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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.)

Tuesday, September 16, 2014

Mo' Progress. Mo' Problems.

Do you ever do this?  Your kiddo finally does something really amazing.  A thing you, the teacher, a therapist etc... has been working on with them FOREVER.  They finally do it.  You're in that sweet spot of being on top of the world over it and then BOOM! Along with this new found skill suddenly comes challenges and problems you could never of imagined.  Then you voice your frustration.  Be it online or with another parent who has a special needs child and you get a met with "Well at least your child can (fill in the bland with the skill of your choice)".  So then you get to juggle the feelings of excitement, frustration, and guilt all at once.  It's awesome! NOT!

Hey, I'm not looking a gift horse in the mouth here.  Progress is awesome but it far from perfect.  All feelings are valid but let me tell you something.  No one wins here.  No one.  There is no gold medal. There is no year supply of turtle wax.  No one pins a crown on your head.  Trust me if that was the case, don't you think I'd be rocking that look by now if there was?  Mama loves an accessory or ten. 

You see there is a double edge sword to progress.   It's not "Victory!"  and it's over.  All it's doing is introducing you to your next nemesis.  Allow me to share with you some of our progress and before you whip out that sad trombone to rain on my autism challenge parade, hear me out.  

Yes, the Kiddo is talking.  A lot more than he used to be able too. Don't get me wrong.  Having him be able to tell me "Want fries!" is a big improvement than just tons of screaming while I tried to figure out what the Hell he wanted.  However, I would say 90% of his talking is scripting/echolalia.  Really, how functional is it?  Not much.  He's probably almost always going to need someone to prompt him along in a conversation.  Otherwise he will be that adult you see one day having a conversation with himself.  Listen close, I bet you'll hear him quoting Lighting McQueen or Thomas the Tank Engine.    So yeah, I get it.  Your kid isn't talking. Yes, those feelings you have are valid but realize my situation isn't perfect here.  Especially when my kiddo is yelling "MONKEY BUTT" for 73935 time today.  

Great, he can tell time.  Yes, that's been handy.  Especially with getting up in the morning.  He knows the rule is he can't wake us up till 6am and he's been sticking with it. Even though I often wake to the sounds of him doing the countdown in the next room. (5:56! 5:57!)  However with this came an extra dose of anxiety.  If I thought he wasn't flexible about the schedule before, it's even worse now.   Trying to add something or change the order?  I bet hostage negotiators have an easier job than I do.   This ability which I thought would lesson his worry about the schedule has only made magnified.  

Your kid never wants to leave the house and would be content to play minecraft or video games all day.  Mine never wants to be home.  We are forever planning the next outing.  I am at least now able to schedule "home time" because he understands telling time like I said above.  However, like I said before, this is usually the kiddo walking back and forth in front of clock counting down the minutes till the time comes for the next outing.  Plus his running to get in my face to be reassured no less than 539 times that the next event will take place at the time planned.  Why yes, it's most restful.  I kind of wish he would get lost in a video game.  I know, I know.  What's this piece all about?  But honestly, you get what I mean.  I just want a break for a moment.  I would like him to play the Wii and me not have to dust it.  

My kiddo loves a party. Any gathering.  Going to some one else's house? Even better.  He's incredibly nosy and will look through all your rooms and stuff.  Now I love thinking the party doesn't start till we Fries walk in, I also know it's like walking around with a live grenade.  We're walking in blind to potential danger and triggers.  I'm not really sure what might set the kiddo off and then I find myself pulling a move out of his book with one eye on the clock, counting down every minute.  Finally when enough time has passed for it be socially acceptable to leave, I think we are all kind of relieved by that it's over.  

I know I should not complain about what he can do anymore than I should about what he can't.  I'm not perfect though and I find a good whine now and then is good for the soul.  Just remember that before you jump on my case for complaining there is probably something your kid has done recently that brought you joy and then new pain.  

Tuesday, September 9, 2014

I don't care what causes autism

I have a confession to make.  Are you sitting down?  Okay, here it goes.

I don't care what caused my kid to have autism.  Not one bit.  (Cue the dramatic music and GASP!) 

I don't give one flying fig why my kiddo is autistic.  It's just is what it is.  I don't need someone or thing to blame.  I don't need "closure".  I may need a nap but I don't need to know the kit and caboodle and all that autistic jazz.  To paraphrase Bob Seger here, I have "turned the page". 

Why this self centered attitude?  Simple, it's survival.  I have a lot of shit to do and I"m going to leave science to science.  None of those researchers every come here and start a load of laundry and empty the dishwasher.  So I'll let them do their jobs and use Google for researching new Crock Pot recipes as therapies for the kiddo are always around the dinner hour.  (Oh this chicken recipe has bacon in it. It's got to be a winner!)  

What about the other future families you may wonder?  Yes, I get what you are saying.  I have known a few families now that have become members of Club Spectrum.  It's hard to see it happen to those you care about and Hallmark has yet to make a greeting card suitable for the occasion.  At the same time, I can't take that all on too.  I'd rather just tunnel vision on doing what I got to do for my kiddo.  I'm all about helping out others and sharing basic tips.  Don't get me wrong.  I just think it's way better for any parent's psyche to spend twenty minutes shooting the breeze over the game last night or the this season of Boardwalk Empire than having an in-depth  conversation on medical research.  Sometimes we have to turn off the "All autism. All the time." part of our brains because dammit dude, my brain just needs a break.  

The Kiddo is ten. I have bigger fish to fry. We have a middle school transition that is quickly approaching.  Last week I discovered some hair growing on some places on him and he is starting to have teenage boy stink on him by the end of the day.  Puberty is coming and I will need to be sedated the day we have to figure out how to shave his face.  I can't even get this kid to trim his toe nails without having to sneak it in while he sleeps.  Can I shave him as he sleeps? Is that doable?   He still  can barely write his name.  You want me to read a hundred different articles and blogs online that folks keep sending me to see about what caused autism to show up?   That has to take a number.  He's growing rapidly here and I have too much to worry about than adding that.  Hell I can't even remember to take out something to defrost for dinner much less figure out when I can comb through miles of medical research on this subject.  My family can't eat research.   

So I am sorry if the question what caused your child's autism is still knocking at your door.  I just decided to close the door on that subject and I've been a lot happier for it.  Despite a life filled with routines and schedules, more freedom came with that choice too. I'm not saying for you to do it.  I'm not saying this is the only way of thinking that is right.  Like we say in Jersey, "You do you."  Just be open to the idea of shifting your energy off this one thing.  You might just thank me for it.

I accept cash donations as "thank yous". :-)