Thursday, March 29, 2012

Autism Speaks Blog Post on Graceland

Link to Lighting Graceland Blue Article on Autism Speaks Blog!!!

This is the post I wrote for the Autism Speaks blog about Graceland.  It appeared on their blog today.  It's such an exciting time...the suspense until April 4th is killing me; Graceland is giving a private tour to 15 of us, the walk committee and family members from 2011.  Then a lighting ceremony after the tour.  I will take LOTS of pictures I may have to make on of those Flicker accounts HMMM.  Just what I need another login and password to deal with!LOL


M E L T D O W N S 
* Massive
* Exasperated
* Loud
* Tiresome
* Destructive
* Oversensitive
* Worn out
* Noisy
* Spontaneous 

 Cynthia Wynn-Brandon

Friday, March 23, 2012

Proprioceptive Awareness

Who knew anything about the proprioceptive sense BEFORE you had a child with autism, I sure didn't!!!  Maybe this article will help you understand your child a little better!!!

The article is written by a David Brown, Education Specialist with California Deaf-Blind Services. What was interesting to me was that his experience in working with children on their audio-visual senses, portrayed the truth we know from working with children on their sensory system: that in order to improve the auditory and visual processing senses, first the proprioceptive and vestibular systems must be rectified. Because the former relies heavily on the latter.
Back to the wonderful definition of proprioception provided by the article:
The sense of Proprioception
The way we can ‘feel’ where all our body parts are in relation to each other (and also ‘see’ them in our mind’s eye), without actually having to touch them with a hand or look at them with our eyes, is an ability that we get from our proprioceptive sense. This sense helps us to plan, to position, and to grade our movements without always having to use vision to check what we are doing. You can feel this sense working if you close your eyes and place your right index finger on your nose, and then touch the same finger on to the tip of your left thumb; the proprioceptive sense is not infallible so you may miss your targets a little, but with repeated practice your aim will improve significantly (which reminds us that proprioceptive abilities can be learned through experience and improved through practice). Proprioception is a strange word, actually a combination of two Latin words that means ‘an awareness, or a feeling, of one’s own self’.
Take note. One’s proprioceptive sense can improve drastically. Improving proprioception means improvement in all other senses, as they are closely linked.
David Brown gives us more important clues to improving proprioception:
The proprioceptors
The receptors of the proprioceptive sense (which are known as the proprioceptors) are located in the muscles and joints throughout
the body, and they are sensitive to stretching and to compression. When this sense is working effectively the brain, at all times, has
an awareness of where the various body parts are in space, if they are moving or not, and how fast and in what direction they are
The article then tells us what a child with a dysfunctional proprioceptive awareness typically does, and we can now understand these behaviors. In summary:
- Child may not to want to or may be unable to push up on his hands or arms while laying face down due to low muscle tone or inability to feel joints in his fingers, wrists, arms, and shoulders.
- Child may not want to or may be unable to stand and bear his weight as he cannot feel the joints in his hips, knees, ankles, or toes, while simultaneously standing straight.
- Child may often use his hands to prop his head or lean against a chair, couch, or wall instead of sitting up straight.
- Child may stamping or foot-slap against the floor instead of walking, or the complete opposite- walk lightly on tiptoe.
- Child may have constantly clumsy, uncoordinated movements.
- Child may use too little force or excessive force when pushing, pulling, grasping, touching, lifting, or placing objects.
- Child may do any of these as he is seeking strong pressure input: squeeze himself into small spaces, twisting arms and legs around each other, swinging legs while sitting in a chair, grating teeth together, banging his face or head, flapping arms, hang or swing in the air, jump and crash down to the floor.
What can we do to improve proprioceptive awareness? The article provides a number of suggestions, which are familiar to those of us who have children in occupational therapy:
-Deep pressure activities
-Brushing (not to be done without an OT’s guidance)
-Joint compressions
-Weighted vests, blankets, or lap pads
-Playing sports
-Chewing gum or something else for chewing on
-Animal therapy
-Various “rough and tumble” activities such as a crash pad or a trampoline.
Each of these activities provides pressure or sensation against the body, giving the child a sense of where he and his limbs are in space.

The Cause of Stimming: What’s your stim?

2012/03/22 By Karen

Yesterday I posted the right questions to consider about your child stimming continue to read....

Everyone has a stim
I play with my hair while chatting with a friend.
Maybe you bite your nails when you’re nervous or bored.
You may tap your fingers or pencil on a desk while you’re thinking.
I once knew someone who chewed on sticks of cinnamon bark, and I’ve noticed some who move their eyes in an unusual way.
I can recognize certain people from far away just by their distinctive movements. We all know someone who has an annoying stim like cracking their knuckles every 5 minutes or repeating a phrase over and over; or a socially unacceptable stim such as nose-picking or biting oneself.

