What Do You Mean As Love?

We recently had to fill out some paperwork for Andreas, to apply for some support/resources for him and ultimately our family. And by recently what I really mean is that I’ve been sitting on this paperwork since he got diagnosed in February of 2013. It’s not that we were leaving him hanging in the meantime, by any stretch, but that we thought we had a handle on things on our own. Which we more or less do. Or did? Or thought we did? Until we hit a ceiling in our own ability to support and equip him. So the paperwork had to happen.

It’s a funny thing having a “high functioning” child on the Autism Spectrum. He can and does pass for typical sometimes. He has siblings who he follows and imitates, and who naturally accommodate and include him. In that respect, he is a blessed boy. It was working for a long time. Until he recently started to voice frustration over his own differences from those same siblings for whom certain things just come so much easier. Things like talking to new people, making friends, or joining a group of children playing. So when people comment on how “normal” he seems in any given situation, they are seeing the result of much struggle on his part to fit in and do what everyone else is doing even though he doesn’t always understand it. They are seeing him reaching to his own ceiling, but they are not seeing the tears of frustration and head banging and grief that follows after. After school, after church, after that playdate while my other children are doing what they do, Andreas needs more. More time to process, more time to run around, more time to be still. More of us and less of us, of everything.

We cannot do this alone anymore. As part of the paperwork, another parent in a support group I am part of suggested that we write an impact letter. Even after writing that letter, I still had a hard time finishing the paperwork and getting it to the doctor to sign off on. Until I spoke with a friend who works with special needs teenagers. And as part of her work with those students, she works with their parents in helping them with ‘next steps’ for support, funding, and advocacy as their children become adults in the legal sense of the word. She says that they struggle too, those parents of almost-adults. They struggle to get the papers in for all of their reasons which are probably not that different from mine. But it was good to hear that this is a normal part of our abnormal journey. It was the push I needed to get the ball rolling. The following is the impact letter that I wrote for Andreas. It has been somewhat edited for privacy.

Completing the required paperwork to apply for this support for our 7 year old son Andreas has taken us some time. Time to process his diagnosis and to work out what that means for him and for us in our day to day life and for the future. So much of our time and energy is spent on building up his strengths and strategizing from struggle to success, that to detail and highlight his every challenge and deficit in order to seek help for him and for our family as a whole, has felt almost as though we are selling him out.

When we talk about his often strict adherence to routine, do we tell you how he’s slept with the same teddy bear since the day he was born, and that a silly, dirty, ripped, and faded bear with a rattle in its tummy is the most precious and valuable material possession in our home?
When we say that he struggles through every meal we eat, gagging and choking on most any foods he puts in his mouth outside of his limited list of ‘acceptable’ foods, do we tell you about that one time he swallowed a tiny nibble of chicken and didn’t throw it up? And how we cried tears of astonishment over our own plates of uneaten food?

When we detail the struggle he has in playing and socializing with other children, do we tell you about the time he convinced his younger brother to do things his way by telling him that they weren’t just lining up the cars – they were playing ‘parking lot!’ Or about his mother stealthily taking a picture with my phone the first time he ran to a group of children playing soccer, ran away, and then ran back again to try and join them in their play, when he was 6?

Autism is a word that goes down hard, like the food Andreas chokes on and can’t keep in his stomach. Yes, our son is on the autism spectrum and he does face challenges that are unlike those our typical children will ever encounter. We sought answers and assessments for him in order to better understand and advocate for him, and so that he could better understand and hopefully advocate for himself one day.

Years ago, when the Child Development Center at the Alberta Children’s Hospital called to do an over the phone intake questionnaire, they asked me what word I would choose if I had to describe Andreas with just one. At the time I chose the word “inconsistent” to describe the gap between his brilliance with letters, numbers, patterns, and words and his simultaneous struggle to express himself with those words and use them to relate to others. The psychologist would later go on to describe him by saying that “he has all of this wonderful language but doesn’t know what to do with it.” He never went through that maddening phase of preschool development where he asked us questions. He never asked why or how, skipping those questions in favor of giving us answers and telling us random, seemingly disconnected facts that would always fit together like pieces of a puzzle in the end.

