Wednesday, April 15, 2015

Stuck in a moment

"I'm not afraid
Of anything in this world
There's nothing you can throw at me
That I haven't already heard" 

Stuck In A Moment-U2

Well, that was till I became an autism blogger Bono.  That's okay. You didn't know that. You were too busy being a rock star and saving the world and all.  Can we switch jobs for a week?  We really have so much in common.  We're both Irish.  We both like wearing sunglasses.  We both work with someone who's name starts with a definite article. (The Edge. The Kiddo.)  My paycheck is slightly less but whatever.  It's like we're twins! 

If you haven't figured it out by now, I'm trying to figure out who I am. Also, who I have become.  With a sprinkling of what am I going to do next.  

You see, I was prepared to be my husband's wife.  I was as ready as any first time mom could be for The Kiddo.  I was not at all ready to be "Mama Fry".  I'm not even sure who first coined that term.  Unlike Bono, I didn't pick that name.  It just showed up and like any good nickname, it stuck.  

I certainly wasn't ready for the questions that came after I started writing.  I get a little uncomfortable with that.  I'm no expert.  Not even in The Kiddo.  Hell, he surprises me all the flipping time.  He ate calamari over the weekend.  I don't even eat that!  I guess I"m up next for feeding therapy.  That's cool. I love my son's therapist.  We'll go out for beers for my session. I'm sure she'll be cool with it.  If you all saw the screeching banshee mess that I am most days in my house, I'm not so sure you'd be following me.  

"And you are such a fool
To worry like you do, oh no
I know it's tough
And you can never get enough
Of what you don't really need now, my, oh my"

I get so super excited to share things with you.  You just GET IT.  I don't have to explain it.  You know the work and the worry to went into each event and activity.  I don't want it to come off as bragging or showing off.  I just want to share it with someone who gets why I'm so freaking happy something finally wasn't hard.  I feel guilty though. Like when someone comments how they wish their kid did that.  I get that.  I get their wish for that something to be a bit easier in their kid's life.  Just trust me when I say there are plenty of times someone leaves a comment of what their kid can finally do and I find myself green with envy.  Like if he would actually swallow a pill, I would be the happiest girl on the planet.  

Plus I worry about what I am sharing.  Some areas and topics, I'm never going to talk about.  In some areas, I need privacy.  I"m not doing it to leave you out. I'm not hiding.  I'm not faking "Keeping it real", some things I just need for me.  

It's just a moment. This time will pass. 

You promise Bono?  Cause I've been doing this blogging thing for a while now and I'm wondering what's next with it.  You know what's getting old?  Covering up my name but at the same time I worry for my Kiddo's privacy and safety.  I keep thinking "When someone cuts me a check, then I'll put my name on it."  Of course that comes with someone then claiming "She's selling out!".  To which I say "Bitch, do you pay my bills? No?  That's what I thought.  STFU." 

So what' s next?  I've done podcasting, YouTubing, guest posting elsewhere. blogging  and by golly, I even made a t shirt.  So now what?  I do know I have make it happen on my own.  Despite my stalk tweeting Oprah, I doubt she's going to hand me a TV deal. (But don't let that stop you if you were O.)
Time for more writing.  Right after I make the next side of fries. 

Tuesday, March 31, 2015

I'm aware

Wooohooo! It's April. It's Autism Awareness Month.  Let's crank it up loud and PARTY till the picture schedule says it's time to finish it and go to the next activity. Ain't no party like an Autism Awareness party because an Autism Awareness Party don't stop!!!

Really, it does not stop.  Like ever.  Yep, it's that time of year where we have to tell all the rest of the world what we already know.  Autism isn't going anywhere and it sure is a whole lot more than wearing a certain color. Which at present I see there's the option of "Lighting it up Blue", "Walk in Red" and Au Gold.  Once again making me aware that just by wearing a certain color, you are walking into the dangerous territory of autism online wars.  Kind of like street gangs but without secret hand signs or the possibility of breaking out into song and dance like West Side Story.  

I'm aware that is never going to change either but as my family still insists on clean clothes, food and me showing an interest in their lives, I'm not dipping my toes into that pool of cray cray.  Feel free to go fight the good fight all you want. I have chocolate syrup to get off my ceiling.  I think I'll just stick to wearing black that day as I am very aware it's slimming and hides stains well.

