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Katlynn~ March 5, 2011

Katlynn~ March 5, 2011
I might be bias... but she is beautiful!!

Tuesday, June 15, 2010

Everyone has a little inner autism, right?

Everyone Has Autism

By William Stillman

Ever awaken in the middle of the night and realize your arm is “asleep” from the elbow down? It is a common situation experienced by nearly everyone at one time or another. As much as your brain is willing that arm to budge, it is deadened to the signals or impulses your brain is sending it. How many of you have actually had to physically move the asleep arm with your other hand in order to free up circulation and regain its use? If that same nightime paralysis were in more than one limb, or lodged in your voicebox, you would outwardly behave in ways that were autistic, just like any of autism’s “cousins” such as Asperger’s Syndrome, dyslexia, Tourette’s, Parkinson’s, Alzheimer’s, Cerebral Palsy, Lou Gehrig’s, ADD, ADHD, OCD, Sensory Integration Disorder, and a realm of other human experiences on a neurological continuum.

I’ve heard people refer to autistic children as “mutants” or functioning on par with a dog! This is hard to fathom when we consider that we are all more alike than we are different, and we all are truly brothers of one another. It is this kind of fear that the multi-billion dollar autism industry is founded upon—hastily, intensively, erasing all traces of autism in favor of normalcy. But in my work as an autism consultant, 90 percent of what I endeavor has absolutely nothing to do with the autistic one; it has everything to do with creating a transformation in everyone around that individual!

Noteworthy about those who would suggest that anything less than their perception of normal is unworthy, is that they fail to recognize a truth: at the present rate of autism statistics (one in 150 children and counting), it is they who will soon be the minority if they’re not first rendered “disabled” by virtue of genetics, deteriorating health, poor lifestyle choices and the aging process. They would surely wish for others to continue presuming their intellect regardless of the physical transformation their bodies will endure (which may cause them outwardly to present in an autistic-like manner).

The curious thing is we all have autism to one degree or another! We’ve all experienced neurological crossed-wires that result in motor-control blips, misfires and disconnects. You experienced an “autism” if you’ve:

driven from Point A to Point B, but upon arriving at Point B you have no recollection of the drive.

begun driving from Point A with Point B as your final destination, but today you need to make a special stop to pick up something or someone—and you end up driving your regular route, having forgotten to make the detour.

been driving along, and hear a song you like with the intention of listening all the way through, but soon realize your mind has wandered and you haven’t heard a word of it.

been driving along and hear a song you haven’t heard since high school—and experiencing the song immediately conjures memories of that era in your life. We create a strong associative connection in the same way with scents and smells we link in memory to certain people and places (a food aroma, cologne or perfume, or tobacco), as well as life-defining events such as an accident, a birth or death, or a disaster of some sort (you could probably relate details about where you were and what you were doing on September 11, 2001).

happened upon someone familiar while out shopping, but seeing them out of the context in which you know them disables you from recollecting their name on the spot and in the moment (although it may come to you after you’ve had sufficient process time).

had to physically retrace your steps in order to remember something, or you’ve misplaced something you suddenly realize you’ve been holding the whole time you’ve been searching for it (a pair of scissors or your eyeglasses).

lost track of time or self-awareness (no need to eat or use the bathroom) while immersed in an activity for which you hold great passion (painting, jogging, dancing, gardening, etc.).

had a case of the giggles so severe that you could not regain your composure until the experience ran its course.

ever been so angry, or afraid, and words escaped you in the moment.

absolutely had to scratch an itch and could not focus on anything else until you were so relieved.

calmed your anxiety by biting your nails, tapping a pen, shaking your leg, rocking yourself, twirling strands of your hair or toying with a piece of jewelry, or talking or humming to yourself.

experienced uncontrollable shivers so intensely that your teeth chattered involuntarily.

struggled to decipher the meaning of certain words in the appropriate context, such as “she shed a tear over the tear in her new dress.”

organized your items in your kitchen cupboards, bathroom, work space, or clothes closet in alphabetical order (canned good with labels facing out), by color-coordination, or at right angles.

come in from frigid weather and your hands are so numb with cold, you could not use them to hold an eating utensil, write longhand, or unbutton your coat.

had a song in your head that absolutely will not go away! It may be The Star-Spangled Banner, a commercial jingle, or a Barry Manilow tune. You may have even been awakened in the middle of the night hearing the song you cannot seem to banish. Imagine if that experience of being “stuck” with the song in your head (which precludes your thought processes) transferred throughout your body, or stuck in your throat and hindered your vocalizations?

These common experiences—“brain fades” or instances in which our body vetoes brain signals—affect us all, making us kindred in our humanity. But if you did them with any degree of regularity, you’d be eligible for an autism diagnosis! The next time someone suggests an autistic person’s hand-flapping or finger-flickering is maladaptive, gently remind them that they do it too, only it looks like the times they sit and shake a leg!

