Autism and Friendship ~ A Classmate’s Perspective

I’ve been doing the weekly autism blog post every April for years now and this was the first time I shared posts written from other people’s perspective. Even though these are all people in my life it was interesting and moving to read their words and see what they see. I’m glad we did it this way and I hope that if you’ve been reading the posts that you’ve enjoyed them as well.

I waffled back and forth a lot before asking the author to share his perspective for this post. The other three were written from the perspective of family member or a long time family friend. Also, all grown ups. But this last one, the last perspective I wanted us to hear, is from one of Sam’s peers.

Community has always been a big deal to Sam and even before he became a student at Trinitas he knew everybody. He would pour over the girls’ yearbooks each year memorizing names and faces. Community has been a big deal for us too as we have walked this journey on the road of autism.  Life with autism is a beautiful complication made easier through the communities of family and friends.
We wouldn’t be where we are with Sam if it hadn’t been for the love and support of the people around us.

It is a whole other blog post to explain what I mean about community and maybe I will write it in the future, but for now let me just make it clear that I am not talking about tolerance. It’s not enough to just have people around you that are willing to overlook or humor certain autistic behaviors. Understanding limitations and taking them into account is one thing, low expectations and excuse making is another.

When I asked the parents of one of Sam’s classmates about writing something for this series I knew it was risky, it felt more vulnerable. But we also trusted this family because we’ve seen the way they’ve raised this young man and the kindness he has always shown Sam. We’ve seen him reach out to try and help Sam deal with a hard minute or just include him in the day to day life at school. (I should note that while I did ask this family to write the blog post specifically it’s not just because he is the only one to treat Sam this way. Thankfully, this is the norm for our school community to varying degrees.)

From Clark ~

Having Sam in my class is both challenging and enjoyable.  You always have to remember that you have to treat him differently and that some things he cannot control.  You have to forgive the things that annoy you and always remember that you are friends.  You cannot laugh at things that are not normal and you cannot allow your other classmates to lead you astray.  Everyone has their highs and lows, Sam is no exception.  While he might struggle in some areas his cartoons are a gift from God.  Where I can only draw stick figures, Sam can create incredible comics and never runs out of clever dialogue with witty puns and plays on words to go with them.  He is very gifted and a good friend.

Short and sweet and to the point, huh? But it so perfectly reflects some truths that I think we can all be reminded of. Loving people, being in relationship with each other whether there is autism or not, requires something from us. We have to be forgiving. We all annoy each other sometimes. We all can be thoughtless or unaware. We need to be willing to see beyond our differences. We need to look for the good in each other.

In a nutshell we all need grace.  This isn’t the first time we’ve seen that life could be a little sweeter if we all lived a little more autistically. 


A Father’s Perspective     A Sister’s Perspective     A Teacher’s Perspective 

Keeping Level

I’ve been doing the April autism posts for several years now and for some reason I am finding it difficult to do this year.

Partly because Sam is in that age range where parenting is more difficult than ever before. What children at this stage need is far less tangible than the needs of the toddler and young childhood years. Autism just adds a little extra something something to the equation.

When you first enter the world of autism everything is slightly skewed and off center. Things are sort of out of focus and it takes a minute to adjust. You begin to find your balance as the fog of diagnosis and research and information lifts. Slowly but surely you begin to find your way…to make your way…through a world where things are almost the same but not quite and a wrong step has pretty serious consequences.

It’s hit and miss and trial and error. But because they’re smaller it is easier to see what they need so you can at least have an idea of what they need from you.

Speech therapy? Check.

Occupational therapy? Check.

Special diet? Check.

Move on to medication? Check.

But we’re not in that stage anymore. We’ve done those things.

So now what? What’s next?

But the world is almost silent in response. See, until the 90’s autism was considered a relatively rare thing. Then in the early 00’s it was not only more common to hear the term autism spectrum disorder it seemed we were experiencing an epidemic. (This is generally attributed to better diagnostic categories and awareness of autism in general.) And now, all of those children who were part of that first wave are coming of age and research on autism and the teen years is practically non existent. We are the research.

And let me tell you, we’re clueless. When Sam was younger I could write a blog post about going gluten free or how we handled sensory issues. But the issues as a teenager are less concrete and so are the answers.

I’d rather forge ahead on our own though, honestly. Our world view and perspective is a totally different shape than where most of the specialist and experts are coming from. What they consider typical teenage behavior and rebellion is not a paradigm we share. Not for our neurotypical teens much less our autistic teenage son.

Oh, I’ll keep reading everything that comes my way and I will sort and sift and mine the nuggets that are beneficial to us. But it will be sorted and sifted through our paradigm…a world view that is Biblical and the same for all of us. Because we may need to adapt and relate to Sam differently but God doesn’t. That’s our standard. It’s where we find our balance and keep our thinking straight.

We’ll constantly slow him down and make him do and redo his written work because no matter how much he wants to “just get it over with” so he can play with Legos we want him to learn the truth that we only offer our best efforts and work because we want to honor God with everything we do.

We’ll work to help Sam find, establish and use a filter between his brain and his mouth because God says that our words and the way we say them mean something.

We’ll continue to insist that he show kindness and respectfulness to everyone because, just like him, they are made in the image of God. And that means we have to help him understand what disrespect is because he simply doesn’t get it.

We’ll keep drawing him back to understand “doing unto others” because empathy is not something that always comes easily to him.

We will continue to raise him as we raise his sisters…to do justice, and to love kindness, and to walk humbly with our God.

To do anything less would be to despise the gift that he is to us, to our family, to our church, and to our community.

