March 28, 2015

Keep On Keepin' On

Oh the woes of Brandon's dance class.  The first week of class, he was a ROCK STAR!  I was so proud of him!  The second class was a total debacle, which you can read here.  He was despicable.  Remember when I said I don't get embarassed by Brandon easily?  Well, that second class was a nightmare.

Ever since the second class, I wake up on Saturday morning and debate whether or not I'm going to take him to dance class.  These are thing things I think about:  What's his mood like this morning?  I've had a long week.  I just don't want to battle him again.  Skipping one week isn't a big deal, right?  Yes it is.  Skipping a week could throw him off even more, and we could have a repeat of the second class.  Then I would really be kicking myself for skipping.  I really shouldn't skip dance class.  A good mom would grit her teeth and battle through it.  Yes.  We're going.  I can do this.  I'm a warrior autism mom.  I can take the punches.  

I convince myself, and pack us up to get to dance class.  We haven't missed a class, but I go through these thoughts every week.

Week after week I struggle physically and emotionally to get Brandon to meet the goal I have set for him with this dance class.  His goal is to participate in dance class without hand over hand direction from me.  It's that simple.  I don't expect him to get all the moves down perfectly, to be the star of the dance recital, or to even be in a dance recital.

Look at these dance moves.  

You can see him doing the moves right along with Gru..right down to doing the splits.  In fact, he has several Just Dance Kids choreographies completely memorized.  If you turn off the TV and just play the sound, he's got it covered.  

He knows what to do at dance class, but his behavior gets in the way.  Yes, my child has behavior issues.  This is not because I let him get away with everything.  If I were you, pre-Brandon, I'd be rolling my eyes.  He's got to be being reinforced somehow if he continues with this undesirable behavior.  Nope.  Not so.  I do not give in.  It's just an issue we struggle with.  He is not violent, but he sure throws a doozie of a tantrum and he hurts himself.  He wants to do what he wants to do.  He thinks this is his world, and the rest of us are just living in it.  Must be nice to be King!

Today's dance class was a night and day difference from the second one.  I sat with all the other parents while Brandon participated in dance class!  His teacher provided him significant assistance, but the fact that I did not have to be on top of him to keep his act together is tremendous.

I sat there against the wall next to all the other parents and felt an overwhelming urge to cry tears of sheer joy.  I didn't know what to do with myself just sitting there watching.  It was so peaceful.  "Am I really just sitting here just like all the other parents?"  It was an incredibly welcome break.

Reflecting on all of this, I am proud of myself.  I pushed forward.  I did not give up.  As much as I wanted to skip dance class for myself, I went anyway.  Consistency is so key with Brandon.  I do not claim to be the perfect mom or the perfect autism mom.  These things don't exist, anyway.  Someone could use the same strategies and techniques I use with my child and yield different results.  All I can do is the best I can.  If I am doing any less, not only am I do a disservice to Brandon, but also to myself.  Right now is the time that I really have to put in the hard work so that our lives are a bit easier in the future.

"Success is not measured by what you accomplish but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds." - Orison Swett Marden

I am feeling pretty good about myself today!

March 26, 2015

From Frayed Flowers: Dear Mama of a Nonverbal Child

This is absolutely beautiful story from a friend and fellow blogger.  Her blog is called Frayed Flowers.  She is such an eloquent writer and in this piece she conveys how I feel on a regular basis.

I just wanted to sit beside you, green-sleeved lattes in hand, and talk. I know talking to me is no substitute for the conversation you long to have; I know you've gone years upon years waiting for a voice. I know you'd gladly give up coffee for the rest of your life—or books, or music, or whatever gets you through the day—if it meant you could hear his little voice. Her little voice.

I know the twisted, breathless feeling you feel, deep inside, when someone casually asks, "You sure you want him to talk? I can't get mine to shut up!" Clenched fists hidden in the pockets of a fleece jacket. And—as if taking a cue from your baby—you say nothing.

Like you, I've hesitated in checkout lines when well-meaning cashiers kindly question my son: "And how old are you, young man?" Like you, I smile—as if waiting, too—before replying for him.

Click here to read the rest of this story directly on Frayed Flowers.

March 20, 2015

You Might be a Special Mom If...

19 Things Only Special Moms Understand

This is the special moms version of " might be a redneck."  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.

Let me go ahead sand say this, though.  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 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.

