Monday, March 17, 2014

New Home

Have you heard that The A-Word has a new home?

All of my new posts regarding autism and the adventures of our little family can now be found at The Bangor Daily News.  Make sure to follow us there!

Tuesday, February 4, 2014

Paying It Forward

I just got off the phone with The Thoughtful House in Texas.  They had emailed me asking if they could use Brian's files as part of a research study looking for trends in not only causation but treatments that showed promise.  It was a no-brainer for me to quickly respond positively.  After all they have done for my boy I will always do all I can to help them help other children.

As I was waiting for them to call me to go over all the legalities of the study I began reminiscing...

I remembered filling out all the paperwork for the Bright Eyes grant.  Not really ever thinking Brian would be one of the fifty children picked from all over the country.

I remembered sitting on my bed, actually in the midst of going through Brian's paperwork, when I got the call that told me they wanted to award Brian one of the grants.  It was one of those pivotal moments in my life that I can recall every little detail to it.

The trips down to Texas are remembered in the same details.  I remember every little piece of it- the layovers, the hotel room, the practitioner's faces and voices, what we were wearing, etc.

Funny when most of the time I can't even remember what I did yesterday.

We will forever be honored by that grant.  That grant gave us speech, less self-injurious behaviors, more interactions, happier affect overall, increased cognition, and sleep, GLORIOUS sleep.  That grant helped bring my boy back to me.  Is there still work to be done?  There sure is.  But I know we wouldn't be where we are today without the Thoughtful House.

I hope whatever little we can do can help another child the way mine was helped.

Thursday, January 23, 2014

Hold My Hand

Sometimes, especially on mornings when the wind chill temperature is below zero, I'm a tad jealous of all the other parents.  The other parents who drive around the circle, park their car, watch their child open the car door and bounce out with his backpack and skip into the school.

I, on the other hand, have to get out of the car.  Help open the car door and sometimes have to help do the buckle depending on how Brian's fine motor skills are operating that morning.  Help him get his backpack on his back, pull him back sharply from trying to run in the parking lot without looking for cars.  Then he always looks up at me and independently slips his little hand into mine.

Every morning I smile when I feel that little hand in my hand.  It's such a big deal.  There was a time that we had to do ABA trials to get him to hold someone's hand.  Drive to a parking lot, get out of the car, hold Mom's hand- oh you get a skittle!  Yes, I will admit we were a family that used food reinforcers when it came to learning safety rules (and potty training!).  Take five steps, still holding Mom's hand?  Oh, another skittle!  Not holding Mom's hand and have bolted across the parking lot?  Back to the car you go to start all over again.  Whole afternoons working on this.

I also smile because when his little hand is in mine, he is safe.

I'm not walking my child into the school because I'm an overprotective mom.  I have another son, just 18 months older than Brian, that is allowed to walk home from school with his peers.  I'm walking my son into school because he can be a wanderer, like so many children on the spectrum.

He's impulsive. He hears that train that runs a block over from his school there is no doubt in my mind he would decide to go check it out.  He has no idea of stranger danger.  Someone asks him to go with them, he will.  He still doesn't realize that moving cars won't always stop and can hurt him.  He loves water and just recently was found in open water near a lake when ice fishing with his father.  If he was ever to wander off and get lost he might be able to tell someone his first name, but that's it.

Avonte Oquendo disappeared from his school.  The place his parents dropped him off every morning, assuming he was safe and taken care of.  The place that had an IEP and plans set up for Avonte's eloping behavior.  The place that was equipped with cameras and security guards.  Avonte's remains were found recently in the water.  That was not the ending any of us wanted for his family.  I had held on to hope as I'm sure they did, and all the other parents out there following the story.  Stories like Avonte's, stories I hear all too frequently, go right to my core.  Because I know that could be my boy.

These are facts taken from the National Autism Association and I know I have shared them before, but I'm not sure they can be shared enough.

  • Roughly half, or 48%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
  • In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.
  • More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number
  • Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
  • 32% of parents reported a “close call” with a possible drowning
  • Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers

This is why I walk Brian in everyday.  This is why I smile when he takes my hand and I never take it for granted.

If you haven't already please check out NAA's printable toolkit for wandering or order yourself a Big Red Safety Box.  You can never be prepared enough!

Sunday, January 12, 2014

Flashback: 2007

I've been spending the day cleaning our office.  Our office is more than just an office- it is a music studio and it's also the room where we pile things that don't have "homes".  Therefore it is a mess.  However, I'm determined to get it done.....I just keep getting sidetracked with all the journals I have kept regarding parenting.  And to take a break from this chaos (and because I'm quite certain I have ADD) I had to get on here and share this journal entry I found from 2007...

The biggest perk of working in a preschool is having the same vacation time as my children.  I count down the days until I will have tons of free time to play, explore, and learn with them.

Today is one of those much anticipated days and I can not wait to get back to work.

A dead giveaway that it's been a long day is the aroma of microwave cooking.  A tired mom does not usually feel the drive to produce a gourmet meal.  In our household microwave meals are rare, only because we have a shortage to choose from- we are living a gluten-free lifestyle like many families that include an autistic individual.

