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!

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