The "F-word"

I'd say she was caught a bit off guard?

This is something that can only be appreciated by another caregiver of an ASD child. J has started saying the F-word. Let me clarify. Monday J got mad at his ABA therapist and said "F&*k" and of course she was shocked and he caught her staggered face and stammering reaction. When he caught that reaction he went into to repeat mode. While she brow beat him into practicing hand writing he mumbled over and over under his breath "f*^k, f*%k, f#$k, f*^k". At that point she had steeled herself to the word that shall not be named and ignored the behavior. On this incident I didn't get the full details because I didn't pick him up from therapy that day. I got the abbreviated husband version of events,"she told me he said f*%k. No, I don't know why". I decided not purse it until it became problematic.With ASD you've got to pick your battles.

The next day I get a note from his school teacher, Jonathan was on orange, aka defcon four on the school behavior chart! He said "f-word" to his teacher, not THE f-word but the phrase "f-word". I had to read that note a few times over before I completely comprehended (and was sure of) what he actually said and I'll admit I laughed a bit.

my punishment was a bit more progressive
but you get the point.

Anybody else ever read the Secret? Dam me and my anti-intentions! What you resists persists, what you resist persists! So that's why my kid has Autism (side note, wonder if they've ever done any studies on that idea, that may be a bit more useful than all the current genetics studies they are conducting now, again). Of course I sat down and spoke to him about it. He lost computer time, his giant precious moments eyes teared up and he ran to his room blazing with fury and slammed the door as only most angst ridden teenagers (and ASD kiddos) can. I emailed the teacher apologizing and letting her know that he would be punished. Of course she was understanding and thankful I'd followed through at home. She even placated my parental naughty word guilt by saying he wouldn't be the first and won't be the last, thank god teachers are people too.

I got to witness this fun little quirk myself  yesterday while working on his first bit of homework. It was another hand writing task, apparently those are his favorite! As I sat him down and got him started when I heard him say "f-word, f-word" in a clear concise (six year old) voice. Hearing he's been saying it from someone else and hearing him say it myself are two totally different things. I managed to play it cool and he stopped saying it with zero intervention on my part.

So my question is where did he get the term "F-word"? Like I've previously written in the post growing up with the word retard  (http://autismspewage.blogspot.com/2012/07/growing-up-with-word-retard.html) that isn't a word bandied about in our house. One of his ABA therapists speculated that someone said to him don't say the"F-word" after he said f*#k  and like your typical (pun intended) Autistic six year old he took them L-I-T-E-R-A-L-L-Y. So now the "F-word" has become a curse word is his mind. In my house the "F-word" and f*#k and ALL variations of said vulgarity are now banished.

Even though he has Autism and can be expected (by DSM-IV criteria) to say and do things that are socially inappropriate I still feel responsible for what comes out of his mouth. I'll never forget how often my parents told me that my behavior reflected on them (of course at the time I didn't care). I think its hard-wired into to our DNA to want our kids to behave well as a reflection of our parenting abilities. While I hope J will develop this skill I have to accept that he may never be able to tell socially appropriate words from socially unacceptable words.

Another bittersweet Autism moment brought to you from my life. "F-word" it, I'm out. :)



How do you break up with your kids therapist?

The school year has hit us full force. This Tuesday we begin our third week of a full time public school for both my boys (which is my excuse for not having written anything lately, don't worry I plan to get back on it!). J is doing well, as I predicted I'm having more issues with his "NT" brother than him. Long school days are blessing and a curse, the days are busy but quiet and productive, the nights are harried and busier and that's what brings me to this topic.

J's schedule is INSANE! I wake them up at 6:30am. We do breakfast, grooming and we're off to school by 8 (OK closer to 8:20 most days). I pick them up by 3:10 and we're off to ABA by 3:30. He has ABA till 6pm and then he comes home and we do dinner, grooming and the bedtime ritual. By 8 o'clock some days he's asking for bed. He has one day off a week after school (during which I try to get in a play date for "social skills").

I'm having an issue with Wednesday's. We started private OT March 2012, mostly to get a grant to help pay for the private school he didn't end up attending. He did need help with some things that OT's specializing in helping with. He has a lot of trouble with three point pencil grasp, dressing himself (zippers and button's mostly) and he does a lot body crashing. So even when we decided not to purse the grant I decide to keep the OT appointments going. The OT is closer to his old school and she had a slot right after school, that was then. Now she has no appointments that don't interfere with either school or ABA and we have to ddddrrrriiivvvvveeee forty minutes to get there (vs. coming straight from his old school). On days when he has OT, we have school, a short ABA session and then the OT. I begged for an appointment that didn't interfere with either school or ABA, but she just didn't have it. Plus the way our insurance is set up every dollar we spend on OT takes away from our ABA funds!

this is my idea of teeth gnashing.
Oh the agony

So after much hand wringing and teeth gnashing the hubby and I've decided to cancel his OT appointments but dam if I don't feel like shit doing it. The hubby's says to me, "well whats more important, OT or ABA?" Honestly its a clear choice, ABA! I know he needs more occupational therapy. I know he could really benefit from more time with her but I just can't do it! I'm so sick of the scheduling, gas money issues, the rushing, the driving. I just feel stuck. Truth be told with all the frustrations with scheduling I like the occupational therapist. She is good, enthusiastic and really knows her stuff. In the last four (almost five) years I've meet many, many, many a therapist and a good OT can be hard to find!

those two big cogs are my sanity our
budget, both being pulled in a million
directions, both essential to every
other smaller cog.

