"To Get the Call from the Sitter, the "uh-oh" Call"

There are those weeks, I try to get my "chores" done and I'm faced with the reality, that I am NOT superwoman.  There is no shortage of well wishers, I am blessed with family and friends that do care, but no one is in my shoes.. Connecting with those with similar life dimensions (those who care for someone with autism) is starting to make sense to me.

  I've been trying to prove that we can have a normal family life.  That Jacob is just another person, with a completely new design and I just need to filter that into my daily life.. Its not like that though.  When someone with Autism (my son has a severe degree of it) needs you, it is not a job that you shrug, or take lightly.  I find myself spending the day thinking of ways to increase his potential, how am I going to ensure that he is ok, in the event I am not here.  Gosh, just leaving him with a sitter 2 hours, changes the potential directions of my life for a week!  One inadvertant comment or suggestion out of the norm from my sitter... and my son seems almost scarred!  To get the call from the sitter.. the "uh oh" call.. the "I didn't know that would upset him" call.... makes my stomach drop..I always follow this with, "what did he break?".  A few weeks back, Jacob pushed my antique sewing machine and cabinet over in a fit of rage over something the sitter said.  My perfect, smooth as a babies butt sewing machine... from 1897 "ish" not quite sure, was now, broken.  It was a spectacular machine.. ran on wheel pedal and leather belt.. it was silent and glided with perfect precision.  The machine looked like a chrome and iron delicacy.  It was perfect in every way.  Did you notice I said, "was".  I'm hoping JB Weld will fix it.. for the time being, I have pushed it way to the back of the house, into a closet.  Sigh.

                                                    (How the morning is supposed to start)

My days are filled with teaching Jacob.. (some of his activities he MUST do on his own..I can be no further than a yard away.)  He must learn to do things on his own.  Here I sit. Watching. Being silent, (I wonder, is he getting the creeps?)...chuckle.  Who knows.  He's singing. That's a good sign.  I don't dare get up.  He will lose complete compliance and attention to what he is doing.  So I quietly turn on the computer.  I Facebook.  One wonders what people think.. I am a talker. I cannot be quiet. It is not in me.  I am guilty of going on and on about boring subjects (they are not boring to me).  I have resorted to sending myself stuff.. but that is way boring.  I can be pretty political too.  Hm.  I'm a lot like Jacob in some ways.  (life on my terms).

I want those who feel alone or depressed about their lives to know, enjoy the freedom you have!  Enjoy deciding what you want to do for the moment.  (I cannot afford to be depressed or whine about being alone((truly in some ways though, Jacob, is my best friend.. besides my precious husband... my son treats me so good)).  Some of us, we don't always get opportunities like that (freedom to do as we please).  We must arrange housekeeping, sewing, blogging around that special persons time.  Sure one day, in time, he will learn things cannot always go his way.  My son is trying so hard to understand, himself.  I have to blend into his mind, A. what he is doing, B. why he is doing it, and C. to relearn concepts like blending my likes into his life.

Some days, I have a hard time getting motivated and started on things.. like per say cleaning out the office.. and then that special day comes.  I just wake up energized just right, that I want to work on the office.  Took two months, but the day is here.. I get dressed, fix a coffee.. put my hair up, walk into the office and Jacob comes in.  He starts pulling my arm.  He wants his meds, his breakfast.. Ok, lets do it.  He scarfs it down fast, I've just started the top shelf in the office.. oooo so dusty.. I walk out of the office to get a rag an a bowl of soapy water.. I am headed back to the office.. and my fifteen year old strong and large son, stops me.. NO Wal-ee', NO! WA-lee! (no water! no water!)  He cannot differentiate that if he is not allowed to do it, I might still can.  He panics because I am taking water into the office!  He feels he must stop me.  A small and unique argument ensues. I am not handling it appropriately because I am now frustrated.  I start explaining various things to Jacob, he doesn't get a thing I'm saying.. he starts to bite his hand, oh nooooo, he's stomping.. wait Jake.. I meant to say.. (yaddi yadda etc)..  45 minutes later, Jacob is worn out.  He has quit arguing and he is allowing me to take the now cold soapy and somewhat spilled water into the office.. I have sweat on my brow and my hair has fallen partly out of its bunn.  I walk into the office stare at the shelf.. and I hear Jacob.. he has pulled down a cabinet of plastic bowls.. and filled a big bowl with soapy water.. he is going to soapy up the shelves in his room now.  I ignore, this.. why? because I have decided to "zone out for a few minutes" then it hits me....  WAIT!  Take the books off the shelf first Jake!  OH NOOOOO!  I was saving those golden books.  Jacob starts crying.  He is devastated.  He thought he was doing right.  After 30 minutes (there there Jacob, I pats him on the back) "you were trying so hard to clean that shelf! great job Jake, Just a little water mess, we'll clean it!" (i'm irked but can't show it).. we both sit and take a rest.  I turn on the computer and send out mass pictures of nothing ANYONE is interested in on Facebook>>>must be how I cope.

