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Tuesday, October 28, 2014

From A to Z

This week at French Fry Inc. we added another set of letters to the mix.  OCD (Obsessive Compulsive Disorder).  I can't really say I am surprised. This is pretty common with kids with ASD. Yay, we're just like the other cool kids!  We hopped on the ritual bandwagon.

I pretty much felt that these letters were going to be brought up when we went for our annual check in with the developmental pediatrician. Once it was said aloud though by the doctor, well I will admit to feeling a little sad.  It's just another set of letters connected to my kiddo. I'm kind of convinced we're collecting all twenty six letters of the alphabet with this autism life.  All lined up nearly in a row because Hello, autism.

The scripting is controlling his life.  I now see him having to touch everything when he enters and leaves a room. A knocking of his knuckles on the hallway a certain number of times and if he doesn't do it he will circle back and walk down the hall again to get those knocks in.  And let me tell ya, those meltdowns I have seen are starting to make a lot more sense now.  Well at least the triggers to them.  I still don't get why he has to say "Uncle Riiiiiich" in this loud semi growling voice no less than 946 times in a row.

I've always been kind of cool about the stim behaviors. He needs to pace up and down the hall after school for a few minutes? Fine by me.  Have at it. We all have our ways to cope.  It's like some of these behaviors have really amped up and are just taking over his life.  It's kind of breaking my heart when I see him like that.

The doctor suggested another medication and we're going to give it a go. Prozac. Yep, just like his dear old mom. I wonder if I can get it in bulk at Costco. I'm hopeful it will help.  At the same time this is the third medication my kid will have to be on. For some reason, this is really chapping my ass. Three medications. Just to be able to function.  Just to be a ten year old boy.  This is where I sit there and wonder about those folks who say "Autism is a gift.".  Really?  I'm not sure what kind of autism you mean here. The one I'm seeing, yeah I'm not getting the whole wrapped up in a bow thing.

I see my kiddo struggling.  A lot. I love him. Quirks and all. I'm just not a fan of the ones that seem to paralyze him.  That stop him from just being in the moment. Life is pretty awesome and I hate to think he's missing it because he's so wrapped up in anxiety and sadness.

Just picked up the medication. Oh the fun of hunting down the liquid version of it because he still has huge amounts of anxiety over putting a pill anywhere near his mouth, let alone in it.  I see the pharmacy has slapped on warning stickers not to operate heavy machinery until we see how his body reacts to it.  Does the iPad count? Oh and not to drink alcohol.  OK, note to self, my ten year old can't go to happy hour at the bar tonight.

Thank God I know I can have a glass of something tonight.  I'm gonna need it.

Wednesday, October 22, 2014

A few little bits of awesome

It's been an expensive week here at French Fry Inc.  First, the furnace decides it doesn't need to work on a cold Monday morning.  Then, I have to schedule my car to get a big repair done.  Finally, the iPad aka THE LOVE OF MY KIDDO'S LIFE, decided to die.

I'm not going to lie.  I"m barely keeping my head above water but I am prompting myself to remember that while these are problems and legit ones at that, they are also fixable.  Even though we're probably going to eating a lot of Ramen for the next few months.  I'm still going to panic and freak out.  Every now and then I'm going to go hide in my laundry room where my family never goes and play Fat Princess Piece of Cake on my phone and center myself.  I'm going to also list some of the more cooler moments with the Kiddo lately in my head.  That always cheers me up.

1) Yesterday during speech therapy he saw what last Bingo piece he needed to win.  So he tapped into his inner neurotypical 10 year old boy and cheated.  Yep, fixed the game so he could win.  I'm sorry.  I know I shouldn't be laughing at that but dammit that's funny.  What a sneaky son of a gun.  He wasn't subtle about it though.  Did it right in front of the therapist.  No shame.  Just like his Ma!

