January 31, 2015

Therapy for Mom...Getting Away from 'Hello, My Name is Brandon's Mom'

I've had therapist after therapist in my home.  I drive Brandon to therapy, and drive him to preschool. Many of my conversations include the words IEP, IDEA, OT, ST, LRE, presumptive placement, supplemental aids and services, ABA, and meltdown.  This is life as an autism mom.  When people ask me how I am doing, I would say that 80% of the time I jump right into how Brandon is doing.  After all, how Brandon's week is going directly affects how mine is going.

"How are you, Rachael?"

"I am great.  Brandon has had really good week.  No major meltdowns!"

or sometimes...

"Um...not so great.  Brandon's had a hard week."

Side note:  Do not say, "Well, that's okay."  *cringe*  No.  It is not okay when he's had a bad week.  Yes, all kids have their moments, but that does not mean it's okay for any of them.  All I can think when people say that is, "It's okay to you because you don't live it."  It's just not helpful.

Anyway, I think this child-centered focus happens to all moms to a certain extent.  Especially when our kids are babies, all we can seem to talk about is what are kids are doing...what they're eating, how they're sleeping, if they're rolling over, crawling, walking, grabbing for things, or making silly sounds.  I realize this is annoying for people who don't have kids, or have kids who are long past these stages.  Yet, almost all moms do it.  We're excited, and we love our kids!

It took me some time, but I have come to realize that I need to do something just for ME. And it has to be something I do regularly to help me keep my identity.  I need my own kind of therapy...one that I am not allowed to miss.  Brandon doesn't miss his therapy, and I'm not going to miss mine.  I need to keep my sanity, and add some peace to my life.  

I need some time to be Rachael, not just Brandon's Mom.

My own kind of therapy is Hot Yoga.  Seeing my progression is a powerful thing.  The feeling of accomplishment I get in class is something that is invaluable to my self-worth.  It allows me to stretch, detoxify, relieve stress, and tone my body.  It's the the only workout I've ever done that works every single muscle, organ, and gland in my body.  Most importantly, it's the only workout that I actually enjoy doing. When I miss yoga because life gets to busy, I can feel it in my mind, body and soul.

This is for all moms, not just the special needs moms.  What is your own kind of therapy?  Don't have one?  Get one!  If you feel guilty for leaving your kid for one hour a week to do something for yourself, stop.  You will be a better mom for it.

January 26, 2015

If You Want to Know How to Treat a Child With Autism...

My nephew, Karson, is just nine months older than Brandon.  When they were both babies, this was a huge age difference.  When Brandon was just born, Karson was already crawling around.  When Brandon was just a few months old, Karson was walking and saying a few words.  Karson was always way ahead of Brandon, but that was to be expected.  There is a a major difference between, say, a 6-month-old and 15-month-old.

When Brandon started showing signs of autism his delay became more and more evident.  Now, Brandon is nearly three and a half and Karson is four and a couple months.  The milestones for their ages are somewhat comparable when you look at them broadly.  In fact, if Brandon was born just 5 days earlier, they would be in the same kindergarten class.  It blows my mind to think of them being ready for kindergarten in the same year.  I'm very thankful Brandon's birthday falls when it does.  He will be one of the older kids in class, versus the youngest with a disorder that encompasses a developmental delay.

Karson is a wonderful cousin.  He is a beautiful child, inside and out.  He shows an enormous amount of patience with Brandon, who has trouble socially engaging with his peers.  Karson tries so hard to play with Brandon, many times only to be ignored.  He has learned to play with Brandon in a way that Brandon likes in order to get some time with him.  He's done this for more than a year and continues to accommodate Brandon when they play.  I wish I could say this is due to my stellar parenting and encouragement from our entire family.  While this of course helps, there are certain things that just cannot be taught.  There is a level of compassion and acceptance that can only be reached if that is a part of your core.

I wish this picture captured the enormous smile Karson had on his face when he looked at me and said, "Look, Brandon has his arm on me!"  He was absolutely beaming.  Karson fully understands what an significant show of affection it is for Brandon to not only put is arm around Karson, but to keep it there.  This is how Brandon says, "I love you, Karson."

