Monday, February 8, 2016

Autism and sports

About 2 years ago we came to the conclusion that Nash could no longer play on a regular team sport like baseball, soccer or basketball because of his autism.  When we made this decision.....many parents came to us and said that no one would ever be mean or cruel if he was on their team.  But, we had already had people in the stands say nasty things about Nash when he was more interested in the butterfly and the grass than paying attention to the game.

It was then that one of my posts on Facebook pointed me to Special Olympics.  We were so very grateful because Nash had a place to play sports without the nastiness of causing the team to lose.  We LOVE Special Olympics!  Coach Dave & Mickie are amazing....they do so much to make Special Olympics a great program.

But, we live in a small community so Nash is the only child that participates.  Nash was so excited to have basketball start...he has been practicing his slam dunk, dribbling, making name it.  But, the first day he came home disappointed....for some reason he had in his mind that there would be kids his age.

He wants so desperately to have friends.  The one kid that is his friend in school...comes with baggage.  And its baggage that I really don't want to have to deal with. 

Its heartbreaking to have a child want something so badly that I just can't make happen.

I hate autism!

Tuesday, February 2, 2016 calendar day

I was interviewed yesterday by my daughter for one of her college classes.

Sophie had to write an interview type article.  She choose me...for various reasons....but, after it was done, I was honored.  Honored because she interviewed me about Sundays and me..

Sundays are my day to sleep in...which is supposed to be a rule but many things happen to keep it from happening.  We talked about why my Sundays are supposed to be for me to relax and prepare for the following week.  She called it controlled relaxation.

Sundays, as soon as I wake up and come out into the house and have my coffee & pill box done, I do our calendars for the week. 

We follow 3 calendars - the family monthly, the family weekly and Nash's weekly.

  • The family monthly calendar sits on the kitchen countertop next to the pencil sharpener, pens, sharpies, and pencils for homework, massive quantities of binder clips & paper clips, post-it notes in many shapes, sizes and and pre-written statements, and the file box that holds everything necessary for school, travel plans and goes there so it can be found later.  
    • Anyone can put anything on this calendar that I need to know.  It can be scrutinized by me and can move onto the weekly calendar if I need it to be.  
      • I do simultaneously run a calendar on my phone too...but that it the jumping off point that everything else runs off of.  Both Lance & Sophie can send me calendar invites on my phone.
  • The family weekly calendar is cemented to the left side of the refrigerator.  It can be seen from all over the house.   It is how I know the week will run.  If it is not on this does not exist for me.  
    • If you need me to do anything for you or about better make sure it is on this calendar.
  • The calendar for Nash.  We do not spring anything on Nash if humanly possible.  Nash does not do change or spontaneity.  Autism does not like anything NOT on the calendar.  This also serves as a place where Nash can prepare himself for something...even the fun stuff.  Any change in Nash's routine is a battle.  Field trips or nail trimming are all something to be feared and must be prepared for.
After calendar...its me time for a while.  But, not if Lance is working.  If Lance is home, I get a quieter day because the entertainment of Nash is on him.  Sunday is our one day that does not have a schedule.  This is very difficult for Nash & autism.

Sunday is also laundry day..that did not get washed through out the week.   I will do a couple of loads and leave them in the basket to fold at a time I need to sit and not be bothered.  I like to fold laundry.  I do not like to put away laundry but folding is nice.  But, Sunday is my day to get ALL laundry washed, folded and put away.  I watch one of my shows and fold.

I also try to spend as much time as possible in my studio.  In there is color, fun, the ability to do anything!  Even organizing in there is awesome and calming.

Monday, January 25, 2016

Getting back to my blog

If you look will see that I have not written anything in 2 years.  TWO YEARS!

There has been shit happening!

I have had weight loss surgery (9-17-14) and have lost over 100 pounds...and look fabulous!  I will never be a stick figure.  I am happy being a size 18.

I have finally been diagnosed with Polymyalgia.....I know, it sounds so Caribbean or just exotic...and yet, no....IT FREAKIN' SUCKS!  Polymyalgia is the name given when you have Rheumatoid Arthritis and the same time  :)  I know, you are wishin' it was you!

I have been told by my doctors that I need to relax more because I am not going to handle everything if I don't.  So, I am trying...really to find the balance.

My retired Hubby now works 2 different part time security jobs.  I would tell you here...but, then he would have to shoot me.  He is a very private man...and it drives me nuts but, this is who he is and I will not cross his lines.

