Tuesday, February 25, 2014

When progress bit me on the ass

Cursing. Yep, The Kiddo went there.  I suspect because I often led him there.  I know I did.  My potty mouth is terrible.  For years, I was able to keep it in check at work because they usually frown upon it.  Then I would let out the blue streak out of my mouth as soon as I got in my car and throughout the rest of my day.  Sometimes it just feels damn good to say "Fuck it!"

I'm not working outside the home anymore and I"m a mom now.  I really ought to known better.  I do know better. However, old habits die hard and I don't have a behavior therapist doing ABA on me.  Plus, I took great advantage of the kiddo being completely non verbal for a long time.  Hell, I would of been happy if he said "Shit" when he was first diagnosed.  Especially to this one early intervention therapist who was kind of a stuck up know it all.  She could of used it.   Would of knocked her down a few pegs.  I'm sure there are few parents reading this now who are thinking "I"d be happy if my kid said anything.  Hey, it's language".  Fuck yeah it is!

But let me tell ya something, when it does happen, duuuuuuude.  There's really no other way to describe it.  Last Monday he started saying "It's fucking crazy." and like some sort of autism mom rookie I made the huge mistake of making a big gasp sound.  He got a wonderful shocked reaction out of me and that was all the reinforcer he needed to keep saying it all day long.  Then the most mortifying moment of my life as his mom happened.   He repeated it loud and clear in the PACKED waiting room at speech therapy.  I quickly scolded him but I also knew I was fighting for his attention as several adults were starring  at him with that "Did he just say that???" So now he not only had my reaction, he had about five more adults giving him feedback that this an awesome attention getting behavior! YAY!!  When he went in for his appointment, I went to hide in my car. I couldn't even stay in the room, I felt that ashamed.   Of course, the kiddo decided to test this brand new fantastic sentence on his speech therapist during their appointment.  I like to think she was at least impressed with his articulation.  I mean, it's no "S" blends like "shit" but hey, we're still working on that one. 

So it's emails off to the teacher warning her of this habit.  I had a stern sit down with the kiddo explaining how he couldn't say it and Mommy wasn't going to either.  (Well in my head I will be screaming it but I got to put forth equal effort here) Don't say it in school.  In true literal thinking fashion, he did NOT say it in class or to his teacher.  He did however say it to the school nurse when he went for his meds, his school OT and his school speech therapist.  DANDY!  She sent home what she is doing in class to address it.  I am following it at home. It's gotten better.  I also think though, it's never going to fully go away.  For a kiddo that usually avoids eye contact, he LOVES all eyes on him and he knows this is a way to get that.   To paraphrase the Notorious B.I.G. here. Mo' Speech, Mo' Problems YO!

We managed to get through yesterday's speech session without dropping the F bomb in the waiting room.  I was able to wait in there without feeling like the world's worst mom in America.  It reminded me also I just can't ever assume he won't pick up on a word I say.  That he won't understand the meaning in it.  He knew that saying this way a big deal.  I"m sure with this terrible winter we are having, he heard me referring to all the snow days as "Fucking crazy".  I messed this up so I have to fix it. 

Eh, could of been worse right?  Could of been like this time he managed to get passed the baby gate on our bar and broke a bottle of vermouth on the floor ten minutes before the bus was due to come.  Nothing like sending your kiddo into preschool smelling like a dry martini!

Tuesday, February 18, 2014

Same as it ever was...

Being the woman who is rapidly approaching forty, 80's tunes are my childhood/teen years.  Certain songs have taken on new meaning to me as an adult.  Mainly because I think there were just certain lyrics I just didn't get.  I'm pretty convinced now that Talking Heads must of recorded "Once In A Lifetime" after talking to an ASD mom or dad because of the following line below. If I had a dollar for every time I thought it I could pay off my house, your house and maybe a lot of other houses.  Like an Autism Oprah or something. 

"And you may ask yourself-Well...How did I get here?"

Seriously, some days I just walk around in a fog.  It's not just a sleep deprived one.  This life is so surreal.  Nobody signs up for this and nothing can prepare you for it. Thank god for the well established routines because many days I am working on auto pilot.  I get to the end of my day and realize I have no idea how I got here.  How did I mange to pull off another of this up and down life?  Cause I am guessing as I go here. A lot.  I don't just live in the state of New Jersey.  More like a state of disbelief. 

"And you may tell yourself This is not my beautiful house!"

