Friday, November 13, 2015

Aspie or Asshole…… you decide???

Some days it just doesn’t pay to get up in the morning.  I find myself waking up in bed with a constant headache most days….. it’s name is “HUSBAND”.

I’m not sure when I first started thinking that he was different, but it was rather early on in the relationship. I hadn’t dated much, so I was pretty naive, but I knew this man wasn’t like most guys.  He was smart and intelligent, but it was more than that…. There was an intensity there for things that he liked.  It wasn’t that he just “liked” cars…. No…… he almost skipped our first date altogether because he became engrossed in a project and he called me to change our movie time 4 different times that evening…. (that right there folks should have been a big red blinking sign!!!)  He wasn’t just passionate about video games….. he played them non-stop. He was immersed in all things science / computers. Boxes of parts, became a whole room of parts…  You can see where this is leading.

It came to the point where it just all became TOO MUCH.  He would come out of his computer room or the garage for dinner, eat, then shut himself off again until bedtime.  It was like this for years.  I will admit, I became bitter and probably hard to live with after time, but that’s not how I thought life or marriage was supposed to go.  Day in and day out, this was our routine.  And there is no changing the routine.  (I know I have many faults of my own, but since this is my blog, we won’t go into them right now.)

If it were only that, it might be easy to accommodate. But it’s not. With routine, comes control. Control of all routines, all parts of the marriage – money, going out, so forth.  With the Control, came the fact of always being right. And by “Always”…. I mean ALWAYS.  There is no discussion, no thought out debate.

Control + Always Being Right = Disaster for the Other Person

In 23 years of being with him, I have never once been “right”.  He will begrudgingly admit that he might be a little mistaken, but not that I’m right. This really has dragged me down over the years. Not that I don’t know that I’m right or wrong, but to never have validation… that’s the part that stings, that eats at a person.

It took our kiddo being diagnosed on the spectrum to really “see” all the quirks & tendencies that the hubs has shown over his lifespan. It took him awhile to admit that he could possibly be on the spectrum too, but he believes that he is (along with confirmation from our ASD behaviorist).

Do I think that all of his actions and behaviors in regards to me has to do because he’s ASD – no.  Actually, I would say…. Hell no!  He’s an adult, he knows right from wrong. He’s functioning enough to know that things hurt or affect me.  Do I think that some of it is because of the ASD and he might not know how to adequately express his feelings, thoughts, actions and emotions in the way that I might be used to…. Yes.   I’ve told him for awhile now – “Just because you’re an Aspie, doesn’t give you the right to be an asshole!”  And I think we all agree on that statement.  But where do I judge one from another?  Where is the line that decides what it is? Who am I to even judge that?  Do I want to accommodate him as much as I can...... yes!  But, do I think he doesn't care to look beyond himself to see how things affect me.... yes, I think that too. 

I fully admit, it’s harder for me to have a spouse on the spectrum than a child on the spectrum. With my little man, I can teach him things, he listens and even though he will argue with God himself, he still understands that he’s learning and trusts me.  My husband, on the other hand, is so stubborn and set in his ways, is that everything is a fight no matter what, true affection is at the bottom of his list, and his passions and interests will always be above everything else. 

It’s’s never going to change… the routine will always be there… and it will only get worse in old age. 

Friday, October 2, 2015

Break the Silence ... Throw the Lifeline

There are a few new mental health initiatives going around right now – 
The Semi Colon Project,  Always Keep Fighting,  Medicated and Mighty, and a whole slew of others.  I think that’s great – fantastic in fact.  I support every chance in getting the word out there in spreading awareness in understanding mental health and getting help for yourself.

I applaud every opportunity to make sure we are supporting each other.

But as a community, are we doing enough?  I don’t think we are.  I think we have more to do on a one-to-one basis. When we say “hugs, I’m there for you…” are we really?

Case in point… There was one of our own on Facebook who had come to the end of her rope.  She reached out and said that she was done.  She was drowning in all that was going on.  She was emotionally, physically, mentally exhausted. That she wanted to give up, but she knew that she didn’t have any options.  It was hard for her to ask for help, but that she desperately needed help.

After the end of the many comments of “hugs”, “you are not alone”, and “we love you’s”

The silence was deafening.

A week has gone by…..   not one single person has checked up on her.

