The autism stories no one hears

This article that I was introduced to this week really moved me. It almost brought me to tears. It was written by Amy Mackin and published 7/23/13. As I was reading the article, I kept thinking, “These words are my words.” I hope you enjoy the article as much as I did.

Several inspiring people with autism and their families were profiled on Katie Couric‘s show this summer. It was wonderful to see part of a talk show dedicated to educating people on what it is like to live with autism.

But part of the autism spectrum wasn’t shown — the part almost never seen in mainstream media. Where are these people? I am a parent of a child with autism, and I am lucky. My son received the support he needed when he needed it and falls into the part of the spectrum known as “high-functioning.” He has developed coping mechanisms to deal with his anxiety and sensory challenges. He has learned to tolerate some flexibility when his routine is disrupted. Most important, he is now able to share his extraordinary intelligence, his endearing personality and his unique social conscience.

My son’s story is one of hope, not unlike the stories regularly broadcast on television, printed in magazines or making the rounds on YouTube.

Yet the autism spectrum is wide and diverse, and many who suffer from severe autism will never reach the level of functioning that my child has achieved. Although these people are also part of the story, we rarely hear their stories.

These people react so severely to sensory stimulation that they will seriously injure themselves as a way of relieving the stress. They are often nonverbal. Some require headphones streaming soothing music or familiar voices in their ears just to leave their regular environment for a short time.

Children and adults with autism this severe exhibit behaviors in public that mainstream society views as completely inappropriate. They mumble or yell involuntarily. They may reach out and grab a stranger’s hand or stroke someone’s hair.

I am not referring to people with nonverbal autism who have average or above-average IQs — those who possess the cognitive ability to communicate but whose bodies betray them. Computer applications and other technology can help these people communicate and do many of the things anybody else does, if a little differently.

Instead, those whose stories I’m missing do not have the intellectual ability for communication, whose IQs fall into the severely or profoundly impaired range. These are people who will never read or write or type. They will never graduate from high school; they will likely never marry or hold a job.

When I advocate autism awareness, it’s this hidden spot on the spectrum that I champion.

No one disputes the incredible importance of early intervention — the program of beneficial therapies started well before age 5 — and continued social-skills training and support within the educational system. Certainly much more work can be done for all people who struggle with autism. But when I fantasize about finding a cause and a cure, when I dream about a wonder drug that could reverse the effects of autistic disorders, I don’t think about my son or others like him. I think about those at the bottom of the spectrum — their daily struggle and that of their families.

The world is slowly becoming more aware and more tolerant of those who live with autism, but to understand the breadth and diversity of the spectrum, and the impact of living with these disorders, we must see the entire range, not just the hopeful, inspirational stories.

We must see the pain of a parent who watches her child smash his head against a concrete wall, who throws himself on the floor of a store because he simply cannot stand the fluorescent lights another second; the person who starts violently screaming because the crowd getting off the subway terrifies him. We must feel the anguish of compassionate caregivers when everyone around is staring at their loved one with horror and judgment.

We must comprehend the grief of parents who are forced to acknowledge that their children may never be able to care for themselves, and we should consider all the future decisions and worry that realization encompasses.

Many personal stories about autism make us smile and renew our faith in humanity. But some stories will make us cry. They should, because autism can also be terrifying and hopeless. This side of the spectrum still lurks mostly in the shadows. But to fully understand why we search so exhaustively for answers and doggedly seek a cure, these stories must be seen and heard, too.

Amy Mackin is a writer in the Boston area. From the Washington Post.

Much Love -Cole

I am thrilled to learn that last night J Cole issued an apology regarding the lyrics to the song “Jodeci Freestyle”. You can read the whole thing here http://www.dreamvillain.net/autismspeaks/; but, it reads in part “This letter is sincere. This apology IS necessary. … when I first saw a comment from someone outraged about the lyric, I realized right away that what I said was wrong. I was instantly embarrassed that I would be ignorant enough say something so hurtful.”

He goes on to say that he wants to educate himself on Autism and “People with this disorder and their loved ones have to go through so much already, the last thing they need is to hear something as ignorant as what I said.” That is the truest statement I have probably heard all year. They are the ones who try to navigate the endless sea of social mannerisms and cues to varying degrees of success. We are the ones who endure the looks and whispered comments when our child is doing any manner of tics or meltdowns with no apparent reason to those who are watching. Not to mention the doctor appointments, the nights at home struggling to get them to eat or cleaned or a decent night’s sleep.

