Dear Store Clerk–

I understand that you only spend a limited amount of time with each customer that comes through your lane. You probably have to make some snap judgements just to spark conversation with those in your line. But please understand that sometimes you may judge too quickly.

You see, I was the Mom in your checkout lane this morning. Yeah, the one with the child sitting in the cart, even though he seems way too big to be in there. The child who was “happy screaming” (a.k.a. vocal stimming) quite loudly. I was the Mom with bags under her eyes from years of sleepless nights. The Mom who was very aware that I only had a limited amount of time in your store because of the lighting, sounds, and smells.

You saw me and my boy, the one with the iPad, and chose to say, “Wow! Someone sure is spoiled.” Then you shot me what appeared to be a disapproving glance, like if he was your child there is NO WAY you would let him have something like that. Part of me wanted to cry. Part of me wanted to punch you in the face.

You see, I spent countless hours writing grants to get my son his iPad. Not for the games or videos or music. Not so he could look cool to his peers. I wanted this device for him so that he could communicate with me, my family, and his teachers. I longed to know his thoughts. I longed to give him something portable enough to take with him and ease his anxiety when we are away from the familiar.

My beautiful son has autism. Verbal communication is extremely difficult for him, but he can type. And I am forever thankful for that treasured communication link. His iPad has opened a world between us that was closed before.

Guess what I’m trying to say is that before you deem a child “spoiled” for having a piece of technological equipment, take a second look. Look at that parent — she is wearing an autism lapel pin. Look at that child — he is working so hard to not lose it in your store. We are just people trying to get through our day and we could use your support instead of your disapproval.

my autism lapel pin

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Olivia and I had a discussion on the way to school yesterday about communication.  About how some people can’t use words or have a hard time using words to tell other people what they want or need.

Liv was  taking this in and thinking seriously about it.  Then she said, “Some people use sign language.”

“That’s right, honey.”

“And Christian uses ‘hand language.'” [Huh?]  “When he tells us what we wants by showing us instead of talking.”

Absolutely.

Then our conversation meandered back to her birthday.  However, I was still stuck on her simple explanation to Christian’s non-verbal form of communication.

“Hand Language.”

She gets it.  She really does.  🙂

Wondering about my new header pic?

It’s a picture of our porch light turned blue.  It will remain blue for the month of April.  Maybe it will spark curiosity or interest among the neighbors.  Maybe it will open a door for conversation about autism.  We are willing to talk and/or answer questions for those of you who want to know more.

April is Autism Awareness Month.  April 2nd is World Autism Awareness Day.  In order to help raise awareness (especially on the 2nd), various government buildings and world-known landmarks will be lit up blue.  Families affected by autism (or know someone who is) are lighting their porches blue for the day (or month).  Many of these same people will also be sporting blue clothing on the 2nd. 

Please consider supporting the autism community by lighting your porch blue on the 2nd and/or wearing blue on that day.  The numbers are staggering.  1 in 110.  You know a family affected.  We will be lighting it up and wearing it blue.  Will you?

Autism. 

Today is World Autism Awareness Day (that’s why you may see lots of people wearing blue today).  April is Autism Awareness Month.

When people hear that our son has autism, I often get asked what they can do to help.  For me, it is sometimes hard to come up with things on the spot.  That, and just admitting that I/we may need any help at all.

First of all, please don’t pity Christian or our family.  Austism does bring its own unique challenges, but we have been blessed because of autism, not in spite of autism.

To help Christian — Be patient.  Be understanding.  He sees the whole world differently than you or I.  And I can’t tell you exactly how he sees it, because he can’t tell me.  From what I can tell, he sees the world through pictures.  A photographic memory.  One where you can just about see him pull pictures back into his mind and manipulate them in his mind, too.  Especially anything involving letters (i.e. credits to show and movies, logos for companies, etc.) 

Christian vocally stims (making a humming or yodeling sound) while he works.  This usually means that he is happy.  Sometimes it can get quite loud (then he is REALLY happy or excited!).  To help him, tell him to “Come back to a 3.”  He knows what that means.  (It means normal inside voice.)

Christian has sensory issues.  Some days are more overwhelming to him than others.  His senses just get out of whack.  This is why he constantly runs, climbs, crashes, bumps into others, wants his head gently squeezed between someone’s hands, jumps, spins, loses his clothes, drops to the ground, etc.  Please be understanding that he struggles with this everyday. 

Christian has sleep issues.  Sometimes he just can’t fall asleep or get back to sleep if he wakes up.  But think about it, he has all of this visual imagery swirling through his mind.  I think that is why some nights he just needs to spell with his letter blocks or write on his doodleboards until all of these words are out.  It would be like me writing a list.  It’s hard to blame him for that.

To help our family — Be patient.  Be understanding.  We are trying to do our best and often wonder if our best is good enough.

We are somewhat lonely.  It is not as easy to just leave the house as it used to be.  Our lives follow a pretty rigid schedule (at least during the week).  We often only “see” our friends/family on the computer (especially through Facebook).  While this is nice, it isn’t the same as having a face-to-face conversation with another adult.  So, feel free to stop by and visit.  Bring a coffee over.  (Remember C’s sleep issues.  That means that we’re not getting good sleep either.)  Consider this an open invitation.  (Not wanting to be a burden.)   Understand that, particularly, my conversations come back to the kids.  Many of my hobbies have gone by the side for now, turning instead to researching on the computer, keeping schedules, running errands, and trying to keep up with the housework.  If you do stop by, just know that our house is a bit of a circus.  Please bear with us and see around that. 

Liv is lonely, too, and is in need of undivided attention and friends.  Come play with her.  Build sandcastles in the backyard.  Play Barbies with her.  Read her stories.  Bake with her.  I wish that I could be everything that both of my children need, but I often fall short and Liv seems to lose out the most.

We go through a never-ending supply of products of cleaning up “incidents”.  We are always in need of paper towels, baby wipes, carpet cleaner, and plastic bags.

It is a bit scary to let people “into our life.”  To fully admit to what our daily life is like.  Our pride gets in the way.  Our fear gets in the way.  Will we be judged for the parents we are or lack there of?  Because we can’t handle it all?  For the things that we miss?  As we try to be two steps ahead and anticipate every possible thing that could happen, but we often fail to see it all and end up with someone streaking through the backyard while our neighbors are trying to eat their dinner or chasing someone through the store because we stopped to read the ingredients on a package or struggling with someone who is overwhelmed and “wet noodling” on the floor?  You could be the person who offers to stay with/talk to Liv as C is wrangled and calmed down.  Olivia is the younger sister, but she often has to step into a role of responsibility far beyond her years. 

To help our whole family — Pray for us.  We all need God’s strength to make it through the day.

Rejoice with us.  Even the smallest accomplishments are HUGE deals in our family.  Skills that look easy are learned through hard work and sometimes endless struggle.  Rejoice!  🙂

Understand that it is not always easy for us to come and visit you.  Christian gets overwhelmed in new environments.  Some times that means that our stays have be be (very) limited, especially if he becomes obsessed with something that he shouldn’t be playing with.  (If you don’t want him re-organizing your movies by what company put them out, be sure to put them away before we come.)  Let us know if there is an area he can go to get away from everyone if he gets overwhelmed.  If there is a DVD player that he can utilize to de-stress himself.  Ask if you can come visit us here, our home is “Christian-proofed” and we will not be so edgy and distracted keeping tabs on him at our own home.

If you have questions about Christian’s autism, please ask.  I am more than happy to answer them.

Understand that each person (and family) with autism is different.  We will have different challenges and different needs, but we all just need support without judgement and someone who truly cares.