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.

Wednesday, February 18, 2015

Ten tips for taking them out to eat.

Yes, you can take them out.  No, stop right there with your thinking, "Oh, her kiddo is probably higher functioning than mine.".  It is completely possible. Let's face it.  Babysitters are mythical creatures for autism parents.  Not a lot of us have them and even if you do, they are HELLA expensive Yo!  It just takes a tad bit of planning.  (Doesn't it always?)

1) Know your audience.  This is not when you get to try the new fancy fusion foodie place.  I don't call this blog Autism with a side of fries for nothing!  Many a meal getting outing has been at eateries with a drive through window.   I would ask for my food to go and then try to eat it there.  If the crap hit the fan, I could pack up and jet fast.   Eventually you might be able to swing going to a deli, pizza place, diner or a bar and grille family type place.  Fast food though is the best and safest start.

2) Feed them first. Have you seen them hungry?  It's not pretty is it? This isn't about getting your money's worth on the dining experience.  This is about teaching them how to wait.  Let's not add hungry to that mix.

3) Bring more food with you. Chances are you will order them something you THINK they might eat and then when it comes, THEY WON'T!  Autism is fun like that.

4) Prep them.  This is a job for a social story! Keep it simple.  Tell them what to except.

5) Bring your electronics and screw anyone that rolls their eyes at you for having an iPad or whatnot out.  The ones that claim when they were young they didn't have such things.  Yeah, I call bullshite on that.  If your parents could have figured out a way to drag the Artari 2600 with them to keep you quiet for 20 minutes so they could sort of feel like couple on a date, THEY WOULD HAVE!  Remember, we are the generation who's moms dropped you off at the video arcade at the mall for the free babysitting while they went to Macy's for new sheets. Times have changed. You work with what you got.  Charge them up!

6) Become a regular.  Chances are, your kiddo loves a routine just as much as mine.  Use it to your advantage and become a beloved loyal customer. Kiddo is especially good at charming wait staff by being adorable.  Last week at the diner, the waitress brought a large chocolate milk to him as soon as she saw us come in.  She knows his "usual."  She knows to put in his hot dog and fries order right away and bring it out ASAP while Mom and Dad are having their cup of soup.

7) Tip well.  If you can afford to do so.  I don't know about you, but you can always tell where my kiddo sat at the table by the amount of food under it.  I call it the "Gee, we really made your shift interesting didn't we?" fee.

8) Timing.  Early bird dinners.  Late lunches.  Odd hours are your friend.  Not as crowded.  Not at noisy.  Not as busy.  Often, food specials so you can save a buck or two and put it towards the tip.

9) Go to the bathroom before you leave the house because even though all restaurants have bathrooms, they also have THE ELECTRIC HAND BLOW DRYERS OF DOOM!!!

10) Accept your fate but don't let it defeat your spirit. Some outings will be awesome.  Others, not so much so.  Retreat, lick your wounds, try again. You can do this.  So can they!!!

When all else fails, just order another side of fries. Either for there or to go. ;-)

Tuesday, February 10, 2015

My boy and his uterus

There isn't a parent out there that has not gotten that phone call of shame from the school nurse.  The one where they call you mid day and tell you your kid is sick and you need to come pick them up.  As you drive over there you feel like the world's worst parent because you sent them in sick.  How could you not notice they weren't well?

Pretty much any time my kiddo has been sick, this has been how it started.  It's rare I notice at home that he's unwell. He's so stuck in his routine of going to school that he could be barfing and he would still want to go.  In fact, I really wish he would barf more to indicate he's sick.  It would be a clearer sign to me.  As he does not have the communication skills to tell me "Hey Mom, I don't feel good.  I need to stay home and watch The Price is Right and sip ginger ale all day."

I got a phone call from the nurse.  He didn't have a fever.  He hadn't barfed but he wasn't "himself."  OK, I can get that.  As he is always going at hundred miles an hour, if he's kind of lazy/lethargic, that's not him.  Except he skipped to the bus singing "Feliz Navidad" at the top of his lungs not to two hours earlier.  But these things can come down quick so I ask her what other type of symptoms he's showing to buy a little more time as I have to put on real pants and a bra.

"We asked him if his throat hurt and he said yes."  Rookie mistake nurse.  Are you new here?

My Kiddo is such a people pleaser.  Asking a question in that matter will only get him to answer "yes". They are presenting it in such a way that he's going to say yes because he thinks that's what he should say.  Asking exactly what hurts is better.  Still, I go and get him because I know that's why they are calling me.  Plus, I don't want him sick in school.  I want my baby in pajamas all cuddled on the couch why I try to figure out what's wrong.

Sure enough when I asked him if his throat hurt, he smiled and said "YES!" proudly like he got an answer right on a test. However, this ain't my first rodeo and I need to see if his throat actually hurts or this was accidentally planted into his mind.   So I asked him, "Does you uterus hurt?"  He looked at me and said without hesitation, "YES!"  He then wiped his nose with the back of his hand and I see a trail of snot.  Methinks it's more like a case of the sniffles than he has his period.

Me: "What's bugging you kiddo?"

Him: "Want to lay down with Logan and Maya." (Our two dogs)

So he came home and did just that.  Put on PJ's.  Chilled out in front of the iPad and smeared boogers all over it.

If by any chance you are someone who works with autistic folks and you are reading this right now, do me a solid. How you choose your words is so important.  Please put some thought into them. Yeah, this is just a simple little misunderstanding of what cold symptoms my kiddo is showing.  There's a part of me that looks at this as just another reminder of how flipping vulnerable he is to the power of suggestion.  He's so eager to fit in and get it right.  He'll agree to anything.  That frightens me. It makes me wonder what am I missing because I'm not asking the right questions. Help a sister out here.  Make sure you aren't leading a conversation.  Give them extra time to respond and use some simple speech.

Now pardon me as I go adjust my shopping list.  It seems my son doesn't need tampons and Midol this month after all.