2) This morning is the dreaded Wednesday.  He hates this day at school. Just can't stand it.  Doesn't like the fact that the gym teacher he loved is no longer there to teach that day like he did last year.  (Selfish teachers and therapists going on with their lives and their careers.  Don't they know they aren't allowed to ever leave till the Kiddo does?)  So what does he try to tell me this morning?  That's it's half day of school and the part that is closed just happens to be the part he hates the most! Isn't that a convenient?  Lying right through his teeth!  That's some problem solving!

3) But my favorite part of the week is strangely during a meltdown. Let me explain.  Sunday the kiddo was bouncing off the walls.  I'm not sure what was going on but he had energy for days.  His impulsive drive was just cranked all the way up.  He decided it would be a really great idea to balance one of our bar stools at the top of a small set of steps and then sit on it.  He then added an extra element of danger to it by then rocking on the stool.  As you can expect this idea did not end well, it ended in tears.  He stumbled down the steps.  Landed on his backside and got a good shock to boot.  All of this happens in the span of like five seconds.  I run to him to make sure he's okay.  He ran and gave me the biggest hug.  Collapsed into my arms crying.  Why is this a big deal?  Because up till now if he hurt himself, he didn't want anyone touching him at all!  He would beat me if I tried.  You know how much that killed me as a Mom?  Like Mom is suppose to swoop right in and hold crying kiddo to my chest and comfort him.  All the sudden now he wants me to do that??  Holy cow Kiddo!  I'm so glad you fell!  I get to go with my instincts for a change. It was really nice.

I hang on to these little moments with him with a white knuckle grip.  Sometimes these little steps are the only things that gets me through a hard day.  Hell, who am I kidding here?  A hard hour!  We've come so freaking far.  Yeah, there's a bazillon miles to go but I have these little bits of awesome to hold to keep me company on the road.  I'm always so fearful that one day the progress will just stop.  I try not to let myself think that way but it's always sitting there in the back of my head.  I often wonder does progress have a shelf life?  God I sure hope it doesn't.

All I know is I'm probably the only parent that's taking their kid out of for a side of fries for lying, cheating and crying.  Good job Kiddo.  You made a bad week good again. 

Wednesday, October 15, 2014

Paper gowns and Prozac.

Why is it the blog posts that are the easiest for me to write are the ones that are the hardest to hit "publish"?   I'm going to though.  I want to talk about this.  Here we go.

This is a little tale from me about the time my Pap smear became a talk about Prozac. 

I will admit it.  There are times I do not talk about autism or our connection to it at all.  Mainly because where or what I am doing does not warrant a need for discussion and I kind of enjoy that now and then.  My eyes and ears are forever focused on all things autism and it's nice to get a little break.  Frankly, I never thought I would be having a discussion about caregiver burnout with my lady bits doctor.  Yet there I was in my paper gown and socks having a good cry about being completely overwhelmed and utterly stressed out.  Having now had an ugly cry in such circumstances, awkward does not even begin to describe it.  

It started out innocently enough.  My doctor is the one that delivered the Kiddo all those years ago.  So she was rather amused to see his name on the school roster where her kid attends.  (She had a baby the year after me.)  We did the chit chat thing where we both pretend it's completely normal for her to examine my boob and talk about the PTA and whatnot.  Then she asked "Oh he's in the same grade as mine? Isn't he older?" and then I have to let the cat out of the bag about why he's in the same grade but really not in a grade actually but just does inclusion subjects with that grade and all the autism stuff came a tumbling out with it. 

And I really did not want to talk about it.  At all.  I wasn't in the mood and at that point in my life barely hanging on with a white knuckle grip.  I didn't feel like being all cheerleader Team Autism Awareness when I was just trying to get my annual done by the gyno.  Since I have no poker face or filter, I guess you could say my rapid fire explanation and sudden change in mood tipped her off I was a tad stressed out.  It then came to a header when she gently suggested I try getting up an hour earlier than the kiddo does in the morning so I could meditate and that is when the dam broke.  