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

If you're standing in line at Target and your kid hugs the shopper in line in front of you because her coat is soft... might be a special mom

If you keep a trunk full of bubble wrap in your car for self-soothing... might be a special mom

If you keep a stress ball in every purse and backpack your family owns... might be a special mom

If you plan your outfit around whether or not you will able to carry a mid-meltdown kid out of a room, and have zero wardrobe malfunctions... might be a special mom

If you get lazy and don’t put the vacuum away for a couple days, and when you finally do, your kid keeps getting it out and putting it back in "it’s spot" in the middle of the living room because he now believes that's where it "goes" and that's where it NEEDS to be... might be a special mom

If you stop traffic to retrieve a hub cap that just fell off a semi, because this is your kid's latest obsession and you know he'll be thrilled... might be a special mom

If you go to a birthday party location three days before the actual party to practice what to do... might be a special mom

If your kid tells her sibling to stop breathing because it's annoying... might be a special mom

If your kid “tells” you that your singing voice is ugly by putting his hands over his ears.... might be a special mom

 If you're constantly tripping over objects grouped in three all around your house ... might be a special mom

If your child gets punished at school for participating in an age-appropriate prank, but inside you're cheering... might be a special mom

If you run to the grocery store late at night because you've just realized you're out of grapes and if there are not grapes in your kid's lunch, there WILL be a meltdown... might be a special mom

If you are excited instead of upset when your child continues to try to sit on the kitchen table because he is trying to imitate what his sister is doing... might be a special mom

If people don’t understand you because you say things like, IEP, TEIS, IDEA, OT, PT, ST, LRE, presumptive placement, supplemental aids and services, or ABA... might be a special mom

If you listen to Christmas songs 365 days a year... might be a special mom

If your friends say, “let take the kids to {insert anything that requires waiting in line}" and you just laugh... might be a special mom

If you have carpal tunnel from continuously spinning the office chair around and around...and around and around in circles might be a special mom

If you’re invited to a park or barbeque and your first question is not, “what can I bring?” “what time?” or “where?” but, “is it fenced in?”... might be a special mom

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

Share your thoughts or experiences in the comment box below, and stay tuned for part two!

March 14, 2015

The Doorway to Knowing Ourselves in God

"The doorway to knowing ourselves in God is often found in the relationship with someone who is solely dependent on our care."

This is the epitome of my relationship with God.  My faith has only matured since Brandon was diagnosed with autism spectrum disorder.  The hardest part about autism with the season we're in now, is the unknown.  There is so much I don't understand.  I still have moments that I look at Brandon, and I just can't believe he has autism.  It still hits me like a ton of bricks sometimes; in moments when I least expect it.  It's not something I ever planned for.  He was born a perfectly happy, healthy baby.  It wasn't until more than a year old that there was even a hint of a developmental issue.  I struggle with this.  I can't imagine how much greater that struggle would be without having faith in knowing that God knowingly, deliberately, and with care, gave me the honor of being Brandon's mom.

"Trust in the Lord with all your heart
 and lean not on your own understanding; in all your ways submit to him,
 and he will make your paths straight."
Proverbs 3:5-6
Over the last few years, I have learned what unconditional love truly is.  Having a deeper understanding of this has given me a glimpse into God's love for us.  As much as Brandon may take me to the end of my rope, there is absolutely nothing that he could ever do to make me love him less.

I don't know if I have truly been selfless until Brandon.  His needs come before mine.  I have learned to understand his wants and needs by being so in tune with him, that he doesn't even need to breathe a word to tell me.  Many time I can tell what he's thinking by the sheer flinch of a muscle.  There are moments where he screams and cries because he doesn't want to communicate his needs with me.  I know exactly what he wants, and giving it to him would save me time and alleviate stress and a headache.  I can't give in.  I have to endure the tantrums in order to help him be his best self.  If you've ever been around a screaming child, you know the feeling of just wanting the screaming to stop.  You would do just about anything.  It takes some major will power to wait him out.  Try doing this in the middle of the grocery store.  Talk about some inner strength.

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

The Lord will fight for you; you need only to be still.”
Exodus 14:14

The Lord guides our steps.  So, why do I constantly feel the need to understand everything along the way?  I should only focus on the things I can control.  All the rest is out of my hands.  It's in God's hands.  Have a mastered this?  No.  Will I ever?  I don't know.  But I try.  The serenity prayer essential in my life: God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

“A person’s steps are directed by the Lord.  How then can anyone understand their own way?”
Proverbs 20:24

March 8, 2015

Setting Realistic Goals and Sticking to Them

Yesterday was Brandon's second week dance class.  Remember in my last post I said how great he did last week?  (here)  Well, he lost his damn mind this week.  He fought me every step of the way.  You know what the worst part was?  He CRACKED up every time he did something he knew he shouldn't do.  Uncontrollable laughter.  My little man can be jokester, but I did not recognize my child at this class.

First, we sat in a circle to warm up and stretch.  With him having a limp body, I directed him with every stretch.  I was like a puppet master.  "Time to touch your toes, the teacher said."  He looked at the assistant teacher next to him, and touched her toes. least he followed some sort of direction.  His receptive language is still not near where it should be developmentally, so I was proud that he heard the word "toes" and touched some toes!  

What did he to next?