I guess all of this is to say thank you, J Cole, for your apology. I’d like to think that you will be changing the lyrics to the song and never perform the original version. I’ll also be interested to see what you learn about Autism on your journey and hope you are able to be the example you want to be.

The Memphis Farmers’ Market and Me

First of all, I’d like to thank the 160+ that took the time to read and the many shares of “Where’s The Apology” since I published it last Saturday. I’m humbled that my rant connected with so many of you. If you’ve not had the chance to look at it, I would appreciate you reading it, sharing it and letting Drake and J Cole know that using the word autistic in such a derogatory way is akin to hate speech and not acceptable.

All that to say, the post I originally wanted to post last Saturday didn’t quite get the attention – I don’t think – it deserved. It’s about the Memphis Farmers Market and that facility truly merits your time and attention, even if my post doesn’t do it justice.

mfm logoI have found a new addiction. It’s a place I’ve been to twice and plan to go to no less than once a month – at least until they close in October. It’s the Memphis Farmers Market located at Central Station, S. Front Street at GE Patterson in the Historic South Main District, Downtown Memphis.

Farmers mkt 6The Memphis Farmers Market is a wonderful place to find loads of really great, locally grown, food and flowers and locally made artisan products. They have just about everything from tomatoes and green beans, to metal art, goat milk soaps and mushroom teas. On my most recent excursion, I came home with some wonderful cherry tomatoes, seriously good granola, goat cheese, pesto and even more. I even found multiple species of fig trees, one of which I may come home with my next time there.

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The atmosphere is wonderful! Everything is so laid back, even though it’s crowded. People are shopping the stalls, or eating at one of the food trucks or even just sitting on one of the benches listening to live music and just people watching. All the vendors I have talked to have been very friendly and informative, especially on items they sell I would have no idea how to use.

But that it part of the point for the Memphis Farmers Market. Their mission is to:

  • Improve public health nutrition options by providing a vehicle to educate the community on nutrition and good health
  • Provide access to local food choices
  • Assist area farmers, producers, and artisans with sustainable business opportunities
  • Generate a sense of local pride while furthering the economic development of our community
  • Serve as a community-gathering place

And part of that is not only providing space for vendors to sell their wares; but, they also have cooking demonstrations on how to use the food sold there, Farm to Fork Dinner Tours, and Harvesting Good Health events.

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Like I said I went there a couple of weeks ago and took my mom and Danger Boy. He had been with us before mom had not. But it was nice to let them both just explore and discover something new. Mom was super and bought me a bar of goat’s milk soap from Hearts of Eden and some chevre` from Bonnie Blue Farms. I got some vegan pesto from Harvest Fresh Farms and those together on some sourdough I had at home made for a wonderful lunch. Danger Boy couldn’t keep his hands out of the cherry tomatoes I bought from Mai’s Homegrown Produce. I still have some Bok Choy I need to use; but, I have some tofu marinating for that. (Scratch that, I did a stir fry with that this week, it was my very own Genghis Grill.)

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Today,  L’Ecole Culinaire is having a cooking demonstration, Dogs 2nd Chance is going to be there with dogs available for adoption near the pet sitting area and three different local artists will be playing. And who knows, if you go by the right booth, you might meet a local news celebrity serving coffee. He served me mine and was super nice! 

That was last week, TODAY master gardeners will be answering question from 7:30-11:30. I may have to ask them about getting some reaised beds started in my back yard. WellWorx is sponsoring a “Cardio Boom” class led by Eric Cook, Street Dog Foundation is holding the pet adoptions, and there will be music from Rob Halford (not this one), Shelley Brown and Yancy and the Good’uns. But if you still stop by the right booth, you might meet a very nice local news celebrity!

Farmers mkt 5I really enjoy farmers’ markets and plan to find more. I’ve been to the one in Hernando, MS and where I live has one in the court house square Friday afternoons. More on them soon as I re-familiarize myself with them.

What’s the best thing you’ve picked up at a farmers’ market? I’d like to know so I can find new things to try.

Where is the apology?

I’m going to apologize in advance because this is going to be as much of a rant as it is a blog post. But I saw something Friday that has really gotten under my skin for multiple reasons. And I have to get it off my chest.

