School Year - Day 1 Extreme Teaching

Both Critters returned to school today.  We now have a 5th grader and a 7th grader.

No school changes; no change in the peer mix; zippo. For the first time since 1st grade, I did not prepare a "cheat sheet" or "get to know" sheet on either kiddo, and now I'm worried it was a mistake.  I relied on last year's teachers and case managers to have it together and handle the transfer independent of me for the first time ever.  I suppose that is a testament to how well last year went for both Critters.  There were major hurdles - flipping the AP the bird, watching a teacher get his nose broken, not being able to take tests, etc.  but the staff handled each hurdle really well once they found their bearings. I know this sounds pretentious, but I am SO proud of them - the staff, that is.  Being proud of the kiddos is assumed.  I can only imagine the tenacity it must take to keep at exceptional, challenging kiddos like ours with kindness every day not really knowing if it is working, if you're making a difference, if it really is the right approach.  I, of course, have to keep at it too, but it's different.  I have the luxury of more time and fewer "show me" type demands. I have the luxury of allowing my kiddo to get angry at a demand without impacting anyone but us. I have the luxury of pushing them so far that they shutdown just so that they can learn to recover from that. I have the luxury of knowing exactly what to take away or present as a reward to get the desired outcome. I definitely have the luxury of being able to let them yell, scream and hate me for a little while as intensely as they can.  I have the luxury of waiting and letting all of that emotional intensity burn out to then have a conversation about WHY and whether they got the outcome they wanted by giving in to all that emotional intensity afterwards. Teachers simply don't. By middle school, they have 40"/day to teach teach teach, and we expect them to do it perfectly.  We expect them to do it perfectly for each and every child - even the ones that are in the 99.95% and the 0.05% simultaneously like mine.  What's worse, they often expect this of themselves. From day 1, they are trying to cram in SEL, collaboration, curriculum, standards, presentation, self knowledge, peer relations, organization, etc. into our kiddos as best they can.  Oh, and they do this at a salary that would prevent many of us from having the lifestyles we have and with hours that would prevent us the luxury of time with our kiddos.

Wow, this post was not intended to be a diatribe on the amazing and impossible job teachers have, but there it is.

I know that as sped parents, teachers are often a good fit or a bad fit for our exceptional kiddos, but after a couple years of being deep in the weeds and now a couple years of having staff REALLY step up, my perspective is that we need to give them a break.  Hell, not even that, we need to give them a hand.  I may not be able to make up for the pay disparity of what is vs. what should be or buy enough of the stuff that they should have but don't or even show up to volunteer as much as I'd like, but I will always help them as best as I can, even if sometimes that means trying to help them see an extreme parent's perspective. The hand I extend may not always be appreciated as it may come in emailing a post about IDEA or about SRO MOUs or sometimes a false assumption about WHY The Critter or Younger Critter are exhibiting a behavior that needs to be eliminated, but sometimes it comes in a load of wipeboards or dry erasers or owl pellets or in creative problem solving ideas that may or may not work in a school environment.  We, as parents, often force teachers into a mentality of us and them without meaning to, just as a result of everyone trying to get the best education for our children and not always knowing how to do that. I may not always hit the mark in helping with that, but my attempts will always come with deep appreciation, gratitude and challenges to all of us to be better.

Camp - Expelled

....BOOM!  There's that shoe!!

I'm mixed about this one and may never actually post it to the wide world.  The Critter was expelled from a camp today.  He became VERY agitated and upset with another boy and pushed him up against the wall.  Apparently, there was a lot of yelling that did not decrease when a teacher tried to intervene and say, "Hey, he's smaller than you.  You can't do that to him."

Thankfully, the administrators of this camp GET IT.  They know the difference between a panic response and a decision to hurt another camper in the Otherly Wired.  They gave him space and time to breathe and calm down before I even arrived to get him.  Unfortunately, after speaking with the other boy's parent, they opted to expel The Critter from attending that camp.  I am grateful that he will continue to be allowed to attend the afternoon camp.

