April Is Autism Awareness Month

 

Today starts the beginning of April which means Autism Awareness Month has begun.  Tomorrow, April 2, 2013, is "Light It Up Blue" Day where homes, organizations, monuments, and places all over the world will go blue for one night to show their solidarity to support this condition that affects in 1 in 88 children (1 in 54 boys).  This hits home for me.  My son is autistic and it is a battle we fight daily.  We fight for everything for Connor, from bus priviliges on the "big bus" to speech pathology at school to paras to help him with transition and change to being integrated in a regular classroom.  This is something we struggle to battle now, so that life in the future for him will be much like life for you and me.

 

Never did I think we would be affected by this.  But then again, who does?  Autism is not a word we are afraid of and I wish that others, who may not be directly affected by the cause, but those with a honest and sincere heart to help the spread of what has become a worldwide epidemic, would put their foot forward to say "Hey, I am here to help".

 

To show you care, those participating in "Light It Up Blue" Month are shining a blue lightbulb on their porch to symbolize their support.  It is such a small effort with such a big saying.  Don't do it for me, don't do it for you .... do it for all the children, more severe and less severe, like Connor that have an uphill battle to fight to enjoy the things that we all sometimes take for granted.

 

Thanks for reading ~ my love to each of you,

 

Kelli

Maybe I Should Use Free Blogging Instead of Paying For Therapy ??

 

 

About to head out and pick the monsters up from school today.  Hoping Connor and Riley had a good day.  She informed him this morning he had to be good or Santa was watching him.  When he asked where, she said "I Don't Know ... Ask Mom."

 

Sierra has her Christmas Choral Concert tonight and an awesome and amazing friend of mine is watching the twins so I can attend.  Thanks so much, Michelle ~ you are the absolute best and one of the most amazing things Manhattan holds here for me.  Expecting 2 kindegarteners to stay quiet for an hour or so concert is difficult.  I am going to feed them before taking them to her, but I am sure they will beg for food like little Bassett Hounds before the time is over.  Nothing at home is ever as good as something to eat at someone else's home.

 

Finally finished our Christmas lights outside, complete with porch, fence, angel and feeding reindeer.  Supposed to snow here tomorrow or over tomorrow evening, so even though it should have happened weeks ago, it definitely had to happen now.  One of those nice cold hands, snot dripping on the ground from your nose Christmas lights experience.  The things we do for our babies.

 

Ending for now ... 2 blogs in a day.  I really need a friend, or two, or ten.  Maybe I need a husband to come home.  Maybe I need a life.  Whatever ... it will work out :).

 

Love y'all,

 

Kelli

Grieving, Christmas, Jesus & Heaven

 

It's Monday ... that should probably say enough.  So much has been going on here with the Newberry/Perkins Clan, I could never find a way to type it all.  I am currently holding on line for CafePress.Com .... I ordered $100 worth of autism awareness shirts (Xmas gifts for Chad to give myself and the kids),upon which part of the purchase goes to charity, and when I finally opened the shirts today Sierra's has a smudge and Riley's is faded on the autistic symbol.  Makes me mad, but waiting on hold for 4 thousand hours is making me madder.  Customer service is an art form that left us long ago ... I am learning that more and more every day this week it seems.  Either I will get my money back and keep the shirts, or get new shirts and keep the ones I am not happy with.  Mess with me enough and eventually I will win.  Sorry, Mom, not very lady like, but lady like doesn't always do the job these days, it seems.

 

 

 

 

Doesn't even need to be said, but the shooting in Newton, CT has really shaken me up, much like others in the world.  I am hugging my babies tighter, hanging onto the hugs for longer, and holding them and brushing their hair back behind their ears for just a bit more than they probably want. 

I had to talk to them (Connor & Riley) about the tragedy this weekend, as I didn't want them to hear it on the playground, much like Sierra did hear about 9/11 in kindergarten from some child who knew gorey graphic details she never should have heard.  I told them that some children were hurt very badly when a bad man came into their school.  This is why, I said, that it is very important for them to follow all directions when the school does a lockdown (drill) or any other sort of preparedness activity.  Riley said this morning while eating breakfast that maybe they were eating biscuits at McDonald's and playing Tball with my dad (Mike Newberry) in heaven.  Maybe so ... Connor is pretty upset, mainly because heaven is not something he can associate to with his autism, but, Riley seems to have her own version of heaven.  Of course Jesus and the Virgin Mary are there, but, so are the Golden Arches, DisneyWorld, Pizza Hut, My Daddy (Her Late Granddaddy) and recess all day with the most awesome playground equipment ever.   My heart swells at her interpretation .... through the eyes of a child and out of the mouths of babes.

 

Chad comes home for Xmas on Thursday, the 20th.  The kids are so excited it is like Elvis is coming home to film Blue Hawaii.  We are all happy he is coming ... not the same without him here in our life daily.  FaceTime and the IPhone are great .... just not the same.  I told him I might let him sleep in our room, although, Riley has taken over his bed privileges.  Who knows .. I might end up a la couch so that the young'uns can sleep with Daddy.  You just never know.

 

Will end for now, but need to get something out.  I have heard on the news for the last days that the mentally disturbed man that shot the children and faculty in Newton was autistic and had Aspergers.  For those that don't know ... Aspergers is considered a higher functioning form of autism.  Mainly portrayed as those that are highly intelligent but not so fond of relationships and touch.  I need to get this out of my heart and on this screen .... this young man did not shoot and harm others because he was autistic.  He did what he did because he was mentally disturbed and that is a whole other can of worms.  Something needs to be done ... I don't know if that is gun control, screening or better mental wellness availability.  My "liberal" ideals are not always favored, but at this point, it isn't about being "liberal".  At this point it is about reality and when the next copycat does this again.  Pray for our schools, pray for our teachers and students, pray for school faculty, pray for the families of all the lost, and even that of the disturbed gunman.  We just never know .. only God does and unless we learn to let him back in there isn't much he can do.

 

 

Presents to wrap tomorrow ... teachers gifts to start getting ready and somehow I have to find time with a nice glass of "Kelli's Special (lol) Apple Cider" and watch National Lampoons Christmas Vacation.  My most favorite Christmas movie and I haven't wanted to watch it unless I can watch it in all its glory without tons of interruptions.  Not sure when that day will come, but I will make it happen in the next several days.

 

I love you all .... more than you know.  Life is short ... kiss your babies, hug your friends, say a prayer and embrace life for all the goodness you can find.

 

Until next time ....

 

Much love and goodness,

 

Kelli

 

   



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