Showing posts with label autism acceptance vs. autism treatment. Show all posts
Showing posts with label autism acceptance vs. autism treatment. Show all posts

Thursday, April 15, 2010

We're in with the In crowd.

Here in Melbourne my son and I attended our first World Autism Awareness Day march, from Autism Victoria through the streets and up to the steps of the State Library, on April 2.

For the first time in a long time I could see a difference in my son as he looked around at the mass of people thronging on the nature strip in Drummond Street, Carlton, awaiting the signal to start marching.

I kept a tentative anchorage for him by lightly rubbing his back now and then, to reassure him I was there if he needed me; at one point he actually turned to reassure me that he was fine, thank you very much.

I looked at him and realised there was an inner glow, a lightness and happiness to him that I had not seen in a long time.
It took a few seconds for me to nut it out but it was so simple; he wasn't the odd man out in a crowd for the first time in years.

How often is it drummed into us parents to assist our kids to integrate with neurotypicals, to have them socialise with them as much as possible to get the old 'monkey see, monkey do' happening with social behaviour, yet somewhere in following the rules we kind of miss the message our kids need to know they aren't the only ones who think, process, talk, walk, just plain are different.

He proudly marched with others, he shared smiles and grins, moving out of the way for mothers with prams, returning waves to strangers who stopped to watch and wave to the marchers but the most compelling, the most empowering thing for him that day was to realise for himself that he was a part of a whole community and not just the novelty Aspie geek kid.

Next week he attends his first Aspie teen social support group and he's almost bursting with excitement to just be another face in the different crowd.
Cos the different crowd rocks.

And it will keep on rocking throughout May as Autism Awareness Month in Australia.

Ro is from Australia; she has a partner on the Spectrum and is the mother of a 13 yr old homeschooled Aspie teen studying at University, both of whom have recently given her permission to blog about their challenges with multiple diagnosis' alongside Autism at Get Over It...I did.

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Tuesday, November 24, 2009

What color is autism?

“Isn’t the sky the most beautiful shade of cerulean blue today?”

I thought he was color blind, because when I asked what color an object was, he would tell me the wrong one. In school, turned out not only did he know cerulean blue, as he told his teacher, he knew the entire box of Crayola 64 crayons! He wore an Indiana Jones fedora for three straight years. He wouldn’t wear anything but tan pants to “look like Indy” for at least two years. When he was younger, I had to flush the toilet for him, he couldn’t stand the sound. He loved water play and would spend hours playing at the sink. He hates to cut his hair. He can tell you more than you ever wanted to know about UFOs, Mythbusters and the latest video game to capture his interest, but he couldn’t tell the librarian his phone number. He cries easily, especially when frustrated, which also happens frequently. He knows what direction he is traveling at any given moment. He notices details that would escape most of us. Like the time they painted a gas station bench…the new color, the old color…doesn’t matter. He remembers. But he can’t recall his math facts. He doesn’t like doing activities that are not of his own choosing, and hates to perform on cue. He cannot eat gluten or dairy without a lengthy side trip to the bathroom. Consequently, he is on a special diet. He still moves snails out of harms way, just as he once did when he was two. He is now eleven.

She yowls like a cat when she is angry. Hours are spent in solitary play. She is very imaginative, creating elaborate worlds in her play, but other people don’t easily fit into her scenarios. She can be very rigid. She likes routine. She has a hard time with transitions, even when it is something she really wants to do. Her self-control, while improving, can be difficult. She eats almost anything, and more than you would think…she is a elfin little thing. She cannot read well yet, and doesn’t so much want to. She must be taught concepts repeatedly in order for them to take. Sometimes they do. She is a sensory-seeker, needing a lot of hugs, cuddles and attention. If she doesn’t get it, she will act out negatively. We call it “getting her pound of flesh” one way or another. Her whole life is a song. Even her voice is a song: a high-pitched melodious voice is used in conversation. Unless she is yelling. She speaks in half sentences. “Want cookie!” She is social, and loves having friends. She likes being in charge. She has trouble understanding changed decisions…she is certain they are lies. If I say something, I must follow through. She has a memory like an elephant, when it comes to things she cares about. She throws the worst tantrums I have ever seen. She is eight.