Karson also looks out for Brandon.  I will never forget the day we were at my parent's lake house on a family vacation last summer.  I turned around and saw Brandon sitting on the top back of a chair.  I darted over because it should have toppled right over, taking Brandon down with it.  It happened so fast that I didn't have time to ponder why the chair hadn't fallen.  When I got there, Karson was sitting in the chair next to Brandon.  He was casually eating his breakfast with one hand, and holding Brandon's chair down with the other hand.  The awareness Karson had in that moment, for someone other than himself, still amazes me when I think about it.  He was only three years old then.  It's impressive that he instinctively protected Brandon, yet he didn't feel the need to tell anyone about it.  He didn't try to get attention for it, or complain that he could only eat with one hand, or yell at Brandon to get down.  He just helped him.

This is just one display of compassion and understanding.  There are a lot of little things that he does to look out for Brandon from day to day.  A while back my sister (Karson's mom) told Brandon to be careful with something because he was going to break it.  Karson shouts to her from across the room, "He's not going to break it, mom!"  I could go on and on with little stories like this.

Karson doesn't understand the concept of autism, but he knows that Brandon is different.  He understands that Brandon is special, and he embraces this.  

If you want to know how to treat a child with autism, look to my nephew.  He will show you.  At three years old, this kid accomplished what many adults fail to do.

At Karson's birthday party, Brandon was sitting by himself listening to the music.  Karson joined him.

January 20, 2015

Why I Used to Cringe at the Word 'Autistic,' and Why I Don't Anymore

I used to cringe at the word autistic.  

I hated that word.  

I even had blog draft started called, "Why I Cringe at the Word Autistic."  I asked my family to stop saying it by politely and lovingly telling them that saying my son is autistic is putting a label on him.  It's defining him, when it's really just one part of him.  He is so much more than just an autistic kid.

I have heard the argument that among other examples, people with diabetes say they are diabetic.  Diabetics don't get all bent out of shape about being "labeled."  But that's totally different.  Autism is neurological.  It's developmental.  It's a disability.  There is more of a stigma with autism. 

Autistic also sounds more severe to me.  This may be because up until May 2013, autism and autism spectrum disorder were different diagnoses.  Autism was considered to be more severe.  Now everything upon diagnosis, including Aspergers Syndrome, falls under autism spectrum disorder.

My feelings on this word "autistic" are hard to articulate.  This is why I just had a draft going but had yet to publish anything.  I was still searching for the words.  It boiled down to this, though: Autism not something my son IS.  Autism something my son HAS.  

So, what's the big deal?  It's just one little word, and it's not even meant in a negative way.  If you've never known someone close to you with autism, you probably haven't given this much thought.  But, when something is so close to you, such a big part of your life, impacts your child...your child that you are incredibly protective of, a simple word can stir up emotions.

Here's where this changed for me...

I was reading a blog post about using word "retarded" to refer to a mistake, or something you don't like.  The comments below the post steered in different directions, and "is autistic" vs. "has autism" popped up.  Someone who actually has autism offered her opinion.  When I see someone with autism commenting on the subject, it completely peaks my interest.  Who better to listen to about autism awareness than someone who actually has autism.  Here is what she said:

"I am autistic though.  Not a person 'with' autism.  Autism is not a personality quirk that I carry around with me, it's a part of who I am." 

Now, imagine if someone without autism said this:  

"People are autistic though.  They're not people 'with' autism.  Autism is not a personality quirk that they carry around with them, it's a part of who they are."  

These statements make very different impacts.  Hearing her say it, someone who actually has autism, made all the difference.  I have my own struggles due to my son having autism, but the bigger picture is about him.  One day, when he is able to put his thoughts into words, I have got to ensure that I truly listen to what he has to say, and not get caught up in my own emotions and ideas about what he wants.  After reading her comment and reflecting on it, I have come to the seemingly obviously realization that I will forever ask for his opinion.

I say that I can't imagine my son without autism, yet I was so hung up on the word "autistic." That's not what I'm truly hung up on though.  I'm scared.  I'm afraid that Brandon's peers won't understand him.  I'm afraid that when his teachers talk about him they'll say, "You know, Brandon...the autistic one."  The thing that keeps me up at night is that Brandon's feelings will be hurt because some adult lacks compassion and understanding, or an innocent child just doesn't understand.

