look for the orange

“Matthew” 

Look for the orange shirt, I tell myself silently……find the orange………I’m yelling now - ”Matthew……Matthew”………look for the orange (tears falling – uncalled – unwanted – unbidden – silently – slowly – tears falling on my cheek)    “MATTHEW”

My heart is alternating between stopping and pounding too fast in my chest…….this is the first time that I have opened up and let him “be a boy” as my husband has wanted me to – against my inner fight. He tells me to “leave my helicopter blades at home”.  This is our first Mom and Son Cub Scout camping trip. Yes, my son does need more independence…yes, I probably hover a whole lot more than I should……but he also has autism.  He is "high functioning" (whatever that means), so he understands what I tell him, but he doesn’t fully comprehend danger in the same way, nothing scares him.

“MATTHEW”….. “MATTHEW” …..  I’m screaming – there are places to fall where I couldn’t get to him, places to hide. There is poison oak over in those bushes…….there is a major drop off to a stream below…. find the orange……… look for the orange …. find the orange……… look for the orange…

There he was – blonde little head, bobbing up and down, arms flapping, waiting by the two metal poles.  He knew not to go out past the boundary line.  He makes mental notes of where things change.   I had told him not to leave our circle of cabins.

I was too upset to be mad at him……. Even though that was there too.  I reminded him, probably too sternly to not venture out without someone – don’t run off into the woods.

He was ready to go again, to go see what he could see……I was ready to drop on the ground, I couldn’t breathe, ready to curl up in a ball and cry……but I had to push on……I had to keep looking for the orange – running ahead of me.

(Ed note - this was written awhile back, but I was too afraid to post - too afraid to finish it... it's really still not finished.......I'm still looking for that orange everyday - scared to death - struggling with anxiety and helicopter blades swirling above my head........)

I'm not ready - (is this what they call "functioning"?!?!?))

I’m not ready.  After reading THIS…….I’m definitely not ready. 

I’ve thought of the future.  I really have.  It’s fuzzy and vague, but it’s a general idea of “it will be ok” kind of thing.  I see his father.  He is an Aspie.  He can semi function in society at large.  But when I think about it more………I’m the one that is functioning, keeping us all together – afloat. 

The Hubs - It takes him forever, but he gets himself up, gets ready for work and gets himself out of the house…….mostly.  On the days he doesn’t…..well, he calls in sick or a vacation day. He has ample time, so he uses it often. If I were his boss, I would have already fired him. This has been happening for years, it’s not new, it was his routine for school too.

He does not cook dinner – it’s not in his “routine”. If I am not home for some reason with Little Man, he will wait hours for me to bring home food and starve, then to cook something for himself and go out and pick something up in a drive-thru. The second I come home, he is hungry, even though he might have been home for hours.  There is a big white box in the kitchen…..a full pantry…..he could start dinner. 

He could help with homework.  He is SUPER smart!  He is actually one of the smartest people I know.  I think he could do second grade math.  But as I am struggling to make dinner (“yummy, home-made dinner from scratch” since nothing else is good enough for him) he is sitting watching tv.   

THIS AND SO MUCH MORE………..  I’m thinking – this is NOT functioning……how is he going to teach my son how to function……I’m NOT READY – maybe ready to cry – but not ready for the future!

facing the music

First there was this:

AWESOME PROGRESS!!! Little Man at his substitute daycare ASKED TWICE yesterday if he could find a quiet spot so that he could just take a break from the noise and movement......ASKED, no getting upset, no hitting, no meltdowns!!! WOOO HOOO - way to go Bubba! This is progress people! I might not have the same issues as you have with your kids - and sometimes it's hard to hear all the things that your kids can do without a second thought, but damn it, we are celebrating every single milestone, whenever we get to it, small steps at our own time! Autism Be Damned

And then there was this……..
                Eating my words - I guess this morning was hard, but if he did it, he can do it again.
                Two steps forward & one step back is still moving.

Which turned to tears……….mine

This shit is hard.

It seems like each day I cringe when I pull into the parking lot – hopeful, but with trepidation.  I want to run in and out – not to be stopped by a teacher, so as not to be told of the bad news.  To not be waved into the office once again to be told “your son did this again……”, “he can’t keep his hands to himself”, “he’s impulsive” or whatever the reason du jour is.  Some days I just can’t take it.  I want to run and hide.  To let someone else pick him up.   I miss him so much during the day, but feel guilty when it’s time to pick him up that I don’t want to hear it “once again”……………….  Some teachers are nice about it.  They understand he acts out usually due to some other behavior or a reaction of something else.  They get it.  Other’s don’t care to get it and don’t see him being bullied or someone being mean to him, so he reacts back.  He is impulsive and yes, he needs to be better at handling his emotions, but there is a whole picture to it – open your eyes people!

So, once again, I’m counting down the hours until pick up, knowing that I’m scared to go in and face the music.

 

I'm hiding now

How come we as women can remember……….and then dwell on every single stupid, maybe douche-baggy stuff that was done to us – or maybe a word that we said wrong to someone and then felt bad, then that person didn’t talk to us – either intentionally or for other reasons (heck, they might have not even been bothered), but we keep it all in – boiling and festering until we just blow up.  It rots us to the core, we think about it non-stop – wishing we had done things differently, said something better, not said something at all!

But you do worry – what if you hurt their feelings, what if they think you are just stupid and not worth their time, what if…………

And then, maybe you tried to apologize and got tongue tied, or it came out wrong…..or you’re just awkward……… and now it’s even worse!

That’s when I just want to push my head in the sand and never come up………..

