as I did about a year ago.  Please hear me when I say this: I will absolutely take ANY well-intentioned comments over you being afraid to reach out or not say anything at all.  So, please don't be discouraged in knowing how to talk to a parent of a child with autism.  I simply want to give some loving advice from my perspective.  If you're reading this, you care enough to take time of your busy day to learn a little bit about autism.  This is what matters most to me.

April 2, 2015

It is Not Autism That I Celebrate Today

For me, Autism Awareness Day is a time of celebration.  But I'm not celebrating that fact that my son was diagnosed with autism.  That day was not one full of joy and happiness.  Today I am not celebrating autism.  Today I celebrate my son, Brandon, and all his accomplishments.  He works so hard every day to be self-sufficient, independent, and to communicate.  

Imagine the frustration this little boy has to not be able to tell me when he wants something, that he needs something, that he is not feeling well, or that he is simply excited about something.  For example, Brandon wants me to push him on the swing, he has to walk all the way across the backyard to come grab my hand, walk me back over, and put my hand on the swing.  Imagine every time you needed something, you had to walk all the way over to someone, take their hand, lead them to what you want to tell them, and hope they get what you're asking for.

If Brandon wants something to eat, the only way he can tell me what he is craving is if he can see it in the pantry, and put my hand on it.  He has melted down so many times because I can't for the life of me figure out what he is looking for in that pantry.  He can't say "gummies."  So, if he really wants a packet of gummies and they are hiding somewhere in the pantry, he just won't get them.

March was an awful month for Brandon.  He was despicable.  Unbeknownst to me, he had an ear infection and ruptured ear drum that I had no idea of.  He was in pain and uncomfortable for weeks, and I hadn't the faintest clue that there was anything wrong with him.  No wonder he would break out into full meltdown mode without warning.  When I found out about his ear, I thanked God for my patience and that I don't spank him as a form of discipline.

I celebrate this boy today, and all others who are affected by autism who have to work so much harder to do things that we take for granted.  You are determined.  You are courageous.  You are strong.

April 1, 2015

Autism Awareness Facebook Cover Photo

The month of April is Autism Awareness Month, and April 2nd is Autism Awareness Day!

One of the biggest obstacles in the world of autism is that people generally don't understand it.  There are so many misconceptions. Well-meaning people have told me my son doesn't look like he has autism.  People ask me when Brandon will outgrow autism, or what is "special talent" is.  Autism remains a mystery in many aspects, but spreading awareness about autism spectrum disorder is important for our kiddos' futures.  This is why I write this blog.

Show your support for the autism community by making this your Facebook cover photo for the month of April!

To download this free Autism Awareness Facebook Cover photo, click HERE.

Clipart © Melonheadz Illustrating LLC 2014

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