Autism Awareness Wreath and Our Autism Story

Posted in AUTISM, STORIES
on April 30, 2014

April is Autism Awareness Month.  Throughout the month, although I knew I wanted to share something in honor of Autism Awareness, I just couldn’t figure out what it was that I wanted to share. how do you share a story in progress? It’s been causing me to have a bit of a writer’s block, as I’ve struggled with how to put fingers to keyboard, so to speak. It was so important to me to get it right.

There is, of course, only one way really to tell you about it and that is in the same way that I do most things in my life, including dealing with autism. With a bit of humor, to take the edge off the craziness of it all, with lots of love and understanding, probably way too many words.. and, of course, with a craft. After all, crafting makes everything better. The craft? A wreath in honor of Autism Awareness month. I’ve never met a  wreath I didn’t like!

First, let me tell you a bit about me. I’m a fairly simple creature. Thanks to my Mom, my life has always been lived according to some simple rules. A few pivotal ones are:

  1. When something is broken, or there is a problem, you search and search for a solution until you find one. There always is one.
  2. If you work hard enough, and you want something badly enough, you can achieve or overcome everything.

I’m sure you can see the flaw in this logic right off, but truthfully, that carried me pretty far. Unfortunately, as with any rule, there are always exceptions. Autism is a big exception. You can’t fix autism. You can work around autism, and you can work on it.. but you can’t make it go away. No matter how hard you try.

Running against the wind

Now about my monkey. Ayden, is nearly 7-years old. He is our youngest child – the baby of five. He was my largest baby – a brute born weighing 9lbs 1oz. He was always a good sleeper (we’re so lucky), he ate well – at least until he figured out that he could choose – and he was a pretty happy baby. Still, we’d noticed started to notice little things, but, they were the kind of stuff that made you go hmmm, not that would cause you run to the pediatrician. We often commented to each other and him in ways like.. “I can so tell you love that ceiling fan better than you love Mommy or Daddy, Ayden!”. All babies love ceiling fans.. but not all babies love-love-lovey-love ceiling fans. Still, it was in hindsight that we realized which ceiling fan camp Ayden fell into.

6-7 looking at the camera – It doesn’t get better than that!

When he was around 14-15 months, it started to become obvious that something was amiss. About that time, he began to disassociate with us. Around that time, he began to sit in the corner of the room, with his back to us, and play with his toys, often with his toys upside down, examining the parts of the toy rather than the toy itself. If you tried to sit with him and take part, he’d turn his little body completely around so that again, his little back was to you. He was like a magnet, with us being the opposite end of the pole – you’d move, he’d move, you’d try the other side, he’d go the other way, until he’d eventually get annoyed with us and just get up and walk away. Of course, being the annoying parents we are, we’d follow, but we’d always get the same response. He never asked us what things were, although, we told him endlessly, and he didn’t look to us for answers like our older children had. He didn’t point or share things of interest, he had really no reaction to any kind of emotion from others, and, he stopped responding to loud noises.. Until about a year ago, he never responded to his name in any way. He also was excessively attached to me – I nursed him and he was still a baby, so attachment made sense, but what didn’t make sense was his complete aversion to everyone else –  including his Daddy. It was so tough on Shay. Ayden would cry if he attempted to make eye contact and it was like wrestle mania for him to attempt to hold him. Thank goodness those days are past us – over the past six months, Ayden has become all about his Daddy.. there is no happier Daddy, I can assure you!

 

 

All of these little things began to add up. And, true to form, I jumped into fix-it mode. I have a rule for that and a plan and therefore, an execution. I saw a problem.. there had to be a solution. I began to research what could be going on, more in an effort to disprove what I already suspected, that my son may have autism, but unfortunately, I didn’t find facts to disprove anything. Every search I did came back with the same possibility. Our child might have autism. And, everything said the same thing. Early detection is crucial. Don’t wait. If you suspect it, push for it until you get what you need. The first problem? I was the only one who suspected it at that point. But, I was in fix it mode. So, we started by asking his pediatrician at a routine visit – she was not convinced. As a matter of fact, it wasn’t easy to convince anyone that it might be autism, family included. There was a lot of “he seems just fine to me” and “you’re comparing him to your other children and want him to be perfect” kinds of words flying around. It was one of the most difficult times in my life, with all kinds of second-guessing of myself, even more so than normal – I felt like such a jerk, and as though I wanted something to be wrong with my child to prove my point, all based on nothing more than a hunch – he was so little, and his motor skills seemed fine, but something just didn’t seem right, and I couldn’t let it go. I had to fix it. We had to find a solution. We had to find that point that would give us the golden key, to the golden city that would make it alright.

