Autism, and the plague of ignorance

http://youtu.be/ogOoOH-FSKc

Watch that video. Watch it twice. Know that Nathan has every right to take his service dog into that restaurant... He even called ahead to be sure... But was refused. 

Then read the comments. 

Vulgar, insensitive rants spat out by ignorant people wanting only to stir up trouble. Foul mouthed and hurtful. 

On one hand, you want to just ignore them and hope the rest of the world sees them for the idiots they are. On the other, I was tempted to lose my cool and fire back at them...

But what would that get me? Nowhere. It would drag me down to their level. 

I'm better than that. 

It's still #autism awareness month. And, sadly, I'm aware that there are people who just don't care. 

Militant autism bloggers and Tumblr

Just recently I started a page on Tumblr. www.nsvar.tumblr.com Between using Buffer and Friends+Me all of my posts reach all of my social networks. Sometimes I find interesting web articles, though I may not agree with the content, and I post them to encourage discussion. I try to stay away from overtly political or religious posts.

Sometimes I post motivational pictures. Granted, I didn't personally make them, but they are motivational and worthwhile just the same. 

It turns out that Tumblr is full of people who look to have a problem with everything you post. Not sure if you people are autistic themselves or if they are just Ornery people who think that their worldview is the only valid worldview. 

One motivational picture was called "ableist / ableism" by one Blogger. Another was just out right called "shit". Some responses are multi-paragraph tirades while others are just grumblings. 

Very sorry these people are so angry at the world. I happen to have a son with autism so I am not ignorant to the situation. I could choose to be angry at the world, what would that solve? 

Nothing. 

Negativity breeds negativity. 

I know many parents with low functioning children who have every right to be angry with the world. But they aren't... They work hard to do the absolute best for their child, they keep a smile on their face because their productivity and positivity is contagious. They are active in the special needs community and they are wonderful all around parents.

So here's my message to all the complainers on Tumblr:

Put a sock in it. If you don't have anything nice to say, just don't say anything at all.

And have a great day!

We're Back!!!

Yeah... I know. I kinda dropped off the face of the earth for a bit. Alot has happened in the past few months.

But you dont need to be burdened with all that nonsense! Just know that www.nsvar.org has to be built again from scratch. I will be placing all future announcements, flyers and graphics here on the blog and they will be automatically shunted to the website and all the social media.

Please, please let me know if theres anything you'd like to see added to the new website!

"Juice, please" by Sharon Hanks

Here is an amazing blog contribution from our friend Sharon Hanks! We at NSVAR know her personally and are proud to have her share with us!

Juice, Please
by Sharon M. Hanks

            “What is the one thing that Mitchell could say that would help you the most?”  With one sentence, the speech therapist threw down the gauntlet. She unwittingly dropped a bomb into the middle of my living room and my world. My son was twenty-nine months old and completely non-verbal. Hearing him say anything would have been like a rainbow spontaneously appearing in the palm of my hand – miraculous, beautiful, and awe inspiring.

“I just want to know what he wants,” I replied, somewhat meekly. “If he could tell me he wants juice, or food, or a toy, it would be so much easier for both of us.”  Using sign language, she began to teach me and my son how to say, “I want ---, please.”

Sign language boot camp began.

Grunts and whining were no longer effective forms of communication for my son. If he wanted something, I patiently signed, “I want blahblahblah, please.” Only after I completed the signs and said the corresponding words did I offer him the object he wanted.

“What do you want, Mitchell?” He stared at me, blankly. “You need to ask me for it. You say, ‘I want to eat, please.’  Can you say that for me?”

I signed the words, “I want, please.” All day. Every day.  Each time, I watched his little hands for even the slightest twitch that could be considered a sign. I was continuously disappointed. Would this work? Would he ever respond? Even without an official diagnosis, I knew his own brain was holding him hostage, wrapped in the ropes of Autism. Sign language was a key that could open the door to language for him, so I worked with him continuously.  Unfortunately, delayed speech was only one of many symptoms we noticed.

There is a place of private seclusion any parent faces when they finally grasp the fact that their child’s special needs are not temporary.  In that quiet, dark place, you grapple with blame and frustration, with feelings of impotence and shame. Chagrin, anger, stress – all these emotions come into your life on a daily basis. But the light in all this darkness is an intense love so ferocious and fierce that it consumes you and overrides every negative thought and feeling that has crept into your consciousness.  It is this blindingly bright love that propels you forward, and enables you to fight for this precious child who is so often misunderstood.

