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Showing posts with label one big aspie family. Show all posts
Showing posts with label one big aspie family. Show all posts

Monday, July 27, 2015

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/



Thursday, June 11, 2015

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/


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