I Love My Aspie!

MY LITTLE SUPERMAN

September 2009 082

“Not everything that steps out of line, and thus ‘abnormal’, must necessarily be ‘inferior’.”
– Hans Apserger

“Mom?”
“Yes?”
“Mom, I need to tell you something, please pay attention,” says my three year old.
“Ok, Seanie, what is it?”
“There is a sign up there, on the road Mom.”
“Oh?”
“Yes, it says S – T – O – P, which spells stop in white letters on a red octagon.”
Stunned silence.
“Mom?”
“Y- yes? Wait… How do you know what an octagon is?”
“It has eight sides; that is an octagon.”
Silence as I count the sides in my head.
“Mom? That sign means you should probably stop the car now.”

Meet my son Sean who was displaying his intelligent and precocious nature at the age of three. Several years later, he now looks like any other seven, going on eight, year old and like most boys his age he loves trains, cars, and airplanes. However, behind this typical façade hides a very unique mind. He has an Autism Spectrum disorder called Asperger’s Syndrome. From the time that Sean was born we knew that there was something different about him. He spent the first six months of life bawling his head off constantly. When I say constantly, I mean ALL of the time. There were nights when I literally walked the halls of my home with an inconsolable baby from 10 pm until 6 am. It wasn’t until his pediatrician finally said, “Put him in his swing right next to your bed and see if that helps,” that we finally found relief. It worked, praise be! I had that swing down to a science. It was battery operated and if it stopped we were at risk of a crying frenzy to wake the dead that would last for hours. So I had trained myself in my sleep to hear the rhythm of the swing. As the batteries would die I could keep it going with one hand and deftly change the batteries with the other in under a minute. With my eyes closed! Sean had his own little midnight pit crew.

As he progressed, he never really had much to say. He didn’t babble much as a baby and once we were past the worst of the crying stage he was pretty mild mannered. While other children his age were beginning to talk, Sean was silent. The Dr wasn’t too concerned because in all other areas he seemed to be progressing on schedule, he even seemed to be incredibly intelligent for his age. Before he could sit up on his own he was able to lie on his stomach and match shapes to the appropriate openings on his toys. He did have issues with food, certain textures would bother him, but what child doesn’t have at least some food issues. Oftentimes he would spend his lunch quietly stacking his crackers as high as he could go instead of eating them. We used to joke that he’d be an engineer, albeit a skinny engineer. Looking back now it seems silly that we missed the signs, but what parent wants to face the fact that their child may not be “normal”. He was also our first which meant that we were relatively ignorant to some of the milestones that he might be missing. Once we had our second son, Alex, these missed childhood landmarks became glaringly obvious.

Sean finally spoke to us for the first time when he was around twenty months. I’ll never forget it. We were at Yellowstone admiring one of the geysers and I turned to my husband and said, “Cool!” Suddenly we heard this little voice from the stroller say, “Cool!” He repeated it several times throughout the day as we viewed the various sites. It was so cute; he just kept saying it over and over again. It was weeks before he progressed to anything else, but after the silence that first word was golden.

Have you ever wondered what it might be like for someone on the Autism Spectrum? It is hard to describe because each and every child on the spectrum is very different in their skill sets and needs. What I can share is what it has been like for Sean. Imagine a social setting where you feel completely out of place, lost or confused, or just feel as if you had something important to say but no one would listen? This is what Sean experiences everyday. Every waking minute of every hour of every day of his life is a struggle against social norms. Often I will watch Sean play at a playground and while he plays with the other kids; he is not really playing “with” them. That is to say he is playing in proximity to them, but not interacting with them. Other children will approach him, and as typical with children, will speak very animatedly using their hands to express themselves. These situations are very difficult for Sean. He will typically take a step back, then another and finally shut his eyes to the overwhelming panic he is experiencing. Sean is doing his best to cope with, what seems to him, a very scary situation. Usually the other child gives up and leaves looking bewildered. As the years have progressed and we have worked with him I’ve seen him improve in many ways in his interactions with other kids. We still have our moments when he is overwhelmed and panicked. The hardest part, for me as a parent, is that I cannot predict the outcome. Sometimes he does great, finds a way to work around his panic and fits right in. At other times, without warning, something will scare him and he can’t quite recover. Often I won’t know exactly what set off the alarm making it difficult to help him regain his footing.

Sometimes children, and even adults, are just plain mean about it. Sean’s peers often tease him mercilessly because he talks funny or uses numbers to tell a story. It is difficult to watch the light in Sean’s eyes fade as it dawns on him that these kids don’t want to be his friend. Just because his Asperger’s makes it uncomfortable for him to be in social settings doesn’t mean that he is immune to the need for a sense of belonging. He too wants to make friends and be accepted, he just doesn’t have the innate skills that allow him to do that as easily as his peers.

