Love, Not Fear Flashblog

This blog post is my belated contribution to Boycott Autism Speaks' Love Not Fear flashblog.

There are so many negative things that I could say about Autism Speaks and their message of fear and tragedy, but I would rather start with what autism means to my family.

It means that our lives are more full of purpose and meaning than we could have ever imagined.  It means that struggles and triumphs are part of daily life, but so is joy, love, and just being a family.  My children are the opposite of tragic and burdensome; I have never feared the diagnosis as many have but rather sought knowledge because of it.

When I came across people who said that they grieved over the diagnosis I was shocked.  WTF? Grief? You grieve when your child has a life-threatening illness or when you lose a child.  Autism is NOT losing a child in any capacity.  Your child is right there, right in front of you, waiting to be loved by you.  You will have to learn of ways to support them, to educate them, and to reach their full potential.

This is called parenting.

You will stumble along the way, and sometimes you will make mistakes.  But the worst mistake that you can make is the easiest to avoid: the assumption that they are not capable of love and understanding.  The assumption that just because they do not show these things in a way that is considered "normal" means that they do not feel or understand.

All About Aidan

This is Aidan, our second youngest. Often referred to as The Lord of Chaos, he is extremely clever and mischievous, and enjoys wreaking havoc upon our already cacophonous household! Fortunately, he chose parents who have a sense of humor and an appreciation of wiseassery (think I just made up a word!).  That being said, he is very sweet and loves meeting people.  He was a bright and sociable baby who developed normally up until about 15 months, when he rapidly lost all of his language and skills.  He was on a regular vaccine schedule until he was about 9 months old, when we decided to delay the rest until he got older due to concerns about the vaccine connection to autism.  In other words, he did NOT have the MMR vaccine that so many kids get at 15-18 months, but still regressed.  I may never know what caused this, but I do know that he has struggled more than my others in a lot of ways, and in addition he has had severe lead poisoning from a home that we rented (the landlord lied about the home being deleaded, resulting in Aidan nearly dying from such high lead levels...but that's a long story, maybe for some other time).  So, there is a possibility that he has suffered neurological damage from the lead; however, I do not want to dwell upon all of these negative things, but more so the progress he is making.  The past few years have been looking up for him in a lot of ways, partially because of an excellent school program and partially because of breakthroughs with Rapid Prompting Method, although it has been less regular with me going back to school.  He will be receiving some in-home services after school, and I have decided to cut down to one class partially  in order to have more time for RPM and for my family in general.  His communication is getting better using some sign language and RPM choices.  We are still working on spelling on a letterboard and typing on his iPad, and he has surprised me with words I didn't know he knew!  He is extremely intelligent and without RPM I would have no way to measure this, although I had no doubt.  His favorite subject is science, especially learning about animals and plants.  His level of comprehension is remarkable, and he loves to be included in conversations and to have things he has learned be a topic of discussion because this helps him to apply the knowledge gained.  I have noticed that teaching him and involving him is the best "behavior strategy" of all, and will benefit him more than any other throughout his life.  The more he interacts and feels he belongs, the calmer he becomes.  I love that although he doesn't have words, he will not be silent, nor will he allow me to become complacent.

All About Ava

Ava is 6 years old and is our youngest.  She has always been very friendly, curious and regal; she is 50% princess and 50% tomboy and is the only person in the world who can make her dad do ANYTHING!  She loves to go clothes shopping and admire herself in the mirror when she's not climbing everything, getting said clothes dirty outside, and playing/learning on her iPad. It is her belief that ketchup, barbeque sauce, and honey mustard make everything taste better, especially toys. 

 Her development was normal, until we noticed delays in her expressive language.  We decided before she was born to hold off on her vaccines until she was older because of concerns/questions that we had regarding vaccine safety and their connection to autism.   She received an official diagnosis at 2 years old and received services through Early Intervention and Building Blocks, and began school at 3 in an autistic classroom.  Although she had difficulty at first (as would any kid), she quickly caught on and has always enjoyed school.  She has been nonverbal until the past few months, but is now beginning to use some words -- mostly imitation at this point, but it is a start!  

