Monday, February 27, 2006

Dear Noah:

I AM AT MY WIT'S END WITH STRESS TO BEGIN. I AM TRYING TO WORK FROM HOME BUT NO ONE ELSE SEEMS TO UNDERSTAND THAT I WORK FROM HOME....I AM TRYING TO LEARN A NEW ACCOUNT....TRYING TO FIND A HOUSE TO BUY WHICH HAS BEEN PUT ON HOLD PENDING THE REFI OF MY CONDO IN COLORADO........ALL CRAP...MORE CRAP.....NOW MORE PRESSURE TO MOVE OUT AND DO IT QUICKLY AS... WELL...I JUST NEED TO. DON'T WANT TO WEAR OUT OUR WELCOME WHICH APPARENTLY I HAVE ALREADY DONE.

AND I DON'T THINK MY FAMILY (MINUS A FEW) WILL EVER TRULY UNDERSTAND NOAH LET ALONE EVEN WANT TO.......I AM TIRED OF THEM THINKING I AM JUST NOT CORRECTING HIM OR THAT HE WOULD EVEN LISTEN TO ME WHEN I DO CORRECT HIM. IT DOES NOT (I REPEAT "NOT" WORK THE SAME WITH AN AUTISTIC CHILD AS A REGULAR CHILD). SO WHAT....DOES THIS MEAN IN THE FUTURE I AVOID ALL FAMILY GET TOGETHERS? DOES THIS MEAN EVERYONE OR ANYONE WANTING TO SEE ME OR NOAH WOULD HAVE TO COME TO MY HOUSE AS NOAH DOES BETTER IN HIS OWN SURROUNDINGS AND ENVIRONMENT? DOES THIS EVEN MEAN WE WOULD EVEN HAVE ANY VISITORS? AND SOMEONE PLEASE REMIND ME...I LEFT COLORADO FOR WHAT WAS IT....OH that's right...FAMILY SUPPORT???? NO pressures......a break......time...peace...love......

GRANDMA KEEPS ASKING ME WHY DAD HAS NOT COME TO SEE NOAH AGAIN...."DOESN'T HE WANT TO?" "HE HAS ONLY SEEN HIM ONCE since you have been back" ...I TRY EXPLAINING IT TO GRANDMA.

MOM HAS COME A COUPLE OF TIMES TO VISIT BUT IT HAS ALWAYS ENDED A BIT STRESSFULLY. NOAH LOVES HER AND HER VISITS but I can see the wear and tear it takes even on her as she sits there and does not totally understand why Noah has to run up and PUSH the dryer with all his might or body slam into the wall or my lap for that matter let alone all the many other little things he does that are "quirky" but make him who he is.

Without my sister Becky and her partner Margaret I would most likely still be unloading my rental moving truck. I love them to death and so appreciate all they do AND THEIR VERBAL support for what I have done so far. FROM MARGARET nonetheless.....not even a blood relative. I don't think she knows it but I just fell in love with her that day she verbally offered her support for my decisions with Noah and how the move would or could be a "good thing" and she could see positive changes in Noah already. She GETS it and probably only cause she has an uncle who is autistic. I am telling you all unless you actually LIVE it you never really understand it.

My sister Melissa seems to get it.....my sister Angela seems to understand it and knows or seems to..how to deal with Noah....my nephew Alex is great with Noah.

I see the same look on some family faces I saw on Noah's prior teachers. They tend to wonder WHY he is acting like he is...think he is a spoiled brat....and/or are a bit more than just apprehensive possibly thinking he would intentionally hurt someone?

He has autism.. ..a brain disorder...something he will not get over. So yeah....you have a semi-fucked (okay...normally not in rant mode I would have said semi-abnormal) up family member now... goes along really well with his semi-fucked up mommy. (excuse my FRENCH)

He has sensory integration disorder (also something he will not get over).....hence the need to constantly seek sensory input from his environment....usually involving body contact of some sort.....this keeps him GROUNDED and is something he HAS to do....it is my job to constantly redirect him to find positive sources of that input.....ACCEPTABLE ones...

stimming.....repetitive motions...sounds...or combinations of the two....he will do just to COPE and be in MY WORLD.....

fits of frustration and crying...not understanding the WHY of it all.....Noah does not get WHY of anything......he has limited verbal skills though they are improving so his first instinctive reaction is always to lash out. He is improving and now knows you cannot lash out.....so he runs off to another room to TAKE DEEP breaths and try to calm down. Most find this a bit amusing...but laughing only makes it worse in the end as he thinks you are not taking him seriously or listening to him.

