Wednesday, February 27, 2013

How's my hair?

Sometimes I look at autism and just want to scream "WHY ARE YOU SUCH A FREAKING PRODUCTION?"  I know, parenting in general is hard.  Quit your bitching Mama Fry but for once I would like to do a simple event without planning for it.  No social stories.  No video modeling. No endless talks about what's going to happen.  I just want to say "Tuesday after school you are going for a haircut." and be done with it.

But it's never that simple in our world is it?

So I will spend fifteen minutes on the phone trying to get my kiddo an appointment with the one hair stylist that we haven't scared away in eight years. I will reschedule things in order to get him to see this woman because it's her or it's the kiddo being a long hair hippie.  And did I mention her shop is located a good twenty five minutes away on a good traffic day from us?  I love counting all the other hair salons I see of my drive over there, where my son is kiddo non grata.

I will then calculate the timing.  He likes to have a few minutes in the waiting area to settle into all the whole sensory upheaval of it all.  There is an awesome train table.  For about a minute I can actually feel like he is calm and we're just doing a run of the mill hair cut.

Until she calls his name.

First start the indecision of where he wants to sit.  She's pretty flexible and quite accommodating to him.  I will give her that.  Then it's a to long discussion of "cape or no cape".   (If you can't wear it like Batman what's the point? I can get that.)

And so it begins.  I'm poised ready to keep him in one place by any means short of duct tape and glue.  Sometimes I'm practically smashed against him, holding him like life raft in a stormy sea.  Then there are better days where he just clutches me fingers and arms.  Either way this part is far from quiet.  Begging, pleading and crying are all the norm.  Sometimes all three of these come from me.  I plead in my head on the drive over to just once make this okay.  Make it less scary.  Make it less confusing for him. Yes selfishly I would love an easy haircut but I'm a mom.  I don't want to see my kid upset, crying great big blubbering tears complete with snotty nose.  Who wants that?  The little hairs stick even more then. 

Finally he will be done and she will go for the hair dryer to blow off the loose bits like she always does with every other child's hair she cuts.  I know this is her habit.  I don't expect her to always remember that the mere sound of the dryer sends my kiddo running in fear.  If I'm on it that day, I will block her reach to it and just sweetly request "no dryer just the brush please".  He will rip the cape off and run across to the counter for his lollipop.   The one he will never eat but because it's part of the routine, always take.  I will settle the bill and tip this girl well.  I will force a smile on my face even if I don't feel like it and say thank you and have a good day.  I will try beam positive vibes to the other parents who are there waiting and have just witness this.  I will  pretend I don't care that they gave each other that "look".  Cause I don't have the energy to worry about what they think.  I will hope maybe next time will be better or maybe his hair won't grow as fast. 

Either way, Mama is picking up a side of fries on the way home. 

Tuesday, February 19, 2013

Springtime for IEP's.

I see the all to familiar return address from the school district on the envelope as I go through the mail.  My pulse quickens. My blood pressure surely rises and my breathing catches as I open it.  It is that time of year again.  The official notice of our annual IEP review.

Insert dramatic music of your choice here!

The IEP. It is a thing of beauty really.  Tailor making an educational plan for the year.  A way to chart your child's progress.  It also gets a bad rep and strikes fear into the heart of many a parent.  Especially those poor newbies.  I mean at least when we started, I actually had a background in special education and the IEP process. I was able to be a bit of a guide for Daddy Fry.  He's got quite fluent now.  Why does it have to suck so much?  It really shouldn't but it does.  Here's what I thought about while drinking my coffee.

1)While it's super for charting your kids progress it's also a slap you in the face with the reality of what your kid ISN'T doing well in. While some parents may worry about that steady "C" average Junior is pulling in math, we get to see that our child is barely making a "P" for "Progressing".  On something like just writing their name.  Shoe tying is marked with an "I" meaning just "Introduced". Or you see an "NE" for "Not exposed" because your kid just isn't ready to deal with using a fork on their own. In this house, who needs an "A" when you can celebrate when you see an "M" for "Mastered".  (And if that is for toileting, you crack open a bottle.  That is worth some serious celebrating.).

