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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". :-) 

Tuesday, September 2, 2014

Running on Empty

"Running on - running on empty
Running on - running blind

Running on - running into the sun

But I'm running behind"   Jackson Browne 

I've said it before. I don't have the "Mommy Mopes" about summer ending and school starting.  I have more the "Dear Lord, If I slipped the van driver a fifty, do you think she would pick him up a day earlier?" gene.  I don't wax nostalgic on my social media about how sad I will be to see him go to school. I don't cry at the bus as he boards.  I'm the Mom who's singing show tunes and dancing in the street in her pajamas and slippers.  Goodbye, Good Luck, Get OUT! 

Hmmm, I sound rather heartless don't I?  Well if you want me to be more heart full, I need a muthatruckin' break from my kiddo.  Yes, I know school is not babysitter blah blah blah... I don't expect it to be, not in the beginning of the year but let's be real here. You all know that last week in June they are phoning it in.  Folks at my kid's school who may be reading, don't get your knickers in a twist me saying this. You forget I used to work in a school.  It's okay.  I'm actually fine with it because seeing as my kiddo is an only child, the socialization alone is worth him going in those last few days too.   Plus, I really do need to soak up as much quiet as I can for the months ahead.  

This summer was an effing doozy.  I really don't know what else to call it.  We were busy and some really cool stuff did happen.  Like the kiddo finally getting the boot out of our bed.   It cost us buying a TV for his room that's nicer than the one in my own room but I say it was worth it.  We still have nights of him getting up and trying to wiggle his way in but he's accepted the fact I will zombie walk him back to his room, tuck him in and leave.  No middle of the night meltdown, I'll take it.  Some nights he doesn't even do that at all but I seem to stay up anyway waiting for him to come in just the same.  I don't suggest that.  In fact I'd really like my brain to stop thinking that will happen.  I'd really like to sleep.  I'm also confused by the fact I am getting up in the same place I went to sleep but I can't say I miss sleeping with Lighting McQueen and Tow Mater.  This husband guy I spend the night with now seems nice.

The anxiety though, that's gonna be my undoing.  His and my own.  I get it. He feels his safest with me.  He knows he can let it all hang out. He knows no matter how out of control he acts, I'll still love the adorable little sonofagun more than life itself.  I do. It's true.  I know I don't share pictures of him but trust me. My kiddo is seriously good looking.  Like Derek Zoolander "Blue Steel" male model handsome.  I don't know how anything that good looking came out of me to be honest.  We are at a point this summer where I would rather be Naomi Campbell's assistant diving from flying cell phones than take another day of his diva antics.  Yes, I am calling it like I see it.  My son IS a diva.  That freaks me out because I can't always be there to pick up the pieces and do the damage control.  It some ways maybe it's better he saves the meltdowns for me because I wouldn't know where to start if he was doing them for everyone else.

I have to be honest.  Living with autism in this house is hard.  Very, very hard.  I often feel like I'm running on fumes and walking on eggshells.  Sometimes I'm so tired of it.  It's not always the special gift from above.  It's not a shower of unicorn kisses.  It's not a puffy cloud of angels singing.  Sometimes it's a lamp being thrown at you.  It's pets that sigh when they hear the familiar start of a meltdown and hide from the wrath of the kiddo.  I have to juggle checking my anger that my latest purchase from Target just went airborne while making sure the kiddo is safe.  I have to calmly talk him down while talking myself down that this too shall pass.

Every start of the new school year I do get nervous when I wonder "What has he lost this summer?  What will the teacher email me about?  Will I get a dreaded phone call?"  The summertime regression BLOWS.  No other way to describe that.  I feel we are always behind on something that we now need to cram and catch up.  What are we not learning because we are too busy relearning what we lost?

All I know is come Thursday, the toughest choice I am going to have to make is what color to put on my toes when I go get a pedicure.  Hmmm, maybe I ought to wait a few days on that.  The nail shop will have a ton of other tired mommies who will feel compelled to be social and want to talk about their glorious summers and how sad they are see their kids back in school.  No wait, I have my ear buds and my phone.  Sorry gals, Mama Fry will be on a sensory break.  Talk amongst yourselves. Mame needs to refuel with a foot massage and some Jackson Browne.  

Tuesday, August 26, 2014

I have the best intentions.

"Oh my god! What if he reads this?  How can you write about your son like this?  Have you no respect for his privacy?"

Actually I do, you dirty pirate hooker.  Ever see his name or his picture on here?  Yeah, didn't think so.  So you can go have a seat over on the wench bench because I don't want to hear it. Get comfy. I have a few things to say about all this autism stuff.  You see, I have the best intentions with how I parent my kiddo and that's good enough for me.

I have fantasies of my son finding this blog and being pissed.  Rip roaring mad at me.  Yes, I would love him to be angry about it.  I would love him to feel embarrassed that I have talked about his poop.  Right now though, where he is, I'm not sure that he's ever going to understand or care what's being talked about in this blog.  Frankly if he did, I'd be freaking thrilled.  It would mean he is doing pretty damn well in his life.   So yeah, I'll take that risk.  This isn't about me talking about him behind his back.  This is about sharing our story so others can see what a real like autism house looks like inside.   If you don't like what it looks like to you, leave.

