Tag Archives: autism awareness

A Taste of Normal

Callum having a ball on the porch swing.

“Nobody realizes that some people expend tremendous energy merely to be normal.”
Albert Camus

One of the first things my good friend Christy shared with me about being a special needs mom is that it is isolating.  It’s isolating for so many reasons.  There is the obvious one – that no one seems to know exactly what you are going through.  And then the reasons you can’t anticipate until you experience them.  The not being able to sit down to enjoy yourself so why bother going?  The  emotions you don’t really want to claim but still exist – the pain of watching typical children having fun, the irritation listening to the parent of the typical child bragging about every little thing you would be too if only you were in her shoes, the anger toward others for daring to have the all-too-human reaction of curiosity, pity, or fear of your child.  Oh yeah, it’s isolating, no matter how much your friends and family still love you and want your company.

People who haven’t experienced it don’t get it.  And, to be fair, “don’t get it” is a popular phrase used in our community to describe everyone not us, but it isn’t really fair.  It’s not my fault that I “don’t get” what it is like to be a POW, cancer patient, or natural disaster survivor.  I simply haven’t experienced it.  And neither have they experienced what we have.  It just is.  I suppose twinges of resentment toward those who don’t get it probably just are as well.  Neither good nor bad – just there.  I think what makes it hard, however, is that people don’t understand just how traumatic the experience can be.  At least in the early days when the future is hazy at best, when you are still attempting to bargain with God, when you aren’t at all certain Fate knew what it was doing assigning this seemingly overwhelming job to you.  There are increasing numbers of parents of special needs children being diagnosed with post traumatic stress disorder.  The same disorder that affects victims of violence and disaster.  But it is invisible in a special needs parent.  After all, to the rest of the world, nobody died.  And the people who like and love you quite naturally want you to be the same person you were.  But you aren’t.  You aren’t your normal self.  Because normal no longer applies to any facet of your life.

This weekend, I had an extraordinary experience.  We took our little family of four to visit a high school friend of my husband’s, Matt.  Matt was in town for Easter visiting his parents at their home.  He brought his 4-year-old NT child Gavin with him.  His sister was there with her 14 month old little girl as well.  Matt was not able to bring his wife or their oldest child Deacon- a sweet little 9-year-old boy with severe autism.  Deacon doesn’t travel well right now, so this was just a quick visit to see his family.

We arrived for dinner.  And I didn’t have to launch into a long explanation for why my son wouldn’t eat their food.  We went into the play area of the living room.  And I didn’t have to endure the seemingly endless attempts to engage him with toys.  When I told them he likes to bat at things on a string, they took it in stride.  Matt’s dad and mom were not at all afraid to touch Callum, yet at the same time knew to go about it slowly.  And they delighted in him, talking about how much he reminded them of their grandson.  Soon, Matt’s dad had Callum on the back porch in a swing.  And my child, who normally is happy but fairly mellow while visiting, was shrieking in giggles and enthusiastic vocalizations.  Soon, he had Callum and the other children loaded up for their first tractor ride.  Matt’s sister and mom weren’t fazed by Callum at all.  And Matt’s 4-year-old Gavin didn’t even once look at my son strangely.  In fact, that precious little boy – upon listening to me repeatedly direct Callum to communicate what he wanted with a sign – actually walked over to me and, in all seriousness and concern, informed me, “He can’t talk. He can’t tell you.”  And then, satisfied he had taken up for Callum, ran off to go play with my daughter.

I even got to sit down and chat for a while.

Before we left, Matt’s parents invited us to bring Callum any time we needed a break.  “We know how to do this.  We’ve done this before.  Seriously, anytime”,  Matt’s dad offered.

It was the most…normal visit with friends and family we’ve had since beginning this journey with Callum.    If you have been on a similar journey, then you know exactly what I’m talking about.

First "tractor" ride.

I don’t mean normal in that I’m calling my child abnormal.  He isn’t in the least abnormal.  He is a just a little boy who smiles, gets excited, laughs, giggles, loves, and plays like any child.  He just expresses all of those a little differently.  I mean normal in that I wasn’t the least bit on edge.  I didn’t need to explain or apologize.  I wasn’t the least bit worried my child would be misunderstood.  You know — normal.  And, though Callum is only three years old, I hadn’t had a taste of normal in what seemed like forever.

While hanging out at the lake with Callum, Matt asked Sean if he knew any other autism dads in our area.  Now I know why.  Now I know why our local CARD holds family days.  Now I understand why there are autism play groups.  Because not only do we as parents need moments of normalcy, so do our special needs kids.  Callum is normally a happy little boy, and he loves being wherever we take him. But around perfect strangers?  I’ve never seen my son so all out happy before.  It’s so easy to think that, because he seems oblivious, he is oblivious.  Yet, clearly, he is not.  He instantly responded to those who knew how to interact with him.  He got a little taste of normal too.

And it got me thinking about how the world could be.  If only those who haven’t experienced our reality for a little while could.  If people were educated about autism in their schools, churches, and communities.   If all of our sons and daughters could be brought out to join the world with no fear of being stared at or feared.  If autism awareness/acceptance became normal rather than some idealistic dream.

If only.

 “You may say I’m a dreamer.  But I’m not the only one.”  