So, here's where I get mixed feelings.  I am outraged that The Critter tried to hurt another child, especially one that is smaller.  However, this didn't happen in a bell jar.  The Critter didn't just get upset about the other team cheating and target one of them.

This is Chess camp, so my mistake in this is two-fold.  First, I expected that they would be playing Chess and be indoors for the entirety of the camp.  Second, since The Critter was on his phone too much the day before, I took it away, and he did not have it at camp.  Neurotypical parents can stop reading here because already, the neurotypical parent voice in my head is saying, "huh? Why is that a big deal?"  Some extreme parents may automatically understand these two sentences being HUGE deals, but I'll explain since everyone's flavor of extreme is a little different.  HEAT for hyper-responsive sensory avoiders can be a really unsafe thing.  A neurotypical's body starts sweating and they may get irritated because they are hot - these are warnings by our body to change our behavior and get cooler.  In a hyper-responsive avoider, these responses are waaaaay outsized and the response to them is also waaaaaay outsized.  Hence, why ASS-U-M(E)ing that Chess would be a completely indoor camp is a huge deal.  Now, for the phone thing.  So, for avoiders, small screens can be a GREAT way for them to disconnect from the barrage of sensory and social stimuli for a while to discharge and then re-enter their day.  It can also be an addiction, but that's for another post. So, taking The Critter's phone away meant that he did not have this disconnect(which I knew and we discussed other coping mechanisms) and that he did not get on his phone during an outdoor snack break activity.  The outdoor snack break activity was Capture the Flag in the sun, while it was over 90deg outside AND the kids were tackling, shoving, etc.  Also, REALLY big deals for a hyper-responsive avoider.  For most kids, the sudden shove by a playmate is accepted and does not feel unsafe to them or their body.  In a hyper-responsive, the unexpected touch registers more like being stabbed to the brain's sensory system and can send some into an immediate fight/flight/freeze panic response.  The Critter used to do this, especially in the heat, hence why there are NO outdoor camps on our possibles list in the summer.  Now that he's older, his response is more of a slow burn, but you can see it increasing if the hits keep coming.
So, Capture the Flag with tackling and shoving in 90degree sun ensues.....and then the opposing team cheats. The Critter STILL held it together except for some yelling, which is pretty neurotypical for any 12yr old kiddo.  Then, the other kiddo started calling him names, Stupid, Blind, Idiot and a few others....  So, as is typical of 12yr old boys, The Critter increased the intensity of the exchange by going to swearing.  Have I mentioned that this camp is at a CHURCH school?!?!?  So, the other kiddo continued to increase intensity by poking The Critter in. the. face.  That was it...The Critter backed him up against a wall and had his hands on the collarbone.  (Yes, that horrifies me) He let him go right away and walked off to calm down.  The other kiddo was laughing about it, even after being backed up to a wall. I confirmed that he is fine this morning; no damage or trauma about it.  If The Critter hadn't been outdoors, this would not have happened. If I had let him have his phone instead of expecting other coping mechanisms, he wouldn't have played a physical sport in the sun, and this wouldn't have happened.
Clearly, this is a learning opportunity for all of us.  So, The Critter is home today, and I have ANOTHER unexpected work from home day.  He will still go to the afternoon camp, and I am very grateful that the director did not see fit to expel him completely. ....and he'll go with his phone....which will be the ONLY time he will be allowed any media of any kind until I feel he is sufficiently regulated.
Now, to look up an Anger Management course that helps people stop that fight/flight/freeze response and recognize when it is coming....

Patience and ADHD coexisting in harmony?

Reading through the previous posts may have imparted a feeling of the ambivalent nature of our 2E Critter.  I want to be clear about ambivalence.  It is not apathy, it is the opposite, but in 2 directions at once.  It is intense feeling or an intense nature of opposites simultaneously.  I think the most common feeling of intense ambivalence we as parents feel is as our kiddos grow up.  We are simultaneously overjoyed to see them accomplish and grow but despondent to know we are losing who they were before.  I miss my 2yr old critters terribly, but am intensely excited to know them now.  2E kiddos are ALWAYS on the two extremes of competence, and this is very clear for The Critter.