I began teaching her one-on-one using Rapid Prompting Method when she demanded that I do so because she had seen me use it with Aidan, but she has had a break from it because she has been  receiving services at home after school and I don't want to wear her out!  Some time in the near future I will start working with her once a week because I think she will benefit more from it now that she is a little older and able to sit for longer periods.  At this point she probably is more proficient in math than I am and her spatial awareness and puzzle-solving ability is extremely advanced!  True story: a few months ago Aidan and Ava took part in a university study and part of it was puzzles which consisted of a pattern with a piece missing.  Ava kept getting them right, and the clinician kept giving her more and more difficult patterns.  As the patterns got more complex, there were some that I thought Ava got wrong, thinking to myself,  "Still pretty impressive, though. I mean, she was CLOSE!"  only to find out that she wasn't close. She was right and I would have chosen the wrong pieces!  

She is currently obsessed with the number 2, as she has realized that 2 is better than 1.  She notices when there are two of something, insists that I comb her hair into 2 ponytails, and when we tell her she can have 1 of something she's been known to say, "No. Two."  I believe that's her first sentence.  

Ava is absolutely amazing, and her autism is just part of who she is.  I am glad that her language is  emerging, because the only thing that has held her back at times is the frustration of being unable to communicate.  She can be challenging at times, but I can't help but admire her fierceness and tenacity even when she's making me want to pull my hair out!          

As with all of my children, I don't want to change who she is, nor do I want her to grow up thinking that there is something wrong with her.  I simply want her to be accepted and to have the supports needed to reach her full potential -- which, by the way, is huge!

            

A Post About My Next Several Posts

These next few posts are going to be about each of my children individually.  I think that Autism Acceptance Month is the perfect time to focus on each child, their personalities, strengths and struggles to show that autism is part of who they are but does not define them.  There is a lot of controversy as to what the causes of autism are, and I don't have any answers; however I am going to mention each child's vaccination history because what information I have to offer is simply fact.  I am not saying that vaccines are the cause or not the cause, simply what our experiences are.

Whatever the causes are, it is time to act rather than point fingers.  Crying and blaming is getting tired, not to mention the fact that it gives people with autism the message that there is something wrong with them.  This needs to stop.  Someone who cannot speak can still understand what those around them are saying and feeling and needs to feel loved and included, even if they express their feelings differently.  It's time to change our way of thinking and accept that a large percentage of our population has different wiring and yet have to deal with us damn neurotypicals!

This is not to say that life is always rosy or that my children don't have difficulties, but I choose to embrace them for who they are and try to help them build upon their strengths.  I have found that emphasizing their strengths tends to minimize their struggles and difficult behaviors, and if I am not providing enough support their behavior becomes more challenging (translation: destructive!).  This, to me, shows that they want to be included and educated just like everyone else, and deserve to be heard and understood.

New Facebook Community Page

https://www.facebook.com/ImWithNeurotypicalMamacatsAutismPage

http://www.kickstarter.com/projects/1055563101/legends-of-the-boo-monster

Check out this project, this book is going to be amazing!  I read the first chapter and can't wait to see more!

RPM, iPads, and College Degrees....Oh, my!

To say things have been absolutely insane, chaotic and overwhelming should go without saying, but I had to say it anyway.  I did, however, swear to myself that I wouldn't yet it get to the one year anniversary of my latest post and I will keep that promise!  I'm not sure exactly where to begin because the activity has been nonstop whether I am keeping up with it or not.
RPM has been a bit on-and-off for both Aidan's and my liking but it's looking more on in the very near future.  Our progress was slowed by many factors, including my (insane but not regretted, at least yet!) decision to go back to school and get a degree in teaching.  I think I'm starting to get the hang of it....
We have also added iPads to our communication aids, which are amazing but also make me really want to get back to RPM, because I don't want anyone reliant on technology alone for communication.  So far, Ava is far more interested in the iPad anyway, but as I set up the communication apps more I think Aidan will start to appreciate it.  Right now he mainly thinks it's for YouTube...
Devlin continues to enjoy zombies, and seeing as he is entering his teenage years is exploring ways to be obnoxious.  His latest is blasting rap, which I try to ignore but somehow they know....they just know...  He has, of course, managed to charm his new school with his awesome Devlinness.  He's going to be in a school play next month as well as kicking a$$ in the Special olympics.
Lillith has gone through several changes in name, political parties, diet (vegetarian or carnivore?)...all of which are permanent and we must remember them and "treat" her as such...if we don't  its countless hours of psychological torture and if we do it's, well, countless hours of psychological torture.  On the up side, she made the honor roll and is running a 5k race on Sunday.  
Hmmmm, what else?  Guess that's it, and believe me it's enough for now!