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Tina is the creator and head chick in charge around here at Autism Sucks. If you want to write, just ask! Her personal blog is Send Chocolate Now, because when you have kids with autism, life is survivable, but it takes chocolate.

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Some Thoughts on Autism Awareness Month

The month of April has come to a close, and with it ends Autism Awareness Month.

However, so many of us don't have an end to Autism. It is an ongoing, daily struggle filled with accomplishments, setbacks, discoveries, joy and pain. It is a journey, and the topography changes moment by moment. However, it is filled with the most wonderful people you could ever come across.

But we as a community are fractured. Broken. Divided.

Split along lines that should not be there; dividing a group that needs to band together to help our children and our friends and family members gather hope and strength to face our special brand of challenges.

To help us weather this storm.

Here are some things I would like the Autism Community to really think about and consider making changes to in the next year:

• Start thinking about what the future holds for our children on the Spectrum.

  Our focus has been laser-like on the birth-to-three side of the disorder, and you will hear no argument from me that early intervention is key; but in our haste to put all of our eggs in one basket and cure! recover! heal! we have overlooked a large group of children on the spectrum that still need assistance - the Adults. All of these children grow up to be adults, and as they age, the assistance gets less and less. The transition from young adult to adult is equally as important to a child on the spectrum as it is for that same child during early childhood. We need to remember to look at their lives as a spectrum as well, and provide assistance throughout their entire lives.

• Acknowledge that not all children can be "cured" of Autism, and that most are not.

  This is what is fracturing the Autism community and giving false hope to parents. I am not Jenny McCarthy, my child is not "cured", and many of us need to be okay with that. My son is a teenager, and while he has grown by leaps and bounds, he still has challenges that will plague him the rest of his life. We need to be okay with the thought that this is a process. I tell my friends that have read Ms. McCarthy's books (I have as well for purposes of full disclosure) that I would like to see what she has to say in a few years when her son gets older. I think she will find that the "cure" she spoke of in her books is not the permanent one she was hoping for.

• That money has been funneled into the wrong areas for far too long.

  Many parents, myself included, are tired of hearing that more money from Autism charities are being funneled into discovering how this happened and which additives in vaccines caused this. Should we "Green our Vaccines"? Absolutely. Should we change the schedule? Probably. Should we be the only group saying this to the world at large?

  NO.

  We need to find another soapbox that fits the needs of ALL of our children on the Spectrum, not just the ones who get the most air and face time. Not just the younger ones.

  If you are going to Rescue an entire Generation, it helps to make sure you include everyone, no?

• Start building a community; one that serves ALL in it.

  I had the pleasure recently to spend time with a group of kids and their families that cancer had touched in some way, shape or form. What struck me deep in my heart was the bond these people share, the closeness, the support. People from all walks of life, celebrities, sports heroes, all donate time, resources and money to support and care for these families in this scary, rough and expensive time. And they keep on giving and many pay it forward after they no longer need as much help. The Autism community has nothing like this, and quite frankly it breaks my heart. If we had had even one-tenth of this amazing resource to help families share, bond, get assistance, and gather strength and hope; it would be amazing. If this help is available to us currently, it more than likely has strings attached. Strings of "cure".

• Remember that we are not perfect, and that there is so much to learn.

  Take a class. Listen in on a Webinar. Read. Discuss. Tell your story; don't be afraid or embarassed. We need to learn from each other. We need to spread the word. Autism and Spectrum Disorders are relatively new to the world vernacular, and we need to raise awareness. That being said…

• Don't scare people by sending frightening messages related to Autism.

  Don't equate Autism to a plague, or a horrific act. Someone who I follow on Twitter sends out messages about Autism that only confuse and frighten people. Scaring people into learning about Autism only mixes our message even further. There are many people who are coming forward and revealing that they have ASD and grew up during a time when many had no idea how to work with people who had Autism. Their stories are inspirational, and we need to pay attention.

• Appreciate how far we have come…

  Autism has had more air time in recent months than in previous years. That's a good thing. The fact that there are services for our children, therapies and interventions to help our children grow and function in society is something to be proud of. The accommodations in the schools and the support staff to help our children has increased three-fold. It's wonderful to see.

• …but remember we have so much further to go.

  We need to do more. We need to ask for more. We need to demand more. We need to ask for more services. We need to build an infrastructure to support our families who have no idea what to do or where to go when they are just starting down the road. We need to help those still struggling down that road. We need to work with the medical community to build a stronger protocol to get testing and services for our children earlier than second grade.

• So let's get together and feel all right.

  Let's get together on our global message and remember to include everyone, not just the people that fit a particular (cured) category. Let's work together to spread the collective word that while some children see great improvement with different interventions; let's remember that one size does not fit all, and we need to look at the bigger picture for our children. The lifetime picture.