My daughter is now an adult.  Really?  That happened so freakin' fast!  I was just changing her diapers.  But, she is now a full-time college student at a local community college.  For years she wanted to be a teacher....I never thought that was a good choice but, it is not my choice.  But, after years of being fascinated by serial killers and all of that....she decided that she would like to be a criminal psychologist.  This, this makes sense.

My son.  He is now 10 years old and in the 4th grade.  We have a pretty good IEP and he is with a wonderful 4th grade teacher and a wonderful group of paraprofessionals and an amazing teacher.  About 9 months ago we changed up his meds to let autism come out and play.  It was not my intent when we sought to take him off the drug that was causing him to gain weight.  I kept asking the psychiatrist why he was getting worse and that was not what was happening.  So, now we get more agitation, interesting stims and other things that I will talk about as we go along.

I would really like to continue writing again.  Just the little bit I have done so far has really eased some stress.  And stress relief or anything else I can find to help me deal with the place I am in now is a good thing.

Monday, January 13, 2014

living and learning as best I can

Today, I sat in a meeting about special education and the county school district...and their plans.

I have been involved with special education barely a year.  That is NOT a long time.

In 1 year I was feeling like...yeah, I got this.  I can learn and guide my son, I can fight for him, kick ass for him.....I am his Mom, its what I do.  I have been doing it for my daughter all along...but not like this. 

With my daughter, I guided, I lead by example...and it pretty much worked.  She is a fabulous child.  OK, she is a lot like me...maybe too much like me.  But, with her I know....she will have a great life.  She will get what she wants and do well.  I have no doubts...even tho she has many.

My son....I question everything daily.  But, this past year....I got a lot done, have hit the acceptance stage where...I am letting him be how he is.  I am not pushing him to be what I think he should be....but letting him guide me to where he wants to be.  I am uncomfortable where he is finding his place...but, I am accepting him where he is.

Today, I sat in a SELPA meeting with the superintendents of all of the county schools talking about special education.  I am a CAC member.  Which means I was appointed to serve on the community advisory committee to SELPA.  Its what I do...I like to have a cause to fight for and I am good at it.  But today, while sitting in this first so far.  And it was a big one because they were planning on doing something very bad and the CAC.  Our President put out a call to arms.....and some good shit happened.

But, while I was sitting there following everything they said to the best of my was like sitting in a foreign county because I didn't understand the terms they used or the different parts of special education. 

I was lost.  I hate being lost.

I wrote notes, underlined things said and did my best.

But, what I found at the end of the meeting is that.....I have such a big job ahead of me.  I have to learn everything I can because I have 10 years to prepare my son for life.  Whatever his life is going to be. 

There is a phrase that I have seen in many books I have read and websites that I have visited...and is REALLY making sense...again. 

This is really how it feels......I was planning to go to Italy.  I studied long and hard to learn the language, the foods, the cloth, the lifestyle...I thought I had it all down.  Then I boarded a plane.  That plane took me to Switzerland.  Not that Switzerland is not a great country......It just wasn't what I was ready for.  I was ready for Italy.

I sat this evening talking to my husband.  Trying to explain what today felt like to me. 

I am scared.  I am ready for battle.  I am overwhelmed by what is before me.  I pray I can do this.  I feel naked and weak.  I already hurt from the long road ahead of me.  I know without a doubt I can do this because....I don't have another option.  I am a Mom.  I am his Mom.  I am going to need to have some balance. 


Shit....I don't know this either.  What else don't I know????  Now, I am scared again...because I see ahead of me a whole wold of what I don't know. 

I am very glad I see my therapist tomorrow.

Tuesday, November 19, 2013

working as a team....there is no I in team but there is a U in suck

OK...we are doing so much better...Hubby and I.

No, we are not great.

We are 1 year into dealing with the new demands in our life.

We have changed positions in our family. 

He is the parent that is supposed to be more flexible with time, be the Mom.  Be the one with the part time job, be the one that drops everything when the kids are sick,....Be the Mom.  You know Mom's, they do it all.

I am the one with the consistent job.  Set hours.  I am the...NOT THE MOM person.

I am frustrated.

We both took a mandated parent training class that would enable us to receive a behavior therapist in our home to help us work with Nash.  We could not attend the same class at the same time because it was out of town, a very long day and who was going to take care of Nash?  So, we went 2 different weekends, to 2 different places, taught by 2 different teachers...but the same class.

Hubby came home saying it was a waste, didn't learn much except that we both suck as parents.