She loved to swing as a baby. At three, she threw horrible fits. I would have to hold her to keep her from hurting herself and me. In preschool, while other girls wanted to be a mom, she told her teacher she wanted to be a paleontologist. When her teacher expressed confusion she told her, " You know, a scientist that studies dinosaurs. Everyone knows that!" She taught herself to read at three and a half. She was reading chapter books by age five. She was a walking dictionary. She loves Biology, genetics, Latin, Logic. She is very literal, black and white and has a strong sense of justice. She doesn’t always pick up nuances. Interruption of conversations comes naturally to her, but not because she is rude, she just doesn’t get the rhythm of the talk. She understands sarcasm, but doesn’t appreciate it. She struggles with perfectionism, and a lot of anxiety. She taught herself to knit and play the piano. She tries hard to fit in with her peers, but there is always something just different about her. We say she is the “oldest thirty year old” we know. She is fifteen.

Some may say, “Well, sure, that is any kid!” But truly, my kids are like the amp in the movie Spinal Tap . Most amps went to ten. But the one in Spinal Tap went to eleven, “that’s one more, isn’t it? ” And that’s what my kids are…just a bit more.. a bit harder. This is what autism looks like in my house. I have no idea what causes it. I only know I watch my children struggle with it. We are fortunate, I suppose, since the picture I paint you is of high-functioning autism. They all have speech. They don’t spin. Or flap. But it still affects our lives. We walk on eggshells. It isn’t so much a cure I want…as an answer of what caused it, but if you ask my kids, they will tell you they want a cure. They say it is hard to live in their skin. I can see that’s true.

Every day, I see that’s true.

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom Orange County Special Needs Kids Examiner at Examiner.com, a featured blogger at OC Family and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.

Sunday, May 3, 2009

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.

Thursday, April 2, 2009

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:
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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Friday, February 13, 2009

Something You Can Do...RIGHT NOW

For Valentines...just in time. Go and comment on Party Planning Professor... every comment will earn a donation for Autism Speaks. More importantly, we gain autism awareness. So, make my Valentines Day...go do it! Now. Thanks and love to you! T. Tina Cruz is a writer, wife and mother of three children. The two youngest children have high-functioning autism and the oldest has undiagnosed Asperger's Syndrome. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the editor of the Special Needs channe at Typeamom. Her personal blog can be found at Send Chocolate. Autism Sucks is her brainchild.

Saturday, November 15, 2008

For Parents Who Are Torn Between Autism Acceptance and Autism Treatment...

If you feel torn between accepting your child with autism and treating them, there is no need for you to. That’s right; you do not have to choose between accepting your child who has autism and treating their autism. You can do both. I repeat: You can fully accept your child with autism AND you can treat your child’s autism without in any way diminishing your acceptance of or respect for your child. You should unconditionally love and wholly accept your child who has autism simply because he or she is your child. As parents, we love and embrace the children we have been blessed with because that’s what parents do. As parents of children who have autism, we must acknowledge that autism is a part of who our children are and that autism will affect them, us, and other loved ones… because that is our reality. Our children are who they are, and their autism is an important element of who they are. We must accept them for who they are and support them as best as we can. It is your right, privilege, responsibility and obligation to make decisions that are in your child’s best interest. If you are researching and implementing therapies, treatments and other interventions that you believe will be beneficial to your child and will help them to lead a productive, meaningful and fulfilling life with the greatest degree of dignity and independence possible, then you are doing the right thing. I implore you to avoid feeling compelled to choose between accepting your child and treating your child. You don’t have to; you don’t need to; and you shouldn’t. Rather than choose sides, choose to accept your child for who he or she is and to help him or her reach their full potential. Michelle McFarland-McDaniels is the mom of two beautiful preteen girls who have autism. She is also a wife, writer, blogger and teacher. Michelle publishes the Autism Assistance Resources and Information blog. She is also the publisher of Funding Autism Treatment and College Resources for Students with Autism.

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