My way or the highway

Bubba has always had significant issues with self regulation--regulating attention, sensory input, impulsivity, anxiety, the list goes on and on. We have slowly, but successfully, been helping him develop self-regulation skills by first helping him recognize when he needs to use them and then by teaching him (and practicing) an arsenal of tactics to keep himself in check. Currently, if we can cue him to do something like deep breathing or tight squeezes or incorporate something (like heavy lifting) into something he is doing when we see his energy, frustration, or fear escalating, well then, he is pretty successful. But if we miss the precursors and therefore the opportunity to interject, he can escalate rather quickly and in seconds any skills are useless.

In the car this weekend on the way to my parents' house, we had to make several detours because of heavy flooding. Bubba does not like to take the highway to my parents house, but rather the "short cut" as he calls it. Bubba doesn't dislike the highway completely, but we have come to figure out that to him the highway means A) a long trip, B) a long time coped up in the car, and C) the possibility of falling asleep (Godforbid he sleeps!). We typically let him choose the direction as it usually doesn't matter to us; however, this time, we had no control over the situation. We continued on through the short cut until we were greeted by a "Road Closed" sign. Hubby and I looked at eachother. Shit. Shit. SHIT!

So I started the prewarning: "The road is closed." "Water is on the road so we can't take the shortcut..."

Before I could do anything else, Bubba was screaming--that uncontrollable, uncertain, fearful yelling. It increased each time we turned around trying to find a way to avoid the highway. Eventually we determined there was no other way than the highway. So we headed to the ramp. As Bubba increased the intensity of his screaming, I automatically instructed methodically: "Take a deep breath."

Out of the corner of my eye, I saw Hubby breathe in deeply and noticed the instinct fill my chest as well. As we both exhaled, Bubba continued to scream until we got off the highway.

Sometimes we need those reminders to take a deep breath. And sometimes, sometimes, we just need to get off the damn highway.

Random Bits of Bubba

Me: We need to go pick up Grandma's car.
Bubba: Why?
Me: She had to drive Grandpa's car, because he had foot surgery.
Bubba: So he has a robot foot?

You think he's watched Star Wars enough?

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Bubba: Mom, did you know you can recycle milk containers?
Me: Yes.
Bubba: Did you know you can make things out of them?
Me: Yes...What do you want to make out of this one? (gesturing to the gallon jug he just emptied)
Bubba: How about we make a plastic milk container?

Makes sense to me!

Yeah David!

David Cook that is. It was nice to see a sincere winner... could you just imagine the "other David's" face if he would've won? "Who me? Little ol' me?" Come on, you know the face. Hopefully the "other David" isn't disowned by his father.

And, I teared up a little watching Mr. Cook cry. Not sure if I was crying because he was emotional or because I was ready to make a glitter sign for him and wave it around frantically. Hey, he is from Missouri!

I hope he can make a decent album under the American Idol rigmarole. I guess Carrie Underwood was able to do her thing, so we'll see...

Sing Me a Sad Song

So I have this shameful habit (I don't think it is really a pleasure) watching American Idol. My involvement has gotten progressively worse over the years--this year I even read entertainment news stories and participated in Idol...oops I mean idle...chit chat (that crappy attempt at world play was done in the spirit of Ryan Seacrest). I have yet to vote, but the urge is there... and that scares me.

This year I have been a fan of David Cook. And while I hope he doesn't win--because I would like a creative record from him rather than an Idol-inspired pop nightmare--if the "other David" wins, do we REALLY need another ballad singer? Maybe the "other David" could do a duet with Clay Aiken. And they can make funny googly faces at one another in the video. Just an idea...

Project Management

I thought that when I quit my full time job two years ago, my project management skills would leave me, my meeting skills (what little I had) would leave me, my problem solving capabilities would leave me, my planning skills would leave me, my letter writing skills would vanish - POOF. Actually, thanks to having to manage IEPs, therapies, doctor appointments, and volunteering to help other parents do the same, the only things that seemed to have left me are the ability to have any control over anything, the ability to maintain a functional household, and my sanity - POOF!