Yesterday, Younger Critter said something that rocked my world a bit.  He said that he wins at chess more frequently than his peers because he is patient and waits for their mistakes.  THAT was a word I NEVER thought I'd apply to Younger Critter.  After going down what we thought was a clear anxiety pathway for him, too, we hit a wall with interventions and went back to square one and then added an ADHD stimulant med.  It's a super low dosage, but OMG!  No more pulling out the hair; no more test anxiety; no more handwriting avoidance!  Day 2 he said, "I feel like me but now in control of me"!  His exact words, so forgive the poor grammar.  While it did indeed feel like magic, we still saw lots of rebound in the evenings and mornings until it kicked in and very little patience....for anything! So, to hear him state that he uses patience as a strategy tool was kind of amazing.

The dichotomy of ADHD and patience in the same body for Younger Critter has me thinking what other hidden talents might be masked by his constant need to move and get input?  What other areas that could have been contributing to confidence and self knowledge have been obscured by that need for far too long?

Perspective

Another oldie but a goodie that I thought I'd copy over here:

 I think it would be nice if we could all understand that what we see in another's behavior is just a single pixel of the picture, viewed through our own kaleidoscope of perception and circumstance.  I think if we can understand that, then we can truly approach each other in the spirit of collaboration and empathy instead of accusation and fear.  Now, just think if we could grant ourselves that same benefit when looking within as well. :)

Maple Syrup Parenting

Wrote this as a post in the Triangle SPD Support Group fb page a few years back.  Since I just referenced in the last post about camp, thought I'd better paste it here, too.

In the midst of what sometimes seems like a chronic battle over how to appropriately parent our kiddos with my husband last night, I said to him, "I go to sleep and I get up and do it again, hopefully a little better. If I suck at it, I just keep trying and moving forward day by day, inch by inch." Raising kids is a marathon and raising special kids is like a marathon with the kids on piggy-back on maple syrup -sticky and slippery at the same time. We fall and we get back up. Some days we're running in place and other days we're sliding forward so fast, we have to adjust. Keep at it; you're doing a great job!*

Camp Completed

The Critter completed camp on Friday, and we hit the road back to NC.
This camp, Landmark College ELO-STEM for middle schoolers, definitely goes in the Good Camp pile, maybe even the first in a GREAT camp pile, and yet, I can't feel quite satisfied and content to leave it there....
The hydra-headed WHY????? always rears its head, even when things go really well for us SpEd parents.  WHY was this camp different?  WHY was The Critter able to self-regulate without issue at this camp? WHY was The Critter able to relate to the kids? WHY was The Critter able to identify early on which kids he would "hang" with and which ones he wouldn't?  WHY is/has this experience so different than other group experiences?
Then, of course, the plethora of possible answers:

• He's more mature
• The other kids are more similar
• The entire group is more accepting and therefore safer
• His meds are just right
• It was just he and I so the routine was VERY consistent and not a group dynamic
• No school so few demands
• No writing, by hand or otherwise, so no gap between output ability and knowledge due to the dysgraphia
• HIGHLY trained staff who read subtle signs and head them off early
• Few demands to "school" in a traditional way
• The Critter felt safe from the start because of the camp intent and was more relaxed, trusting that it would be a good experience.
• Highly trained staff are not thrown off by odd behaviors, sensory issues, etc.

Finally, the HOW do we incorporate this good experience into the next school year?  This, I have no answer for.  I even had to walk away from this post to the blog for a few days because I have an intolerance for cognitive walls. I have NO idea how to ensure that this high level of regulation, confidence, self-care continues once school starts at the end of the month. Fortunately, I know that what we have in place through the IEP and his case manager does work, even if the learning curve for the new teachers is high. Even if THIS kid is likely to be the MOST CHALLENGING kid of their entire career. Even if this kid will break or make their year, depending on whether they can accept what is, be flexible and creative, collaborative problem solvers.
So, while that cognitive wall of how to magically transport this experience to the grind and loaded environment of school is still there, I know that I am not alone in being frustrated by it. I know that it is not my wall to break down - at least not today.  That is the crux of maple syrup parenting (I'll attach that early thought from several years ago later today) when you don't know if you are going to have to slog through or slip by too fast.