"Get up an hour earlier???  He gets up at 4AM now. You want me up at 3??? Let me tell you something Doc, the only thing I want to be doing at that hour is to be unconscious!"  Cue the tears and a very confused doctor handing me tissues.  

Despite not wanting to raise awareness for living with autism, here I was doing it.  Her next suggestion was I open to trying medication.  It was something I had given thought to previously but like most moms, taking care of myself gets shoved aside.  I knew I had to be healthy to be a good mom.  This includes mental health.  Every person in the Kiddo's life looked to me to keep the momentum going and I wasn't going anywhere at the moment.  I was stuck in the mud.  I needed help.  More than just a simple babysitting break now and then.  More than just a chin wag on the phone with a pal.  Brain chemicals meant big guns.  He was really young and I knew I had a lot of years ahead of me on this path.  If  I had a sinus infection, I would never question taking medication for it.  Why would this be any different?  

Now I won't say that every one should take them.  Not at all.  Different strokes for different folks.  For me, it's helped.  It's just something I need to do.  I am a much better wife and mother on them than off.  (Yes, I tried going off for a while to see and decided that was not a good idea. I prefer not crying every day.  It fogs up my glasses.)   I never really hid this but at the same time I wasn't walking into rooms saying "20mg Prozac in da house!". But I keep seeing so many news stories about caregiver burn out and it frightens me.  It scares me to think that folks are not getting help they need in order to take care of others.  Again, medication won't solve all your problems but it sure can help you get through the day to day grind of it all.   I don't want to be a news headline.  I want to be a mother.  His mother.  The mother he deserves.  

So even if you think "I don't have time.", you do.  Make it.  Nothing is more important than you if you are dealing with depression and how to cope.  Even if you are like me and don't go to the doctor unless you are sick, I bet you go to your gyno annual. (Well, my female readers.  Sorry fellas.)  Talk to that doctor.  They can talk about options with you.  You might find yourself feeling awkward talking about this in a paper gown and socks but know I did it too.  We'll be like twinsies.

Why am I even talking about this very embarrassing moment in my life? Because we need to talk about depression and stress.  We need to talk about mental health.  We need to talk about burnout.  We need to not be shamed or made to feel guilty about our feelings.  Raising an autistic child is hard.  One thing improves and and another problem or challenge pops up.  We're forever putting out fires and advocating for our kids all while doing it in on little to no sleep.   We cannot let the idea continue that we are these blessed saints chosen to be these kids parents because we never lose our cool.  We are no different than any other person on the planet.  We screw up, we yell, and yes, we even get depressed.

We need to advocate for ourselves just as much as we do for our kids or we are no help to them at all.  A side of fries can only do so much. 

Monday, October 6, 2014

WTF Wednesdays

I'll get right to the point here.  Every Wednesday at school the kiddo is losing his shit.  Lots of scripting.  Lots of waxing nostalgic of meltdowns he's had previously.  So much crying and I don't have a clue as to why this is happen.

The teacher and I have been emailing a lot.  I'm asking questions.  She's asking too. There's a lot of information on the table about this but for now there is no clear pattern.   He's happy and content getting ready for school in the morning.  Skips to the bus with barely a glance to me and off he goes.

One could say "Well this is on the school's watch.  How are you suppose to know?"  But this is autism. Even when he's not with me, he's with me. I'm never not on duty.

It could be something as simple as he doesn't like a certain subject that happens at school that day.  It could be something as the bus takes a different route to school on Wednesdays that sets him off. Or it could be he often gets so fixated on routines and schedules that he is simply stuck.  Twenty five Wednesdays ago he might of had a bad day. All the sudden now he feels the need to recreate that meltdown like some sort of autism historical reenactor. The most frustrating part of this is I won't find out just by asking "Dude,wtf?" like a typical parent/kid exchange might go.   (OK, it would be a cleaner version of that but you know what I mean.)

It's pretty much Blues Clues without the clues or a handy dandy notebook.  It's Tired Mom who's had it being Sensory Sherlock with a smartphone.