I came home inspired, feeling supported, understood for the hardest crap we have been going thru and motivated to do more and try new ways of doing things.

Betcha saw this coming  :)

So, I have been trying new things, finding ways to motivate Nash to do things differently.  Being more consistent with our daily script.

Hubby and I even sat together for 2 hours discussing the class, how we were going to implement what we learned.  We were both there...but one of us had his head in a different game.

Last week when I saw my personal therapist, I was angry.  Angry that Hubby is still...yes STILL not getting it.  He is the one with the BA...not me.   My therapist sees that I have made strides backing off, not controlling everything and letting Hubby be a partner.  And told me to let HIM handle things on his own...not just dictate and expect him to follow. 

So, it has been over a week that Hubby is now in charge of helping Nash to make the necessary steps to be able to walk to his class from the drop off point in front of the school.  It is a long drawn out list of steps and dates with which to to make each step with a success date of mid_January.  Yes, I was controlling it.  So, I told my Hubby...he was in charge.  He could do it however he saw fit.

He is blowing it...BIG TIME.  But, I am keeping my mouth shut because....I want him to be successful.  I want Nash to be successful.

Tonight Hubby asks me for some advise on how things are going.  I try really hard...with out being an explain how this is not working.  That you can't tell Nash that he has to get to point Z....without going thru each step...many times.  Points A, B, C, D, E and on have to be done every time.  He can't remember.  He simply can't. 

I do not know how to make Hubby understand.  I can NOT step in.  I have to watch this shit hit the wall.  This sucks.

Monday, October 14, 2013

humming the Rocky tune as I strut my stuff :)

If you are one of my readers and are friends and family but not really sure about the whole autism thing....this might be a boring look into my life  :)  Or you might...just get an understanding of Nash.

For the last year...we have acknowledged Nash and his more than quirky behavior.  We also have accepted that his quirks have a label....autism.  I personally am reading and studying everything I can get my hands on or lay my eyes on.  I am devouring every word I can get. much slower but in his defense, there are a million reasons why he is behind.  Not to be easy on him....because this war is a win or die kind of thing  :)

he is sooooo cute!

My little boy...that sweet faced a controlling bastard!  Don't get all upset.  I love my son!  But, he is an ass.  He can get (our former behavior therapist, Susan called it) stuck on stupid.  Unless you see it in action and are in-tuned to his just might think he is very dumb.  Or we, as parents, are horribly mean.  But, if you study it more you will see the stupidity....the control.

Why does he do this???  Man...I have no idea.  I saw it coming tonight.  I saw it.  I called it.  I got Hubby to witness it.  Of course then I had to explain the entire deal to Hubby after it was over....but I won!  I refused to let this little man....that cherub face control this house...anymore!

Nash has been controlling every aspect of us, the dogs, our daughter....and this is just how damned smart he is!  It is hard to detect....and then when you see can't believe it!  And is so can't out smart it!

My story..................

At 6:30pm, Nash came out of his bath, all smelling good and looking all cute in his jammies.  He walks over to sit next to me and our dog Charlie is there. (Back story...Charlie is an abused dog that was rescued by me....he is very sweet but very traumatized)  Charlie sits up to say hi to Nash...and Nash punches him.  I stop everything...and tell Nash to apologize to Charlie and to promise to never do this again.  Nash sits down and refuses.  I tell him to apologize now!  He meanly says I'm sorry, then looks at me and Hubby...and says I hate you both.

That's it.  I tell Nash this is unacceptable and he will serve a 15 minute time out.  We have a chair that is set away from us but see-able to watch him while in a time out.  He walks over mumbling how he hates us...saying we can't do this.  He sits.  And then demands that I set the kitchen microwave timer.  As petty as this sounds....I know, this is do or die!

I look over to Hubby and tell him....battle stations.  Oblivion to him  :)

I set my iPhone, so I can watch the time....but not Nash.  Normally, when the timer gets close to his punishment being over....he will self-inflict his own punishment.  Stay in the time out longer...taking control of the punishment.  I have always felt powerless over this.  Everything I do...he ends up controlling and I give up.


At about 2 minutes before the end of his time-out, I tell him it is almost over.  When the alarm sounds, he is to get up from the chair, admit that the time-out is over, sit on the couch and not mention the punishment.  I look to Hubby...I tell or die Buddy!  Get on board.  Shit is hitting the fan!