The Definition of Stim
The word stim is short for self-stimulation. It is associated with several conditions such as deafblindness and intellectual disability, but most commonly with autism. My son’s neurologist calls it “autistic stereopathy.” It is also sometimes called “stereotypy.”
The DSM-5 includes stimming as part of the diagnostic criteria for Autism Spectrum Disorder: “Stereotyped or repetitive speech, motor movements, or use of objects…symptoms together limit and impair everyday functioning.” That right there is the difference between autistic stimming and typical stimming: when the stimming interferes with everyday activities and prevents learning, it is often a symptom of autism.

The Wrong Question
“How do I stop the stim?” That’s usually the first question parents ask when a young child discovers stimming. But it’s the wrong question.
First of all, no one can stop self-stimulatory behavior completely, because everyone does it anyway! Secondly, even if one stim can be removed, it will be replaced by another — and the next stim may be less preferable that the current one.
The most important reason not to eradicate stimming is that you may cause your loved one to withdraw more and more, and lose your opportunity to encourage healthy interactions.

Official "Graceland Lighting it up Blue" Announcement

Autism Speaks Blog Post Graceland

Graceland Goes Blue!!!  Autism Speaks is sending two individuals from New York on April 4, 2012 to cover the story!!  How exciting!!
This is a picture from the announcement, I will take pictures the evening of April 2nd and post!!!

Thursday, March 22, 2012

Making the Light up Puzzle Piece

I used a foam board from the Dollar Tree and cut out the puzzle piece. I used spray adhesive Elmaer's spray on glue and put blue and silver glitter on it. I bought 100 "fairy" lights on eBay (blue). Then poked holes in puzzle piece about 1 1/2 inches apart and put the lights in. I taped the excess wiring down on back.  Good Luck!!
My Puzzle Piece for Light It Up Blue!!!!!

Our Clinical Trial is Coming to a Close

Our participation in the clinical trial for STX-209 is almost complete. Noah just took his last dose of medicine & we go back on Monday for the last visit in the trial. We get the option of putting hi on the medicine THE OPTION?? It's a requirement (for me) there is not one doubt in my mind that we were on the medicine and not the placebo. Everything changed for the better communication appetite, cognitive skills, interacting with the environment, age appropriate toys, social skills improved, ability to educate him & retention of what we had covered. Are there still areas for improvement OF COURSE but as far as I am concerned I think WE ALL have areas of improvement don't we?

I hope we get to continue with the same staff members on our follow up visits. They are incredible we went from visit 1 with a TOTAL meltdown after the blood draw. I mean laying in the floor kicking and screaming you know the kind. Now when he has blood drawn he watches and says "ow" and it's over. He loves going to Vanderbilt we always get pizza for him from the Pizza Hut downstairs. He loves his own little pizza. Of course we have to keep the box, he is such a little hoarder we walk through the parking garage and he is picking up pieces of paper and shoving them in my purse.

When we started this part of our journey I had no idea where it would end up God works in mysterious ways, I was at a point where we didn't know where to turn. We were on waiting list all over the city but his behaviors were escalating. I am talking biting, hitting, kicking, stomping on me If he knocked me down. This was constant, I had considered anti psychotic drugs but the side effects concerned me. I got the email from Vanderbilt about the trial I immediately called and the next week we were there. God has truly blessed us and once again pointed us in the right direction to continue to help Noah and our family through our journey with autism.

Why Does my Child Stim???

The Cause of Stimming: What’s your stim?
MAR 22, 2012 09:57 AM | KAREN   

The Link to the Friendship Circle Blog Post (Complete Post)

“Why does my child engage in this (Stimming) behavior?” Seeking to understand the motivation for a behavior is always a great place to start. There are several hypotheses and known causes for stimming:

1. Overstimulation
stimming can help block out excess sensory input.

2. Understimulation
stimming helps provide extra sensory input when needed.

3. Pain reduction
repeated banging of the head or body actually reduces the overall sensation of pain. One hypothesis is that stimming causes the release of beta-endorphins in the body, which then causes a feeling of anesthesia or pleasure.

4. Management of emotions
both positive and negative emotions may trigger a burst of stimming. We’ve all seen physical reactions to joy or excitement, such as jumping or hand-flapping. Frustration or anger may intensify a stim to the point that it becomes destructive.

5. Self-regulation
Some stims serve the purpose of soothing or comforting. Many infants learn to suck their thumbs to relax themselves.

I recently read a blog in which a parent asked why her son covered his ears in his sleep. He had learned to cover his ears when his environment was too noisy, and that was soothing to him. So he started covering his ears whenever he needed to comfort himself, especially when falling asleep.