Is it a subject?  Is it the principal's color of his tie?  Is it the humming buzz of the school's furnace kicking in?  Even if I do figure it out, he still has to learn to deal with it.  As much as I am always advocating for accommodations, sometimes he has to learn to accommodate us too.   Kiddo, I will always try to help but somethings are just beyond my control.  Even though you seem to think the keeper of the password to the Wifi and the iTunes account must be pretty powerful, I do have my limits.

While the kiddo has no problems in the verbal skills department, it's where and how he uses them that provides the challenge.  Plus add a dash or more accurately a full dose of autism and I'm going to have to pry that conversation out of him.  Even then I'm more likely to hear him scripting along to what the gym teacher told his class a week ago.  (Hula Hoop Time!)

This is where autism sucks.  It's not a gift that I can't figure out why he is so unhappy every Wednesday.  This is not some adorable quirk.  My kiddo is miserable and I have no idea why.  As a mom it pretty much feels like having your heart ripped out of your chest and stomped on.

Why can't it just be easy?  Like ever?  Why can't the reason be something like "I'm tired from partying the night before Mom.  You said party night was always Tuesday nights at college cause no one took double course day on Wednesday."  OK, so maybe it would be a little alarming to hear from my ten year old that he was simply too hungover to be upright let alone be a model student that day. Give me something here Kiddo.  I have no idea what's going on and like it or not everyone is going to ask me first what's up your craw.  Good lord, this must be what it feels like to be a PR for Charlie Sheen.

Help me to help you kiddo.  Really.  There's a side of fries and a Yoohoo in it for you.                                            

Saturday, October 4, 2014

6 Ways to keep from losing your Sh*t!

I think the toughest part about parenting is there never a point when you are done.  When I worked outside the home there was a defined "punching out" time.  Hell, you can't even bank on this kid sleeping.  It's pretty much a life of being permanently "on call".  I could be waking up at the butt crack of dawn to make him breakfast or finding out that he was sick during the night and his bedroom looked like he recreated Exorcist movie in his room and then went back to sleep.  (Which he's done. Twice.)

Life decided to throw me a curve ball or in autism's case, a series of neatly lined up ones.  Autism cranked up our lives to "11".   Congrats Mama Fry!  You just got through twenty months of sleep deprivation, spit up, diapers and hormonal mood swings.  You just LEVELED UP!  

I can't say I'm good at this but I don't think I suck at it either.  Some of you seem to be under the impression that bloggers have their sh*t together, especially the autism ones. That could not be farther from the truth.  Have you met some of us?  We're like five gallons of crazy in a two gallon bucket.  I mean I'm sharing my dirty details here.  Clearly something is a tad off with me.  ;-)  However, since I have a little autism tenure and you seem to not question my autism street cred, here's my list of ways to keep from loosing your sh*t.

1) Accept you have already lost your shit.  
It's already gone.  You are no longer balancing it, afraid you might drop all your balls.  Unless you are a professional juggler, then maybe you can keep them up there a little while longer but even they get tired and stop.  At the point you are at right now reading this you have already cried your eyes out, screamed, raged at the deity of your choice, prayed to them, bargain for anything to just make life "normal" again, ate your feelings, drank them too etc... You see where I'm going with this.  So the hang up of not loosing it, channel your inner Elsa, and let it go

2) Accept that you will have many more mini breakdowns over this. 
It's actually quite freeing to really loose it.  I call it the "ugly cry cleanse'.  Scream in the pillow.  Beat it up too. Throw your pity parties for one.

3) Realize the sh*t you are trying not to loose is in fact sh*t that makes you sad. 
 Forget about worrying about loosing your sh*t for a moment.  Let's just acknowledge for a moment just how hard this sh*t is.  It's ridiculous what we go through on any given day.  I'm not just talking about our kids and their more challenging behaviors here.  I'm talking about all the stuff we deal with day in, day out.  Appointments, teachers, random looks or comments from strangers.  It adds up.   Allow yourself the acknowledge those super sad feelings.  They suck.  I'm not going to lie about that.  I'm not going to ignore them either.