I am typing this in a living room with no lamps in it because my son has broken all three that are in it.  It's been months and we still haven't replaced them. Part of me even thinks "Why bother? It will just happen again."  I joked with a girlfriend yesterday it means we can't have people over at night to entertain but even that's not true. Entertaining people can sometimes be so overwhelming to the kiddo that we often don't even try.  The build up to the event itself is an anxiety marathon of scripting.  What will happen. Who will be here.  He then obsesses on their behaviors and actions and is annoyed that I can't guarantee what car they will drive here or what hat they will wear.  It's impossible to clean up after him as he returns everything to all the places I just picked things up from. My order is his out of order. Forget ever throwing out any toy without hell to pay. There's no telling when he'll return to an obsession and I don't really want to be without it at 2AM when he desperately needs it in order to sleep. I live in a home where I go to sleep in one bed and wake up in another and consider it normal if I only had to do that once in the night.  

"And you may ask yourself
Am I right?...Am I wrong?
And you may tell yourself

Every day I ask myself this. Every. Damn. Day.  We just stopped private OT for various reasons.  Was it the right call?  Will he regress? Will he be traumatized that he isn't going to get to go anymore? Therapists become our friends now.  Not coaches at little leagues or Den leaders at scouts.  Am I wrong for stopping an activity that we were kind of certain he had hit a wall?   Should I made more sacrifices to try and keep going?  Even though we are shelling out so much freaking money as is on therapies on one income. What about these meds he is on or the food that he eats or the amount of sleep he gets or the soap in the bathroom or the very air we breathe.  I'm convinced daily I have screwed him up beyond repair.  Thanks judgmental Internet trolls who leave comments on my blog or on my facebook page confirming those fears.  Appreciate it! Most be exhausting, having to correct the entire web on their choices.  However do you manage?  

"Same as it ever was...Same as it ever was...Same as it ever was...
Same as it ever was...Same as it ever was...Same as it ever was...
Same as it ever was...Same as it ever was..."

Yeah, David Byrne really gets me.  Gets this this life.  I'd like to buy him a side of fries.  I can resent my kiddo's rigid need of schedules and routines and yet at the same time I would cut a bitch if someone try to mess with the system.  I may not like how our life is sometimes but it doesn't mean I love my kiddo any less.  I get tired of the sameness but need it too.  I'm just guessing here so much and if something works, well, we're keeping things the same as it ever was. :-)


Wednesday, February 12, 2014

Autism Parenting Faux Pas

When I wrote last week, it was to atone for my teaching sins. I got a lot of positive feedback for it.  Quite a few of  you paid me the high compliment that it should be printed out and passed around IEP meetings.  It felt good to come to terms with some of the topics I wrote about and I got some good Oprah like cleansing over my past.

I couldn't help but hear a tiny little voice in the back of my mind saying "But yeah, not all those parents were so great."  Now, while I do have a greater understanding of some of their actions because I now live this life, there were far from perfect moments.  I now know about those "Desperate Acts of Parenting" that they pulled in order to maintain some sense of sanity because they were just at their wit's end.  I don't want to make this an "Us" versus "Them" debate.  I really can't blame everything on the teachers, therapist or case workers because guess what folks?  We screw up too!  All the bloody time. While we are on opposite sides of the IEP. Table, we are all at THE SAME TABLE.  We are all in it together!  We are not enemies more like family. We may fight but like families, we sometimes need to of that and then just brush it off.  Here's a few things you can do or not to help that parent/professional relationship.

1)The Notebook. While I will be quick to say how much it sucks to read a bad note/email or get a negative phone call about my kid and his behavior, it is in fact a necessary evil.  I may not like what I read but I need to know it.  They aren't doing their job if they don't tell us what's going on during the day.  In fact if we didn't get communication from them, we'd probably be bitching about it.  So realize they are just doing the right thing by giving us information we need to know in a timely matter.  Sometimes that will mean seeing a series of notes in a short time that aren't always the best reports.  That can be a drag. However the alternative of hiding your head in the sand and pretending it doesn't exist really doesn't help your kid. Accept you will hear not so hot stuff about your kid.  It will suck but if they didn't tell you and sprung it at ya at an IEP months later, wouldn't you be pissed?  Of course ya would!  Big girl panties on and read it.

2) Accept the fact that your kids will do stuff for them that they NEVER will do for you.  Yes, little Junior will marvel and amaze at school.  Most likely things that would never happen for you.  You will resent the living shit out of those teachers.  I know I have.  I'm pretty sure I got serious stink eye from a few parents.  It's just what happens.  New environment.  New people.  A fresh set of eyes and ears on a kid.  Sometimes, these folks just got tricks up their sleeves.  Appreciate the fact that at least it happens somewhere with somebody!  Better than nothing at all. 

3) Not giving the teachers/therapists a heads up.   Was your darling up all night?  Tell them.  Was your precious angel having a really bad morning because you offered milk to them in a red cup instead of the preferred blue one?  Did they completely refuse breakfast of any kind?  Even when you tried to bribe them with a Pop tart?  Write or email that.  We may complain we don't know what's going on at school all day but they aren't psychics.  No crystal ball on their desk next to the therapy putty.  Plus we have them for longer periods of time.  Think all the things that they miss and don't know might be factoring into behavior.  Don't think something isn't a big deal to tell them.   Let them be the judge of that. 