-John Lennon

You might also like:
“Dear Friend Whom I Haven’t Seen Much of Lately” 

“Dear Friend Hesitant to Interact with My Special Needs Child”

Things I Learned On I-75

 Disclaimer:  This is about my particular child and my own experiences raising a child with autism.  I am not attempting to represent the autism parenting community with this post.  As the saying goes, “It’s a spectrum.”  Yes, I already know that our situation is far better than some.  And, yes, I know that our situation is less encouraging than others.  Which is true about most things in life, I suppose. 

Last month, we took our little family of four on our first road trip together to visit family.  It’s an eight-hour drive, and –with a 3 and 4-year-old – we simply weren’t willing to do it any earlier.  But, we loaded up the car, offered a quick ceremonial dance and sacrificial offering to the temper tantrum gods, and headed out.  I expected the worst.  What I got, however, were revelations I didn’t expect to find on Interstate 75:

1.  My son can tolerate much more than I gave him credit for.  He sat, happy as the proverbial clam, and just…enjoyed the ride, man – enjoyed the ride.  If I turned and caught his eye or called his name, he’d just turn and smile…all the way to his eyes.  I swear I fell even deeper in love with my child during those hours on the road.  He is a likable little dude.  He handled museums, crowds, unfamiliar restaurants, my mother’s annoying Jack Russell terrier, hotel rooms, and a rather amusing and startling exploding bath in a Jacuzzi tub.  Knowing how many of our kids in the ASD community struggle in being overwhelmed with sensory issues, I recognize his tolerance of the world around him as one of his strengths.  And, for his sake, I’m so grateful for it.

2.  I think my NT daughter is acting out for attention.  Having viewed “Glass Children” soon after this trip, I worry even more for her.  I really look forward to the end of what I deem “The Great Sacrifice” — making the decision to live on one teacher’s salary while sending my husband back to school full-time.  When you’ve gotten used to a bigger house and cars that consistently run, it hurts more to downsize – especially when raising very young children.  Good times are coming again one day, but it’s not fun.  I dream of being able to decorate a room for just her.  All lavender and white with pops of sunny orange and pink  – like she loves.  I look forward to being able to enroll her in more activities, take her to a concert, or introduce her to the joys of Build a Bear.  Yes, she’ll be just fine simply being loved, but it will do this mama’s heart good to just take her to do something fun without second thoughts.  She needs our attention all the same as her brother.  I so want her to feel we did right by her.

3.  Although Callum certainly has sensory issues – the sensory seeking variety that will inevitably cause much social awkwardness – we are also terribly fortunate in the seemingly random distribution of autistic severity among spectrum kids.  Yeah, it’s autism.  But one person’s autism parenting reality is truly not another’s.  Our boy loves to cuddle.  He gives kisses if requested.  He has never bitten or hit us – though times can change, I know.  He loves to laugh.  And, though by no means even approaching his correct developmental age, he is curious what we are doing.  He usually comes if we call him and seeks us out when he hasn’t seen us for a few minutes.  And he successfully nonverbally communicates what he wants –that he wants to play tickle and get tossed around on the bed or that he wants juice, not milk.  Most of all, though he has never said, “I love you”, he makes joyful eye contact with us that says it just as clearly.  Yes, I want even more for him.  But I also know that in him we have an abundance of joy and rewarding interactions that parents of more severely affected children often miss out on.

4.  People are beginning to become hesitant in how to interact with my child.  I see the concern on the waitresses’ faces when he won’t talk back to them.  I see the dawning realization on the faces of other parents who take a second look now at his flapping and odd vocalizations.  I understand the awkwardness in family and friends who attempt to engage him and are ignored.

5.  Everyone needs time away – including the little ones.  They need a change of scenery too.  Bronwyn and Callum had a ball jumping all over the hotel bed, playing hide and seek in new spaces, and running up and down the long hallways and the staircase of the hotel.  Our daughter learned so much about time, distance, geography, and more.  Vacations aren’t just an indulgence.

6.  My husband is a great daddy.  Of course, I knew this already.  But time and proximity have a way of making you less aware of what you already know.  He is equally involved in everything.  He goes to doctor appointments, attends therapy, gets up in the middle of the night, checks school folders, and accepts our son for who he is.  No parent is perfect, but his children are very aware of how much their daddy loves them.  And I know I’m not in this journey alone.

7.  I’m wound so tight.  I used to love to plan day trips with friends, craft and decorate, and belt out classic rock and country tunes at the top of my lungs in the car. (Being a southern girl, I can sing every line of Bocephus’ greatest hits.)  Yet, prior to this trip, I hadn’t done so in years.  I am no longer capable of sleeping in.  And I can’t return to sleep if I wake up.  I become instantly alert and worries play like a broken record in my head.  Yep, I’m tense alright.  Clearly, I need more carefree fun and laughter.  Infrequent moments of hilarity affect me more now –precisely because they are so rare.  Yet ordering yourself to have fun is a little like trying to tickle yourself, isn’t it?

8.  As the song says, we have a long way to go and a short time to get there.  The only way to do it is to take it one mile at a time.  To look back at our progress , while keeping our eyes on the road.  To, while certainly using the road maps of those who have gone before us, remain aware of sudden detours and unexpected holdups.

And to sing as loudly and as enthusiastically as we are able while on the way.

If you enjoyed this post, you might also like:  “Why I Won’t Be Getting Mother of the Year: Layers of Understanding”