It takes a village -- Guest Post

They say it takes a village to raise a child. I think that in some ways, our "villages" are getting smaller as the years pass. Times are changing. There is an ominous feeling that we can't - or at least probably shouldn't - trust anyone with our kids except ourselves. We are solely responsible for bringing up our own kids. We almost have no choice but to become "helicopter parents," hovering over our children, fiercely protecting them and shielding them from the scary outside world.

However, when you are unexpectedly thrown into raising a child with special needs, you quickly realize that you have no choice but to find and embrace your village, to let go, and to trust others to help your family. Suddenly, there will be therapists entering your home and working with your child. There will be appointments with various doctors and specialists. There will be thorough evaluations, spanning hours, where you will watch your child's every move recorded and scrutinized. There will be advice. Oh goodness, so much well-meaning (but often frustrating) advice.

In the midst of all this confusion and uncertainty, this struggle between holding tightly and letting go, a few kind people will shine their lights into your world. These people are your villagers.

A villager will take the time to truly get to know your child, to gain her trust, get into her world, and to meet her where she is at that very moment. A villager will genuinely laugh at an awkwardly told knock-knock joke or a line of scripting from a TV show, even if it's the 8th time they've heard it that day, because they see the beauty in your child's attempts to communicate and connect. A villager will gently encourage growth, while still respecting your child's rights. A villager will watch, beaming with pride, just as you are, as your child achieves a milestone that you may have never thought was possible.

And....perhaps it wouldn't have even been possible, without the villagers' help.

Every single day, the villagers are showing up to their jobs, but not just working for a paycheck. They are changing lives - and not just the life of the child they are helping, but the parents, siblings, and other loved ones will be forever changed by their work. The villagers may not think often about the significance of what they are doing, but it is HUGE.

To our villagers: I thank you from the bottom of my heart. My children would not be where they are today without your kindness, your patience, your dedication, and your knowledge. There is a big world out there, and our villagers are paving the way for my child to find her place in it.

To the parents of special needs children: Seek out your villagers...you will know when you find them. Trust them. Learn from them. Gradually begin to let go....and watch your child travel from his village out into the world.

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"Amber Appleton Torres" is a stay at home mother of three, the eldest two of whom are diagnosed with Autism Spectrum Disorder. After their diagnoses, she realized she is on the spectrum as well, and got her own Asperger's diagnosis. She blogs about her family's journey athttps://onebigaspiefamily.wordpress.com/

What do you picture when you think of an autistic child? You're wrong. -- Guest post

What do you imagine when you picture a child with autism?

I can tell you what I imagined.

A child who is antisocial. A child who refuses to make eye contact. A child who is withdrawn, sullen, disconnected, unaffectionate, devoid of empathy.

Which was why my first reaction when that word was brought up in relation to my daughter was to scoff. Autism? Juliette? Really?!

But she’s….so social!

And she is. From the moment she was born, that girl has radiated sunshine. People used to comment everywhere we went that she was just so happy. She was always smiling. She loved people. Not only was her personality bright, but so was her mind. She was inquisitive. She was magnetic. Well, she was just plain brilliant, in so many ways.

She was NOTHING like that image I had in my head of an autistic child.

Most people, before they have a loved one with autism, have that same image of the withdrawn autistic child in their minds. Sadly, many health professionals do as well. That image is the biggest roadblock getting in the way of autistic children gaining the proper diagnosis and support. I can’t even tell you how many times I have heard parents recounting stories of how they went to their doctor, concerned about their child’s development, only to be waved away and told their child couldn’t possibly have autism because he/she “made eye contact” or appears to be “too social.” Some parents are satisfied with that response, and the child continues to struggle through life without help. Some parents continue to fight for YEARS before finally getting their child diagnosed and accessing supports and resources. We were very lucky that we found a wonderful psychologist who easily diagnosed Juliette, then Lennon, and then myself. All of us make eye contact and are quote-unquote “social,” by the way. Not one of us looks anything like that image you’ve got in your head.

Look. That image….it simply doesn’t exist in real life. That autistic kid who is completely in his own world, refusing to look anyone in the eyes under any circumstances…..doesn’t exist. At least, I’ve never met him. And I’ve met my fair share of autistic children, on both ends of the spectrum. Beautiful, bright, curious, magnetic, sensitive, funny, and gosh-darn adorable autistic kids who are literally the direct opposite of what I had imagined. They are completely “normal” looking children who are so full of life, only their brains are just wired a bit differently.

When my son, Lennon was a baby, I knew he was different right away. He was the most wide awake, alert newborn I had ever seen. He cried a lot, and he almost never slept. He seemed unable to shut his brain off. His eyes were always wide open, taking everything in. He hit all his developmental milestones early, especially speaking. He talked like a miniature adult, and he was so incredibly intelligent. He was a challenging child in many ways. He was very strong-willed. He knew what he wanted, and he did not respond well to being told “no.” When he set a goal, he would never give up. He had traits that we admire in adults, but are challenging to deal with in children.