4) Ask for help.
You remember all those nice family or friends at the start of all this stuff that said "If there is anything I can do to help..." Call those favors in. Now don't expect them to show up solving all your problems but maybe you need to share your sh*t with a friendly ear.  Maybe they can watch your kid for a few hours while you take a walk.  Or go to the doctor and have that nice friendly medical professional suggest what's a good anti depressant to take.  Then go fill that prescription and try it because if it was any other part of your body having a hard time right now you would not hesitate to take a medication for it. Hate to break it to you Honey but there is no prize for "Most Stoic" here.  Ask for help.

5) Allow yourself to screw it up.  
Guess what?  Something your researched, something that was suggested to you to do for your kid, it's wrong!  If you're really lucky, some day your kid will grow up and ask you "WTF???" about it.  That's just the way this sh*t rolls.   We follow our gut instinct and do the best we can with what we have.  Sometimes that is still not enough and we don't know that right away.  Sh*t happens!

6) You didn't really loose your sh*t.  You just misplaced it.
Take a deep breath.  Clear your mind.  Where did you last see your sh*t? Call it a do over and just try again. With this sh*t, it's all we can do.  :-)


Monday, September 29, 2014

5 Questions I Keep Getting Asked About Autism

Maybe it's because my Kiddo is ten and I've been doing this a while now.  Maybe it's because I have this Facebook page and folks think my autism tenure is "official".  Or maybe it's because I'm just a loud mouth and have no problem sharing my opinions even when I haven't been asked.  No matter the case, I have been a walking Autism Help desk for some time.  It's kind of like the Apple Genius Bar except I actually have a real bar in my family room and I've been tempted to bring a flask to an IEP.  (Can you imagine that drinking game? Everyone takes a shot when someone says "appropriate". I'd need a new liver by the end of it.)

All the same, I get many "Frequently Asked Questions" and I thought "Hey, that's some good blog fodder right there! I have to write something snarky and funny again because my posts have been some downers lately." 

1) What do you do when your child melts down in public and you get that look or people say rude things?  

The good old communication mantra of "First this. Then that.", applies best here.  First, get the Hell out of Dodge or Target or Burger King or wherever. Then, screw 'em.  Seriously, do you have the time to give a flying f here?  Nope, your kid needs you.  I'm all for standing up and advocating for my kid, when I can do so successfully.  That won't happen when I'm trying to talk over his screaming or preventing him from finding out which piece of furniture is most aerodynamic.  Just go home and forget about those people. I can guarantee those people have forgotten about you five minutes after you left. 

2) How do you get the Kiddo's teachers/therapist to talk to you so much?  I never hear anything about what goes on at school.

Well mainly, I am incredibly nosy and gladly declare myself as a "PITA" aka Pain In The Ass.  The communication notebook is the first step and if your kid gets additional services through the school, get one of those going for each of those folks too.  Be it a notebook, email, once of month report.  Yes, you can get that written in the IEP.  We had to do that for an OT that no longer works at my son's school.  I never heard from her.  She never came to IEP meetings.  For three years.  I had enough.  I had a monthly phone call/hand written report put in.  Never be afraid or think "OH I don't want to be a bother."  Squeaky wheel Fries! Squeaky wheel.  Also, it's a modern world and pretty much everyone has a smartphone.  I find emails work really well with my kiddo's teacher.  I can fire one off at night during a commercial break for The Big Bang Theory and wouldn't ya know it I usually get a response by the time the show is done.  Everyone is checking their emails.

3) Don't you worry about his diet?  Why don't you do gluten free/ casein free?