I follow a few fellow parents who live with a child with autism of varying degrees. Friday, one of them posted something that I don’t understand why it’s not been exposed before. It appears that rappers Drake and J Cole wrote a lyric in the song “Jodeci Freestyle” that not only mentions the N word in just about every other line, but it also demeans the Autistic community by equating autism with the word ‘retarded’. I tried to read the lyrics, but had to stop after the first verse because I couldn’t deal with all the profanity and ended up using the search feature on my browser to find the line for myself and be able to read it in context. I wanted to be sure I was on point and not take it out of context. I wasn’t:

I’m undoubtedly the hottest and that’s just me bein’ modest
Go check the numbers dummy, that’s just me gettin’ started
I’m artistic, you n—– is autistic, retarded

And that was as long a stretch as I could copy without including another profanity.

This is unacceptable, prejudice speech.

These people (Drake and J Cole) can not know any autistic people. If they did they would know that most autistic people are just as mentally capable as they, if not more so if their grammar and spelling are any indication. They just need the right avenue to show it. My Ninja Cat is an ace at academics and thinks so creatively compared to the rest of us, not just to solve problems but artistically, it’s amazing. He creates the most intricate drawings and can explain what every cog is for and why each beam is in its place. He constructs huge structures in Minecraft and with the switch of a lever can make objects in that world do things it would take me twice as long to construct. Anyone that has a child with autism will tell you similar stories.

This is unacceptable, intolerant speech.

It’s using the Autistic community as the punch line of a very bad joke, so to speak, by putting down those around him. It’s using autistic people as an antithesis of his perceived greatness. Has he ever met Dr. Temple Grandin, who has done more for not just the Autistic community but people’s lives in general through her research? She has done more that touches lives directly through her veterinary research than Drake and J Cole have through their so-called art.

So, where is the outrage over this? Where is the call for an apology, the dropping of endorsements, the derision, the drop in sales that hits him where it would hurt the most – his wallet? I’ve not heard one word about it until my comrade on arms posted it Friday night on Twitter. I’m here to call for the apology! I’m here to call for the dropping of the endorsements, I’m here to deride him for his choice of words, his bigotry, his intolerance. The more we join together, not just as an autism community but as a group of people who do not tolerate bigotry and prejudices, we will be heard. Contact Sprite. Contact Kodak, Let them know their brands shouldn’t be associated with bigotry. Please help me spread this and stop the bigotry!

p.s. (7/17/13) There is a petition on Change.org calling for this to happen. PLEASE go to http://goo.gl/35aBr to sign the petition and make your voice known.

Is Enough Actually Not Enough

One of the things I like best about the church I go to is that even though I haven’t seen some of my ‘church friends’ in a long time, I can pick right up talking with them like they never left. I had cause to take advantage of that privilege recently and it made me think.

I see a woman I’ve not seen in probably almost a year. I knew she was in the beginning stages of what could be a nasty divorce and I had been wondering how she was doing for some months now. It was great to see her and be able to catch up and offer what support to her I could. But it was when the conversation turned to what she was doing to prepare for single motherhood of her three children that worried me.special moments

Here’s what got me thinking. She has finished a medical trade school and is already working a weekday job that has become more hours, by her own admission, than she could have hoped. But then she mentioned taking a job at a hospital for the weekends. She said it was to provide for her family and be able to stand on her own two feet once the divorce was final.

Mother and son 2

The thought hit me. When is she going to see the children she is striving so hard to provide for? Where is the line where working to give her children what they need/want takes the place of being there for them, staying involved in their lives? Time after time it’s been proven that time, not things, is what kids ultimately crave from their parents.

I know I’m lucky that I can stay home with my kids and  pray I am never alone in caring for my children. I also know that mothers that work are also lucky in other ways.

But when is enough actually not enough?

(Photos Courtesy of http://www.sxc.hu/)

Acceptance, the Greatest Gift

After three years of making our way in this world with Ninja Cat’s high-functioning autism, we have finally run into my first real taste of – I wouldn’t say discrimination – but someone not willing to try and understand. It absolutely broke my heart for this to have happened to him; but, I guess we should feel lucky for to have taken so long to have happened.