Camp Day 4 and Striving for Average

Camp Day 4 was uneventful, which if you are the parent of an intense kiddo is success at its best.

The Critter told his therapist a while back that he wants to be average.  He doesn't want to know SO much more than his peers or know or be able to do things less or differently than his peers.  He wants desperately to feel average at school, which on its face sounds terrible for a kiddo with an IQ way above norm, right? At first, that news made me very sad, and I may or may not be shedding a tear about it still even now.  However, isn't that what we want for him, too?  For a kiddo who waaaaay too frequently feels like everyone around him is stupid AND feels that he himself is useless simultaneously, maybe average instead of those two extremes that tear him apart is a good goal.

Maybe figuring out how to wear his "I AM just like you" costume instead of feeling like an alien is a good thing at his age.  I'd like to think that he would feel safe sharing exactly who he is with everyone and telling those that don't like it to fuck off, BUT then I remember that friendships formed in middle school don't last more than a year usually anyway, so figuring out how to function in the world that IS might be a good tradeoff to trying to find his tribe at this age.

Many kiddos learn how to navigate the back and forth of social norms early - think of 2-3 yr olds in a sandbox.  They share, they build a structure together that they have figured out what to build almost seamlessly with minimal language.  This is shared imagination play.  For a kiddo who is talking about paleontology and various theories on evolution at 3 peppered with Roman Aqueduct architecture, there is no opportunity for shared imagination with peers.  That seamless social melding with others almost never occurred outside the home for The Critter.

A place to be and feel average like everyone else is a pretty good thing and can help The Critter gain confidence in himself and feel emotionally safe around peers - finally. While I'm not hoping that he will magically turn in to a typical middle schooler who tells me NOTHING and is constantly texting, having him feel what it is like in the "fun zone" as he likes to call average, is definitely a welcome change and something he can carry with him.

What's that stupid, sappy song from some stupid, sappy musical??/  "Somewhere there's a place for us"...
ARGH!  I looked it up!  West Side Story Natalie Wood Death Robert Wagner NCIS Hart to Hart......make the brain stop!!!
Sorry, it runs away sometimes and yes, The Critter comes by his intensity honestly.

Anyway, a place where 2E kiddos can realize that they are "average" somewhere is definitely a good thing and Landmark College ELO-STEM seems to afford that opportunity.

Camp Day 3 - Size of the Problem

The Critter completed Day 3 of camp yesterday.  It involved an injured bird, loss of virtual reality privileges and hate speech, which apparently is all pretty typical middle school boy stuff, particularly the hate speech these days.  So, interesting tidbit - while VT is very liberal and open and welcoming, almost everyone here looks a lot the same, at least in the two towns we've frequented thus far.  This means that when The Critter came home yesterday and told me about how one of the kids went off on a rant about minorities that included all the differences possible, I was a little surprised thinking we were seeing that uptick only in areas that were not bastions of liberal thought and appreciation for differences.  I should not have been surprised though, I guess.
If you also have a kiddo who chomps down historical political cartoons, historical documentaries, listens to NPR for fun, you may have also needed to have a talk with them about how to disagree about heated politics and even revisionist history lately.  Since this was not our first rodeo with The Critter being intolerant of intolerance, we were able to simply review the steps to avoid reaching a point where he really just wants to hit someone.  Mind you, violence is never the answer, but these are middle school boys, and scuffles can come with the territory despite our enlightened times.