Now for a Sam funny:

He has an amazing knack for inserting his own lyrics into almost any song and still maintaining the original song’s melody and pitch. So right now I want you to think of Queen’s classic “We Are The Champions”. Got it in your head? Good. Now instead of the words, “…no time for losers…” I want you to hear, “…no time for play time…” It was his anthem the other morning when he had to pick up his room instead of playing before school.

And, yes it was stuck in my head almost the entire day.

The First Week of April

Day One ~
Spring has sprung and the shades of green are lovely.

Day Two ~
Hints of rain as clouds roll across the sky. There is a weird but beautiful light that comes with gray clouds such as these.

Day Three ~
The first day of Spring Break 2015! Where else would we spend it?

spring_break_2015_Florida_Pensacola_Beach_surf_sand_Gulf_of_Mexico

Day Four ~
I love the beach. My kids love the beach. My beloved does not love the beach. It’s not often that we all go together but on Saturday we went to Ft Pickens and stomped around before heading to the beach to have a dinner picnic. I do a lot of pictures at the fort but for some reason this is the first year I am really noticing the pretty little wild flowers growing everywhere.

Day Five ~ Resurrection Day!
What a blessed and wonderful day we celebrate!

Day Six ~
Monday was low key and laid back. Not having to juggle everyone’s schedules and activities is a nice break from this busy almost at the end of the school year season. Plus it’s grilling time!

Day Seven ~

Again at the fort and the beach! Sam loves the fort and  when we went Saturday he didn’t get to spend as much time exploring as he wanted so I promised we’d go back. The easy thing about these last few visits is that we’re not actually swimming. We enjoy our picnic and watch the sun set. Can you think of a better way to end the day than this?

Linking up with Sharing His Beauty

Choosing To Remember

I don’t ever forget that Sam has autism.

I forget how hard it can be sometimes until it isn’t easy.

We slip into a rhythm with our days and everything is just moving along like…normal. Sure our normal looks differently than other people’s normal but we know our normal. We’re comfortable with it.

Until something triggers something ~ what,  we don’t really know exactly, but suddenly it’s not just that he thinks differently or words things in quirky ways or processes differently.

Like many kids his age he can be overwhelmed with the typical teenage angst and emotions, but for him it’s anything but typical. It’s filtered through autism and that means he’s drowning in it and the only way he can find himself…to understand…to find something real to him that makes any sense at all is to literally lay in his bed rocking back and forth so that his head is banging hard against the wall.

I hear the odd thumping sound and go investigate and rush in to make him stop and his body is so tense as he fights all that he is feeling that he is literally shaking. Puberty and boys is a testosterone induced need to battle, to fight against something or someone and you’re angry and you don’t even know why.

That washes through Sam like a tidal wave and all he knows is that the feelings feel bad which means he’s bad and he should be punished. And the words tumble out of his mouth…how wicked he is, how evil, and please just will you just hit me because I’m bad.

And I wonder if this is what Martin Luther felt when he would spend hours beating himself and confessing anything and everything that came into his mind as I hold onto Sam’s hand to stop him from hitting himself.

I try to keep my voice calm, to not add any more emotion to an already charged moment. I remind him who he is and who he belongs to, and he’s not evil because Christ lives in him. For a moment his tense muscles relax and I think we’re done, that maybe this episode will be short lived so I get up to leave. Immediately he becomes wound up and we start all over. Eventually, we pray together and he is able to sleep. The next morning he wakes up and it’s as if none of it happened. He is his normal happy self, cracking jokes and hurrying his sisters out the door for school.

The reminder of how invasive and disruptive autism can be was harsh. And if I lived there, if I allowed myself to dwell in that dark exhaustive place, you’d probably find me rocking back and forth banging my head against the wall, too.

But God is gracious and reminds me where the light is. I’m not the only one fighting the dragon on Sam’s behalf, this was just my turn. Thankfully, Rob has his turns and that, too, is part of the rhythm of life with autism. We tag off the two of us, because some days my words don’t soothe and Sam needs the deeper tone of his father’s voice, the strength of maleness because he needs to push as hard as he can against something that won’t give, to hide behind a strength greater than his own.

We also choose to remember the things that aren’t so hard.

Instead of the angry self incriminating words we remember his fascination with puns and words.

We choose to remember the laughter he brings.

The hugs he so easily bestows and the way he comes up and kisses the top of my head when I’m at the computer. Or the squeeze hug goodnight for Rob when he tries to lift him off his feet.

Instead of remembering the sound of fear in his voice because he’s flooded with emotion, we remember his practically perfect comedic timing and intonation as he quotes movie lines, or commercials, or the latest AFV clip that has caught his attention.

We choose to remember that he is fearfully and wonderfully made.

That he is our gift, autism and all.

April is autism awareness month. As has become my custom I will blog periodically throughout the next four weeks on what our life is like with autism. I hope you’ll join me in gaining a glimpse inside Sam’s world and while I won’t promise a Sam story every week I do have one to share today.

A few months back I let him create a Sam’s Lego Board on my Pinterest account. He has over 400 hundred pins and almost everyday I get notifications of people following the board. He’s pretty sure this has made him famous.

Sam also enjoys all things Star Wars and I came across some kind of SW meme and thought he would find it funny so I pinned it to the board. I was excited to show it to him but did not quite get the response I was expecting. I pulled it up on the computer and called him over.

Me: Hey, look at this Star Wars thing I pinned for you. Isn’t it funny?

He started to laugh but the smile slowly died away and his eyebrows came together as a confused look covered his face.

Sam: It’s not Lego.

Me: What? Oh. No, I guess it’s not but isn’t it funny?

He just looks at me, blinking, baffled that I just don’t seem to get it. I sigh.

Me: You want me to delete it?

Sam: It’s not Lego, Mom.

Apparently it’s only funny if it’s Lego and pinned to the Lego board. My bad.