Somewhere along the way, in my obsessive searching for answers as to why my child was so different, I came across the terms “high needs child” and “spirited child.” He is both of those things, but it would be six years before I would realize that he is also a child who has Asperger’s. When he was a toddler, I got the book “Raising Your Spirited Child,” and the author describes spirited children as being “MORE.” More intense, sensitive, perceptive, persistent, and energetic than a typical child. What a perfect description! While the book isn’t about autistic children directly, many children on the spectrum would definitely fall into the category of spirited as well. Lennon is, and always has been, more. He may be small in stature, but he is larger than life in personality.

Let’s go back to the image of the autistic child in your head. Picture him. Do you think of that child as being MORE? Or LESS?

I am telling you….forget about that image, because that child doesn’t exist.

Also, forget about the eye contact thing. It should be taken out of the equation, as far as I’m concerned. Yes, some people with autism struggle with direct eye contact (usually more often in unfamiliar situations with unfamiliar people. Most find eye contact easier at home, with their families). However, it is just one of MANY factors to be considered when diagnosing a child. A child can have flawless eye contact and still be very much autistic. And yet, somehow, we have chosen to latch onto this one small trait as THE definitive trait of autism. If a child makes brief eye contact at a doctor’s appointment, they are immediately dismissed from the spectrum? C’mon, people, we can do better than this. We are failing our children because we can’t get over that stereotypical image of the sullen, autistic child with the downcast eyes; the child who is somehow “less” than other children. We imagine that they are less social, less connected, less emotional, less intelligent, and less empathetic. We need to consider that we may have this all backward. These are kids who experience everything more intensely: sensory information, emotions, empathy. Their nervous systems are more fragile, and they are much more easily overwhelmed. Because they are MORE, they have more needs and require more support.

Most importantly, they are human beings. They are individuals. Generalizing all autistic people as antisocial is doing them a big disservice. There are introverted and extroverted autistic people. There is as much variation among autistic people as there is among neurotypical people. I see this firsthand with my children. Lennon and Juliette are both diagnosed with autism, yet they are so different from each other. They each have their own unique strengths and challenges. Lennon has impressive verbal skills, and he is very driven to achieve his goals, but he sometimes has trouble going with the flow. Juliette struggles more with communication, but she is more adaptable to change and more conventionally “social.” Again, neither of them is anything like what I imagined an autistic child would be like. That was the hardest thing for me to wrap my head around when Juliette was diagnosed. She just didn’t SEEM autistic to me.

But then I realized, I had been wrong all along about what autism looks like. I’ve learned to replace the incorrect image in my head with images like this, of my beautiful, creative, smart, kind, loving, and MORE children.

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"Amber Appleton Torres" is a stay at home mother of three, the eldest two of whom are diagnosed with Autism Spectrum Disorder. After their diagnoses, she realized she is on the spectrum as well, and got her own Asperger's diagnosis. She blogs about her family's journey athttps://onebigaspiefamily.wordpress.com/

You may say I'm a dreamer, but I'm not the only one -- Guest Post

I was a weird kid.

A shy kid. A sensitive kid.

A dreamer.

I knew instinctively, from early childhood on, that I was somehow different from nearly everyone around me. I was perplexed by people, and they, in turn, seemed somewhat perplexed by me.

I was fascinated by them, though. I watched them constantly, everywhere I went. I watched them walking around, making small talk with each other as they passed. I watched their gestures, their easy, spontaneous laughter. I studied their faces, picking apart their features, observing the way they smiled and the way their eyes danced while they talked to each other, sharing some small momentary connection with one another. They were beautiful creatures.

But I wasn’t one of them.

Why?

I didn’t know. But I was somehow certain of it.

I made a conscious decision to become one of them. Surely I could do that if I really tried. I was smart enough, and I knew it. I could figure this out with sheer willpower and brain power.

One of the first things I realized by my observations is that people didn’t like smart, though. At least not in girls. My brother was smart and he was practically worshipped. I was three years younger, painfully shy and awkward, and I wanted what he had: an easy air of confidence and the respect and admiration of everyone around him. He deserved it; he was awesome! I wanted it too, and was determined to get it.

Good grades came effortlessly to me. I loved standardized testing days, and looked forward to them all year. School was fairly boring – even with gifted/talented classes – but it gave me plenty of time to observe my peers and try my damnedest to emulate their behaviors. Somehow, though, I always fell short. I still replay my childhood social errors in my head, over and over, and berate myself for being “so stupid.” I had a hard time reconciling the fact that I could be simultaneously intelligent and stupid. And it seemed that people disapproved of me if I displayed either trait. I yearned to be average, yet I liked being smart, because it made me feel competent in a world that was confusing and overwhelming. However, the smarter I appeared, the less people liked me. Well, the teachers liked me….the children, not so much. I made a few good friends over the years who accepted me, guided me, and even came to appreciate my weirdness. The rest of the kids, by and large, treated me with a mixture of mild curiosity and contempt. They called me things like “bookworm,” “geek,” and “schoolie.” They teased me for being horrifically inept at all things phys ed-related, for being “gullible,” and for the way I used to bite my nails and the skin on my fingertips until they were raw and bloody.