I'm aware that there will be thousands of feel good viral greatest hits that will flood our social media newsfeeds.  I have a love/hate relationship with these.  I do love that they can lift spirits, bring awareness and open minds of those who are not in the know with all things autism.  However they also bug the crap out of me.  Well some do.  Like please for the love of God don't send me the ten thousand different studies of the autism cause du jour.  What am I suppose to do with these?  Hop in my Tardis and go back in time?  And they are usually based on ONE study.  Just one.  We know it's a spectrum.  Don't you think there's a spectrum of ways it could happen?  Yes, I know about Temple Grandin.  Yes, I heard about her books.  They give them to you in the swag bag when you kid gets diagnosed.

I'm aware during this month a lot of business go out of their way for us as families, which I think rocks.  Lots of stuff to do for free!  HOLLA!  I'm also aware lots of them say they are going to make a donation to an autism charity.  Here comes another fun debate.  Which one deserves it more? Or less?  We can't even all agree on that.  Here's an idea.  Send it all to me. I'm aware I need a massage. Sensory input for the win!

I'm aware I will get a note home from my son's school which will ask for him to wear "blue" on a certain day for awareness.  Let's think about that for a moment shall we?  They want to make my autistic kid more aware of autism.  Trust me.  We are aware but I will make sure a blue shirt is clean that day for him.  Team Quirky needs to represent up in there!

I'm aware we will see a whole mess of celebrities and TV show roll out their autism awareness.  It's noted who does and doesn't.  It's also something I will hold you to when you seem to forget about it the other eleven months of the year.  (Looking at you Steve Harvey.  Don't think I have forgotten.)  So don't be all cute about it this month thinking it's just something you can get a lot of retweets and "likes" for.  It's more than a social media trending topic for me.

I'm aware my Kiddo is only getting older and bigger.  An idea that scares the living crap out of me. I'm aware there is nothing I can do about that but try my best each day to prepare him for this world.

I'm aware that life is much easier when you simply don't give a flying fig about what anyone else is doing.  Eyes on your own paper.  You do you.  Don't worry about what anyone else thinks.  Everyone can be right in how they choose to raise awareness.  Autism is a spectrum.  So a spectrum of ways to promote and share information is all good.

I'm aware I need to go empty the dishwasher, so let me wrap this up.  Happy Autism Awareness Month Fries! 

Monday, March 23, 2015

I forgot about the autism

Sometimes, for like three seconds, I can forget the Kiddo has autism.  It can be the smallest event in a day but it knocks the wind out of me.  Considering I spend the majority of our days just steeped in autism. I'm kind of grateful for the break from the all the autism, all the time programming.

Last weekend he was having one of those EAT ALL THE FOOD growth spurts.  I couldn't cook fast enough to quell the belly.   "Apple?" he said and I was impressed he asked for a sensible choice.  I told him "Help yourself" and went back to dinner prep.  I keep hearing him repeat "Apple?" as he rooted around the fridge. "Look in the bin. Bottom left." I call out over my shoulder.

"I FOUND THEM!!" and off he runs.

That's when I forgot about autism.  In that three word sentence, that is perfectly formed.  Not scripted.  The appropriate response and pronouns.  All in the right place.  What autism?  I am speechless. I am stunned.  In that moment I think things are getting better.

My autism awareness returns when I see him half sitting on the love seat, with his foot banging on the keys to the piano next to it while playing Angry Birds on the iPad. Reality in this house.  Then I feel guilty that I forget the autism.  I feel mad at myself for feeling joy over the fact that for a few moments I thought it was gone.  I know it won't ever go. Why is it after all these years?  After all this time, that I still think in the back of my mind, maybe it won't be here forever?

I mean, I'm "Mama Feckng Fry" here. I"m suppose to be all about the awareness and the acceptance and look how I still react sometimes.  I'm not thinking in progress made but by what I thought went away.  Just when I thought I came to a place of acceptance and love, I'm still screwing it up with crappy thinking.

Why can't I just be happy that he said a full sentence?  Why do I have the need to put qualifiers on it?

Why can't I just let this Kiddo find his apple and be happy that he did?  Why do I have to make it this huge deal? I should be happy he's willing to eat an apple.  A long time he wouldn't.  I should be happy he could communicate his needs.  Be it in one word or a three.  Hell, a sign would have been great too.  If all he did was point or bring me by the hand, any of these.  I should be happy.

So that's just me at the moment.  I'm really struggling with these feelings lately.  I can tell myself logically till the cows come home, that I accept the Kiddo and all his stuff.  Yet here I am, all these years later still wrestling with it.  Still not being 100% okay with it.  Forgetting about the autism.  Forgetting that I'm suppose to be okay with it.  Forgetting that I'm human.