I never know what to expect when we leave the house. Shortly before Sean was diagnosed, we went to get his pictures taken and something about the studio frightened him. Sean has a sensory disorder which means that he is overly sensitive to sights, sounds, tastes, textures, etc… For example, when we hear a door closing our brains are able to interpret that sound and put it in the background. When Sean hears a door closing it is as if someone is slamming that door right in his face. Imagine what happens when Sean hears a train whistle, oh boy do we have one pale shaking little boy! I’m still not sure what upset him at the studio but it was like trying to talk to a brick wall; he’d curled himself into a tight ball and was sobbing while talking in numbers. I felt sorry for him and a little afraid of his reaction. Battling my own feelings of inadequacy, I tried everything I could think of.
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“Sean, I have M&M’s, they’re your favorite. Please open your eyes?”
“12, 15, 22, 23, nothing, nothing, nothing…”
“Sean, please, what happened?”
“Nothing, nothing…22, 100, 99, 98, 97, 23, 13…”
“Seanie…, Can you tell me what’s wrong?”
“22, 23, 15, 100, 99, 98, 97, I’m just counting, I’m just counting…”

The picture above is one that the photographer took as I told her to just start and see what would happen. It is heart breaking to look at my little boy folded in on himself refusing to interact with us. At some point I happened to look over to the corner of the room and saw a set of very large, white, plastic numbers. I said, “Look Sean, what number is this?” To my relief he immediately stopped crying and was receptive to my instructions. As long as I held up a new number for him between every pose for the camera he was cooperative and it was as if nothing had happened. There is something about numbers that Sean connects with. If you ask him about it, he will tell you that certain numbers make him feel happy, while others make him mad or scared. Sean’s doctor told us that autistic children often choose to obsess over numbers because they are consistent. Four is always four, no matter what way you look at it. I think this is why Sean chooses to express emotions using numbers; he is trying to make sense of what he perceives as a very chaotic and frightening world.

At our house we find comfort in consistency. A typical morning for us is as follows. I wake him up with these exact words, “Sean, it’s time to get up, did you have a good sleep?” He follows with, “Yep. What am I wearing today?” We then choose an outfit and get dressed after which beds are made, prayers said, and teeth brushed in that order. If I deviate from this routine in the slightest he immediately breaks down. This is one of many routines and rituals that must be observed throughout the day for Sean to be able to function. All things must be done in their proper order or chaos ensues. This means that I DON’T run late, anywhere. I have learned through hard experience that it is just better to be on time, or even early, so that the rituals and routines might be properly observed. This is so much easier than attempting to calm him down that it is worth the extra effort.

Having Asperger’s isn’t all bad. In fact, Sean has many gifts which make him unique. When he was two and half he could count to one hundred forward and backward as well as recognize and write some of those numbers at random. When he was about two years old, we were at the store and he was saying “Mom, 12.” And I’d mumble “uh huh.” Then a few minutes later, “Mom, 15.” “Yep, sure honey.” This went on for several minutes with numbers ranging from 1 to 30 when I finally noticed that he was looking up at the ceiling. Following his gaze I saw that the air duct system was numbered at major joints and he was reading the numbers as we passed underneath.

At four years old Sean started reading. It almost seemed spontaneous! One night while observing the bedtime ritual, he asked if he could read to me instead so I agreed and thought, “This ought to be interesting.” To my surprise he began to read word for word. I wondered if he was memorizing the books we had read a million times over so I grabbed another from the shelf that he wasn’t familiar with. I opened it to a random page and asked him to read a few words. Not only could he read them, but if he happened upon a larger word that he wasn’t familiar with, he would take the time to sound it out. Sean has an extremely high IQ which I’m sure he has been blessed with to help him overcome some of his challenges.

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Henry David Thoreau once said, “If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away.” We have come to recognize Sean’s Asperger’s as a gift. I learned long ago that allowing him to march to the beat of his own drum was best. In fact, sometimes I try to hear the drummer he hears and march right along with him. It certainly isn’t without its challenges, but everyday is an adventure in exploring his talented mind. I call him my little Superman because like any super hero he has gifts and talents that set him apart as well as his own personal “kryptonite” or weaknesses that hold him back. He teaches me to celebrate the victories that we have everyday great or small. He reminds me to enjoy the simple things in life, like blowing bubbles and smelling flowers. He demonstrates the fact that although life can be challenging it can also be full of joy. Sadly, there will always be those who refuse to see past his eccentricities, but I hope that as people become more aware of Autism and all that it is, they will be more open and accepting. It is so easy to dismiss individuals like Sean. After all, they look pretty “normal” to you and me. It is only after we attempt to converse that they might seem a little “off” or strange to us. Next time you speak with someone that can’t look you in the eye, or has difficulty articulating their thoughts; don’t be too quick to judge. You never know what challenges they are facing. My little Superman, my man of steel, proves that different isn’t necessarily good or bad; it is just different and at our house different is awesome!