  So, same time next April then?

crossposted on 5 Minutes for Special Needs Shash is a mom of 2 boys, one with Asperger's Syndrome and one we're not sure where he'll land on the spectrum. You can find her tipping at windmills as a Teaching Assistant in an Elementary School. Shash also writes at her home blog, Diary of a Crazed Mommy.

In my house, EVERY DAY is World Autism Day

I'm not sure if you are aware of this, but I have a child who is Autistic. You may not know, or even realize it when you meet him. It might take a few minutes. Or an hour. But at some point when you meet my son, you will begin to notice he acts different. It might be the way he flaps his hands. Or the way he hums to himself. Or the way the conversation he has with you keeps ever-so-slightly going back to the things he likes. It could be because you notice the things he's interested in are younger than he is; or he talks older than his years. You might notice his anxiety. But, if you don't realize it, that's okay too. That's okay because we have worked very hard to help him fit into society's mold. We have embraced Early Intervention, ABA, ESE, Inclusion, and a myriad of other therapies and interventions. (Thank you, Quest Kids and UCFCard!) In short, we have worked very hard for you not to notice the Autism. However, it is a part of him. It is him. Those quirks will never disappear. They may diminish, but they will never fade totally away. And while it is okay with me, it is clearly not okay with society. I say that because the media heralds the "Recovery of Autism"; that "Autism is Reversible". I guess in some cases it could be. Just not in any cases that I know of. That I personally know of. Not to mention, the cases that are brought out to the media are the young kids. The ones who benefit from Early Intervention. Many Autistic children will benefit from Early Intervention therapies (my son did!). The articles about older kids are usually how they are coping, how they are adapting to society. How they are dealing. Because it is difficult. Because it is hard. These young kids grow up. They become adults. And while Early Intervention can and does help Autistic kids, those kids get older; and as they age, the therapies, the interventions, the assistance gets less and less, until there is no more. Until they are totally on their own. So today, on World Autism Day, while we should celebrate our successes and appreciate how far we've come, we also need to realize how much further we have to go. We need to reevaluate how we help our children grow into and become adults. Interventions and assistance should not and can not stop when they need us the most. And they do need it. Don't be fooled. Starting today, let's discuss what we can do, how we can do it, and what we need to do to get this ball rolling along. Talk to me:

• On Twitter
• On Facebook
• via email:

The clock is ticking. His life depends on it.

Shash has two amazing boys, one with Asperger's, a form of high-functioning autism, and in her copious amounts of spare time is a Teaching Assistant in a special needs classroom at an elementary school. Read more about her life and family at Diary of a Crazed Mommy>.

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We Are Part of the Cool Crowd!

(but you can still sit by us at lunch) We have new jewelry in the sidebar! Just found out that All Top has a new autism page, so by all means, check it out! All Top Autism Keep writing you guys, it is getting noticed! And if you are reading and are thinking, "Oh I could never do that..." Yes, you can! (channelled Obama for a minute there) If you are a parent or caregiver who deals with autism you have a story and we want to hear it! Email me to be added as an author for this blog. T, who loves you all

An Open Letter to the Airline Industry from an Aspergian’s (Autistic Child) Mom,

Let me begin by saying my child is not the enemy. Please try not to treat him like one.

My child has the same rights and should be allowed to ride in a plane, your plane, just as the gentleman snoring loudly in seat 3B is right now. Yes, I understand that he’s screaming bloody murder right now. He’s frightened. The pressure in the cabin is affecting his sensibilities. The people talking loudly to each other; the sounds that the plane is making are affecting him. Please don’t keep stopping by and checking his seatbelt every 10 seconds. I can’t help but notice that you didn’t seem to care about the other screaming child in the back of the plane.

Oh? It’s a newborn? Well, can I ask why the double standard? How is it okay for that parent to escape scrutiny, yet you keep harassing me? My child should “know better”, you say? Hmmmmm. I don’t think you understand.

Allow me to explain. Also, allow me to clarify.

Just like that newborn, my son struggles to verbalize his discomfort in social situations. His understanding of this situation in his mind is identical to that newborn back there. I have taken the time and great effort to make sure we have things to make him as comfortable as possible for the duration of this trip, but even I can’t ultimately control his reactions. As his parent, I do my best, just as you strive to do, each day in your job. Sometimes I miss the mark. Trust me, it is definitely not intentional. I did not awaken this morning thinking “How can I piss off everyone my son comes in contact with?” I have much bigger fish to fry.

In the not so distant past, it was customary for a passenger when booking a flight to tell the person who booked the reservation what special needs they might have, if any. This needs to start making a comeback. I am more than happy to let the staff know our situation, and if necessary, things we can do as a team to make this trip as enjoyable for everyone. It may mean enduring some moments that are not so comfortable for a period of time, but the end result might turn out to be not so bad. The best part is you have an opportunity for a learning moment to take place. We can all stand to learn something, wouldn’t you agree?