After reading this woman's comment, I have changed my perspective.  Being open, and willing to change one's thoughts when warranted, is so important in this special needs world.  Brandon is autistic. As I've said before, that doesn't define him, but it is a part of who he is.  I've known this all along.

January 15, 2015

Some of My Favorite Autism Quotes...With Commentary

Different.  Not Less.
- Temple Grandin
I watched the movie, Temple Grandin, recently. Having a young child with autism, I am very unsure about what the future holds.  I've read her biography, but I was captivated actually watching her story unfold.  I totally held it together...until that last two-and-a-half minutes of the movie.  I burst into tears at her gratefulness to her mother, at all that Temple has accomplished, and at how much was and still is unknown about autism.

It seems that for success in science or art, a dash of autism is required.

- Hans Asperger
People with autism have a unique way of viewing the world. This includes uniquely from others with autism.  It has allowed many people with autism to be very gifted in these fields.  Not every person with autism is a prodigy.  I don't know how many times people have said to me, "I bet he's really smart!"  It's a misconception that all people with autism are prodigies.  As a blanket statement, it's not the case.  Yes, there are some brilliant people with autism who have made major contributions to this world.  But, there are also many people with autism who struggle immensely with the day-to-day.

God created autism to help offset the excessive number of boring people on earth.
Whether or not autism is a blessing is not my intention of sharing this quote!  I have my thoughts on this topic, but they are not for this post.  I love the lightheartedness and humor in this.  Life with autism is anything but boring!  Sometimes you just have to laugh.  Being an autism parent can be hard, but if you never let the humor of it in, you've got a long road ahead of you.

If you think my hands are full…you should see my heart.
Okay, yes.  My hands are full.  I totally admit that.  But, I look at my son and I truly feel like my heart could burst.  I want to take a moment here to express how thankful I am for supportive friends and family.  So many people have been following my story with Brandon, of which I had no idea until two things happened:  First, I started a t-shirt campaign not expecting a huge sale.  I was honestly just hoping I would sell the minimum amount for Booster to even print the shirts for us.  Secondly, is this blog.  The amount of followers I have straight from my personal Facebook page add to my already full heart. 

Autism moms are kinds, nurturing, and loving.  Mess with their kids and they will end you. 
- Autism with a side of fries
TRUTH.  I have great relationships with all of Brandon's therapists and teachers.  I've told all of them though, that I am "that mom."  I want to know everything that's going on.  I tell them I am very involved, will be asking a lot of questions, and giving a lot of updates around what we are doing at home.  This has always been appreciated and applauded by the people that work with him.  If it's not, that is a major red flag to me.

Attacking people with disabilities is the lowest display of power I can think of.
- Morgan Freeman
The stories I've heard on the news this last year about bullies targeting people with disabilities makes me sick.  Physically ill.  These attacks are truly the lowest display of power.  These words of wisdom don't make this cruelty any easier to accept, but it's a truth that we need to remember, and that we need to teach our children.

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.
I hope this is us one day.  One a really good day, aside from Brandon being nonverbal, this is us.  People in the autism community are sometimes judged for "not having it as hard" as those whose children are more severe.  We are all struggling.  There's always going to be someone who has it worse than me, and there's always going to be someone who has it better.

It may not make sense to you.
Respect that it makes sense to them
It may not make sense to you.  Respect that it makes sense to them.
I've learned to wait a beat when I tell Brandon to do something before physically prompting him.  I used to think that he needed to react swiftly.  I thought that giving him too much time to react would allow him to run off to do something else or give him the impression that I wasn't very serious.  I thought that would be confusing to him.  I was so wrong.  I learned through experience that sometimes he needs time to finish out whatever was going on in his brain.  There are things I don't understand, and he needs to see it through.  He may need to position his toys in a way that he needs them to be before he can walk away.  He may need to finish an elaborate repetitive behavior that I don't even realize he's doing.  (Brandon's repetitive behaviors are so elaborate that many times I'm not even aware that they are happening.)  He may see something on the way to me, like the trash can lid being open, and he has to close it before he can comply.  The other day he positioned his teachers how he wanted them.  If one of them moved a few inches or sat down, he would "fix" them.  Who knows what was going through his mind...but whatever it was, it made sense to him!