Mitchell is no longer the child locked away without language, and his progress has been spectacular. Within a week of using sign language, the doors of language opened for him. He said, “I want juice, please.”  My heart exploded with joy and relief.  In that moment, I knew there was hope.  Although the complexity of his issues has grown as he has matured and aged, he is a bright, happy, humorous, nine year-old boy who is starting to understand his disability. We have moved far past that simple sentence in sign language. The dark days linger around the edges of our lives from time to time but they are met with hope and determination.

NSV-SOS is back in the saddle!!!!

A call to arms from NSV-SOS Co-Chairman Cassie Purtlebaugh!!!
Join us and help us fight for the children of the Northern Shenandoah Valley!!!

Greetings friends and committee members of the NSV-SOS!

 

As summer has come to an end, and we are all back from our vacations and settling into the school year, it is time to come back together for the sake of our children. As you know, no progress has been made since our last meeting in securing a satellite office in our location for the Child Development Clinic. Additionally, from our understanding, the numbers of children being served in the JMU clinic continue to be less than those who were served in this region, and it already feels like our children are slipping through the cracks.

 

As a private provider, I have recently, especially, felt the sting associated with losing the CDC in our area. We have many, many children who are enrolled in our Therapeutic Day Treatment programs who are in desperate need of full-scale psychological evaluations. With other local providers also not offering this service funded through Medicaid, we are having to send our kids further and further outside of our own community for services. This is in direct contrast to what we, as a systems of care, want for our children. We need local services that are affordable for those most in need, and, as a committee, I feel like it is our obligation to really start to figure out some answers.

 

Will we get the collaboration we need from the state level Department of Health in order to offer these services in a manner that is accessible for our children and families? Maybe not….but, we are a strong group of professionals with lots of ideas who can certainly problem-solve and work with agencies here in our own community to offer this type of care. I’m not giving up the fight for the CDC to be local….but, in the meantime, while contracts are or are not being negotiated on the state level, we have to do something to prevent our kids from continuously falling through the cracks, and to assist their parents and guardians in securing the help they need to move forward with assessment, recommendations, and treatment in our own community.

 

I propose a meeting to come back together on these topics on October 21, 2013, 6-8pm, hosted at Lutheran Family Services of Virginia. Will you help us be a part of the solution? Please let me know if you are able to attend. Thanks so much, and we look forward to seeing you again!

 

Cassie Phipps Purtlebaugh, M.A.
Director of Community Based Services

Lutheran Family Services of Virginia
225 East Pall Mall Street
Winchester, Virginia 22601

Phone: 540-450-2782
Fax: 540-450-2783
www.lfsva.org

Autism is not a four letter word

NSVAR is happy to have our friend Heather Glaros as a guest blogger on our page! You can find her blog at http://shriekingvioletky.blogspot.com/  as well as find her on Facebook! If we are lucky, we will hopefully see more submissions from her!

AUTISM IS NOT A FOUR LETTER WORD

 
I remember when we got Joshua's diagnosis. It was a long, daunting process that had taken almost four years. The first time we had him evaluated he was four years old and in his last year of preschool. We were told he was just too smart for his age and was bored. That was the reason for his outbursts and "quirky" habits. Jump forward two years to the first grade and nothing has changed. In fact, it has gotten worse. So we go through the whole process again to get the same answer. He's just too smart for his own good. This had now become unacceptable. Finally, at the end of his second grade year we got the answer. Asperger's Syndrome, or as it would be called now, high functioning autism. Even though I was familiar with Asperger's and had a mom's intuition this is what was going on with my boy, it still felt like someone had punched me in the gut.
 
 Now that we had a diagnosis, what do we do? Who do we tell? My husband and I decided that beyond telling family, it would be on a need to know basis. We quickly found out that everyone who had regular contact with Joshua needed to know. Friends, teachers, karate instructors, parents of his friends, every single person who we trusted with our son had to know. It was the only way they would know what to do to help him. We were not in any way, shape or form embarrassed by autism. It was more of a way to protect Joshua. We didn't think autism was a "dirty word" but we didn't want him to be labeled or thought of differently. My biggest fear was that once that word was attached to my son that would be all anyone would be able to see. An autistic child, who can't do this and can't do that. What he CAN do far outweighs anything he CAN'T do.
 
 Fortunately, that has never happened. All the people who know and love Joshua still see him as just Joshua. Children with autism are so much more than just a diagnosis. They are loving, intelligent, creative, and above all they are people. Autism is nothing to be ashamed of and in order to raise acceptance, we have to talk about it.