No emails.  No messages to see if she is doing ok.  No silly memes sent to make her laugh. No texts to see if she needs help.  No phone calls to make sure she’s gotten out of bed. No family, no friends.

Is this how we have personally helped someone in our tight little community?

I know she understands that people have lives and things going on. I know that she gets that others struggle just as much as she does, and that she cares.  I know that she has loved on people during the time she was hurting, because they were hurting too.  I know she realizes that not everyone fully gets that she was at her rock bottom and that if suicide wasn’t against everything she believed in that it might have been an option. I know she is hurt that friends didn’t make the time or effort….. but be damned, if it were them, she would do it for them in a heartbeat – even now, because she loves them. 
But, I also know, that she will probably never lay herself out bare again, exposed for the world to see, because asking for help is so hard……… so fucking hard.

And if we can’t ask for help we might truly be lost

If we know better - we can do better.

So, let’s do better.   It just takes a second to send a quick message to say:
 “I’m thinking of you”
“How are you doing”
“ Here’s a funny joke”
Or send a cat picture, the funny photo you got off the internet…. Pretty much anything!

It’s not hard, it doesn’t even have to be “right”, if it breaks the silence – it is a lifeline to the person that is drowning!

We need that life preserver thrown to us.
Because our lives depend on it
Because my life depends on it

Because that person was me

Tuesday, July 7, 2015

But I don’t. I just can’t.

I’m trying not to give up….. but it’s hard. 

I put on makeup, pulled my nice jewelry out of the safe and dressed as if I cared. 

But I don’t.   I just can’t.

I can’t make myself be what I’m not.   I didn’t want to get out of bed, but I am a responsible adult, so I did what I had to, but I can’t get myself to wake up inside.

Some days I am raring to go……. Motivated, wanting to do 17 things at once. Color my hair with crazy streaks and so on.

 And then the wrecking ball comes and knocks me down.  Flat on the ground, the air taken out of my lungs.  I can’t breathe. I want to give in to the feeling and stay there.

But I don’t. I just can’t.

Because I’m supposed to be a responsible adult.   I’m tired of having to be a responsible adult.  I just want to give up, let go, crawl into bed and never get out.

But I don’t. I just can’t.

Because nobody will do what needs to be done for my boy.

So…… I do, because I have to.

Thursday, April 30, 2015

shoelaces & letting things slide...

I’m a bad mother.  I’m not sure when it started, maybe it was before he was even born.

He has troubles tying his shoes, so each day he slips them on.  We are in such a morning rush to get on the road for a nasty commute that I don’t even pay attention or notice anymore.  They are on his feet, there was not a meltdown of epic proportions and we are out the door.   And…. Yet I know in my heart that it is not the “right thing”, it’s not teaching him.  I don’t even know if it is just because I don’t want the fight at 6am to get out the door, or if I’ve just become too lazy to even care.  I’m tired, he’s tired, it’s done.   He needs to learn independence, self-reliance, handling the world around him, and yet, I’m letting him become reliant on me to get things done, or not even try to tackle any of it.

I guess it stems, to be perfectly honest, from me having depression and being bi-polar.  Some days I can barely even get myself out of bed to get ready, but I’m in charge of getting another human being ready for the day.  Then, to add on autism where he really only wants to do “preferred activities”, I have no patience other than to trudge along and get things done no matter what, no matter who has to do them. The process doesn’t matter, just the end result……. 

But , the process does matter….. he needs to learn things,  I’m not going to be here for him forever.

I’m at a loss, I know what I should do, but don’t have the energy to get it done.  I also know that I need to just stop doing things for him, he is a resourceful capable 9 year old that should be able to do some of these things.  I was forced at the very young age of 4 to survive and carry the load of many household things because my mother was ill.  I cooked, cleaned, did the laundry……. I never wanted that for my child, but in trying to “change the future” and let him be a kid, I’m not teaching him the stuff that needs to be taught…..

I’m a failure…….. and I know it…….. and I don’t have the energy to fix it…..

Wednesday, March 11, 2015

Sports, Scouting and Second-Guessing..(part 1)

Things haven’t been going the way that they were “planned” as of late.  Actually, that’s a lie. They never go as I had imagined when I first had my boy.