A child with autism is not ignoring you.  They are simply waiting for you to enter their world.
This is my mom's favorite quote.  Nanna is always thinking of ways to enter Brandon's world. She does things with him that she thinks he will enjoy, and is thoughtful with the toys she buys him.  Brandon loves the movie, Tangled.  So, she got online and searched for Rapunzel, Flynn Ryder, and Maximus dolls for him.  He always runs and gets when we play the movie.  He engages in pretend play with these toys because they are what interest him.

WHAT ARE YOUR FAVORITE INSPIRATIONAL QUOTES?  Whether they are about autism, or life in general, please comment below. :)

January 10, 2015

I Cheated Today: A Lighthearted Story About Trusting Your Instincts

I totally cheated at nap time today.  I snuggled Brandon in his bed until he feel asleep.  Will I pay for it tomorrow?  Possibly.  He may decide that he doesn't want to take a nap because he wants Mommy to lay with him again.  But, I have to trust my instincts, and mine told me it was okay to bend the rules today.

Brandon was making a lot of noise in his room.  I checked the nanny cam and he was laying by the door.  He only sleeps at nap time about 50 percent of the time, but he does stay in bed.  Before going in to lay him back in bed, I waited a couple minutes to see what he was going to do.  He went back to his bed, and just sat there staring straight ahead.

Something just didn't seem right.  I can't really explain it, but my instincts were telling me that he wasn't just being defiant.  I opened the door and he ran up to me, jumped in my arms, and buried his head in my neck.  Brandon is a very affectionate child, and does like to be held, so that part wasn't weird.  But it was weird that he was so quick to need my affection when I opened the door.  Again, this is hard to explain...I just knew something wasn't quite right - a mother's intuition.

My main strategy for getting Brandon to sleep in his big boy bed is to be consistent.  As is I said in my post about this, I am not perfect.  I cheated.  I laid down in that teeny tiny toddler bed with him and let him lay on my shoulder.  He was very still.  After a few moments, it clicked.  Our neighbors are having work done in their backyard.  There's a lot of weird constructions sounds happening out there.  It's a small project.  It's not very loud, but you can hear it.  He fell asleep in five minutes...if that.  He was tired, and wanted to sleep, but something about the sounds bothered him.  I don't know if they made him nervous, or just annoyed him.

Can you imagine being three and not being able to communicate something like this to your mommy?  He just expected me to lay him back in his bed without saying a word.  It breaks my heart to think about this.

Now he is napping soundly in his bed.  It was one of those times that I had to break my own rule in order make this through this autism journey.  I'm glad I did.  I know this doesn't seem like a huge deal to the average parent.  So, what...I snuggled my son to sleep; but any autism parent can tell you that breaking consistency with something like bedtime can throw you off for weeks.  Oh well.  We'll just have to see what happens.  All parents can tell you this though: Sometimes you just have to go with your gut and do the best you can!

January 8, 2015

It's Hard to Imagine My Son Without Autism

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.  I have thought and said all of these things.

Sometimes it feels like it was just yesterday that my son was diagnosed with autism.  Other times it’s hard to imagine life before he was diagnosed.  Joseph Campbell said, “We must be willing to let go of the life we planned so as to have the life that is waiting for us.”  I was so focused on getting Brandon the help he needed, that it took me some time to realize that it was okay to grieve.

Grieving over the life I had pictured for my child doesn’t mean that I’m admitting that something is “wrong” with him.  It doesn’t mean that I love him any less, or that our lives are over.  Pretending that everything is okay, though, is walking a fine line next to denial.

If I could go back to the day my son was diagnosed with autism, I would tell myself that there will come a point when I could not imagine my child any differently.  Don’t misunderstand me.  I'm not saying I would wish autism upon anyone.  There are varying degrees of severity, and I do wish that my son did not have to deal with the struggles that autism brings.  However, if someone handed me a pill that would cure my son’s autism, I would not be quick to snatch it up.  I can't tell you with any certainty that wouldn't do it; I’m just saying that it would give me pause.