Tomorrow is D-day and I'm still reeling on how to do this (or truly if I should). My logical mind knows in the past we've relied on school OT (yeah and look where that's gotten us). I know it's hard on us in gas, time and my patience level (which is at an all time low these days). The hubby and I have always agreed to do everything we could for J while keeping our family in tact. Keeping our family in tact means keeping my sanity intact (which is a big cog in our family wheel) and trying to keep our ever so slim budget on track. These OT appointments strain both but I still truly wonder how do you break up with your child's therapist?  

When we left his private school I wrote them an email to tell them I wasn't re-enrolling him. There was a natural break where we chose to renew or not to renew every year but with OT it isn't like that, it is basically an ongoing service (at least in our world). So I've decided to go to his next appointment and let her know in person. I think that's the least I can do and I'm sure as a professional she'll understand (at least I hope so), heck it may be nothing to her. I know she has other families that want that spot. If I've learned one thing from having an Autistic child its that you don't burn your bridges with providers. I hope this OT understands, in this case it really is ME and not her, but who wants to hear that crappy break up line! 

REALLY, we love you as an OT. It's me, not you!

Growing up with the word "retard"

On a beautiful sunny summer day in the grilling summer heat we ran, unsure whether we were afraid of her or making fun of her. At the time I would've been approximately eight or ten years old. There was the retarded girl from down the street chasing us, again. She was at least nineteen years old and to my eyes a fully grown woman. We all knew she was retarded by her size, age difference and odd gait. Playing with her would've been weird. So we ran and laughed and ran, all the while she called out "I just want to play" with a strong lisp.

if only everyone had the good kind of Autism,
oh wait they all pretty much suck. Yeah rain
went back to the group home you know.

 I remember the "retarded" kids in my school. You would only catch brief glimpses of them. They had different lunch times and recess times and you would catch glimpses of them sitting on the play ground not playing, sitting in wheel chairs and it was well, weird. The word retarded was accepted then, used as slang as liberal as the "n word" in the south, it was the lingo. Those kids were scary and mysterious, they were the unknown. This was all before the age of inclusion, before "Rain Man" and jokes about the good kind of Autism.

Fast forward two and a half decades. Another sunny Florida day, it is summer and my boys and I are at the park. Three kids, two boys and one girl, show up without parents (that should've told me something right there). They had to be around the age of ten to twelve. Jonathan voluntarily gets of the swing to approach them (which is a BIG deal for a kid who could've been the first kid to swing to the Moon if mommy's arm would've held out). My eyes shone with pride as I heard him greet them over the roar of traffic "hi guys" he said in a cheerful tone. One of the many wonderful things about J is that he's interested in other children (mostly older children and babies, never his own age group). They are all playing on the climbing/netting ladder thing. I see the girl shooting me looks, like "is this ok"? I can't see anything wrong so I continue to push my younger child in the swing but I get the feeling the kids notice something is up and I continue to watch them closely. Jonathan is sitting with them and then they leave. The timer goes off, it's time to leave. I find him sitting in the mulch at the bottom of the ladder, looking sad. I ask him a few questions but don't really get any answers.

ummmm, I'm sorry, give me just a second to digest that.

The next day after OT J is mad at me for refusing to go to sToys 'r' us. He blurts out "get the fuck away from me kid"! I was shocked but I knew where he'd gotten that from (he would NEVER hear the f word directed at him in our household or anywhere else we'd allow him to be). So I say to him "did those kids at the park say that to you yesterday"? and of course he said "yes" in a low pitiful voice, his giant precious moments eyes brimming with tears. Apparently the world hasn't changed that much.

I have to admit, I wanted to drive back to that park just to check if those children and their parents were there right that minute. I was filled with fury and loathing that someone could hurt him like that. I was also aggravated with myself that I didn't stop them when my mommy-o-meter had been going off. On top of that I was shocked that kids of that age would say those kinds of things, (heck my kids aren't much younger and they'll still ask for Dora the explore on occasion). I was watching them they had spoken low enough to J so that I couldn't hear them,  pretty freaking malicious. If I ever do see them again I'm definitely going to talk with their parents (what good it would it would do is a question I'll have to contemplate later because obviously they DO hear that kind of thing at home).

Yep, until it's your kid

The frustrating thing is that I know all the arguments against political correctness and how stupid they can sound to someone without a child or other loved one who may be impaired. I used to feel the same way. I won't even lie and say that we don't cuss or let something less than PC slip in our household. We are after all just human and so is everyone else.

Since I became a mom to a special needs child these memories and experiences have haunted me. J starts in an inclusion classroom this August, in little more than a month. He was diagnosed at two and a half and had previously gone to a private school for kids with Autism, so this is the first time we're facing this particular concern. I hear the horror stories, the poor boy wearing Dora socks. I remember the kid picking his nose in high school. It would seem that many kids with special needs aren't  aware they are being teased but I can't tell you J got that kids tone. He may have not know the words but he got the drift.

God help me, don't I wish I could do this!

I can only hope that the world has changed for the better and that J will be able to punch one of those kids in the face someday (or at least defend himself verbally). I know having J has changed me. I feel sad for the homeless woman in the park that is suffering with obvious OCD ticks (OCD and Autism do overlap sometimes). She translates directly to fear for J, for his future, for his skills and ability to cope with this world. In the here and now I worry about the times I can't be present, the playground at school, lunch time, and all the uncounted minutes in the day when children find the time to be cruel to each other. I know that I have to let him fall so that he can learn to pick himself up. I cannot hover at the playground waiting for the next offense but next time my mommy-o-meter starts going off I'm going to be casually drifting closer.