I'm a mom.  I will always worry about my kiddo.  That's a given.  As for what he eats, I'm just grateful anytime he does actually eat.  I'm not so picky anymore about what is getting in his mouth.  Just as long as it's food and not the charger cord to the iPad or whatnot.  As for the diets, GF/CF didn't work for us.  That's great if it did for you but it didn't do squat for the Kiddo. At his worst, he was down to about three solid foods.  I'm going to take two of them away?  Fugetaboutit! His sensory issues with food trumps dietary restrictions.  He's finally eating more and I hope to keep it that way.

4) My kid is four and not potty trained.  What do I do?

Hate to burst your bubble sweet cheeks but they will probably not be trained by four, five or six.  This is autism.  All standard rules about children and milestones no longer apply.  Remember, it was your kid not meeting milestones that probably first got you on this road to finding out about their autism.  This not meeting age appropriate milestones continues.  Yeah, it sucks.  I still deal with reminding my son to go poop and we wake up to wet sheets still quite a bit. The more you push, the worst you will make it.  Chill the Hell out and yes, ask the school for help.  Of course you can get that in the IEP.  They have your kids for six and a half hours a day.  Adding in a toilet routine is no big thing.  Just remember it is just going to take way more time.

5) Oh I would never do that. Why do you do/think/feel...

Oh really? Never say never.  I used to say that too sport.  One thing I have learned is that I know nothing.  I can have an opinion one day and it can change the next.  Perhaps your kid isn't the only one that's a bit rigid.  M'kay?  I know lots of things are set in stone but not everything.  Opinions change.

Now what does Mama Fry always say?  You do you!  Remember that above all else.  :-)

Tuesday, September 23, 2014

It sneaks up on ya.

My nephew is a freshman in high school this year.  The same kid I used to sit on my mom's kitchen table "lazy Susan" and spin him like a ride is now about a head taller than me.  Despite a deep voice and the start of a mustache, it was the picture of him in his marching band uniform that made me squeal with delight.  He is so stinking cute in it!  Mama Fry was a choir/theater kid.  It's nice to see that popping up in the next generation. I can't help but be proud of him.

And that's when it sneaks up on me.

It was the simple comment made at a family gathering for his birthday.  Being in marching band was a good resume builder for college applications.  Of course I agreed.  It is and it's never too soon to start thinking about that.  Except we won't be.  College isn't in the cards for us.  I don't think I would mind that so much if I had a more firm idea of what would be in the cards for us.  That's still very much a great area of unknown.

Yeah, he'll probably get a job.  I have no idea what and all I really want it to be is something he likes doing.  He does enjoy helping out around here and his smile of pride in himself is a mile wide.  I will be proud when I see him so proud.

But I can't help but wonder how many more conversations I will have with other parents where I just nod my head knowingly to their concerns and topics about their kids when inside I'm really kind of faking it.  It's simply not my world.  Of course, when I start talking about ours, I'm sure they are doing the same thing.

Sure, what they have going on is valid stuff.  No contest winner here for most worried parent.  Plus, when I'm talking to these people about their kids of course I want them to do well in life.  I am happy with their joys as much as they are in ours.  It just still sneaks up on me how different our worlds are all the time still.  I love watching my nephew's videos of his marching band play.  I love watching his younger sister act exactly like me when I was that age much to my brother's chagrin.  (Stock up on beer now Bro.  You know what the teen years are going to be like.)

I guess I'm just a little weary of just walking along and then all the sudden it's like autism runs up and smacks me upside the head and then runs off again.  If you are ever wondering why I am so spacey,  it's not just the sleep deprivation. I'm just trying to remember my lines while switching off the autism 24/7 part of my brain.  You see, I often don't remember what road we were suppose to be on because my tour guide didn't come with a map or a GPS, despite an ability to remember every exit we have ever taken on a road trip plus where it leads.  So pardon me if I grow quiet as I gather my thoughts.  I didn't duck and autism slapped me.  Talk amoung yourselves as I shake it off.  I'll catch up!

(Seriously though, to my brother.  I see her dating musicians.  Be afraid.  Be very afraid.)