Even at his young age of three, he has such a personality.  Regardless of the “autism is/is not a disease” debate, there is no doubt that autism is a part of my son.  If I were to take that away, would he still by my little Brandon?  Would his interests change?  Would he still like to play the same games?  Would he still have his fearlessness?  Would he still laugh at the same things?

It’s not possible to decipher all of his quirks between autism and his God-given personality. 

Yes, autism is a part of who my son is, but it does not define him.  He is just a boy.  He is my boy; and the truth is, I could not imagine him any differently.

January 4, 2015

Look who made it on Autism Speaks!

My little Brandon's bedtime story, Our Autism Journey to a Big Boy Bed, was posted on the Autism Speaks Facebook page recently.  I'm so thankful that my experiences are reaching others.  Whether it’s for advice, or simply a story that other special needs families can relate to, I feel honored to have my voice be heard by this wonderful community.

January 1, 2015

Today I Feel Defeated

Today I feel defeated; which his ironic because just this morning I was blogging about how the bad days are what make you appreciate the good days even more.  Not today.  Today was a bad day.  Something happened.  It’s honestly just too personal for me to share with the world.  Just know that today I did not see the silver lining.  There was no lesson learned, or character building.  My happy happy autism attitude has been squashed like a bug.

Today I understand how some autism moms get annoyed by people like me.  After what I went through today, the last thing I would want to do is read some inspirational, autism won’t get me down, there’s always a silver lining, keep your chin up story.

I packed Brandon up in the car drove to my mom’s house.  I felt numb.  Like a zombie.  We walked in the front door, and the second I made eye contact with my sister I just burst into tears. 

Now that hours have passed and I am not reeling from the situation as much, I find subconscious creeping in.  It’s telling me, “You know Rachael, lots of autism parents go through this every single day with their kids…and twice as bad.  You should feel lucky you’ve only dealt with this once, and it really wasn’t that bad.” 

Why do I do this to myself?  I do not let myself wallow.  Honestly, sometimes I have got to let myself accept it and tell myself, “You know what?  That was crappy.  It seriously sucks that you had to deal with that.  It seriously sucks that Brandon had to deal with that.”  Period.  That’s it.  It just sucks.

That’s all I’ve got for you.

Good Days and Bad Days

Public meltdowns are fairly rare for us these days and I know I take that for granted. One thing many mom's with toddlers dread - especially those with autism - is the grocery store. This typically isn’t the case with Brandon. I could take him down the cookie aisle and stand there as long as I need to.  He knows that just because he can see the things he wants on the shelf, it doesn't mean he's going to get them.  In case you're wondering...yes, it took a lot of practice, hard work, and some kicking and screaming to get to that point; and just like the rest of us, he's not always perfect.  Let me tell you...if I got to the grocery store and all the carts with kiddie cars attached to them were being used, I would turn right back around, get back in my car, and go home!

A while back we were at Sam's Club he saw the giant pack of chocolate chip Eggo pancakes, which he loves.  This huge box of this yummy treat made him wide-eyed with excitement.  He didn't make a peep about them though…until I put them in the cart. He got excited knowing we were getting them, and wanted some.  Now.  He kept placing my hand on the box, over and over.  I told him he can't eat them now.  Then came the meltdown.  He understands he cannot have whatever he sees on the grocery store shelf, but he doesn't understand why I can't open a box of frozen pancakes in the middle of the grocery store and have them hot and ready for him to eat right then and there.  Go figure!

When these kinds of things happen in public, it is embarrassing. Yes, you kindhearted folks will say, "It's okay. All kids have their public meltdowns. It happens to all of us at some point." This is true, but can you honestly say you've never seen a kid "acting like a brat" in public and not thought to yourself, "Wow, that parent has no control of her child." Maybe even unintentionally rolled your eyes? I certainly can't say that I've never done that. Even after having Brandon I can still be judgy. I have to literally remind myself what Brandon has taught me: You never know what struggles someone is going through...whether is special needs or just a good old fashioned bad day. Give an understanding smile, or just keep on walking because the, "wow, he's not happy" comment, the eye rolls, or even the innocent stares just makes the situation harder.  That is my little public service announcement for the day.

The bad days are no fun.  But it's true that when we have a good day, it makes it that much sweeter.

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