I thought of all of the things I would do with him once he was bigger…. Little League, Cub Scouts, School fun days, riding his bike, playdates with friends.  I had this picture in my mind.  I think we all get this picture once our children are born, it’s natural to think of the future fun.

But that was then……… this is now. I have a son that would rather read than play, has no real friends and is so afraid of failing -  so he doesn’t want to even try.... BUT he also wants to do what the other kids are doing. He wants to be involved in all that they do. 

So, in Kindergarten he asked me if he could play baseball.  He had seen the kids out practicing in the field behind his school. I was a bit unsure, but figured that all of the kids would be about on the same level, since they were all so little.  Boy was I wrong!  I had no idea that most of them started T-ball at 3 years old.  He was already behind the curve, but there were a few others, so his differences did not stand out too much.  It was hard to watch, but he made progress….. I made progress in not caring what other’s thought.  We still didn’t have a diagnosis, but I knew something was just “off”.

Our little baseball player

The next year he begged me to play again. By this time we had received the diagnosis of autism. I figured we would try and if he didn’t last the season, well, then we wouldn’t worry about it. He lasted the season, but even though he didn’t notice…… I did…… the differences were showing to the other kids. They were picking up on his quirks and making fun of him.  I played momma bear and tried to teach them to play nicely with each other, no matter who they were dealing with.  Once again, he was happy and once again, I was miserable. I was happy that he hadn’t seen the cruelness of kids, but hurt that when he finally did notice, that he would see it was directed at him.

I was happy that the next year, he never mentioned baseball again. I asked him about signing up, just in case, but he declined. I was thrilled when he didn’t want to.  I figured that he had just been bored in the outfield and that sports were just not his bag.

I was wrong once again. You would think that I would get used to this, but it still amazes me each time I’m wrong!  He piped up at the end of summer that the kids at school were going to be playing soccer and that he thought he would be a great soccer player. AHHHHHH!!!  I had hoped that we were done with sports, but alas…..  So I signed him up with the rec department with much trepidation. I pulled aside one of the board members that looked like a grandmotherly type during their evaluations, told her of my plight and asked if she could put him on a team with a coach who would be understanding and supportive. She was an answer to prayer. He had a great coach that never left him out.  He taught the kids to value one another and that everyone had different skills and traits.  It is amazing what a good coach can do.  He loved it, I loved the team and even though I could see the differences, we made it through a great season. Yippee!

I'm not sure if he is excited enough!

Fast forward to the next season……… He asked, I signed him up, I once again had a quick chat with the same board member…….. and lo and behold…….. we got a crappy coach!  The kids made fun of him, one kid actually hit him in the face with a ball on purpose (kid & parent were mad that he was punished by another coach that saw it) and he was only put in for a couple of minutes each game because he wasn’t a “star player”.  Many of us parents went to this coach about his attitude and behavior…… but it didn’t really change.  He still had fun, and it was nice to meet a great group of parents .  Now being 8, I could see so many differences, but we were better at working through them…… we were both learning.

Now I’m scared.  He asked me a few months ago to play baseball again.  He’s been out of playing for 2 years. The other kids have not. They have grown and matured, practiced, learned the game and built up skills…….. he has not.  The stark reality hit me the other day at his first practice.  (Oh, and his coach starts practice before I even get out of work, so we can’t make it, but don’t even get me started on that!)  While he was remembering all of the basics of throwing, catching, and hitting, the other kids were having a real game!  It was heartbreaking.  At Opening Day this past Saturday, the kids were grouping together, milling about, playing …. And he was hiding behind  a book. He wanted to be there, but didn’t know how to interact. I tried to engage the kids with him, but to no avail.  I so don’t want to watch this season. His coach is unaccommodating…….. it is hard. I fear most of all that this will be the year he sees the differences……….. and for the hurt that will come along with that. 

You might think that by now I would be able to overcome my concerns and worry about sports after these years, he’s 9 already, but……. I can’t, I may never, I’m just too scared for my little boy.

And yes..... I know I should happy that he can participate at all, many kids can't at all...... and I do know this in my heart, and I am happy that he can participate, it just hurts....... and I do feel the hurt for my friends who can't experience this at all..... that would like for their kiddos to be able to just try sports.... I do understand, but it doesn't change the hurt in my heart for my sweet baby boy.

Opening Day....... before it got crazy

Friday, March 6, 2015

I was wrong...