2) There is just so much stuff to cover in it.  It is exhausting to write one. Even after all these years just reading the damned thing makes my eyes cross. This is not just academics.  It's speech, OT, PT, life skills, social skills, hygiene and behavioral.  It can be daunting to try and decide what you want to work on with your child and you got to hope like Hell good old Teacher and company is thinking the same way.

3) I have joked before that my kiddo has an entourage but it really can get ridiculous how many people can be at one of these.  Last year we had the problem of finding a room big enough for all of us.  Then it's a fight for time.  Everyone wanting to go first because they have to get back to teaching/therapies.  You kid or someone else's. The school nurse even comes to my son's and it's kind of "why are you even here?"  I mean she's nice and all but he really doesn't have any complicated medical issues we need to address.  I think she's coming just to hang out.  She knows I'm inappropriate after so I bet I'm just entertaining to watch.

4) Getting to "yes".  There is always something that becomes the topic of heated debate.  Either the parents won't budge or the school.  I get sometimes the school cannot legitimately provide some things.  It's when they can and they simply don't. Case in point, when the kiddo was in preschool his behavior was shall we say, less than stellar.  We were increasingly concerned how this would impact him academically if something wasn't done.  The teacher at the time suggested a behavioral assessment done by the school shrink.  We finally felt like we were being heard.  She did her observations and provided a very lengthy report remarking that "Yes kiddo's behavior is as bad as parents claim.  It will impact learning BUT no, no need to do anything" (OK not the exact quote but ya get it right?).  I was LIVID!!  Daddy Fry was out for blood at that meeting.  At the end of the day all we were asking for was a chart to be kept of when these behaviors were happening so we could see if there was a pattern. My husband really went in swinging at this meeting but dammit we got that behavior plan.   Yes, I'm sure we looked like pains in the asses but hey I didn't go there to make friends.  I went in for my kid.   Now all this time later, it's paying off.  In fact this year we might actually have to drop it out of the IEP. Simply because he doesn't need it anymore.

5) Crystal ball, not included.  Trying to figure out where your kid is going to be in a year is impossible. You can hope and pray but still at the end of the day, you really have no idea of this program is going to work.  One thing I always panic about is wasted time. Two years ago I started butting heads with his then OT to start a typing program.  She blew it off completely.  Two years later its still a struggle to get him to write his own name without help.  Luckily this current teacher and his new OT agree with me and have started teaching it to him.  I can't help feel guilty that two whole years went by without it though. When we could of been making progress, we had to deal with an OT who wouldn't even come to his IEPs until I screamed bloody murder for it.  I worry about what will be the next big thing we won't see progress on and kick myself over the time wasted.  I just can't predict that and it is frustrating.

So I will start reviewing our notes.  I will starting psyching myself up for the meeting by playing "Eye of the Tiger".  I do going in there hoping for the best but wise enough to know to expect anything.   I will promise my husband once again that I will not lunge at anybody.  Damn that's hard to do. 

Perhaps I shall bring in a couple orders of fries to set a jolly mood. :-)

Wednesday, February 13, 2013

Autism, I'm in it for the perks.

While talking online with some fellow in the trenches parents this morning, one mom wanted to know if any of us ever felt "stabby" when hearing a parent of a typical kid tell you how so lucky you are that your kid gets free summer school.  How super hard it is to find a good camp. 

Stabby?  Yes.  I also feel slappy, kicky, and throw down!  How I related to this mom!  This has been said to me pretty much every year the kiddo has been in school.  You know what?  I would love the problem of trying to find a good camp. Can I have that problem for a change?  I told her to reply to the person in question "Autism, yes, I'm in it for the perks!" 

It got us all thinking though.  There are some perks and I have mentioned one or two before.  So here are a few off the top of my head.