As much as we are all on a learning curve about autism (including some “experts” in the medical community), we are also all on a curve of diversity in our collective human experience. This begs the question: is there really any such thing as “normal?” Just maybe autism isn’t really as autistic as it seems.

© 2008, William Stillman

William Stillman is speaker, consultant, self-advocate and author of numerous autism and special needs parenting books. His Website is http://www.williamstillman.com./

Monday, June 14, 2010

Train for autism- Please consider supporting this cause!!!

Please consider supporting a great cause.  You can do so by donating or signing up for the run and join us on Feb. 6th, 2011, for the Surf City USA Half Marathon.

Here are the links to our pages:

Summer
Dave
TACA team page (sign up here to join us for the run or make a general donation to the team as a whole)

This a very important cause to us as TACA has been a huge support system for our family.

Success!!!!

WE DID IT!!!!!!

We got through Katlynn’s IEP with success. She will be in a 3 hour inclusion classroom with 10 students, 1 teacher and 2 aides. It’s been a hectic and stressful 2 months, but today finally paid off.

We are very excited for her as she starts this new journey of preschool effective August 9th along her sister, Audrie.

I'd like to thank everyone who helped out offering advice and support through this.  As petty as it might seem, it was a very emotional and enduring process and without everyone else, I think I might have had a break down.  So thank you so much Kara, Cindy, Edyth and everyone else who gave me advice for this matter.

This is only a small step in a life long fight, but at least it's in the right direction.

Friday, June 11, 2010

Roller Coaster Ride

As much heartache and stress as Katlynn’s special needs have brought to my life, it has been one up’d by my love for being her mother. Is it possible to love a child more and more each day through the good bad and the ugly? Even on her worst days I am so happy she is my daughter.

When things get harry and I feel like a volcano about to erupt I think about the joy and fun my kids have brought me on a daily basis. When I am in tears over Katlynn’s denials for a service of one sort of another, I think about how far she has come and I attribute most of it to me, her father and her siblings.

Day in and day out I could think about the “what if’s” and how my life would be different if Katlynn wasn’t autistic, but like I have said before, she is and there is no changing that. She will always be autistic and I am going to cherish the present, not dwell on the past and not picture the future.

I have learned so much in the past year and I didn’t realize how important a role as a mother really is or how many hats a mother wears in order to provide and protect her family.

It’s a roller coaster, but one I am willing to ride over and over.

Thursday, June 10, 2010

Book review

I was recently given the opportunity to review a book by author Lisa Jo Rudy called: Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities.


 She talked about not sheltering our kids from the world just because they are autistic. The book covers various activities that kids with autism can be involved in which are available in the community. These include but are not limited to: scouts, various sports, camps, special interest groups, and YMCA. This book exposes parents to children on the spectrum of a variety of different community opportunities. There is a section which tells about various sports, groups and camps and how they are suitable for different types of kids. There is also a part that tells about various practical difficulties with kids who have autism like eating out and religious activities and how they can be done better. There is a resource section which gives more information about other materials. I think it is a great resource for families who feel as though they are stuck at home and that the community is not going to accept autism and everything that comes with it. This books goes to show there are a would of opportunities for kids on the spectrum to thrive in very typical settings and community outings.

We have never been a family who has let Katlynn’s autism get the best of us. From her birth and since her diagnosis, we have always been a get up and go family. In fact, I think because we are like that, Katlynn has adjusted to the flexible routine we have and behaves quite well with few tantrums and issues when out and about. Of course I always take into consideration mealtimes and nap times, but even if those are not on schedule, she seems to adjust to changes pretty well.

So, I figured I would seek out another opportunity to get the family out in the community for a morning of fun.

A friend told us about a bowling day called Bowlopolis where the kids can bowl for 2 hours and get free lanes, shoes rentals, pizza, drinks and ice cream. We decided to try it with the kids and who know bowling could be so much fun. The kids had a blast. In fact, I think Katlynn had the most fun of all. She really enjoyed following direction and playing the game. It was totally worth it. In fact, signed the twins up for a league for toddlers.

Friday, June 4, 2010

Hitting a brick road... HELP ME!

So.... back to the drama with Katlynn and services. Well IRC dumped her speech and denied my request for it again. So back to appeals I may have to go depending on what happens with her IEP June 14th. Can we seriously get a break here? Seriously? So, I am on a mission to find someone to do speech with her over the Summer and just private pay since we have no other choice.

I am also toying with the GFCF idea again. She seems to be at sort of a stand still right now with progression, so I need to do something else. Any ideas?   I prefer not to do medications or shots.  Just a personal preference for me.  That's something I might consider later on if need be for her, but right now it is not cost effective for my family.

Anyhow, I plan on working with her a lot this Summer and really fine tuning some of her behaviors by using a preschool setting and also working more on the potty training.