Sometimes when you first start on a new adventure, you are giddy with excitement and energy, hyped up on internet “facts” and “tips”, but all with a little ball in your stomach of trepidation, which you are too busy to listen to.

You make assumptions of what life will be like in the future, how you are going to do great things, accomplish multiple goals and gather up all of your friends to show them the “truth”……

And then…… actual life hits you square in the head. 

What in the hell were you thinking?

All of the grandiose dreams litter the path that you are trampling on, trudging on step by step, second guessing everything that you are doing.

Then,  hopefully you find others on your journey. They mix their ideas with your ideas. You do more research, talk to different people with different viewpoints.  They help shape yours to a more concrete actual view of this path that you are on.  You learn, you grow. The more that you lose your initial energy high, the more you feel comfortable in your own pace of the journey.

Once things settle down, you realize what you once believed is no longer your truth. You’ve refined it through fire and stress.  What you might have been so enthusiastic about at the beginning, you might actually find you no longer agree with, you can’t get behind anymore.

That’s how I feel about Autism Speaks.  I was wrong. I thought that lighting up blue was the answer. I thought that raising my voice for them would help my son, help others that are along our path. 

I was wrong – for him, for my friends, for their kids, for the autistic adults I have become friends with, and for all of those that I may never know…….. I was wrong. 

I think that my reasons are still valid, still strong. (my last post - years ago) I want acceptance for everyone….. we NEED acceptance for everyone.  But I can no longer follow their path….. for it doesn’t really speak for autistics and their families.

Imagine – Autism Speaks Doesn’t Listen……. Only Speaks.

And what do we teach our children? “ Listening Ears”……… and yet, they only Speak.
But they DON’T speak for my family any longer.

If you would like to know more about the “why”, please go read a wonderful blogger at The Diary of a Mom - she said it so much better than I ever could!  – click    here     and    here

Tuesday, February 3, 2015

What's so special about Special Ed?

“We shouldn’t be under the Special Ed department!”

Yes, those words stung…… actually, they still do months later.  If you think a kid said this, you would be wrong, it was a parent.  A “smart” parent….. a GATE parent.  In our district the Gifted And Talented Education program is under the Special Ed department.

In their eyes……
GATE = different but MORE
Special Ed = different but LESS

I tried to explain to them that the goal in Special Education / GATE really should be giving kids access to what they need to succeed…. Special programs to stimulate their learning, Special unique opportunities outside the school setting to focus on education , Special modifications to ensure that their minds are broadened intellectually.  Hence…….. Special Ed

When I discussed this with them, you would have thought that they were afraid that their special snowflake would “catch” something from their being “lumped in with the others”……. Yes, that’s how he phrased it……. “the others”.

Those words hit straight to the heart……

He and so many other parents think that very same way….. Special Ed is something said in whispers, kept in secret, not discussed.  But show me a GATE parent that doesn’t scream out that their kid “made it”!

And the kicker…….. he knows my child…… he’s known him for a few years.  He has said wonderful things about my kid and yet he says this to me during a meeting.  My eyes stung holding back the tears….. luckily his wife stopped him before he said anymore….. but what more could he have said that his tone and attitude hadn’t told me already.

I defiantly told him that …Special Ed is not less… uniquely, my child is part of both worlds… GATE and Autism…….. and that truly made him Special!

AND tell me this…….
Why do we have to struggle for accommodations and services?
Why do we have to go to meeting after meeting, fighting for our child, feeling horrible each time we come out?
Why is it just commonplace to have them actually follow the IEP……. So much so that we have tons of meme’s circling the internet with our battle cry?

It just SHOULDN’T be that way……..not at all.    But it is, sadly, so many parents I know go through this struggle year after year to “prove” to the district that our children are worth it….. that they should get the opportunity to learn just like “other” kids!

But, no matter what I said, it hurt.  It hurt for my kid.  It hurt for all of my friends and their kiddos that are looked on as different, but less.  It hurt as a part of society that sees this as “their truth”.  It hurt to know that in this day and age that if this were about gender or race, that people would be outraged, their hands in the air fighting…… but who’s fighting for our kids’ rights? For people to see them as whole, wonderful loving human beings that need acceptance. 

So when will “Special” stop being a bad word?  Let us come out of the shadows and be treated just like any “other” parents.

When will people realize that ALL kids are special?