1) The bus stop is my driveway.  Sweetest perk!  For reals.  I watch him get on the bus from my door.  Sometimes still in slippers and now and then, pajamas.  I'm still sipping my umpteenth cup of coffee.  He walks three feet.  BOOM!  The bus.  Same for drop off.  I just open the door and read gossip sites on my smart phone while sitting on my steps with the dog.

2) Great therapists.  I have met some of the most dedicated and awesome professionals of kids and kid stuff there is!  When I am banging my head against the wall, I have "people" to go to with questions, concerns and WTF's!?!?!  They help.  Hello Magic Speech Therapist that has finally gotten my kid to eat.  I would marry her! 

3) Super fantastic online community.  Oh lord have you all saved my sanity more times than I can count.   4:30 am wake up from the boy.  Somebody else is up and totally ready to talk online.  Be it "oh my effing god I'm gonna die I'm so tired" bitching.  Or "Girl, did you see Downton Abbey last night? Bates is free!"   

4) Child study team.  Dude, my kid has an entourage at school.  Autism think tank!  When we meet, stuff gets done!

5) Alternative treatments.  There is a part of the parent's journey where you just start researching every treatment you can find because you want to help your kid.  You will try anything.  Stuff that maybe five years ago, you would of scoffed at as bullshit.  Not now!  Insurance gives me 30 visits?  OK let's give it a whirl.   I find this now ripples into my health choices too. 

6) The littlest things.  The stuff that catches your breath and brings tears to your eyes.  The good, the bad and even the ugly.   The progress that can't be traditionally measured but it means the world to you in that moment.  Savor it.  Never let anyone take that away from you.  No matter what it is.  Never apologize for it.  It is a BIG deal. 

7) Problem solving!  I find myself looking at things at ten different angles now.  For him and for my life.  This has been enlightening. 

So yeah, there are perks.  But please, for the love of god, don't ever tell an autism parent how lucky they are to get "free camp" in the summer.   They won't share their side of fries with you.  

Monday, February 11, 2013

Things I know about my kid.

There is no crystal ball.   There is no horoscope forecast.  No divination tool that's going to tell me what the future holds for my kiddo.  I know, no parent has that.  There does seem to be a smidgen extra worry on my shoulders and other parents of special needs kids.  Some things are sure.  They grow up.   What will happen?  How will he be?  Will he be successful?  Will he get on?  I simply do not know the exact details but I do know a few things. 

That this generation of children being raised is better than the one before.  Likewise, the one after this generation will be even better.  And so on and so on.  Society, experience, culture, research, morays and awareness have improved and will continue to do so.  I will keep raising HELL when need be.  The voices that come after mine will do the same.  We might not have to scream for the same things but we know a constant truth.  Squeaky wheel gets the grease.  That's why I always have hope for my kiddo.  I see what's changed in just five years.  So I know that things do get better.   Or I'm just going to get more creative about how we tackle them.   He won't grow up like me because he simply did not grow up with me.  (Although he's got some mad respect for some 80's tunes.  He does like to pop his collar on his shirts and thinks neon is awesome.)

 My kiddo speaks a completely different language than me.  I would be like the stereotypical rude American in Paris, expecting him to understand.  Shouting loudly in my tongue is tempting and yes, I still often forget and do it anyway.  (I'm a loud Irish redheaded Mom. That's how I roll)  Then I remember and try again.  He needs translation and so do I. We meet in the middle with simple phrases, PEC pictures and the occasional kiddo created sign language or pronunciation.  I wasn't the only one that had to get used to this, so did he.  I guess you could say our talks have gotten better and I hope they continue to do so.  The teen years are coming.  I suspect someone will have to model an eye roll for him and a huge sigh.  I have faith he'll get these. :-)

When my kiddo gets into something, it is ALL IN.  All consuming and that means we as a family will be consumed with it. All our vacations will have at least one trip to a train museum.  I can now identify a Pullman car when I see one.  I can see the pros and cons of owning a model train set in an "O" or "G" scale.  (No, really, there is more than one kind!  I bet ya didn't know that)  I may never understand the appeal or fixation but I see he's happy and interested.  So I go with it.  I remember a time not much motivated him.  I happily go to these places even though in my head I am thinking about other things. 

