Thursday, April 4, 2013

Parents are the Best Resources

Having been in the autism world for over 6 years now, I'd have to say, hands down that other parents are your best resource for information about your child's autism. 

Of course, still go through the Pediatrician but follow your gut if they say, 'wait' or 'give it time' or 'boys are slower to talk than girls'.  Our pediatrician didn't catch it.  We went through our county for an evaluation.  One day, I received a message from my son's new teacher who told me he qualified for 4, 1/2 days of school....he was 3.  Even then, the word 'autism' was never spoken.  He was speech and developmentally delayed.  He started school and I started parent support meetings.  At the second meeting I questioned developmentally delayed and a mom turned around in her chair, looked at me square in the eye and said, "Your boy has autism.  They can't tell you he does because they would be responsible for all expenses if you didn't have insurance.  Get yourself a Developmental Pediatrician right away."  I went home in tears.  He had autism but no one used the word AUTISM and what was a Developmental Pediatrician???

I found our local Developmental Pediatrician and was put on an 18 month waiting list.  Unbelievable to me.  I couldn't apply for medical assistance without an official diagnosis so I was waiting.  Talking with another mom she told me how to get around the 18 month waiting list.  Ready?  I'll share it with you.  When you get the extensive questionnaire to complete for the Developmental Pediatrician, also send back a copy of any sort of evaluation you had ever gotten on your child.  This way, you don't need a 'team meeting' with the Doctor, only a one on one.  I copied the school's evaluation and when he was 2, he received speech through a speech therapist and guess what......we were seen by that same Developmental Pediatrician in UNDER 2 WEEKS.  Got that?  18 month wait reduced to under 2 weeks. 

I then began to search online and found myself on facebook...imagine that.  Anyway, I found that many adults on the spectrum have their own pages.  I now follow many of them and if I get stuck, I just ask them.  They give me a different way to look at son's way.  I am very thankful for that.

In short, I can list a bunch of websites or Doctor's names but save yourself time and talk with other parents.  Others that have been there...done that.  Get involved in a support group through your child's school or local autism agency.  They can direct you where to go and how to get their experience anyway. 

Wednesday, April 3, 2013

Follow Them

Created by "Mommy Buddy" from the planet Autism
 "Those affected by Autism seem to be isolated in their own world.  Follow them.  It's worth it."

Tuesday, April 2, 2013

Autism-More Than a Definition

The definition of Autism from Wikipedia: 

Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. The diagnostic criteria require that symptoms become apparent before a child is three years old.[2] Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.[3] It is one of three recognized disorders in the autism spectrum (ASDs), the other two being Asperger syndrome, which lacks delays in cognitive development and language, and pervasive developmental disorder, not otherwise specified (commonly abbreviated as PDD-NOS), which is diagnosed when the full set of criteria for autism or Asperger syndrome are not met.[4

What I saw was a little boy who used to smile and laugh and make eye contact but somewhere along the line, that stopped.  Exhausted all the time after having a newborn I couldn't think straight.  My son would be up all night long while the baby slept; it was a vicious cycle.  There are even times when my husband I will talk and I can't even recall chunks of time or an event.  We used to fight.  We never left the house.  We were in a constant fog.  The definition was great but who had the time to read? 

We eventually went for help, which wasn't easy.  Here is Our Path to a Diagnosis.

We have come a long way from that time.  Constantly pushing forward and not looking back, progress has been made by everyone.  Here is a blog about Our Therapies.  Past-Present-Future. 

My son is very sensory so the beach is his favorite place to go.  This is a simple blog I put together using his words, Desperately Holding On.

Life is full of changes. You need to change in order to grow.  After struggling for many years he has learned how to read.  This night brought me to tears.  In His Own Time

By reading the above blogs, you will have learned more about our personal journey with autism but more importantly, autism is much more than a definition it's our way of life.   

His favorite thing to do....
sit back and watch Lucky Penny Shop
on the iPad.

Monday, April 1, 2013

Why I Write About Autism

Since my son was diagnosed with autism when he was 4, my family has participated each year in the Walk Now for Autism Speaks.  Our team name is Grape Jelly on Pizza.  I decided to take it to social media and created a facebook page primarily to do some fundraising so I gave the page the same name as our walk group.  Why Grape Jelly on Pizza?  One night my son went into the refrigerator, took out the grape jelly and smeared it all over his pizza.  Wondering what he'd do next..he ate it and LIKED it!  Children with autism usually aren't good eaters but my son loves food.

While running the FB page, I found out that many other parents felt and thought how I did....the best information about ASD (Autism Spectrum Disorder) comes from other parents.  So, like everything else in life, evolution took place.  The page is now an on-line support group with over 3,100 readers.  I am no longer interested in using it for fundraising but for sharing experiences with our ASD kiddos. 

Last year I decided to blog.  Now, I'm not a writer;  I'm a mom.  I don't have a degree in writing, if I didn't have out and punctuation can get out of control.  Some days I have lots to say, other times I can't find the words.  BUT I keep trying.  Last year I entered the WEGO Health Activist Writer's Month Challenge and failed because time got away from me.  I'm back for another go.  It's a personal challenge for me.  The daily prompts make me think outside the box and lets face it, that is what we do for our kids all the time. 

On the FB page and blog, I do share information about my son but also want to hear from all of the readers.  We get to know each other and become friends.  Guest Bloggers are also welcome.  Some days can get out of control and you need to keep a positive outlook to keep going, my thoughts anyway. 

I strongly believe that by sharing your ASD child's progress, you are giving others hope.