I didn't forget the fries though.  I have some standards.  ;-)

Monday, March 16, 2015

St. Patrick was a saint.

I ain't. ;-)

I have a pin that says that.  I wore it in my twenties when I was feeling cheeky.  It was a good investment as it paid for itself in smiles and a round of drinks.  With St. Patrick's day upon us, I can't help thinking how it means something completely different than it did when I was trying to flirt my way for a free whiskey sour.

I am not comfortable with the way we autism parents get a halo slapped on top of our heads.  1) It really messes up my hair. 2) Didn't you all realize we can suck as parents just as much as the rest of you raising that wacky neurotypical bunch that you all have got? 3) Hell, not even autism parents. Any time a parent is facing any sort of medical or special needs challenge with their kid.  Nobody signs up for this and yet we're suppose to be some sort of saint?  Pffft! As if!

There is a relief moment when you realize that your child has autism because you finally have a direction.  You can start making a plan.  Start figuring out what works best for success.  It's promptly followed by a "Oh Shit!  They have autism!" moment.  At least it was for me.  It hit both my husband and I in different ways.  He had no experience with autism at all so it was so much unknown for him.  I had worked for nine years with special needs kids, many who were autistic. So I was completely overwhelmed and really fell apart.  There were days were I could barely get dinner made or a load of laundry done.  (And in all fairness, I still have those days.)

I can honestly say how I view autism has totally changed.  A couple of times too.  It's a new ballgame when it's YOUR kid, not just a student.  Conversations went from ones with my co workers to other just as lost and bewildered parents.  That day I stumbled across that first blog written by autistic adult kind of blew my mind.  It good and bad ways.  Good, for the insight. Bad, when I saw the anger directed at parents just in general.

I get it. I do.  Those with a shitty childhood, that blows.  However, shitty childhoods are not exclusive to autism.  Yeah, I saw my share of parents that couldn't be bothered to give a crap when I was working.  I see them now as a parent too.  I have also seen both with ALL types of parents. Not that it makes it any better but please, don't jump to assumption that we all suck.  We are trying.

I know I am trying my best with what I have got in front of me and it still in some way will fail my kid.  That's hard to swallow but it's true.  I hope my kid can understand that when he's older.  Like I do now when I think about my own childhood.  (No, it wasn't a bad one. It was quite nice actually. But what person on this planet had a perfect one?)  I may understand some of the choices my parents made now.  I may not agree with them but I understand them.  I'm hoping the Kiddo will be able to get that too.

I hope he understand how this parenting gig is such an ongoing evolving process but he might not.  These are the chances I take with this.  I hope that he can understand some day that when I expressed frustration, confusion or even disappointment, I still loved him so much.  I hope he can understand that my emotions are just as valid as his. He might not though, autism and wrapping his mind around another viewpoint.   Regardless of them being "right' or "wrong".  I'm human.  Emotions happen.

I'm trying Kiddo. I really am and maybe with the Luck of the Irish, we'll be okay.

Saturday, March 14, 2015

Rocking the Autism Boat

I've been pushing him outside of his comfort zone a lot lately. Why you may ask?

1) I'm not going to live forever. Trust me I looked into it. They still haven't figured out how to manage that. (Thanks Obama!) 

2) As much as I will advocate for autistic people for their sensory needs and challenges,I do realize that not all accommodations will be appropriate for him. So I have to get him ready.

In a nutshell, he has to get over himself.

I know that sounds harsh.  However, that's the way this world works. Plus, there's no perfect time to start teaching the skills of how to cope then the present. Yeah, his behavior has been getting a little dicey. What with puberty rearing its ugly head. Yet here we are and life is moving on. It won't stop just because I'd like it too.

 By his next birthday he will be 11. That's the age of the students that I worked with were when I was teaching pre-vocational skills and job coaching. I'm thinking about the future. He's not going to go to college. I know this now. Depending on the day I don't know if I necessarily okay with that but I know that's what it is. I would like him to have a job. Hopefully one that he enjoys. I won't be there to help him with it other than to drive him to and from it. (Yep, driving isn't going to happen either.  I"m working on making my peace with that too.) This is why I have to help him now. I know by experience this process will take a long time and a lot of work.  