Today, he still possesses that brilliance with words and is able to read text many years beyond his grade 2 level. He will lecture for days on a topic of his interest, but still fails to understand the rhythm and complexity of a simple back and forth, give and take, conversation. He will read from a University geology textbook with fascination, while being unable to understand a pun in a simple child’s storybook. The gap between his ability and his comprehension is a conundrum. Perhaps he will learn to use written language that he can see and touch, with more fluency than the verbal language that confuses and frustrates him, and perhaps that will turn into something that this world needs from him.

Disability is a word that is too loud and too loaded, like a birthday party that overstimulates our boy to the point of tears. He covers his ears and searches for his headphones like we keep avoiding this paperwork, in an attempt to make it go away and not be necessary. When another autism parent suggested writing an impact letter as a means of humanizing our experience, it was something that we could do. Something to soften our story and make it less clinical. We don’t use the word disabled to describe our son, but words are like keys to him and it seems that this word, “disability” – this is the one that opens the door to help for him and our family.

Our application here is made with the hesitation of parents who tirelessly see and seek the best in our children and not the worst, but who also realize the need to also seek the best for our children, and in this case the best for Andreas.

With Gratitude,
Glenn & Jenna Pelias, for Andreas
October 2, 2014

Advocating for our child has perhaps been the most difficult part of this journey for us. We see him and love him and appreciate him as he is. He is perfect. He is fascinating. He is ours. So sharing him is hard. Explaining him and ourselves over and over is tiresome. But we do it. We will keep doing it for as long as we have to and we will teach him to do it for himself. Parenting a child who needs more, has made us better. It’s made us better for him and for our other children. There is a tenacity in special needs parents that shows up in the most random of moments.

When we sit down in those IPP meetings with the school, we are advocating.
When we tell the grocery store clerk who is annoyed with him pushing the conveyor belt button that he is on the spectrum and likes the button, we are advocating.
When we tell him it’s okay to be in his room by himself when the house is full of people and he’s had enough, we are advocating.
When we tell people who tell us he “can’t” have autism for this or that reason that they don’t get to make that call, we are advocating.
When we stay home from church for 3 years because he.just.can’t.handle.it. – and nobody understands but we do it anyway? We are advocating.
When we go back to church and help him with his frustrations there because he is ready now, we are advocating.
When we write blogs and read blogs and books and articles, just to understand or be understood, we are advocating.

Advocacy is opening doors. It’s about finding freedom and hope and breakthrough, and showing the way there. It is unapologetic. I am not sorry to have to ask for help anymore. I’m not shying away from the conversations or the hard words anymore. There is no room for shyness or sorrow in advocacy. It’s a place full of grace. It’s a messy kind of grace and it doesn’t always bring out the best in us, but there is grace for that, too. It is entirely okay to fall apart in holding someone else up. It is human. We can only do so much and be so much.

Andreas met a new baby cousin this summer. My sister delivered a boy named Coen in August. Andreas was fascinated with baby Coen. As he stared at the baby, I asked him “Do you love Coen?”

He looked up and asked me back, “What do you mean as love?”

“When your heart is happy when you see him?” I replied.

“Yeah, I love him.” Andreas said simply.

Andreas smitten with baby Coen.
Andreas smitten with baby Coen.

Love means a lot of things. Sometimes it means paperwork and impact letters and blogs and hard conversations. This is what we mean as love.

copyright (c) 2014 Jenna Pelias // all rights reserved

One thought on “What Do You Mean As Love?

  1. This makes me weep because I wish someone would have talked about this stuff years and years ago so my brother would not still live at home with my parents at age 50 (well some of that is because he of a kidney disease then transplant). …with a dad who never understood him or even tried to realise why they were different. Dad who doesn’t do intellectual but thinks someone who can’t do ingenuity is ‘dumb’. So you can imagine what that ‘home’ is like.

    I think of your family often and pray for you.
    Sandy in the UK
    PS I remember you writing about Andreas and something about memorising numbers. My brother started working out by hand-in his head pi when he was in his teens. He was going to memorise a notebook page of pi. The last time I was there a few years ago, he had pages of pi he had worked out and wrote down. I don’t think he is memorising them now.
    He also spent a great number of years driving around the state of Maine where they live. First every county, then town, and eventually every road in the state. He started into New England from there, but then he got to ill to travel. But he can tell you all about population increases and decreases in just about any area of Maine.
    Anyway, that’s enough of that story. But I am so glad things are happening so yours is different.


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