My dad had foot surgery yesterday. Minor, but I still worry that he had something stuck in his foot and he is diabetic. "Diabetic" and "foot surgery," words that make me shudder when used in the same sentence. So I cut grass for dad on Saturday, did some car swapping/returning last night. Accomplished nothing at my own house really. Well nothing that hasn't already been undone.

I have an IEP meeting for Moosie today (yes, another one). So I bought cookies. They are fresh baked cookies, so that's better than nothing. Right!?!?!

We have an unscheduled IEP meeting on Friday for Bubba, thanks to a crisis(that I tried to warn them about thank-you-very-much). No cookies at that meeting. I have no sugar to offer at all.

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This is an example of the letters/e-mails I write. I learned years ago from Reed Martin to "build our case" (I tried to link to his site. Is it gone?) and then again from Wrightslaw to "prepare for disaster." It's a tiring way to live, but I document, document, and document some more. And although it frustrates the hell out of me, I've always been glad when the time comes (and it always does come) that I have the documentation.

[Principal],

In discussion with [Bubba], [teacher] (email), and [school counselor] (telephone), I believe the behaviors reported to us (hands-on) to be impulsive and a manifestation of [Bubba]'s disability. As discussed in his IEP meeting on XXXX XX, 2008 (also see included email "[Bubba]: IEP" dated XXXX XX, 2008), [Bubba] has a documented history of impulsive, aggressive, and/or socially inappropriate behaviors especially in times of transition and/or less structured settings. He also cycles and is inconsistent in his reactions and impulsive behaviors. This is why we were extremely frustrated with [the school]'s decision to remove [Bubba]'s behavior intervention plan from his IEP (only school staff agreed with the removal) in XXXX 2008.

[School counselor] contacted me today and stated her concern that [Bubba] appeared to be regressing over the past few weeks (I interpreted this to be in behavior and social appropriateness), that he did not appear to understand his behaviors or why he was doing them (manifestation of his disability), and that the social relationship with his peers in his regular classroom was in a poor state (what we typically see in the community setting).

I reiterated to [school counselor] about his impulsivity issues, how this behavior is what we typically see at home, and also that I had notified the teachers of reducing his medication (See email "medication/picking" dated XXXX XX, 2008; in the IEP meeting it was stated there was no positive benefit seen at school and we were only seeing negative side effects at home). I also mentioned that I was out of town a few days this week, and had alerted the teacher of this, but did not think it would effect [Bubba]. I had also mentioned to [teacher] this morning that last month was a very difficult month at home (a lot of self-aggression as well as property destruction), but we saw much improvement this month so far (at home).

In light of this turn of events, [Hubby] and I would like to reconvene [Bubba]'s IEP team, especially if suspension is imminent, as suggested in the behavior report sent home on XXXX XX, 2008. As his parents, we are concerned about these behaviors and the safety of all students involved. However, we do not want him to be suspended (in school or out of school), but would rather he receive the support he needs to prevent the behaviors from occurring and to allow [Bubba] to be successful. We are not surprised by these behaviors, and our desire continues to be to proactively support him rather than only reactively punish him. We firmly believe in discipline and consequences, but are very concerned that [the school] is setting [Bubba] up for failure (suspension) similar to what happened in Kindergarten (seclusion room) by not providing the support necessary. We are willing to meet any time to brainstorm interventions and put them in place as needed to help [Bubba] curb these hands-on behaviors and to avoid the possibility of suspension or removal from the regular classroom environment. We are also open to working with the team to determine the best dosage/type of medication to benefit [Bubba] at home and at school; however, we need detailed information to make these decisions in the best interest of everyone.

Please let us know your thoughts on these issues and how you think we should proceed. It hasn't taken a long time for [Bubba] to spiral downward in the past once a similar chain of events occurred.

Thank you for your time. I will return the signed behavior report on Monday.

Sincerely,
[ange]

To Be or Not to Be...

