Autism ~ You Are Not Always So Good To Us .....

Hey everyone ... or hey no one ... not sure how many follow my silly little blog. 

I am in a crazy erratic terrible mood .... been a rough day ... but I just wanted to sit down and get something out.

For those that doubt that autism is a real and viable disorder, then maybe we should change lives for a few days and let you live in mine and watch your child go through situations that neither he nor you can control or fix or make better for him.  After dropping Sierra off for a school dance, Connor launched into his crying don't let her go fit in the car, as did Riley, except Connor's fit has lasted until just now ~ let's see ... that would be near 1 1/2 hours.  Riley stopped crying after watching her sister walk into the building, Connor ~ not so much.

I headed to Walgreens for Boudreaux Butt Paste .. lol ... still makes me laugh .... and a heating pad.  What else goes better together?  The tantrum had stopped for a few moments from leaving Sierra as we got from the car into the shopping cart.  Upon entering the automatic doors at Walgreens it started all over again, only this time much much worse.  As I hastily headed through the store I have a lightbulb parent moment .. the toy aisle ... let's get a toy ... that always works.  Maybe sometimes, but oh dear autism, not today.  I don't know if researchers are right ... is it sensory overload, is it flourescent lights?  What is it that makes my son go into a raving crying fit with hands over his ears and eyes closed and clinging onto the cart for dear life in what should be a perfectly normal situation?  What is it?  Please, someone tell me ... my sanity as well as my heart needs to know.  Even with a super cool fire truck and nifty little Mickey Christmas glass the fit continued and at that point I gave up.  I threw stuff in the cart, shot very ugly eyes at two gentlemen who couldn't keep their eyes off of our apparent freak show (seriously, I doubt these two less than desirable men could work hard enough to keep a pet rock alive, but who am I to say?), and headed for the checkout.  At the point of checkout, Connor is clinging to my skin for dear life ... I mean ... no kidding ... I am surprised his little nails didn't draw blood.   We run through the checkout, the clerk gives back the firetruck to the crying for his life child that has to remove his hands from his ears to brace the truck against himself and the cart.  You see, he wasn't even holding the truck ... just trying to hold it close and holding his hands over his ears as he had done upon our arrival at Glorious oh Glorious Walgreens.

We get in the car and the crying continues, this time with eyes covered ..... what do I do?  If your answer is to spank him or physically punish him, then please do me a favor, don't finish reading this post or any other post I ever choose to put on here.  The title, thanks to Stan, of Truality really applies here.  This is my life .. not sugar coated or paint by numbers.  I don't know why I feel the need to explain behavior exhibited by my son to verify for others that he truly does have autism.  I guess I hear so much that he is just being a kid .... these fits, ears covering, eyes covered, clinging to my skin for his life ... these fits, tantrums, whatever you choose to call them, are not just being a kid. 

As I have typed this post, I am thinking in my head about true support and I think that only comes when someone loves you and trusts you enough to let go and trust you as a parent.  To trust the developmental pediatricians and psychologists and speech therapists and occupational therapists who are good at doing their jobs and making a final decision on whether or not they diagnose a child with Autism or Asperger's or PDD or nothing.  I love Connor more than my life, as I do all my children, but this place in me is coming to a part where I am so emotionally drained with having to explain that it isn't bad behavior ~ it is a condition and we are working with others to do the best we can for our son.  Hear me when I type this ... our son .... we all want the best for our kids ... why would anyone try to blame something on what it isn't when it comes to times like this?  I am not playing an autism card ... that "card" was put in Connor's deck and as his mother I am doing my best to help him make the right move with what God chose to deal my little boy.

My son has autism ..... I know that, his father knows that, his sisters know that and most family members know as well.  If you don't know, then please love us & Connor enough to take the time to learn about it and begin to know it as well.  We call an apple an apple ~ it is time for us to call autism exactly what it is ... autism.

Much love everyone,

Kelli

Does Dr. Temple Grandin Think Pretty Is, Is Pretty Does?

So, I remember hearing the phrase "Pretty Is, Is Pretty Does" about 4 million times ~ even every now and then I hear it these days or find myself passing it onto my daughters.  My mother, my Grandma Rosie, and even Mom Walker all carried these words of wisdom and they have been passed down through generation to generation, and I suspect, will contine on down the line.  Here's my issue ... the last few weeks I haven't felt like acting very "pretty" and I am having a hard time wrestling in my heart and mind over those five little words.

Connor's midday busdriver has been less than pleasant since the first day she brought him home, and that is putting it mildly.  I won't type out all the issues because even I am tired of them running through my head, but, just trust me when I say she has not been the least bit nice to deal with.  We have had lost backpacks (which is pretty tramatic for a child with autism), open bus doors that he runs out of and I am lucky he runs to our fence and not the car coming in the opposite direction, and most recently, a slide down the stairs of the bus before I could grab him as his feet hit the cement.  I have called everyone I know to call, yet the behavior on her part continues and I hit this point where I just feel at a loss as what to do.  Chad says let it go .... my heart says no ... he is our son and whether he has autism or not, no 3 year old can advocate for themselves.  After speaking with the Special Education Director for our district today I felt better ... I told her I wanted to send letters voicing my concerns and carbon copy them to the Transportation Dept, the Special Education Dept, The District Autism Director, Stonehouse Learning Center (his prek program) and finally, the school board.  I just don't get it ... why is it ok for one person to continually exhibit bad behavior and poor judgement at her job, when if anyone else did the same thing, most certainly we would be explaining or fixing our faults if they had not already caused us to be terminated from our employment.  I told the director that my husband says to let it go, don't cause anymore problems for Connor .... she paused for a moment and said that I wasn't creating a problem, only trying to finally find a way to fix the problems that have continued since August.  I guess I say this because sometimes I just get tired of trying to be "pretty".  I hear what everyone tells me to do, but I think that my heart is beginning to realize that sometimes being pretty means listening to your head and heart all at once and deciding what is best for you to do.  Momma knows best ... sometimes and sometimes not.  But guess what ... it's all a learning process and I guess that trying to be pretty is always a work in progress.