10 Things Autistic Kids Need in a Pediatrician

This is a blog post written by a great friend of ours, Sharon. Please check out her site Autism NOVA because it's full of great information and insightful blog posts!

10 Things Autistic Kids Need in a Pediatrician

In a perfect world, each child would see a pediatrician who remembers the child’s name and personality, works closely with parent to identify issues and solutions, treats the child’s illnesses, provides sound medical advice, and respects the parenting choices made for the child. New parents interview multiple pediatricians hoping to find the right match for their family.  I’ve seen more planning go into pediatrician searches than you’d see for a large scale baby shower! Moms, new mothers in particular, want a good pediatrician! We want a medical partner, not a cattle call practice.When you have a good pediatrician, the worst issues are easier to handle and struggle through because your doctor is a partner working with you. When your pediatrician isn’t all that great, it’s a struggle. It’s more than a struggle, actually. At times, this one person you see a few times a year can make you question your parenting abilities and choices, can heap on guilt and can make you feel like a foolish nincompoop.  Yes, nincompoop.When your child has special needs – great or minimal – the need for a medical partner is even greater. Without the teamwork, without the medical partner working with you to reach your goals for your child’s treatment, without that medical support, it’s a hard battle uphill, in the rain, barefoot, with leeches and mosquitoes, hidden pits, hissing snakes and natives in the bush throwing rotten vegetables at you.  Well. That’s what it feels like – lonely, hard, hurtful and impossible.My son is diagnosed with high functioning autism. He seems like a pretty typical kid to most people. He has some social challenges, for sure.  After experiencing a particularly wonderful pediatrician and then a pretty lousy pediatrician, I have some words of advice to all you peds out there.10 Things Autistic Kids Need in a Pediatrician

1. Understand the nuances of my disorder. 

Just because I don’t stim the way you perceive an autistic kid stims or because my verbal skills are advanced, it doesn’t mean I don’t have autism or than I don’t struggle.  No two cases of autism are exactly the same. Try to understand how it presents in my life.

2. Don’t blame my parents for my behavior.

This goes back to point number one – understanding my disorder. It might take me three years to learn how to nicely handle a cat. I’m not trying to be mean to the cat; I think those yowls are funny sounding and they are how the cat is saying it’s having fun. I’m not being bad and my parents are really trying to help me learn how to behave properly. But my perspective is so different from yours so I have to relearn things.  This is an innate part of who I am, not a reflection of poor parenting.

3. Don’t blow me off during my exams.  

Yes, I may talk about subjects that you don’t care about. I am hyperfocused on things you don’t understand. But listen to me. I just want to be heard.  I like you and I’m trying to connect with you in the only way I know how.

4. My body is a mystery to me. 

I can’t explain my sensory overload. I can’t explain why making noises calms me. I can’t help that I wet the bed. Telling Mom it’s in my head and that if she will use the right words, I’ll be able to change these things isn’t going to work.  Unfortunately, “believing” that I can stop wetting the bed really isn’t going to make a difference.

5. I’m a pretty cool kid. 

I may be a bit “left of center”, but I’m pretty cool and have lots of positive points. I’m not a trouble maker, a discipline problem or a nuisance. (See #1, again.)

6. Take some time to get to know me. 

By understanding my likes and dislikes, you’ll be able to help me better and better motivate me to endure procedures and tests I don’t want to do.

7. I want to understand.  

Sometimes you will have to take more time explaining procedures to me. I like to know all the details. I want to know all the steps. I ask because I want to understand.

8. Be proactive! 

I need you to help my parents find the resources I need for occupational, speech, behavioral  and other therapies. They need your suggestions and direction. It can get pretty overwhelming for them and sometimes they need you to help point them in the right direction.

9. Be involved. 

It’s easy to see me once a year for a check up and a few shots. Any run of the mill, average doctor can do that. I don’t need that. I need you to be an active participant in helping me develop and progress. If my parents need a prescription for incontinence pads for the bed or a special medication without dyes, don’t be the roadblock! Help them help me. Read all the reports from the other doctors. Provide input; the more people working together to help me, the more progress I can make!

10. Be an autism friendly doctor. 

From your bedside manner, to the way you conduct your exams, to your research and education about autism, be stellar.  This means being concerned about how fluorescent lighting in your office can affect a child with autism. Understand the possible impact of background music playing in your office. Do you have multiple doors to help keep kids from running off? Do you know the specialists in the area? When the child is hyper-focusing, can you work around that for the exam? Learn about these kids and be flexible enough to work with them instead of expecting them to work around you.