So I'm dragging him into situations I normally would've avoided like the plague.  A crowded grocery store on a weekend morning before a snowstorm. Going to a restaurant at a peak time as opposed to the in between hours. Changing up our routine because life happens. Two weeks ago my father was in the hospital.  Daddy Fry had to take over what I usually do because I was there and he was here.  Illness happens.  Emergencies happen.  Cars break down.  Stores you love close.  Some flexibility has to occur.  Trust me, I was a little off my routine as well by it all.  Still, it's a teachable moment.  

We could have all we want for accommodations, autism awareness, inclusion, compassion,sensitivity and empathy. Even still at the end of the day there will be moments where there is nothing we can do about a changed situation or routine. 

Let's call this a theory of the mind workout for my kiddo and his rigid thinking.  I can't expect empathy for him without teaching the concept to my kiddo.  He may not get it completely, if at all.  I'm still willing to try because I have seen him expanding his mind a bit.  He's very obsessed with feelings.  I'm grabbing that fixation and running with it.  

This could be a fabulous idea or the worst one I ever had.  Won't know till I try.  If my next post comes from me typing under my blanket fort in the laundry room sucking down a bottle of Merlot like it's my job, that will tell you how it went.  ;-) 

Monday, March 9, 2015

Ten Seconds of Kindness

Some of the better moments of my parenting life have boiled down to this.  Someone took ten seconds out of their lives to help us out.  To accommodate us.  To include my kiddo.

A simple gesture like the teenager that broke from her gaggle of friends to hold open the door for me when I was carrying/dragging the melting down Kiddo from the mall. She probably went right back to her friends and her life but it made all the difference to me. Two years later, I'm still thinking about her.

"Hang on.  Let me see what I can do."  I've hear this statement a lot when advocating for my kiddo.  Sometimes they come back and they can do something. Sometimes not.  Either way, they are trying.  I appreciate the effort regardless of the outcome.  They are taking ten seconds out of their day for me.

Imagine what you could do with ten seconds for someone else. It is so easy in this autism life to dwell in all the times we have been shunned, scorned and screwed over by folks.  What would happen if we all shifted that attitude over to ten seconds of kindness?  Not just helping each other out BUT everyone.

What if ten seconds of kindness meant accepting when something couldn't be done for us the way we asked?  What if we took that energy of just getting angry and channeled it into looking for a compromise?

What if we just accepted that people ask for help in different ways because their needs are different?  What if we didn't shun what they saw as solutions simply because it wouldn't work for us?

What if we all just took ten seconds to take some deep breaths and chill the Hell out a bit?

Saturday, February 28, 2015

Autism Rerun

We just wrapped up the Kiddo's IEP and the OT couldn't make the meeting.  I asked for her to call and she did the very next day.  I'm pretty sure by the end of the conversation she had wished she wasn't so prompt with getting back to me.

The Kiddo's constant need to be in motion and scripting has leveled up.  Big time.  I needed some ideas.  Ones I haven't tried before that might help with his sensory needs.  My bag of tricks was turned inside out.  I needed to bring in the big guns with her all her fancy learning and degrees. I sat back and waited to be startled by her insight and suggestions.

Except I wasn't.

She started to rattle off her brand spanking new ideas and I had autism deja vu.  It was pretty much like listening to Don Pardo announce "The following is an encore presentation of your ASD child's therapy treatment plan."  The greatest hits of what we have done already with him and I just sighed.  Loudly.  (I"m Irish.  We could medal in that category.)

I can tell she's getting flustered that I am not responding with more enthusiasm.  It's hard though to be enthusiastic when you have been there.  Done that.  Sent the freaking postcard and bought the sensory friendly no seams t-shirt.

I'm not a know it all.  Far from it.  That's why I'm asking for help.  I'm also not going to lie and pretend we haven't done something and the results were basically "Pfffffft!' I was kind of hoping her bag of tricks would be a bit deeper. Maybe have some secret compartments that mine did not.

I'm not saying that I wouldn't be willing to try some of these again.  Heck, the first time we did feeding therapy the results fell flat.  Now the Kiddo is really rocking it.  It's entirely possible that with some maturity and time, one of these might be awesome.

I just wish she would of been honest and be like "Dude, I got nothing else."  I could respect that.  I also respect that she's trying to come across as together and hopeful.   But I almost want her to be like "Damn girl. This is it."  Just acknowledge that this is where we are stuck.

I'm just starting to feel like my life with this autism stuff is one giant rerun and I'd really like some new episodes.  I can't change the channel.  I can't find the remote. I want to hit "next episode" but autism isn't Netflix.

So now we get to pick one that we want to try again.  Here goes nothing.  Stay tuned for director's commentary.  I'm going to have loads to share.