I made a whole bunch of phone calls, went over my pediatrician’s head and booked a hearing test, to rule that out. His hearing was fine. We called the county, and had him assessed – and finally, we found someone to listen and agree. Yes, there was a delay. Although they weren’t sure he had autism, they did agree that there was a delay. There were some things we needed to work on. I was all about working for a solution! We weren’t sure he had autism either.. we didn’t really want to think he did honestly, but as I said, something wasn’t right and doing nothing seemed like entirely the wrong thing to be doing. He was given a diagnosis of Developmental Delay – he was 18 months old.

We began an Early Childhood Intervention program when he was 2. Not all children who have developmental delays have autism, and many do overcome the delays with early intervention programs, but in our case, although Ayden was making small steps of progress, as time went on, he began to fall further and further behind the progress of his peers, despite our working with him and relentlessly searching for what else we could do. He was slow to talk and was echolalic, which means he spent (ds) a good deal of time repeating phrases he’s heard or liked the sound of over and over again. We jokingly considered to speak Spanish, because he had that language down pat – Dora was a favorite TV show and he’d picked up every phrase, memorizing entire episodes. The Wonder Pets were another favorite – we swear Linny, the Wonder Guinea Pig, moved in with us for about a year – and didn’t pay any rent I might add.

He loved music, and the conversational words he did know at the time, had all been taught to him using music or said in a sing-songy voice. He’d recite them back in the same tone and sing-songy voice. His therapists taught us, and we learned quickly,  to use things of interest to him. Things of value. Books he loved. Songs he liked to sing. Anything to connect with him. We learned especially quick that he had to see value in what we were teaching or it was a no go, knowledge that has been invaluable to us ever since. We remained hopeful – if he did have autism – and we still weren’t sure he did – he seemed very mildly affected, because although he had almost no conversational language, he had a ridiculously varied vocabulary and could label just about anything you put in front of him. And, he spoke Dora Spanish!

 

 

He continued to work through one or another Early Childhood Education programs, and progress continued, but he still continued to fall behind. I kept searching and searching and searching for answers and trying new things.  It was so hard watching his peers pass him by, skipping entire milestone groups.  But, we kept pushing. We kept searching. I kept trying to fit our lives into what I believed. But real life isn’t like that. Sometimes, you can work and try and push and still.. some things can’t be fixed, and sometimes there isn’t a solution, and it didn’t occur to me that sometimes, changing what you want, changing what you believe, is the best option of all.

 

When Ayden was 4, turning 5, he was given a medical diagnosis of Autism Spectrum Disorder. Oddly, despite knowing deep down that he was on the spectrum all along, the actual diagnosis was hard to hear. It was evident to us, but it was as if the diagnosis of Developmental Delay gave us a sense of hope that it was something that he would eventually grow out of – being told he was on the spectrum took that hope away. Then, a year later, we received a second diagnosis of Autism Spectrum Disorder through our county school system, because in Virginia, from a school perspective, a child must have a diagnosis of autism through the school board to be eligible for autism services.  Again, it was jarring to hear, despite the fact that he’d already been given a medical diagnosis. Every time I heard someone else say it, it was as if I was hearing it for the first time. I was losing more hope. And, when I lost hope, I just kind of.. stopped. I was exhausted from trying so hard to make it better, from fighting the possibility that my kid had autism. From fighting autism. Because I couldn’t stop it. It was here. He had it. And all of the fighting and trying was for naught. It was getting close to the summer and I just made the decision to just.. stop.

For that summer, I just allowed things to happen. This is totally against my nature, but for the first time in the longest time, I had no plan, no procedure, no idea how to proceed, so there was nothing else for me to do. I didn’t look for other ways to reach him, or teach him, or other ways to overcome autism, because what I’d figured out was that I couldn’t. No matter how badly I wanted to. And, although it never seemed okay to just let it happen the way it happened, I had no idea what to do next. I started to think that maybe it would be okay if he didn’t progress. He seemed happy, and carefree. Not everyone needs to be an over-achiever. Maybe I needed to stop pushing so hard, advocating so hard, trying so hard. Maybe I just need to let life happen and to see where life would take him. Then, life happened.