On a different note, I am stoked about going to hear a presentation by Dr. Temple Grandin tomorrow evening at Kansas State.  Dr. Grandin is autistic and didn't speak until the age of 3, was told by her parents to be institutionalized, and by her mother refusing to listen and go with the norm, she raised a daughter that has taught the world so much about autism and livestock development that she is world renowned.  What a loss had they listened to what they were told .... I guess her mom wasn't being pretty when she decided to go against the advice of medical professionals and family and act in what her heart told her was best for her little girl.  As I type this, I think I realize that Pretty is, Is Pretty Does means so many different things in so many individual situations.

I think that I will continue to hang onto the phrase and keep it tucked away, as I surely will continue to tell my children that Pretty Is, Is Pretty Does in the future.  I guess it will be up to each of them to decide what that means, but for me, I think my meaning is a little deeper than I ever would have thought when I first heard those five little words.

Not much more to say for tonight ... could go on, but we all have our 2 cents and like my mother-in-law always says .... With that and a few dollars (these days of course) that might get you a cup of coffee.  Notice the word might .... a few dollars and 2 cents probably doesn't include a latte or mocha, but maybe sometimes a cup of strong black coffee is all that we really need.

Have a good week, y'all :) !  

You are my SunShine

Not much to say today, but heard this song this morning and haven't been able to get it out of my head. 

Have a great Tuesday, y'all!

Tricks, Treats & Real Life ~ What To Do????

So, the weekend of birthdays, costumes, & candy is over.  I have to say that Halloween this year was different ~ Sierra went on her own with a friend & the twins were both excited and actually said Trick or Treat without being prompted by Chad and I.  Riley has some sinus stuff going on, so, I think that people thought she was probably giving the gift that keeps on giving, as she coughed and sneezed at their door.  The coughing and sneezing was probably in their candy bowl which they promptly sprayed down with Lysol after we left.  Funny thing ~ after she got indoors in the warm air the coughing and sneezing stopped.  Good for her, but good for us, because I am just not ready for fall/winter colds yet.  I know they are coming ~ just want a few more weeks before we stock up on Benadryl, Sudafed, Robitussin, Motrin & various other goodies for our medicine basket.

I have so much I want to put into this blog, but I think I will keep some of my opinions to myself, because you know what people say about opinions.  In another part of my mind, I keep thinking if I can't share on my own blog then why have it in the first place.

I find it amazing that people who don't live in your shoes are quick to judge your life and the way that you handle it.  I mean, really, we all do the best we can in our situations and last time I checked, negative criticism is not something anyone wants to hear.  As much as I would like to say that my life is a bowl of cherries, it isn't.  Chad and I are parents to three children ~ a 14 year old and 3 year old twins, including one with autism.  Sometimes times are tough, but it doesn't mean that we don't love each other or our families or even our lives.  They say God never gives us more than we can handle, and I believe that, but sometimes hanging on for the ride he sets before us gets difficult.  Our love keeps our family together and that is good for me.  We find time for each other somehow in all the craziness ~ and sometimes joking and kidding is all that helps us get through.  It might not work for everyone, but it works for us, and that is ok with me.  Over the last five years we have worked out a way to make our lives together all we wanted ~ kids might change that, but in all honesty, they really only make it better.

Connor's therapy at school is going well.  At times we are still dealing with fits and frusturation from him, but mainly because his language is not up to where it should be and he doesn't know how to express to us what he wants.  In the grocery store the other night, it was only Connor and I, and a woman asked me what was wrong with him.  Although my first reaction was to be defensive and spout something rude, I held onto my tongue and politely explained that he was autistic.  As I walked away from her and pushed my shopping cart with Connor "driving" the car at the bottom, my heart hit a snag and I had to really fight to keep the tears back.  I know that he is going to face adversity and difficulties, but as a parent, I realize that as he gets older I can't shelter him forever.  When others say that I will have to learn to deal with that, it makes my heart break a little bit more, because they just don't understand the fight we are and will continue to be in the midst of.  I love my children more than I could ever express ~ and just the thought of him facing that sort of rude questioning pulls at me, even as I am typing this.  Yes, you pull yourself up by your boot straps, but that doesn't mean that in all that pulling there isn't pain in getting the straps all the way up.

As the twins were trick or treating, Chad and I giggled as Connor walked away from Riley and she fussed and told him to come hold her hand.  I told Chat that maybe that will be a positive in the future ~ usually the brother defends and takes care of his sister, but this time, maybe Riley will do for Connor what we can't always be there to do.  Life is funny, but I love mine, and I don't think I would change a single thing.  Adversity makes us stronger and if I hadn't gone through many of the situations I have faced, I just don't think I could look at life with my eyes wide open.  Our time on this earth is too short to view things with racism or ignorance or non acceptance ~ being loving and embracing all that we can learn about is all I ever want to do and hopefully, by example from Chad and myself, we can teach our children to do the same.

Have a great week, y'all ~ Remember to hug your babies ~ they seem to grow up way too fast and one day they will be way too old to trick or treat with Mom & Dad and you wonder as they walk out the door where in the world all the time has gone.