To Minecraft.......or Not To Minecraft - That is the Question

So I am greeted by Little Man at his daycare with a bunch of homemade tools in his hands yesterday.  During the LONG.....over an hour ride home...... he tells me everything there is to know about Minecraft.  Did I know that everything is made out of bricks, lists of all of the bad guys, something to do with butter???  Oh. my. gosh..... I was going to rip out my own ears to get some peace and quiet! I even turned up the radio - did he take the "hint" - no!  That little kid kept right on going, like his life depended on telling me everything there is to know.

Here's the kicker........he's never played it.........yes, that's right - NEVER!  We don't even have a game system to play it on! 

He heard all of this from his "friends" talking.  I use "friends" - as he actually doesn't play with them, or talk to them, he just listens.......or stalks - not quite sure! I don't think he's even seen anything about it other than their shirts.  Where he got the idea to make all of these weapons/tools, I have no idea - he said "his head" - good for you little buddy!

The question is - I downloaded the free version on our iproduct the other day when he came home obsessed about it, and then I decided that he didn't need to know about another video game.  He already has Angry Birds & a few others.  What in the heck should I do?  Do I let him play, and then maybe he can actually strike up a conversation with one of the boys and he can finally fit in (or try - we did the same thing with Pokémon - 7 circles of hell on those damn cards) or do I just let sleeping dogs lie?????

Stay-cations Suck!

Seriously – a “stay-cation” is just a fancy fucking way to say long weekend at home! I get plenty of those a year – what I NEED is a fucking VACATION – as in “Vacate” – as in “get the hell out of dodge”……. See the difference?!? 

I "get" two weeks of vacation a year, BUT as a mom - let alone an autism mom - I have to save at least a week of those precious hours for the boy - puke-fests, calls from school for hitting (yet again!), teacher-work days and heaven forbid if I get sick!

The hubs on the other hand gets 5 weeks of vacation, plus sick time......yes you read that right - FIVE. fucking. weeks.  And does he ever use them to take care of the boy - ummm..no.....Bastard!

Why, No, I’m not bitter at all.

Where, oh where is my table???

So I haven't posted in awhile.  I've been busy with......well - a 7 year old hurricane! 

 

Here is my proof - this USED to be my kitchen table:

 



 Little man has decided that along with his never ending supply of Lego's to work on, he is going to make a comic book.........so he HAS to have his art supplies out.  And his Cub Scout pinewood derby car...and that huge piece of Styrofoam - well, that he made into a skateboard vert ramp (way too much X-games for him!)  And the Angry Birds - because you never know when you are going to have to toss them at the cat running by....

 

Oh - and don't mind the bowl - that was his "if I have to puke" bowl from the side of his bed - which has only been used to transport Lego's - Thank God!

 

And - why yes - my web address is upside down........because I'm cool like that!!!

I don't wanna...........

I have decided that I don't want to.......

OK - to be more specific - I don't want to HAVE to learn about autism, I don't want to HAVE to learn about IEP's, I don't want to HAVE to tell my cute little boy that he has high functioning autism, I don't want to HAVE to tell my friends why he is not behaving as their "perfect little angels" are.

For some parents, it is a relief to have the diagnosis - and it can be. But with just being diagnosed, there is an information overload happening and the whirlwind of thoughts/emotions/things to do gets worse. It's not like I already didn't have a full-time job, parenting, cooking, cleaning, the works.........now add "investigator, advocate,..........well, the list just goes on and on.

I'm tired, I'm worn out and to HAVE to do this stuff while getting no help and support - just, well, Sucks!

Friendship....I just don't fit in....

I have a problem that has to do with myself & LM in the future. I am actually fearful to ask this, but can’t get it out of my head. I have come to the realization that I don’t fit in anywhere. I never have – not in school, not in church, not in the workplace. No group really wanted me or included me. From time to time in my life I had some fringe invitations or relationships, but was never fully embraced.

My very few friends have other best friends, leaving me without one of my own. (I’m truly happy for them, don’t get me wrong, but I would be lying if I said that I wasn’t envious.) I am almost 39 years old, and have yet to have a relationship where I wasn’t the “odd man out”. I’m “friends” with a few people, but all in all, they are “friends” of other “friends”. Not that I don’t cherish them (which I do and am grateful for them) or that type of relationship, but it’s just not the same.
I don’t know what I do / have done that has left me this way. I’m not sure how to change things for the future. I have been told to not let it bother me, but I crave friendship. I’ve been hurt so many times in the past, that I am a little gun shy, but I still want a friend(s). I need a friend(s) to do things with, talk to, go out and have fun with. I just don’t know how to get that.

Most importantly, if I can’t figure this out, how am I supposed to teach my son - who has high-functioning autism - that already struggles with social issues - how to make friends??? How am I supposed to help him navigate waters that I can’t figure out myself? How do I show him the cues from others to form true friendships when apparently I can’t see them myself? I am at a total loss.

Lame - I know....

I love writing.........I have a post in my head while I'm driving.  I create posts in my head while I'm in the shower.  I write posts throughout the day, when I'm working my regular job..........
And then where or where are the new posts on my blog.....?!?!?

In. My. Head!!!

I have actually been trying to live life, instead of writing about the life that I've been strapped to.

I actually WENT out for a girls night out dinner with friends that I haven't seen in 20 years.....yes - 20 full whole years!  It was so nice - I must do it again.  You know how you "click" with someone - well, yes, we clicked!  It was awesome!!

And as for my very Late New Years Resolution.......this is my first step - writing a post. 

No - It's not pretty, No - it's not great writing , but dammit - it got posted!