The start of kindergarten for Ayden was the stuff that you dread for any child, but even more so for a child who can’t tell you what is going on. He started off in an autism classroom where he, and none of his classmates, needs were being met. My happy-go-lucky kid started to disappear right before my eyes. Initially, he did not balk at going to school, but he began to have nightmares where he’d wake up screaming. It started off as once a week, but by October of that year, it was nearly every night, and for the first time in his life, he didn’t want to go to school. His stimming was uncontrollable, as if he was in a state of constant anxiety. His eyes were glazed over. He didn’t respond when spoken to. He began reverting, which he’d never done before. He’d been verbal, with emerging skills prior to starting, and the teacher was trying to have him use a voice device. He wasn’t eating. I’d pick him up, we’d come home and he’d just run back and forth and back and forth. I kept asking the teacher if things were going alright and explaining what was going on with him – The responses I received – “No, it’s all fine”. “He’s fine”. And, I quote, “He’s not progressing as quickly as one of the other students in the class at his grade level, but he’s doing OK, I guess”. Finally, around Halloween, we’d had enough. I asked to come in to observe him in the classroom. Everyone was on their best behavior, of course, but their best behavior was not great. I asked for a meeting with the principal, decided my son was not going back to the class as it was. I didn’t know what where he was going to go, and I didn’t have any more of a plan than I’d had at the start of the year, but as the class was, he was not returning. And, he did not, until they’d provided a solution.

 

Luckily, since we were really going on instinct, pulling him out at that time was the right thing to do. The nightmares stopped, but he was still just so lost. So misdirected. After Christmas of that school year, his teacher took an “extended leave of absence”, which ended up being permanent – Good thing.  Ayden started back to school for the second half of the year and thankfully, through his new teacher, he bounced back. Unfortunately, the first half had taken it’s toll though and by the end of the year, he was pretty behind and his confidence was pretty low. So was mine. I would love to say at that point that I was all prepped and ready to go with guns blazing so to speak, but I wasn’t. I was more war-torn and lost. I knew what we were doing wasn’t right for him, and I couldn’t take another year of the possibility of anything like he’d just gone through, but I had no idea which way to go next. Private school? Same school? Another school? I just didn’t know.

 

Art by Ayden, writing by me!

Around the same time as we were going through the Kindergarten nightmare – no pun intended –  we started ABA therapy on the recommendation of a dear friend. This friend, and our ABA, saved us. Saved me. It was through ABA therapy that I snapped out of it. It was all started to become really apparent once I was out of my own head.. No one was going to save my child.. except us.  And, maybe, what I’d been trying to make happen was the wrong thing to make happen to begin with.. It wasn’t about making him not have autism.. it was about helping to learn to excel in it.

We started throwing around the idea of homeschooling. I was terrified. How could I possibly teach my child? What if I screwed it up? What if I missed something? My list of what ifs was endless and kept me up at night. I thought about it and thought about it all summer and finally decided to give it a try. I could always put him back in school if it didn’t go as I hoped.  Our ABA encouraged us and gave us the confidence to begin. She gave us all something we’d sadly been lacking and didn’t even realize.. she gave us hope. And, she gave me back my belief that we can do anything if we try.

It has been the right choice for Ayden. He’s done well, and we’re both comfortable with it. He’s taken some tremendous strides this year. He’s happy. He’s content. It’s not for everyone. But, it’s right for us.

 

When I look back on those early days, I wish I could tell myself not to lose sight of what keeps me going – I really can do whatever I want to do with enough effort.. sometimes, you are just trying to achieve the wrong goal.

Life is good. Some days, it’s a challenging life, but whose life isn’t? Most days, it’s very satisfying. It’s a different life than we thought we’d have – homeschooling – I never in a million years ever thought I’d be doing that – but we’ve learned to be a whole lot more flexible through it all. Do we wish for a place where Ayden doesn’t have autism? Yes, of course.  For him, we wish that – for him not to have to work harder than seems fair. But, the truth is, it doesn’t really matter anymore.. What we want more than anything is for him to be happy and fulfilled and accomplishing his own greatness.. whatever that is. He can do that with or without Autism. We have peace and happiness  and love, right where we are, and we are proud of our son and all he has accomplished.. all he will accomplish. He is a great kid – he’s funny, and smart, determined, with a zest for life and a mischievous, cheeky streak that few can not find endearing if they spend any time with him. He’s sweet, and thoughtful and gentle. On many days, he’s like any other kid – teasing and chatting away, sharing thoughts and ideas and endlessly trying to engage you in one game or another. But on some days, he’s in his own world, and it’s hard for him to participate in anything at all. It’s on those days.. after a bit of frustration over the great day we most likely had before.. that we step up and we love him more fiercely; we keep him going, we try to keep him engaged, and we try to keep ourselves in his sights so he always knows we’re there – no matter what. And, he in turn, tries a little harder to stay with us. To stay out of his world. He tries so hard, because, if I’ve taught him anything, it’s that you can do anything want to do, if you want it bad enough and you put forth the effort. And, he in turn, has taught me what that really and truly means.

Do you have a story to share about Autism? I’d love to hear it!

 

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1 Comment

  • Cindy deRosier

    Thank you so much for sharing this story in detail. I am positive you have helped others by being so honest and transparent. Ayden is blessed to have you as his mom.

    January 2, 2017 at 7:21 pm Reply
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