I kept trying though. Oh, lord, did I try to fit in. I’d choose a girl I admired – a cool, confident girl – and try to become her. I’d emulate everything from her clothing to her mannerisms and speech. I made an effort to tone down my use of big words while speaking to peers. It was almost physically painful to do so. In class, I knew just about every answer to the teacher’s questions, but I made a “rule” for myself: I could only raise my hand for every 6th question. I spent my school days sitting at my desk, daydreaming, humming tunes to myself, watching kids and counting questions, sitting on my hand to avoid it automatically shooting into the air with each of the teacher’s queries.

I had the typical “pedantic speech” of a child with Asperger’s Syndrome, a true “little professor.” At age one, I could speak in full sentences, yet I did not walk until 17 months. My mother said she thought I could have walked earlier, but I just too stubborn and scared to try (yep, that sounds about right). Even as a baby, I was not comfortable with change or trying new things. I ate basically NOTHING, which was a major source of contention in our family throughout my childhood. I knew that my “picky” eating habits (which I now know is actually an eating disorder called Avoidant/Restrictive Food Intake Disorder) were causing my parents to tear their hair out. I was also keenly aware that my entire extended family was raising their collective eyebrows and wondering why my parents weren’t force-feeding me ham or the assortment of terrifying, mayonnaise-laden salads at holiday parties. I wanted to please my family so much, but it wasn’t enough to make me overcome my significant sensory issues and try new foods. Still, to this day, my diet is quite limited. I basically survive on assorted cheeses. My eating habits have only improved marginally since I was that little girl feeling disapproval every time I couldn’t eat what was served for dinner.

My childhood wasn’t all bad. In fact, in many ways, it was great. I may have been different, but I was definitely loved. My parents were unknowingly doing all the right things: consistency, schedules, and routines were big in my family. My social life may have been tumultuous, but I had stability and support at home. Dinner was at 5:00 pm sharp every single day. My mother was a stay-at-home mom, and kept a nice, tidy home. She and I were close. I think she was unsure how to handle my intense sensitivity and frequent emotional outbursts, but she understood me in a way that no one else could. I think she is somewhat of a “dreamer” herself.

Things completely fell apart when my parents got divorced, right at the time I was approaching adolescence, when the social stakes get higher. I needed support more than ever before, and there was none to be found. I’m not sure I would have made it through middle school without the help of a very supportive guidance counselor. I felt….simply lost. I didn’t know exactly who I was yet, but I knew without a doubt that I was a failure. A defective person. I had tried SO HARD to be like everyone else, and I had failed. Effort and intellect weren’t enough.

It all came to a head at age 14, when I made the decision I had been seriously considering for four years. I decided to kill myself.

I rummaged through our medicine cabinet and found several bottles of prescription pills. One said in bold capital letters: “DO NOT TAKE WITH ALCOHOL.” “Perfect,” I thought, as I raided the liquor cabinet, took out my mom’s signature bottle of store-brand Light Vodka, and mixed it with orange soda pop. I brought all my supplies up to my room, and shook the pills out into three neat piles on the white dresser that used to reside in my pepto-pink little girl bedroom, but was now in a run-down house owned by my mom’s second husband.

Before I started popping the pills in groups of threes and washing them down with swigs of my vodka drink, I set my alarm clock for 6:30 AM. I thought that if this suicide attempt didn’t work, I’d better be prepared to get up and go to school in the morning, just like any other weekday. As silly as that action sounds….it saved my life. The next morning, my brother heard my alarm blaring incessantly and found me in bed, unconscious. The doctors later told my mom that if I hadn’t been found when I was, I wouldn’t have made it. Thank goodness for my compulsion for routines!

I’ve come a long, long way since that incident. That was my darkest moment, and although there were many other dark times in my life after that, they paled in comparison to that singular act of complete desperation and despair at age 14. Still, I didn’t quite find myself until I was 32…

You see, I’d had a daughter, and she was like me. She was different too.

She was a weird kid.

A sensitive kid.

A dreamer.

Her eyes shone bright like sunbeams. She was different, yes, but in a magnificent, magical way. And I saw myself in her.

I found myself through her.

We dream together now.

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"Amber Appleton Torres" is a stay at home mother of three, the eldest two of whom are diagnosed with Autism Spectrum Disorder. After their diagnoses, she realized she is on the spectrum as well, and got her own Asperger's diagnosis. She blogs about her family's journey at https://onebigaspiefamily.wordpress.com/