Saturday, March 17, 2012

Age Appropriate Toys

It's really amazing but Noah has come SO far the past few months, he is playing with toys that are appropriate for his age, he is into Lego Ninjagos, expensive (their Lego) & tiny.  But worth every penny to see him playing with them like your suppose to.  I am so hopeful of his development it has been coming quickly, more so than in the past.  He & Savannah are playing together more and not quite as rough as they used to.  They have watched a couple movies together this week.  Noah has been much more explosive and prone to meltdowns at the drop of a hat.  We knew this would happen we are in our final weeks of the clinical trail and he is being weened off the medication. IT SUCKS!!  There is hope...we go back on 3-26 and get back on the medicine YEAH!!

Monday, March 12, 2012

Mother-in-Law of the Year Award...

Goes to..... I  bet you thought I would say, "NOT my mother-in-law!"  Well you would be WRONG!!  When God decided that I was gonna marry hubby, He took into consideration the "In-Law Compatibility" factor.
To Meme for Being the Best Grandmother & mother-in-law EVER!!!

 My mother in law she is referred to as Meme is just awesome, there's no other way to put it.  We live with her, before we had the kids we lived with her, she has Multiple Sclerosis, she is able to care for herself so it's not like we have to do stuff for her.  As a matter of fact my life would not be like it is today without her, I am able to home school and return back to school myself because of her.  She takes care of the family, she does most of the laundry with 5 people that a lot, she cleans like a crazy person, she & hubby do all the cooking (I am sort of banned from cooking, but that's a whole other story there).  She enjoys her TV shows, she & Savannah (my daughter) are close, as most of you know a child on the spectrum monopolizes a lot of your time and energy.

Meme is truly amazing, she reads and looks at materials on how to understand autism and it's effects, she doesn't give advice she listens to new strategies we want to implement with Noah, I go over materials that are pertinent to Noah and Savannah's development with her. Both my parents are deceased and she has truly been there for me and the kids, she watched the kids back in the day when I had a "real job"

You all know how hard it is to raise a child with autism, how "typical" parenting strategies go out the window, it is hard for some of the older generations to understand that conventional parenting does not work on our kids.  She has ALWAYS embraced any new strategies that we were working on, even when she might of thought it was "stupid" she has never said anything negative about my parenting skills, maybe she thought it but never said it.  I just wanted to publicly thank her for her support, understanding, patience, financial support ans most of all for loving me like I was her own!!  Without her none of what I do would be possible.  Thank you Meme & I Love You!!

His Cognitive Development

I am truly amazed at Noah's progression of his cognitive development, we are withdrawing from the medicine form the clinical trial right now.  We were outside playing the other day and two of our dogs CP & Astro were playing, they are really rambunctious dogs, Noah looked at me and said CP & Astro are brothers right??  and they are Comet our other dog is their "mom".  Then a couple of days later he heard the name Paul on TV and he said your brothers name is Paul.  Now we do not see my sister or brother often at all, they live in North Carolina, Noah has not seen them in several years.

Things have just started to "click" in that fascinating brain of his, its time like this when I have SO much hope, we just have to keep on working everyday to continue this awesome progress!!!

Tuesday, March 6, 2012

My butt made a noise...

OK are you ready for gross boys stuff, Noah can burp excuse me or his name, that is one of his many talents.  However he has never made a big deal out of you know farting.  Until today, things were quiet (weird) and he tooted and said, "My butt made a noise.  What was that?"  Hey Mom, "my butt made a noise did you hear that?"  I almost DIED laughing I know I shouldn't have but it was TOO FUNNY!!!!

Friday, March 2, 2012

Autism yesterday and today: Crutches

Autism yesterday and today: Crutches: So I've came to the realization that I have been using Autism as a crutch. I've been using it as my soft place to land when I feel like my ...

Thursday, March 1, 2012

Check Out Our 52 Seconds of Video...

OK this is a hoot I took the kids to the zoo and NOAH (I say that b/c I am yelling, can't yell at him so I will yell writing about him) drove me CRAZY!!  I want to go back to Vanderbilt, WE NEED THAT MEDICINE AHHHHHHH!!  Anyway they had one of those photo booths you know $5 and get the strip of pictures COOL RIGHT!  wrong!! Noah went in an refused to come out until he had a picture made PERIOD end of discussion.  I did all the "mom" things, I tried being really sweet which usually works, not today; then I tried bribery, with candy NO LUCK; so I tried to be stern.  Needless to say we are the proud owner of new photo booth pictures of me & the kids. I feel like I got a bargain, we got 2 picture strips and you can view the video "behind the scenes" of our pictures it's really cool.  Here's the link, Savannah tried to tell me it was a video too, but I wasn't listening!! Imagine that!  Wonder how many times I tell Noah to "look here" in 52 seconds??LOL
Video of Savannah, Noah & Mom a Zoo

Picture strip of us at zoo!!!