The worst thing you can do is make me or my family feel like we have done something wrong or inconvenienced you in some way. On every flight (or just about) I’m certain that there is a screaming child or an obnoxiously drunk adult or that one person who can’t wait until the sign is turned off to move about the cabin. I don’t always see a police escort waiting for them at the airline terminal, so why single me out? It’s because autism is such a hot topic, isn’t it? Or, is it your lack of training and understanding of the situation? Please help me to understand.

My family is not your enemy. Please try not to treat us like one.

Lets’ try to work together to keep those skies as friendly as we can. I’m game if you are.

Sincerely, CrazedMommy

Shash and her family fly the not-so-friendly skies rather frequently. They have the miles to prove it. She has two amazing boys, one with Asperger's, a form of high-functioning autism, and in her copious amounts of spare time is a Teaching Assistant in a special needs classroom at an elementary school. Read more about her life and family at Diary of a Crazed Mommy. This is her first post here at Autism Sucks.

Flailing On The Fourth

I am not a mom who takes this whole "Asperger's" thing lying down. I am not an advocate mom like some of the really great mom's I know. I need to get out there and do that. I just haven't been in the pool long enough to get in the deep end just yet. I am a mom however who does not tolerate any garbage when it comes to people dealing with my kid. 

The Fourth of July is one of my least favorite holidays. I know that you probably think that is all "UN-American" and horrible, so sue me. Seriously though, throughout my life it has proven to be crazy. If it was not spent in the ER for hives, pink eye, or some other freaky ailment that I managed to catch at a summer barbecue, something weird happened when we were out at some big fireworks display. (For example my springer spaniel ate an ENTIRE CHOCOLATE TEXAS SHEET CAKE in my grandmother's kitchen. When we got back to her house we thought that the dog was dead. She wasn't. She was in a sugar coma for three days.) 

With Bacon and his Asperger's the Fourth has been less than fun. When he was two he was so terrified he screamed for two weeks every time we went out side about the scary fireworks. It was SO MUCH FUN. Last year he had a great time with the other kids watching Mr. T and the other dads blow stuff up. This year sucked. There were way too many kids most of whom know that Bacon likes to watch the fireworks but doesn't like to touch them. Still these same kids kept pushing and pushing for him to touch them. 

Finally when the neighborhood's biggest pain in the butt (She is 12, she has two pet GOATS, and knocks on everyone's doors at 9pm looking for someone to play with.) was chasing after him with a sparkler and trying to grab him I lost it and yelled at her. 

"EMILY! Leave him alone. He is four, he told you he is afraid of the fireworks, and if you don't stop I am going to have to ask you to go home." 

She of course ran to her dad and cried like she was 4, and her dad gave me the stink eye.  I could have cared less. She is OLD ENOUGH to know better. He is old enough to know that she should not be chasing after a little kid with FIREWORKS, especially when that kid is freaking out. 

I am mostly frustrated because there is another boy that lives close to them that has Asperger's that they treat with kid gloves. Not that I want them to treat Bacon like that, but I also don't think that I should have to staple a sign to his forehead reading "PLEASE TREAT ME NICELY AS I AM NOT NEURO-TYPICAL" 

Was it not obvious from him freaking the hell out all not? Was it not obvious when he was running in circles and smacking himself in the head? Or do people think that is normal four year old behavior? It had me freaking the hell out, and I had taken two Xanax and drank some wine! 

How do you handle this? What do I do? I know I can't forever bully all of the nasty kids out there. (Although technically I didn't bully that little snot.) I just don't feel like I have the right answer or any control. So now as an adult the Fourth of July still sucks, but for a whole new reason, because I can't keep my son safe or under control. 

*My name is Faith Tantrum. I am a 31 year old mom to a 4 year old son who was recently diagnosed with Asperger's. I blog almost every day at Momma's Tantrum about our life with Asperger's, Coffee, the crazy antics here, and more. I do have a fierce potty mouth so if you are easily offended, just cover your eyes and hum loudly!*

Question for Authors and Others

Friends, and prospective authors...I was thinking we could add a bit of a bio and a link to your blog at the end of your posts. That way, it gives you a bit of exposure. Let me know what you think.

T.

Welcome to Autism Sucks

Hoping this blog will have multiple authors, all about autism and how much it sucks. Mostly, it was inspired by a friend who was feeling alone. I know there are a lot of us out there, so let's band together and support one another.

My vision for this blog is to have anyone who wants to write about how it is to live with autism. Just email me (link located in sidbar) and I will add you.

..or to make sure I get it quickly, leave it here, in the email at the top of the sidebar: Send Chocolate


T, who is there in the trenches with you