Tag Archives: family

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

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“Dear Friend Whom I Haven’t Seen Much of Lately” 

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Dear Friend Hesitant to Interact With My Special Needs Child

Dear Friend Hesitant to Interact With My Special Needs Child:

I know my child makes you nervous.

It’s okay. Really. I still love you.

Knowing you to be the good and kind person of whom I am fond, I know the lack of interaction with him isn’t deliberate.  You are simply afraid, not of him but of doing something to upset him.  I have had this same fear in being around other people’s special needs kids in the past, so I get it.  I do.  But it makes me sad that you may be holding out and miss getting to know my sweet, precious little boy.  Because he is truly worth knowing.

One of the great wisdom statements about special needs children is that it is important to remember that they are first –children, followed by their special needs.  But I know that many folks, you included, see my child and see his special needs first.  And, I can’t blame you.  He is certainly different.

But, really, he is just a little boy, three years old.  And, though he is autistic and differs from typical children, it doesn’t change the part of him that is, first and foremost, a child.  Those of us who have, love, or work with special needs children get this.  But as my child has grown and his needs have become more evident, I have noticed well-intentioned family, friends, and acquaintances such as yourself struggle with how to interact with my son.

When my friends meet him – and aren’t sure how to engage him – it usually goes something like this:

“Will he get upset if I…?”

“Is he doing this because…”

“But he is so _______!  Are you sure he’s autistic?”

I know you aren’t avoiding him because you find him repugnant.  You are simply hesitant.  You don’t know where to begin.  And you probably feel guilty about it.  You may feel that stress come over you when you see him – wanting to interact with him like you would any other child, but fearful of saying or doing the wrong thing.  It probably doesn’t help that you once saw “Rainman”.   So, you ask questions but hold back, unsure of what to do.  I know you want a clear picture of him – a kind of map to guide you in interacting with him.  And that’s where I can’t completely help you.  Because getting a clear snapshot of a child with special needs is a very difficult thing.  Hence all the specialists.

I have used my three lenses analogy before, as it seems to make the most sense to me.  Often, I try to figure out what is going on with my son and find myself asking, “Which is at play here?  Autism?  Typical Toddler?  Or just Callum?”  I drove myself crazy doing that, trying to break him down into parts in my quest to figure out how to best help him.  And finally it hit me that I cannot analyze him in terms of one or another.  For he is all three.  He is at once a 3-year-old, an autistic child, and himself – Callum.

It’s like trying to take a picture with an SLR camera.  Normally, you can simply point and shoot and get a pretty good picture.  But, if you are in dim lighting, or there is a great deal of movement or distance, you have to use special settings and special lenses to filter and enhance the image.

Trying to figure out what motivates a special needs child can be complex.  To get a picture of that, you need three (or more) lenses.  You need the original camera lens itself to take a simple standard picture.  Then you need a second lens that filters for special needs – autism, Down Syndrome, etc.  You might need, depending on how many special needs conditions the child has, several such lenses.  Finally, you need a lens that enhances that child as an individual.  Because, like everyone else, special needs kids have their own temperaments, interests, fears, etc.  So, to get an accurate picture of a child with special needs, you have to take a picture with all three lenses at the same time.  For if you remove one of the lenses, the picture does not reflect the true child.

The problem is that some of the lenses we need still haven’t been invented.

So what do I say to my friends who honestly want to get to know my son but are hesitant about doing so?  It’s really simple.  Just ask me about him.  I’m all too happy to help you connect with him. I’ll tell you all about him.  Feel free to ask me what he likes.  How you might best make a favorable impression.  What might upset him.  And, then, just go for it.  Visit wearing comfortable clothes and get down on his level.  Take an interest in what he is doing and attempt to join him.  He’ll notice you.  Pretty soon he will likely begin interacting with you to some degree.  And, if you let him warm up to you, you might even get to roughhouse with him and get in some tickling and giggling.  He’ll love you, I promise.  And, if you are unwittingly doing something that might not be the best way of engaging him, I’ll be there to suggest another.  Soon, he may climb up on your lap. He will recognize you in the future and maybe smile when you walk in the door.  You will have made a special little buddy who will melt your heart.

And then you will have a clear picture of my child.  A child like every other –yet not.  A child who loves, laughs, plays, snuggles, fears, delights, and enjoys cookies as much as any other.  He may do all those things differently.  But he does do them.  And knowing him and forging a relationship with him will change both you and him for the better.  For not only is he worth you knowing, I happen to think you are worth him knowing.  :)

Now, let me introduce you to my child.  I think you two are going to like one another.  :)

If you enjoyed this post, you might also like:

Dear Friend Whom I Haven’t Seen Much of Lately

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