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9 thoughts on “I Love My Aspie!

  1. Christina,
    This challenge I understand. My oldest son Reid is on the autism spectrum. Some call it aspergers, some say its “non-specific”. I always say, “I don’t care what you call it, just help me help him.” He is sixteen, and is oh so aware that he is different, and that people pick on him for it. His challenges are different. His sensory issues are very minor. So he doesn’t have that challenge, but he has severe adhd, so he really struggles with focusing on a task. His teachers always ask me every year, “is there anything we need to know about your child?” I always tell them, “he reflects the strongest emotion of the room. So if everyone is behaving and the room is quiet, so will he be. But if someone is disrupting, he’ll react to that and it will probably stand out more than the original source of disruption.” I also tell them that he thrives on hard, physical work. They can reward him by having him help them with any physical tasks they may have, like moving desks, carrying books, etc. This is his greatest blessing. He has a real talent and enjoyment for hard work. I remember when he was about 8 or 9 he went with my husband to help a family move and he came home and said, “They had doughnuts at that party!” I couldn’t believe he thought helping someone move was a party! To this day if he is bored, he’ll pick something around the house and clean it out and organize it. I’ve come to learn that if I’m not really feeling like it, I better not tell him that I’m going to clean out the pantry, or a closet or something, because he will keep asking me whenHe we are going to do it. The garage is his personal favorite and he has taken ownership of that. My garage is always very organized. I could totally relate to the young crying baby, that almost lived in his swing (because he was always happy there). He always liked a blanket over his head in his swing to sleep. To this day he still sleeps with a blanket over his head. I also understand routine. Vacation is always a challenge for him. He enjoys vacation, but struggles with it being different. I could relate so much more. But I will say, as he gets older the social gap between him and his peers is widening, but he is still making progressing. He desires more than anything to serve a mission and I pray every night that somehow he will be able to in some capacity. Thanks for your blog. I can totally relate to your sense of humor and clumsiness, because they are just like mine.
    Love,
    Your cousin, Rachel

    • Thank you for sharing this Rachel! I had no idea. I love that Reid enjoys hard work and being organized. It is so interesting to me what their brains seem to be able to do in order to cope with their differences. I too hope that Sean will be capable of serving a mission one day and all else that comes with a functioning life. I am sure that Reid will make a fantastic missionary with his willingness and love of hard work. My husband has ADD so I understand a little bit about the ADHD. We are missing the hyperactivity part but Greg does really well as an adult now that we know about the ADD and have faced down some of those challenges. I’m glad you are enjoying the blog, it has been freeing in so many ways to share some of these experiences. Thanks for reading and for your love and support!
      Love you,
      Christina

  2. Christina – Thanks for sharing about your darling boy. My son has shown symptoms of Asperger’s since he was little – loves and needs routine, didn’t “play well” with the other kids, a photographic memory, extremely bright (even nerdy – hence the forensic science degree) and the obvious “quirkiness” that goes along with it all. I never did get a specific diagnosis – mostly because I didn’t want to single him out any more than he already was. However, all the things that make him unique also make him a great student and an even greater missionary! It’s our job as Moms to love them unconditionally and help them any way we can. You, my friend, are the queen when it comes to compassion and patience. Keep sharing your stories – I LOVE to read them.

    Your flute buddy, Kathy

    • Kathy, you are so sweet! Thanks for reading my blog. I had no idea you had similar struggles with your son. It does my heart good to think of him on his mission, that is such a triumph and gives me great hope for Sean as well. Thank you for sharing!

  3. I will add one more quiet voice to the list, me too. Spectrum disorder wasn’t the journey that I thought I was going to take the day they placed my son in my arms almost 17 years ago. He is one of the smartest people I have ever meet. Rigid as a freaking oak, that kid, but smart too. Some days I worry about tomorrow and some days I am able to let go of a future that isn’t yet written. The quote by Thoreau was one of my favorite for years, long before he was diagnosed it seemed to be the prologue to our story, like everything I needed to know to understand the future was held in that short little text. I wacthed him in wonder as he discovered the world in his own way, as he danced to music that I couldn’t hear. When Dylan was diagnosed I had never heard the word Aspergers Syndrome, I felt so alone in my grief, like they had taken all of the good in him and somehow turned it into something bad. I had so much left to learn about my own self worth, and about letting go of the worlds veiw of success. Those were some hard years for me as I struggled to protect him from storms while giving his wings room to grow.

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