(Like me please on Facebook) thanks!  Please do check out my mundane photos' I took them all.. Leave a comment and let me know what you think? 

https://www.facebook.com/AppleValleyApronsAndMore

  We are all calmed down now and Jacob is working on independent studies.. I should probably sit near him.. ensure he does it right.. but its my chance to sneak off and work in the office.. I walk in there.. sigh.  I am no longer interested.  The office has lost its sparkle.. my desire to sort it and clean it is gone.. gosh, I hope I get it back another day... soon.   Sigh.  Time for a nap.

Sunflower by Jacob. Nice.

This post was originally about some data and my desire to see changes in how parents who choose to keep their children with ASDs home instead of placing them in group homes.. are treated compared to group home services rendered.. after reflection, I wanted to change the post and keep it more geared towards the loveliness of my severely autistic child, Jacob.. 

I want to keep this blog about the sweet nature of my son despite a the rare/not so rare meltdown here and there.. and to focus on the things that bring him joy and us joy through him.  As I poured through the countless sites on autism.. I noticed there were lots of parents that feel overwhelmed, exhausted, isolated and "imprisoned" by their children.  I want parents to know, this is NOTa sentence of busting rocks for the rest of their life.. but you will bust rocks.. that I can promise ( and he/she will too ), in reaching milestones and surpassing hurdles in their life. 

 When I am ill, he runs and gets pillows and blankets.. and in his strange garbled tone say's "lie down, lie down" pronounced (lie dowel lie dowel).. what a sweet sweet boy.. There are days, I scratch my head at the end of the night and wonder, "how did I get through that?" (meltdown days).. I'm still standing thats all that counts.

  I will leave the trained people to discuss the heartbreaks and debilitating pain watching day in and day out.. someone like my son suffer-trying to communicate, trying to connect with the world and people around him OR suffering consequences from not connecting.. there are countless services parents are not receiving.. countless changes in the system that needs to be made including insurance availability for autism needs.. but I have to challenge myself to show you how wonderful my son can be...  I like to refer to it as, the constant terrible two's.. its exhausting, but you wouldn't trade that cute guy for nothing.

 There is  a lot of science data on ASD's (autism spectrum disorders).. I could pour through pages on this stuff.  One page I cannot find.. How disheartening.. is the page that led me to Jacobs therapy.  I saw a study 3 years ago being done at a Georgia hospital.  They were forcing ASD's to "create"  I discussed this in my previous post.  Today I was going to share that with you on this page and could not find it.  I did find many sites discussing art and autism and therapy but this was a particular site that gave me much hope.

Because of how the autism mind works, and how it is lit up under MRI it was discovered that forcing autistic people to create "new" things.. forced them to deal with parts of the brain that were not very well lit under mri. This means taking away the coloring books(it is structured artwork) and forcing him to 'create' as this opens up normally 'dim' areas of his mind under Mri.. therefore, I like to bring subjects up to Jacob and ask him to "draw his "own", Canyonlands.. or Mcdonaldstm arches.  I sometimes just sit back and let him start painting something and then ask him, "whatcha drawing Jake?"..and he surprises me.. a Legotm house?.. but yes, now I can see.. a Legotm house..hm. Thought I'd share this photo of the finished "Legotm House" painting, in the last post he was still painting it. - "Lego House" by Jacob: 

and finished!

