Its a Matter of Perspective!

Last week I was speaking with a friend who has a {typical}son about the same age as Dakota. He is a very good kid who has not given her any real trouble -- which is amazing in these times we live in. He is a quiet unassuming kid who graduated high school and took some college and is now working in a decent job. She and her husband are stellar parents. They have set a great example for him and given him all the love and support he could ever need or want---Well last week it comes out that their son has a child on the way --- OK its not the end of the world BUT mom is deastated cuz she felt that some how she failed her son ---that he did not use the knowledge he was given and now has a baby to support that he is not ready for-- For Mom she feels like she is being robbed of  some memories that are suppose to come BEFORE A BABY.-- OK OK again in these times it is even RARE that a wedding  shower comes before a baby shower  but that is the way it supposed to be---and of course Mom is sad cuz she cannot sheild her son from some of the harsh realities of this world-- Need;ess to say this is where my rather out there philoisphy comes about OUR KIDS AND AUTISM...\
Typical parents with typical kids go through so much {just like we do --BUT diffewrent} boyfriends and girlfriends and bad realtionships and break up -- getting in trouble with the law -- drugs-- car accidents --rotten grades,etc. Many would say all things that some have to deal with BUT I think there is always something that happens and very rarely is there even a typical family that doesnt have "some warts or faux pas" to deal with. AND many would say "thats just Life" -- They are right! We never know what is going to be thrown at us; we just need to be resilent and relentless.    

Where my "perspective" comes in is here--- Every waking moment, those of us who have kids with Autism, wonder when its going to stop or at least slow down-- we hurt and ache for our kids to just be typical or to have a typical moment. We muddle through all the differences and always want to change or sheild our kids from being anything but 'NORMAL" Then I hear something like the story above and and I think  WELL I have a kid who is a young adult and he still loves his Mom and wants to be around her; He hasnt gone out and gotten drunk and ended up in Jail; he hasnt wrecked a car or broke  curfew: he hasnt stolen money from my purse; he doesnt walk around with his pants around his knees AND he hasnt brought a girl home pregnant!  
SO JUST HOW DAMN BAD IS AUTISM?

Please dont mis understand every day is a challenge but the bigger message is we have to find the silver lining ; we have to make the best they we can for our kids we have to keep positive in the equasion. We have to realize that these kids know what we teach them  and the dont need any more negatives in their lives.
The old saying when God gives you lemons you can make leonmade-- Its up to us to add the sugar! 

Wow Viewing Stats

I just wanted to take a few minutes and post about the Stats of this BLOG-- When I set out to do this  my intent was to vent but also share what we go through as a family unit Living with Autism. The 'GREAT HOPE"  was if I could help one other person feel better or solve an issue or even just let them know they are not alone I would accomplish my goal.

I started in 2005 and although I have had a struggle with posting more than 4 to 5 or 6 posts a month I have always been happy what I wrote about because ti was the issue of the hour day or week. Often times I go to bed and the words swirl around in my head as I try to compose what I want to post and by the time I get to the computer it has all changed. Finding time to post has always been an issue as well since I am the main caretaker of the home -- So many times you will find my posts  time stamped at 3 or 4 AM -- thats the quiet time and time I get to think and compose.

Never the less I just started watching the tracking and I have to say that I impressed myself -- the blog has been viewed over 3200 times! While that may not  be thought of as voluminous over the course of years I have written yet I am elated that with no promotion or affiliation it is at least getting to people who may get something from ,my experience!

The more exciting new is that I have been viewed on 6 of the 7 continents in our world and that makes me so so so incredibly proud. The STATS  revealed  that Germany, France, Spain,United Kingdom, Czech Republic, Slovenia, Netherlands, Morroco,Israel, Brazil, Korea, China, India, Malaysia,Australia have all accessed my blog---WOW 

My hope is that my words have helped each and everyone of the people who have viewed my blog. THANK YOU TO EVERYONE AND I HOPE THAT some how, some way you will pass it on to others who might use this as another tool in their family situation. I AM SO PROUD  but more important I will continue to write with the expressed commitment to do whatever I can to help anyone BY my experience-- I don't pretend to have answers I just know what works for us and somehow I hope you will be able to take the info and make it work in your situation... Please feel free to comment or write -I would love to hear from you!
AGAIN THANK YOU!

APRIL IS AUTISM AWARENESS MONTH!

The CDC just announced that autism rates are growing by leaps and bounds NOW 1 in every 88 births another child is born with Autism-- It is an epidemic  these children are a huge piece of our communities and we have to help people understand and INCLUDE them.
PLEASE everyone change your porch lights to BLUE for the month of April to bring awareness and let others know that you or someone you know stuggles with the damn disorder!     

They Have their ways of Telling You!

You would think after the better part of 25 years I would be able to size up any situation with Dakota--The caregivers and Parents of these kids all have unique situations but after awhile its almost like having a baby that cannot tell you if something is wrong or if they need care and/or attention. For the most part those of us inside the "Autism Community" do have one thing in common that is the opinion that anyone on the ":outside " needs to walk a mile in my Moccasins before they can say they know what to do or how to handle something----That may sound rude or egotistical -- It has nothing to do with that; it is such a unique experience that it is almost indescribable. You find yourself in situations you could never imagine in your most creative mindset! And after you have been at it a while you become maybe even a bit "cocky" about what you think you know or how to handle most ANY situation!
HA!
What I can say is that these kids do have their ways of telling you  BUT more than sometimes you miss the Que!Even with the challenge of kids like these you can become complacent-- I prefer to say that you get into a groove and get used to a "Staus Quo" and miss it -- what they are trying to tell you and when you finally realize that you MISSED IT  man, you feel stupid first and then inadequate. you think to yourself -- How the Hell did I miss that? or Why didn't I notice ?