Jigsaw

It was a local art camp. Only four days for four hours each day. Ninja Cat loves art and some formal training, however brief, would be a great help to him. That and it would be a great chance to earn his Artist activity badge for Webelos. When I called to register him and asked about him coming even though he was a high functioning autistic. They said it would be no problem and to bring him. So, I’m left thinking that they will be prepared for him and it would be a great four days of learning about something he’s pretty passionate. So confident, in fact, that I took the first day to go berry picking 45 min away from my house with my best friend – even letting her drive. That confidence soon shattered.

Not one hour into the first day the camp calls saying that Ninja Cat is having trouble and wanting to come home. I told the camp director a couple of quick things to do to help him calm down (give him a quick break and a copy of the schedule) and get back to participating. Apparently, that didn’t do any good, because they call a bit later where I talk to him personally and get him to stay. Again, I told the camp director to get him a copy of the schedule (she hadn’t done that yet), give him another few minutes to get his bearings, and would call to check on him after I finished. Later, he was somewhat better, not great, and he said he could last until I came to get him at the end of the day.

At the end of day, the camp director and I have a talk. Only then do I find out that she was blindsided by his autism (the person I registered through didn’t pass along his difficulties??) and that she admits she doesn’t have the skill set to meet his needs and there was no one there with the knowledge or training to help him. She all but threw her hands up right then, not even willing to hear the tips and tricks I have to help him acclimate. Optimistically, we came to the agreement that it was first day jitters and that he would be better tomorrow. But if not, he would come home early from camp. She even sent me an email over it. I wouldn’t say it was tersely worded; but, it was plain the director didn’t plan on even trying to make any accommodations for him, despite his difficulties. But again, me and my optimistic self knew that tomorrow was going to be better.

It wasn’t. The camp calls before the start time saying that he’s going to have to come home. He had carpooled with his best friend’s mom, who was still there and brought him home. When the three of us talked about it, we came to the conclusion he had just gotten impatient for the day to start and wanted to go ahead and start drawing something. But, the plan was for them to go outside first so the art supplies hadn’t been set out yet. It sounded like they didn’t even really try to get him to slow down and participate with the rest of the group.

Every other time Ninja Cat has participated in anything, everyone there has gone above and beyond to make him feel accepted and welcome. This time it doesn’t feel like it they tried. I admit I’m hurt and upset. I’m trying to see things through their eyes. It’s hard. I wish they could have done more. I wish I could have done more.

Brides and Grooms

I had the privilege to attend the wedding of one of my very good friends recently. This wedding is her second and she has finally, I believe, found her other half. He is a really great guy, from everything I have seen; and, they certainly deserve every happiness God can afford them.

So I’m at the wedding, sitting close to the front. The wedding starts and the groomsmen come in to wait on my friend, the bride. Then I remember my pastor saying that in every wedding he does, he looks at the groom while everyone else is looking at the bride as she enters the room. I figure why not try it myself. I’ve seen what my friend looks like. I watched some of her pictures be taken after I helped set up the reception hall.

When everyone stands to see my friend enter, I turn and look at her husband to be. I can tell the exact moment he gets his first look at her. His face turns bright pink; he bites his lip and closes his eyes. For a moment, he looks like he is either going to throw up or pass out. But when he recovers! He recovers and his face is filled with a love and pride I haven’t seen on any face other than my husband’s in a very long time.

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Then, it hits me. All through the Bible, God and Jesus are referred to as the Bridegroom of the nation of Israel and later all believers. Notable examples are Isaiah 62:5 and John 3:29. And all the times I have studied those verses I have concentrated on myself being the bride of Christ and preparing myself for Him. I mean I’m a woman; and, I was a bride about … years ago. (wink.) What is it like to be on the other side of that? What was it like for my now husband to wait for me? Does Jesus wait with bated breath, so to speak, for the time to come where he gathers those that believe in him to Heaven? Is he going to have a similar look on his face when that time comes and the living and the dead in him are caught up in the air?

I think so. I believe he is longing for us just as much, if not more so, than we are longing for him. He knows what is prepared for us in Heaven. He knows what it is going to be like when those who believe in him are all together in praise and worship. We don’t have that knowledge. We can only guess. And we’ve already been told that God does more ‘than we can ask or imagine’ (Ephesians 3:20).

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So, as I watch my friend approach her groom, relief builds on his face that they are actually together and will be until death. I take a moment to be thankful for my earthly groom of 18 years and for my heavenly groom still waiting for his ‘bride’ to be complete and ready for a time that is beyond death.