He BIT her shoe!  I don't get embarassed easily when it comes to Brandon's behavior, but this one did it.  He opened his mouth as wide as he could and chomped down right on her dirty sneakers.  My jaw dropped.

Next, we sat along the wall to take turns doing steps.  To his credit, he did stay over there.  But he was flailing around, sliding across the floor, and kicking me.  It's not like I was caught in the crossfire of his flailing body.  He deliberately kicked me.  Several times.  And cracked up about it.  He thought it was hilarious to kick me.  He's never acted like that before!  Again, I was dumbfounded at his behavior.

And if all that wasn't enough, this child proceeded to take his index finger, and draw a big 'ole scratch down my chest.  It stung.  I said "Brandon!  No!"  This kid looked right at me, laughed, took his other finger, and drew another scratch down my chest to match the first.

I don't know what happened to this child at dance class, but it was like he was some other kid.  I have never seen this kind of behavior with him.  Ever.  I'm not saying he's never kicked me or even bit me (over a year ago), but he has NEVER laughed in my face about his behavior.  If anything, he gets very sensitive if he gets in trouble.  If he accidentally spills his drink, he cries instantly, runs and gets a towel, and cleans it up himself.

This is one of those times that people don't typically see.  My son is three-and-a-half years old.  This is not acceptable or typical behavior of a three-and-a-half year old.  I am so happy that my son "behaves" a lot of the time, and that for some people it's hard to tell he has autism.  It's not that I want people to think that I have a hard life, or that my son is a bad kid.  But it's hard to explain the struggles we go through sometimes...especially when people don't see it for themselves.  "All kids do that," or "He's just being a boy," or "It's just the awful threes," does not apply here.  Just a side note - never say these things to a parent of a child with autism.  I know you think it's helpful, and we appreciate you trying to make us feel better.  But it doesn't, because we know the truth, and it just gives us the feeling that you don't believe us.

So, at the beginning of class, the teacher talked to us about the dance recital.  After last week, I thought..."I think we may actually be able to do this!"  But, this dance class reminded me of something very important about the goals I set for Brandon.  Remember to aim to reach  goals you set, and not create unrealistic expectations.  Take one step at a time.  Expecting too little creates behavior issues.  Expecting too much is defeating for the child and the parent.  The goal is to get to the point where Brandon can participate in dance class without hand over hand direction from me.  The goal is not to do all the dance moves perfectly.  It's not to perform on stage.  It's not even necessarily the social interaction with his peers.    I long to see my son do all of these things.  I want to see him up on the dance stage, strutting his stuff with a smile on his face.  It hurts to know this is an unrealistic expectation at this point.  We will get there.  However, the time is not now.

One step at a time.

March 3, 2015

When in Doubt, Dance it Out

A Letter to the Director of My Son's School

Today Brandon attended a dance class for the first time.  He loves dance and music, but has a hard time waiting.  During dance class, I remembered the first day I brought Brandon to special needs preschool.  I told his teacher that he was not used to sitting in a group such as in circle time.  I was worried that he wouldn’t want to sit down and it would create problems – that he wouldn’t follow instructions, and he would end up being left behind.  I am determined that he will eventually be in a typical kindergarten classroom, and I just want Brandon to have his best chance.  My worry was that he would have a teacher who didn’t have the patience, assertiveness, or diligence to make him sit down.  Or in a reverse scenario, that he would have a teacher who was mean to him or too forceful with him.

As I was watching him in dance class today, I was amazed at how far he has come in the last six months since he started attending this school.  My first thought was, “I wish his teacher was here to see this.”  The kids had to all sit against the wall, while each of the other kids took a turn learning a dance move.  With minimal assistance from me, he sat and waited his turn.  He clapped for his peers after each of their turns with a big smile on his face.  By the end of the class he had four turns.  The first time, I had to practically drag him down the line.  By his fourth turn, he was holding only the dance instructor’s hand, and kicking his legs up in the air just like he was supposed to.  He was laughing and giggling the whole time.  You could see the pride in his face at the end of his turn when everyone clapped.  He was hilarious at free-dance time.  His personality shined through as he mimicked the other kids and teachers’ dance moves.

What amazes me the most about today is his growing concept of “waiting.”  He understands some commands such as, “throw that away” or “go get your shoes,” but teaching the action of “waiting” is so much harder to do.  It has always been a losing battle for me.  My appreciation for what his teachers have been able to teach Brandon is something I will never be able to expresses adequately.  They truly love my child, and want him to succeed, probably just as much as I do.  I consistently get the feeling that Brandon is their favorite student, and I have an inkling that they make all the parents feel that way about their own child.

My only regret is that Ms. Tameka can’t follow Brandon for the rest of his education.  She, Wahna, and Kiki have changed our lives, and absolutely inspire and encourage Brandon to be his best self.  This is such a pivotal point in his development, I couldn't happier with his teachers.

I want to thank all of you for making a difference in our lives.

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