Then as quickly as something comes into our lives, he will discard it.  When he drops something I am baffled. I may understand the black and white thinking but I am still confused by this behavior.   There is usually no warning.  I find myself wondering like a dump teenage girlfriend "was it me? did I do something?"  Nope, I have accept it's him.  He's just no longer into it.  I've been burned by a few of these fad obsessions in the wallet.   So I have learned to not get to excited and just dump my money into them.   Only took a few hundred bucks for me to get that one.  I think that's any parent though.  We special needs parents don't have the lock on spending to much. 

Will he work?  Well, I sure hope so.   I used to job coach teens with autism, so yeah, working is huge to me.  Right now, I"m not kidding myself that college is going to happen.  He can barely write his name so unless he starts learning some crazy good typing skills, I do wonder and worry how school work is going to be for him as he gets older.   Maybe trade school is in his future.  I'll be happy with what makes him happy.   He's 8 but 8 years went by in a blink.  So yes, this is a real concern for me.  However, he does like to be hands on.   Yes, he will work.  Where hasn't been decided but he will.  

Those side of fries don't pay for themselves you know. 

Tuesday, February 5, 2013

My autism house

Do not judge where I come from for I am a proud member of this autism house.  Unless you live in one, you simply do not know.

If it means hiding my dish soap that he's recently become fixated on dumping into my sink, so be it.

It means a bed he loves to mess up the covers and yet never sleeps in. Couldn't ya leave it alone kid?  Save me that chore?  Well, that's how it will be.

My autism house is loud.  So very loud.  To the point several therapists and myself are now worried that voice we worked so hard on finding is in danger of permanent vocal cord damage.  Constant prompting for a talking voice.  Heck a singing voice is even better than the blood curdling brain melting screams.  I will sing along with him in a show tune style if it means protecting his voice.

Then there is the irony of being loud versus avoiding places that are to loud.  Sorry,we will be avoiding these places.  I know you mean well when you say you understand but you don't. Not when you have to deal with the two hour meltdown aftermath. Thanks for including us but respect my desire to stay home. Sometimes I just don't have it in me to deal with certain places and situations.  At the end of the day, he comes home with me to this autism house.  So when I want to leave a place early, it's because I know what could happen if I stay.  If you don't live in this autism house, even if you live in one of your own, respect the reason why we got to go.

This is the house where I try to keep a schedule for security in a routine but know no two days will be alike.   Any tweaks to the schedule will require some military operation like planning.  Sometimes it will go well.  Sometimes we will just go all in and ride out the rage.  That's what we have to do in this autism house.  

In this house I will go through a range of emotions toward autism on any given day.  I will marvel at it.  Rage.  Contemplate.  Delight and sometimes even want to avoid it altogether.  Those are the hardest days.  When I no longer have the energy to either attack or accept it.  I have to remind myself this is the house I live in and go forward. I will dust off my jeans, slap on some lip gloss and go about my business like I have before. 

We will celebrate each milestone in a grand style in this autism house.   For my kiddo has certainly earned every parade of praise we give him.  I will smile and hide the tears at the same time.  Savor each victory even if it's just that I got him to finally eat meat balls and meat loaf in the same week. 

I will know when to step back.  It may look to others like I am hiding in this autism house.   I'm not.  I'm recharging and reflecting.  It's the only thing for sure I can do to keep going.  Even when the well meaning cliche cheer of "I don't know how you do it" is uttered.  Well guess what Buttercup, I don't how I do either.  Care to trade? It's easy to get angry but it's more fun in this house to go with the flow and order another side of fries.  So I'll tell that kiddo to hop in my car so we can hit the drive thru.   We'll try again tomorrow if we're having a rough time today.  It's all I can do.  Then we'll drive back to our autism house.