There are several examples but I will pare it down to a few just to give you something to ruminate on----
The specific incidence that caused me to post was just last week--- Dakota had come home from a regular outing and he is usually very satisfied IT IS VERY RARE to see behavior during this time  but it happened so I chocked it off to just a bad day and went on --The next day again a routine situation things are usually smooth and another little pissing match-- I chocked it off to autism and went on with the day-- I kept asking whats different what has changed why is he irritated  I could not come up with an answer. Later on that evening I notice hes putting his finger in his mouth - so I take a look and there it is  a canker sore on his gum--- I know it seems minor and how can that equate behavior BUT that's what I getting at -- THESE KIDS HAVE A WAY OF TELLING YOU! sometimes its just not the traditional way.
Many have asked me if I think something that minor could dictate behavior and I believe the answer is YES -- I think that when they act up in a classroom perhaps a new classroom -- somethings going on--- Don't know what it is and it may be different for each kid BUT I believe theres an answer somewhere . I believe the same for something like Dakota had going on with the sore in his mouth-- the behavior was the only way to get my attention Finally it worked---

Its almost like being a psychic or a "dog whisperer" you have to be in time with so much than the normal . It doesn't make us better or more proficient as parents and caregivers it just becomes a part of our job description on order to be effective with our children. they have a way to tell us we just need to learn how to decypher it!   

On a Positive Note

Sometimes when you post on a blog and especially when you talk about living with something like Autism {which it is NOT exclusive to that diagnosis}it is difficult to find positive things to write about---
Its always about the strife of dealing with either an agency or and individual or the "system" much less the demons that your child fights every day!

But today and for the past few weeks I have had a few moments where I felt good, saw progress and can even say was hopeful.

Specifically with Autism you hear over and over about early intervention and how important it is to get these kids started because with Autism there is a huge amount of "fodder" about them loosing skills or never attaining skills if you don't hit them hard early on. Also the other lament you hear quite frequently is that from puberty on there has been lots of documentation about our kids loosing or reversing much of their progress. So as those young adult years approach I think most of us watch with a keen eye to identify any losses and do whatever we can to halt it--

I can honestly say that pretty much every night I pray for miracles --If not miracles then even baby steps that continue to show improvement and/or growth. So far; knock on wood Dakota has continued to grow and improve on many levels--Look its no miracle but its improvement--AND it does render peace in my heart to know he is continuing to work his brain and learn things that others take for granted.

 To highlight the most recent "baby steps"
He used the word  MONOTONOUS correctly in a sentence----

He was watching a news feed where a lady was standing in front of a school reporting a story and a partial view of the school mascot was on the wall behind her and he said "look Mom there's a Jaguar"
He picked up on the word Philanthropy and he started to pronounce it a couple of times and then said "whats philanthropy?" I about fell out of my chair-- so I spelled  and I gave him a rough definition and he listened intently and acknowledged me--

now whether he has any use for any of these things I don't know BUT  the simple fact that he continues to pull these things out of his head tells me he is still growing and learning and that gives me HOPE!

You Can't Put a Cast on His Head!

I think the title says it all--- over the course of this journey thoughts fill my head probably on an hourly basis-- getting to the computer and posting them is another battle in and of itself. This is one of those thoughts I have  had probably a hundred times; just never got the time to write about it.

Years ago, Dakota broke his leg and we struggled with all the ramifications about it including it happening at school and he didn't want to go back , the fear that he would break his other leg , the scars from the surgery,the ambulance and hospital  etc. etc. Ultimatley the end result was that his leg would mend and he would be 'ALMOST" AS GOOD AS NEW. That being said the end result was less than perfect but it served the purpose a leg was designed to do on the human body.

The leg was pretty much a mess; a compound fracture which required surgery and rods and pins and a CAST. When a person who has a cast on goes out in public it evokes mostly positive empathetic / compassionate responses--people see it and they respond by either sharing their own experience or with well wishes for their temporary disability -----------
When a person walks out in public with an intellectual or developmental disability----It is a different story--the looks, the jeers, the judgement the lack of acceptance.
Personally I don't get the difference but its probably  because I live in a world where Autism is present every minute of every day. I see it being no different than a broken leg in one way--neither malady was intended.

When some one suffers a mental disorder most the world has a hard time accepting it; treating it the same way as a broken leg-- Look I CANNOT PUT A CAST ON HIS HEAD! Mental,Intellectual or Developmental disabilities are viewed as taboo. People are scared of them and in many cultures it is an embarrassment or often considered a curse--Those people who suffer with those types of disorders are kept behind closed doors, institutionalized or worse even abandoned or killed.
We cannot ask a doctor to drill into the brain and fix it--true it is an area we don't how to handle or what to do. Fhere has been 100's of years of study about mental disorders but it remains in my opinion the most difficult to diagnose and certainly the one most illusive to fix or even repair. Short of therapy {for those who can participate} and DRUGS  we cannot go in an transplant a brain , we cant remove the affected area {like slicing off a part of a liver and letting it regenerate } and most of all we CANNOT PUT A CAST ON THE "broken part of the brain".

It will be light years and most certainly long after Dak and I  have left this existence before there will be any solutions to things I have written about; I can only hope that my continued griping about awareness and acceptance will filter thru to at least a few. To plant the seed that Autism and many other mental disorders are not the fault of the person and that they are like any other human living on this earth.  All they want is to be loved and accepted as a part of the patchwork in any Family and/or community.  

Stop and think before you make a judgement -- remember you have your own "warts" and maybe the person you are making an opinion on, needs a CAST OF THEIR HEAD!