 A moment of reflection or introspection.. Jake sitting so quietly on a farm tractor tire while I water the garden and snap pictures of sunflowers (I have a fascination with sunflowers) but who doesn't right?

(Beautiful Sunflower for you to Enjoy!)

and Jacob enjoying the sunflowers!

Boy Howdy, does he bring me joy! Maybe tomarrow I will ask him to paint me a sunflower..hm Sunflower by Jacob. Nice.

Sharing Good News in Autism

                 His Brain Works Just Fine!

As a mother of a severely autistic child, I am blessed to say, this is NOT the horrible news everyone has been told that it is.. Truly, there are not enough good things to say about a family member with autism.  First and foremost  their honesty is far beyond the technique we mere "normal" humans exhibit, on our best day.. These guys, wow, where do I begin.. They are so honest in their character, their behavior and even their social life.. they are cautiously optimistic and enduring once they trust you.  



You have someone, who will do anything to bring you joy, if you give them the same respect.. My son is severely autistic.. We THOUGHT that he could not communicate.. but we were wrong.. everything he does is communication.. just because he doesn't use his ABC's to speak.. doesn't mean he's not communicating.. as what is seen in body language, the sharing of toys, and little signs they leave around, about... what they want, what they don't want.. and so on.  (like if they don't like dinner.. they go get the whole pot of it and throw it in the trash.. do you laugh or scream?) (he has learned now to just set the plate aside)..

Once we get past what "our normal" is.. we begin to see the openness declared by them in their daily processes.  Like my son, sings, sings, sings.. all the time.. sings.. maybe its echolalia or maybe he's talking..hmm.

My son, I just didn't care if he hugged me or not, or called me momma, or said, "i love you", i just grabbed him and hugged him all the time.. and it "sunk" in to his mind.. LOVE.. now he is the best hugger.. in the world.. Because their senses are so overwhelmed by just simple daily activities.. their focus is different than ours.. I have found, artwork DOES help.  

In Atlanta, Ga., a dr. is studying and working with the results of an MRI study, that suggested alot if not all autistics use one part of their brain all the time.. (the mathematical part).. the other side of the brain had no "light activity" during the MRI's.. so he suggested having autistic people "create".. to light up that part of the brain.. and in time.. maybe equal out what was going so strongly and taking over the other part of the brain, (You know the part that say's "stack everything you see").. so I decided, to take away the coloring books (which seemed to bore my child to death anyways).. and I handed him bottles of Crayola finger paints and a large artist paint brush.. and I asked him to paint.. on poster board.. WOW, his first paintings were.. "garbles of color" in time though he developed the concept to speak with the paints.. he started telling us what he wanted with the paints.. He would paint and say the WORD.. for instance, "Canyonlands!" (he had a magazine with Canyonlands he looked at and he really wanted to go) suddenly he was saying this word so clearly.. as I gazed into the artwork.. I realized.. YES it is Canyonlands!  He now paints Legotm structures, and Mcdonaldstm signs... and characters from his favorite movies.. they appear to be abstract works of art, but definetly have the figures and colors appropriately.. I have asked a few people what they think and have been told, they see lots more in those paintings.. hm.. 

I handed my son a toy horse and asked him to "name him" thinking that this is "creating" and so.. he looked at that horse, and he looked at that horse and he looked at that horse... and 2 days later.. he comes to me and say's... "Neah!"  (like Leah) but Neah.  It occurred to me.. he may have been searching his brain, for a name he had never ever heard before.. something that tied into the figurine.. a horse.. sooo not sure if Neah is the name due to a horse neighing or b/c he searched the far reaches of his brain.. to come up with this name? But the lesson.. His mind works JUST FINE! sorta.