The gluten-free, nitrate-free, flavor-free turkey dogs are boiling on the stove and the gluten-free but pleasantly surprisingly yummy mac n' cheese is being heated by micro waves.  They both still have a few minutes to go but my autistic 3 1/2 year old, Brian, has already been at the table for five, which is a lifetime for him, fully equipped with a plastic green fork gripped in his right hand.  He doesn't fully understand the process of making a meal, even one by microwave.  As far as he is concerned there should be no elapsed time between me washing my hands before starting a meal to when I place it on the table.  His anticipation is magnified when he knows we are having turkey dogs, which is one of the 12 foods he'll actually eat.

Between Brian's animalistic yells, which are becoming louder and closer together, I call his quirky five year old brother to come set the table- a chore I have just recently regulated to him.  Of course I have to call him a few times because he is fully immersed in his new handheld video game.

The incessant noises coming from the game, the hum of the microwave, and Brian's frequent yells are really doing a number inside my head.  I've learned a lot about sensory issues with my kids- enough to know that I have some of my own!  Then on top of it all I hear a "beep beep beep"- Brian's potty timer.

"Brian you need to use the potty," Corbin chirps without looking up from his game.  Okay, he heard that?  But didn't hear me calling his name?

Brian lets out a loud scream, jumps from his seat, and storms up the stairs to the bathroom.  We are in the midst of an intensive potty training schedule, which Brian has a love/hate relationship with.  He hates the transitioning part but loves the reward, a Skittle.  I follow him up the stairs, catching myself grinding my teeth- my newest bad habit that I tend to do when I'm feeling stressed or overwhelmed.

Almost to the top of the stairs when our neighbors decide it's the perfect time to burn their dinner.  We live in an apartment complex and one of the many perks is if one smoke detector goes off- everyone's follows suit.  It doesn't bother Brian.  Not much auditory does, except for the blender, parades, and occasionally the vacuum.  But I know it's going to be another story for Corbin.

I hear the crash of his game from his fingers to the floor causing me to grimace with worry of how much it will cost to replace the gift from his Dad.  Immediately following the crash comes a panic-stricken, scared scream.  A scream that Jamie Lee Curtis would be envious of, accompanied with the pounding of little feet running up the stairs.  By the time he reaches me the smoke alarms have stopped as abruptly as they started.  I hug Corbin, explain the noise to him, and turn just in time to remove the green fork from Brian's hand before he is fully situated on the toilet.  Brian pees, smiles, and points to the Skittles bag.

"Great job Brian," says his big brother.

Then the three of us walk downstairs.  Brian first, holding his green fork, and Corbin and I, hand-in-hand following.  The house is quiet.  For now.

Friday, January 3, 2014

Still Writing.

It's no secret that I don't blog nearly as much as I had in years past.

I do still love to write and if someone gives me an idea or something rubs me the wrong way, you know I'm going right to Microsoft Word to write something for it's cathartic, therapeutic properties.

I have a couple pieces floating out there in the internet world.

First was a piece I wrote for Tania over at My Adventures in Mommyland.  She is doing a series on single parents finding love and I wrote the first one for her.  It's meant to inspire and I think anyone in the dating world could probably relate!

The other was a piece that was just released this morning for a local paper, The Bangor Daily News.  There has been a lot of upheaval and dissatisfaction within my school district this year (what's new?).  It's also been the first year that I 100% stand behind the autism program they have developed.   It started to come to my attention that no one really knows what goes into those programs unless you work directly with it or are a parent.  I have a feeling that the majority of parents of typical children in my son's school don't even know there is an autism program.  I wanted to write this piece to give a voice and make people realize how important it is to correctly fund these programs.  Honestly, I'm a tad anxious with the budget concerns that my son's program will be on the chopping block as it has been in the past.

So, even though I'm not writing here as much, I'm hoping you'll continue to read my new pieces and support them as you always have!

Thursday, December 26, 2013

Growth & Hope

Sometimes it's hard to see how far he has really come.  There are everyday frustrations and to accept autism is to know that there will always be frustrations.  Some that come and go, some that stick around for years, some that will pop up out of nowhere.

But in general this whole autism thing is going good.  We've got it down these days and this boy always amazes me.

Christmas isn't always the happiest of days for families on the spectrum.  Routine is thrown off.  Senses are overloaded with smells, noises, and lights.  Lots of people are around wanting to talk to you and hug you.

We've definitely had holidays in the past that were less than happy.  Full of tears and confusion.  But those are like distant memories now.

It's been a couple of years since Brian has had a really hard time with Christmas and each one always tops the previous one.

We only had tears one time yesterday and it was when we didn't let him immediately set up the new electric train track he got.  He was upset but he just whimpered lightly and soon came out of it while he opened the rest of his presents.

I saw a post yesterday from one of my new friends, the mom was exasperated by how off and upset her young boy with autism was from the day's festivities.  And it really made me reflect on Brian's growth but also made me feel like I could offer her hope, which is the best gift I could give anyone on Christmas.

Saturday, September 28, 2013

These Moments.

We were standing at the bathroom sinks brushing our teeth when Brian started stomping his feet in a rhythmic manner.

I watched him and when he stopped he smiled at me.  It was a smile of invitation to play.

So I stomped my feet back in the same pattern.

The reciprocal stomping went on for several more rounds when he decided to add in a spin.

I continued to repeat after him, both of us grinning from ear to ear.

The next spin was accompanied by him speaking the words, "Turn Around". 

It's moments like these, that sneak into the mundane routine of the day, that you miss if you're not living in the moment.

It's moments like these that will keep me smiling for at least a week.  The memory of this moment will push me through the tantrums, the SIBs, the cleaning of the bathroom. ..

These are the moments I live for.