He has generalized anxiety disorder (also something he will have to learn to just DEAL with). so he worries about things like me not being able to love HIM as I would not have enough love to give to someone else. He is constantly anxious because he has to walk on freakin eggshells just to survive in MY freakin world. He worries about not getting a BIG BOY cup instead of a kid cup in a restaurant. He worries about not having the right combination of foods he likes.....he worries about the COLOR of things.....he worries about the smells.....this also overlaps his sensory problems and his autism. ALL play roles.

His hypotonia....low muscle tone.....yes everyone...he still has a problem wiping his own butt. Will he get it? Yes eventually...just like he is still doing physical therapy just to learn to hold a pencil correctly....or a toothbrush...or to button or unbutton buttons or snaps...zippers....I will have to teach him HOW TO FOLD and HOLD toilet paper to wipe his own butt. This has already been going on now for nearly 2 years. I KNOW he will eventually get it and I will never give up on him till he does!

To most it probably appears I am just sitting up here lazily chatting online and doing nothing about my situation. Between working and homeschooling Noah and all the upcoming changes in my personal life...and environment....I have little time to actually find a new place to move to. BUT as of today I am devoting myself to finding a place and quickly. I guess if I cannot find a place to buy soon enough...I will have to just rent for now. Just to ease the stress for all involved. Now I am finding out from my realtor that I have to have my current job for at least 90 days (which I do) before I can buy a house. I also have to have my former spouse sign off on crap......more crap...always GUARANTEED to have CRAP happen in your life....if nothing else it is the ONE constant I can depend on.....more crap to make things more trying....always testing...pushing me to the edge to see if what. ...I will JUMP off it again? NO freakin way will I....damn you! so back off crap! BACK OFF NOW!!!!! This is nothing but a refining process of ME....and I become STRONGER with each dose of additional CRAP you toss my way!!!!!

I cannot handle any more stress...I was on overload before arriving to Ohio. Some simple understanding would be great. I have always thought about everyone else and their feelings and what is best for them...and still tend to do so...but it sure would be nice for someone to show that they give a crap about me and Noah for a change. TONY...this does NOT include you as you DO show me you care all the time and then some!

I am not putting all this down to make anyone in my family mad. This is where I post my thoughts and feelings and rants....so I guess this is a semi-rant. Do I feel better? After bawling all morning at the complexity of my situation? NO.....I don't. BUT life goes on....I am strong......and I will get over it.

1 comment:

LynAnne said...

I know you posted about this 2 weeks ago but I'm just now getting caught up. My heart goes out to you!I struggle with the very same issues with my family. My parents are still convinced my son will outgrow autism. Any progress he has is seen as a aign that he's "getting better."

To keep yourself from sounding like a broken record you can try giving the "What is Autism" booklets from the ASA to your relatives. You might check if your local children's hospital or area education agency has extra copies. In the end though, some people just won't understand. I just avoid the subject or offer matter-of-fact statements when my son is acting up and I get one of Those Looks. Things like "Since his brain is wired differently, he experiences sights/sounds/etc differently" or "Because he cant always communicate with me, I'm working hard to understand what this behavior means. Sometimes it's like struggling to understand a foreign language." I've even heard of parents putting a t-shirt on their child that says "I'm not misbehaving, I'm autistic"

Time will help also. Hearing that you have a child who is autistic and actually spending time with him for the first time are two different things. You are bound to get curious (and often tasteless) comments from relatives. I'll never understand why being related gives people license to say things they'd never dare say to a stranger or friend.

I don't think either you or your son are "semi-fucked up" Maybe it's the neurotypicals that are fucked up? Noah is unique and he has quirks but he is perfectly normal. You are a very loving single mom who is being the best parent that she can.

It sounds like Noah is right at the age where we really started struggling with how other people reacted to Erik. As soon as a child is school-aged people expect them to start acting like mini- adults.

Whoa..did that make any sense? Good luck to you!