I have the best intentions when I take my son to feeding therapy.  Don't you dare tell me I haven't listened to what his needs are and what he would prefer to eat.  Hello? Look at the name of this blog for crying out loud! Trust me, I have listened FOR YEARS.  While others run out to the store before a snow storm for bread, milk and eggs, I am clearing the freezer section of microwave fries out.  I know we are about to dive into some serious cabin fever.  This is one way I can help him feel better about that. By the same time though, there is basic nutrition a growing boy needs, PERIOD.  So yeah, I'm going to do something wild like introduce a protein that isn't breaded and battered.  This isn't a case of him eating when he is hungry because guess what? He won't! I've watched him starve himself.  I have watched him dehydrate himself and seen the effects of low blood sugar. Feel free to have your opinion that it's not necessary or I'm forcing foods on him.  This is just the way biology works.  Sorry, the world cannot accommodate him by making french fries filled with all the vitamins a growing healthy boy could need.

I have the best intentions when I push him outside of his comfort zone.  It's not to accommodate me.  It's just something I have to do.  It's just something he has to do.  There are things in this world that cannot be avoided.  There are haircuts to be had.  Nails to be trimmed.  Clothes to be worn.  I will do my best to accommodate him with these activities but they will still happen.  So sorry Captain Pantless, grab a pair of jeans.  You're not going to school naked.  Your nails won't be longer than my own and your hair will be cut.  Like it or not.  There are social conventions that one must do.  As for style of hair, that's up to me till your eighteen.  Think I'm kidding? Nope, I'm not.  Even then if you grow it out long, I will bug you about it kiddo just like my grandmother did to my uncle her whole life.  That's just motherhood for ya.  Deal with it.

You see, my intentions are to prepare this kiddo of mine well enough that he can be ready for life as an adult.  I want him to have meaningful employment and maybe even live out on his own.  I'm not really sure that's going to happen right now but he's proved me wrong before.  So maybe he will.   I won't always be there and the IEP and it's accommodations only last so long.  There's a lot in this life he will just have to learn how to handle.  Life isn't always fair.  I'm all about giving him the tools to help him but bumps in the road will happen.  I have the best intentions to raise a kind child and one that other's don't think is a brat.

I have the best intentions every morning when I wake up and every night as I fall asleep.  There's never a thought that doesn't include him in the equation.  I accept my intentions might not always work out well but I do intend to keep trying for him, for me and for us.

Tuesday, August 19, 2014

Two steps forward, one step back.

"Hon, we need to talk about Kiddo.  I think we have to call the doctor.  Maybe discuss medication changes.  Or consult with a behavior therapist..."

I have the same exact conversation with my husband this time every single August.  Summertime regression has once again reared it's ugly head and I'm really thinking I need to be smart and apply for next August off so I don't have to watch it again.  The plot just does not change at all. I'm really tired of being exhausted, worn out, mentally drained, spiritually crushed and heartbroken. Because it's every damn summer.

I know. I know. School.  Change of routine. All this time off.  The start of tween years and the angst that comes with it.  Yadda, yadda, yadda, I should not be surprised.  Knowing all of this makes it no better.

We decided to do a little road trip.  Clearly the husband either got me drunk or struck when I was having some "autism amnesia" to agree to this after the "Hottest week of June on record and a car air conditioner that died incident".   He sworn it would be fun.  He sworn he got the car fixed.  He convinced me that it would be fun.  That it would be a break and something to do with the long rest of break ahead.  I wouldn't have to cook, clean, do the therapy juggle and keep the kiddo entertained for a few days.  Plus I started see all the folks in the my circle do their own end of summer quick before the kids go back to school plans and I was all "Me too! Me too!"

The drive here wasn't too bad.  Six hours long and only got HELLISH the last hour.  OK I could almost deal with that but every car ride since the Kiddo has been stuck on HELLISH.  He doesn't want to leave the hotel room which kind of defeats the point of getting away when you don't go further than a single room.  He's not eating very well if at all.  We had a really good period of introducing new foods and he was really getting better.  This has come to a screeching halt.  I just sit there thinking about all the time and money we've spent on feeding therapy.  Did this just send it down the drain?

He's scripting like crazy. Beyond the usual for him.  He's just not very present and it's like pulling teeth to get him to have any sort of functional language exchange.  I don't expect a spirited debate about the 2016 presidential election but hearing nothing but mixed up random bits and pieces of words strung together non stop is making my ears cramp.

I think the final straw for me was tonight in the hotel pool.  Trying to wind him down for the night and he's literally pacing in the water.  Pacing in general is his thing.  It's his way to cope with the world.  I don't usually care when he does it. He's regulating himself.  However seeing him need to do it in the pool, that sent me over the edge.  The pool is his happy place.  The fact that he can't even feel relaxed in it breaks me.  I am kicking myself that I have even taken him on this trip.

Now do I just hold on for the next few weeks?  Get him started with a full day of school in September where we have that beautiful long stretch of school till about early November without any breaks.  We make a lot of progress during that time.  We always have.  I have to hold onto that fault.  Of course the other half of me is thinking is some of the progress we will make just be getting him back to where he was before he slipped back.  I feel like I'm dancing back and forth with him all the time.  Do I call the doctor?  Do I call the caseworker?  Do I call my own doctor and get my own medication adjusted?

One more day here.  I suspect it will be loads of preparing him to leave the hotel.  Then we will run through a historical place at a breakneck speed.  We might get him to stop for five minutes and eat a cookie if we are lucky.  Then will start the daily meltdown/panic attack to return to the hotel ASAP.

This vacation stuff, who's it suppose to be relaxing to again?