The timer goes off and Nash refuses to get out of the seat. stuck!  He is stuck on stupid!  He says he is still in a time out and can't leave the seat! friend...battle is on!  I shut off the television and all but one light.  I know...that this is now WAR!  I order him to sit in front of me.  He finally does.  I lay out orders...and he refuses to acknowledge them!  I tell him...he will join us in the living room and watch TV or he will take his pills and go to bed...NOW!

I look to words but the look is...are you backing me up??  I say one more time to Nash, you are NOT in charge, you will do as I say.  You will join us in the living room or take your pills and go to bed!  Nash stands to attempt to hit me.  Hubby stands next to me, showing force!  I say my order again!  Nash finally backs down but Hubby does not move!  YES!  I GIVE HIM THE ORDER AGAIN....HE WAVERS...HE WAVERS.......he starts to back down.  I have him.  His routine, his stuck on stupid will now work in my favor!

I stand, Nash stands...he walks over to his pills.  I am NOT believing what I am seeing.  I stand across from him at the counter.  I say will join us or take your pills and go to bed.

This is it.  Eye to eye!  I do NOT blink!  He holds his pills....and says....I will go to bed but you can't tuck me in!  He takes his pills!  I am victorious!

He walks off...yelling that we need to call security!  CALL SECURITY!  Hubby, right behind him says...Buddy, I am your security!

OMG!  Now...if you don't get autism....then right now, you are thinking...this is one fucked up woman!  But, if you know are hearing the Rocky tune right now!  You can see my arms held up......da da da da da da dat duh!

And yes folks.....I won!

I will get the control back....I will take my house back!  I will not be ruled by autism!

Thursday, October 3, 2013

asking for something.....can be the raping of your soul

For the last 6 months...we have been told to file for disability for Nash.  To get assistance.  It's a hard one to swallow but, we finally got up the guts to start the process. 

It's a kind of paper - rape process...yes, that word is rape.  You fill out all kinds of paperwork, then go into the SSI building and have everything you own man-handled and gone thru by their security guard.  Then you sit in an empty room and wait. 

They finally call your number, take you into a very bleak, very grey, sad room and sit you in a grey compartment.  That compartment has nothing but grey, 2 seats facing a grey person...who tells you he is not getting paid for his day there because our government is shutdown. 

So now, this unpaid grey person has a ton of questions we have to answer...personal questions.  Like has Nash served any time in prison?  Has he held a job?  Is he on parole?  When did we know there was something wrong with Nash?  Do we have life insurance, if so how much?  How much money do we make?  Do we have more children that we would like to see if we can get SSI for?  Would we like to apply for SSI?  My favorite, you got a lot from your first husbands wont get that much now.

And when grey man is done...he excuses himself from the grey compartment.  We wait in the grey room.  Then he comes back and tells us that altho we have laid our pathetic life out for him to scrutinize.......we blew it.  Sorry you make far too much money.  But, should you divorce and Mom take full custody...we can reformulate. 

What?  Really?  What??

But, no worries.....when Nash becomes of age, we can file again.

So, we are doing everything we can now to make sure he never has to need this.  He will be a productive member of society....if it kills me, you and all of your friends.  It will never come to that.

I never, ever want to do this again.

This past year...we have laid out our lives, opened up our souls to people to help our son.  We have been laughed at, lied to, pointed in very many wrong ways, told to buck up, go find a sport, be a better parent, give up meat, give up the color blue, don't use dye based anything, vaccines are how we fucked up our child,  I was a bad mother...I did too much or I didn't do enough, I am too old and should have thought about what I was doing when I had a baby at 42....and of course one of the reasons why I don't speak to my family.....I should have had an abortion.

So, I have a son who I love, who is a little different.  Who gets a little over spun by anxiety.  Who goes from soft & cuddly to a screaming lunatic in mere seconds.  Who's favorite target for his rage is me.  I am not counting the injuries because then...I would have to admit them.  And it's embarrassing to admit that your 8 year old son scares you and hurts you.  And you are embarrassed to go to the doctor with damaged body parts because you don't want to have to tell anyone.

These past many months...........we have been interviewed, examined, tested, evaluated, watched, taught....and still.....we don't have much to show for it.  We got approved for some aid but first we have to pay them, then we would get a little respite, but how good is it when sending your child off with someone would only cause more anxiety for him which in turn will lead to more anxiety at home and probably more violence against me?  Or someone not safe around my child.  And having to live with it because that's what they recommend.

Anyway....this may not make sense.....but today felt like a rape.  A rape of my soul.  And when it was over...I was left feeling dirty and stupid and used.