Yes, Bubba. Dear dear Bubba. Bubba who lost his behavior intervention plan because he, according to school staff, no longer has "behaviors that impede his learning" has been *GASP!* having trouble keeping his impulsive little hands to himself this week.

So we received a call from the principal and a nice behavior report, parts of which follow.

Bubba "put his hands around the neck of another student while in lunch line. When asked why he did that [Bubba] responded with "I don't know".

And the principal states: "I spoke to [Bubba] yesterday, May 13, 2008, regarding keeping his hands to himself. Since he did it again today, he will lose recess tomorrow, May 15, 2008. Further incidents could result in in-school or out-of-school suspension."

Seriously, WTF? I couldn't ask for better documentation. I have my follow up IEP e-mail outlining why I didn't agree with the school's decision to remove Bubba's BIP, I have my unsigned written notice stating that they are removing his BIP with my note at the bottom stating my disagreement and referring to my follow-up e-mail. Now less than a month later I have official school documentation stating possible suspension because of behaviors that are a manifestation of his disability (impulsivity, lack of social skills). And since he has been "spoken to" he should just be able to turn that impulsive behavior right around. And I also have an e-mail from the resource teacher stating that she believes the action was impulsive.

I've also found out second hand from another kid in the class that Bubba was licking another kid's coat (while the kid was wearing it). That's a new one for us.

Ironically, all of this happened while I was out of town attending a Wrightslaw seminar. (Hubby said I can't go out of town again. Ever.) All I can do is shake my head and write my response to the report I have to sign.

Update: I just got a call from the school counselor. Apparently Bubba pushed a chair into a kid's chest. Shit. Shit. Shit. She has been meeting with him. She's concerned that he doesn't understand why he is doing this. Really? And this is "not [Bubba]." Um yes it is, sometimes it is, you just wouldn't listen to us (and unfortunately forgot the past).

Oh, Bubba. What are we going to do to help them get this?

College Grad

One half of M&M graduated this past weekend. Although I told the girls that the one time the twin thing actually benefits the siblings, they decided to graduate from different colleges at different times, so I still have one more graduation ceremony to sit through.

Seriously, she is glowing, and I am so proud of her. I swiped the following pictures off of Sister's site:

All is not lost

My mom has been on my mind a lot lately. Reading this blog doesn't make it any easier to pocket those feelings away.

Maybe this is why I don't think disability is equal to death. Maybe this is why I get so upset when people relate autism to cancer. Autism has not stolen the souls or lives of anyone I have met. Cancer has.

Don't spend your life trying to fix your child. Spend your life loving them. That relationship can be whatever you allow it to be. Don't fight for something you think you want, when what you need, what you can nurture, is already there. I have to remind myself of this quite often. In spite of me, not only because of me, my children grow, mature, progress. And I am so lucky that they call me "mom."

*****

I wrote this in highschool and then recrafted it in college. It never seems finished when I read it, always room to tweak, modify, as I continue to experience old and new pain and overwhelming love through various stages of my life.

Mom

I.

You sit there quietly
sipping your tea.
I watch you
stare
into the dark liquid.
Steam dampens your brown
(or was it black?)
hair.

I was too young
to know the secrets
that your clouded green
(or were they blue?)
eyes
kept from me.
I waited
until you noticed
my perplexity
before I left you to your
sighs.


II.

Your delicate
(or were they brittle?)
hands framed my face
as you welcomed me home from school.

You were happy
(or were you?)
then
listening to my stories
of swing-set wars
and jungle-gym triumphs.

I never paused
words tumbling over tongue.
You smiled slightly
as you listened.
(or were your thoughts elsewhere?)
Done with my stories
I leave you
to an empty room.

III.

You lay there
your beautiful
(Are you at peace?)
face
no longer tense
with pain.

Eyes closed
(Will you remember me?)
hands folded
never to comfort me
again.

I give you my
celebrated
blue rosary
to help your transition
to There.
(Can I go with you?)
The color is ice
against your pale.

I blow a kiss.
(A child's hope thrown away.)
I am pulled away
into greedy hugs.
You are
shut into
darkness.
(I will never know who you are.)