4) Do the homework.  Seriously, I know.  You're all "MAMA FRY BUT!!!" right now but do the damn homework.  There is a reason they are assigning it.  Even if you think it's stupid.  Even if it makes you crazy.  Do the homework.   If it's really becoming a huge issue, refer to point number three above.  SPEAK TO THEM!!!  But if it's a case of you would much prefer to watch that rerun of Two and a Half Men on TV right now than prod them along on their spelling, than you know what I mean.  Just suck that up, it's part of parenting that you signed up for with the pregnancy test came back as positive.  FYI, they all hate the Common Core too. 

5) Denial.  I'm typing this as I look over my glasses at you.   My friends call it "The Look".  I am telling you what you don't want to hear but know is true.  If the teachers notices behaviors, don't deny what they see.  If they tell you they have true concerns because they notice something, don't tell them "Oh he/she never does that at home."  Even if they don't, it means that they haven't done it yet.  Listen.  They are trying to help you. 

And for the love of all things holy, if you feel compelled to give them a gift, not another coffee mug.  My mom was a preschool teacher.  I worked in a school for ages.  We could open a coffee shop with the amount of mugs we got over our careers.   You know what's nice?  A note.  Yep, that simple.  A thank you note goes a long way. 

Or wine.  Wine is an awesome gift.  :-)

Wednesday, February 5, 2014

I just didn't know.

Before motherhood, I was on your side of the IEP table as a job coach and a prevocational teacher.   To those parents I used to see all the time, I have so much to say. I just didn't know.

I'm sorry I didn't know what it would be like to read those kinds of notes and data and paperwork with your baby's name on it.  I get that now.  Both the good and the bad of it.  Why on some days the very sight of the communication notebook or your yellow copy of the three page triplicate data sheet would make you feel butterflies in your stomach.  That some words would just sear themselves into your brain.

I'm sorry I didn't know what it really meant to have kids.  Yeah, I consider my students my kids.  I can appreciate what a teacher or therapist means when they say this.  Let's face it.  Nobody goes into it for the money.  Even still, it's not the same.  Those words have different meaning now.  I do understand that teachers and therapists do think about them all the time.  The job doesn't stop at the door or when you leave the parking lot.

I'm sorry I didn't realize that by the time you got to me you were already worn out from autism.  My twenty something fresh from college ready to set the world on fire attitude either annoyed you or possibly made you laugh and give you some hope.  I'm hoping it was the latter.  Now that my kid has had a few teachers that I would card if they ordered a drink, I can see why I was looked at with both doubt and sometimes frustration that I just didn't get it.

I'm sorry I came to work some days and just didn't have it in me to give hundred percent.  That I was distracted by things outside a classroom.  I was either annoyed by a coworker but more likely a boss.  That I had stayed out too late the night before and was sleepy.  That I was shaking off a cold or just having some job burnout and thought "OK today. I"m phoning it in."  I did a great disservice to your child.  My job was people, not things.  There's no phoning it in when your job is about people.

I'm sorry that I ever rolled my eyes at my student roster that day and thought "Oh man. Them?" They had a name.  They were their own personalities.  They weren't just a problem or a challenge I had that day.  They deserved the same amount of respect that I wanted them to give me. 

I'm sorry that I didn't stay in touch with some of you.  Boy I could sure use your advice now.  First round of fries is on me.

I'm sorry if I ever said anything about being tired because autism tired is a whole other level of tired.  I had no clue.  None.  I'm sorry about every time I was excited for sudden snow days or vacations.  I get why those reek havoc in your routine now.

I'm sorry that the only way a person can truly get all this is to live it.  I'm not saying it's a curse or a blessing.  It's just autism.  It is what it is and there's no way to fully understand what being an autism family is like unless you get up with it, interact it with it, feed it, and hopefully get it to bed at a reasonable hour at night. 

I'm sorry if I ever gave you a look of pretentious pity.   You needed empathy not my sympathy.  To pity would be to imply your child was just a situation one wants to disappear or go away.  You just wanted help, solutions and some problem solving. Autism is a part of them.  You love the kid, you love the quirks that come with it. 

So if by some strange twist of fate you have read this and wondered "Hey is that her?"  Hello!  How have you been?  Just know I still think about you.  I think about the things I wish I had done differently.  I wonder about you and your children all the time.  I probably won't ever stop.  I hope you have a good day today.  I honor all the work you did years ago.  I hope it's paid off.  Even when it was hard.