Step One - ADMIT that the Size of the Problem(THANK YOU to Social Thinking curriculum  https://www.facebook.com/socialthinking/videos/10153385670211441/) when encountering dumbass hate speech is bigger than just YOU  This has been the place where The Critter tends to get stuck as he feels like his knowledge and intellect should be able to forcibly persuade the other person or persons to see the error in their way of thinking and just say, "Wow! You're right! The information and emotions towards minorities I've been given in this life thus far is just wrong, and I suddenly feel a kinship with everyone."  You can see how this thought process is likely an error for anyone, let alone a 12yr old

Step Two(assumes The Critter is successful with Step One, which has yet to occur) - Find an adult whom you believe will agree with you.  This should be super easy here in VT and still easy in our public school and yet.....  If you cannot see an adult you trust with this, go find your case manager - now!  This is to prevent the emotional reaction to the dumbass hate speech from getting the better of The Critter.

Step Three - In the future, discuss 12yr old topics like videogames or football teams or math homework and NOT global historical politics and our roles in fostering equity with these kids

It's pretty understandable how the injured bird and loss of privileges due to obscene drawings and swearing by The Critter and others got second billing on Day 3....
It is days like this that make me wonder...
Is it really The Critter that is emotionally behind or is it all the other 12yr olds??  Certainly, he is behind his cognitive ability, but is "joining or ignoring" stuff like this really an approach I want to foster just so this exceptional critter isn't the exception in the FU world of 12yr old boys??
Like most days, more questions than answers....

Camps of Summers Past

• The OK  
• YMCA Camp Kanata was okay.  They left The Critter in the cabin alone for almost a whole day, forgotten there because he was engrossed in a book, until he got hungry and came out for food.  He erupted once that week, but thanks to my bullet point "What to do When" card for the counselors, they knew how to help him. He loved the outdoors - riflery, archery, swimming, kayaking.  He didn't eat much or shower or change clothes much. He didn't want to go back because "no one understood me"
• YMCA Camp Seafarer was okay. He erupted multiple times, and I'm pretty sure that if it were a local camp, we would have been called to pick him up.  Again, loved the outdoors but basic self care was lacking. Same reason for not going back.
• YMCA Day Camp - There was a short period of time where this camp was okay.  We had an amazing tiny sprite of a girl assume possession of all things The Critter and learn voraciously about the alphabet letters that follow him around.  The Critter also became the go to guy to translate what kiddos who were non-verbal needed to the counselors.  He was always like, "duh, he wants water" or "duh, he wants you to leave him alone".....
• The  Bad
• YMCA Day Camp - How do you handle a kid whose body goes in to a panic attack fight/flight response from overheating in the summer?  Our response was to pull him from camp since they were exclusively outside in the summer heat. Extreme parenting learning curve rears its head!
• Baseball/Basketball Camp - bad idea for an auditory defensive kiddo. There's that pesky extreme parenting learning curve again!
• Indoor Rock Climbing - This camp was good once the director made a concerted effort to follow The Critter rules and form a relationship with him. Unfortunately, when that director left, the next leader sucked!  Not her fault but just as we have been smacked in the face with this extreme parenting stuff, ANY caretaker either learns quickly and becomes a creative problem solver ally or gives up.
• The WTF!?!?!?
• Camp CraZBrain - There was a partially full-of-something wine bottle, a steel rod, bullying, fire, barfing and Lord of the Flies-esque pre-teen boys building forts in the woods with minimal supervision.  Running, chasing and swearing was involved. I only said half the things I would have liked to the camp owner, who smiled beatifically the entire time I laid into him.  Pulled The Critter on day 3 and Younger Critter on day 4.  We were all traumatized from that one.

The qualifying "okay, bad, WTF" categories are NOT judgement on the camps or counselors. They are just what was for any number of reasons that happen when a camp critter is simultaneously multiple deviations above and below the norm.  Well, except for that last one.  WTF!?!?!?!?

Camp Day 2 - Small Things

Camp Day 1 was a hit!!  Such small things belie such tremendous progress.  When I picked up The Critter and asked for 3 things about camp, he gave me "awesome awesome awesome".  Not much information there.  I tried to insist on 3 reasons it was awesome, but hit a brick wall, and he asked me to stop and not talk about it.  ARGH!!  So frustrating to know there is SO much information in there, but he can't/won't share!!  We hit the road to Woodstock to spend an overnight and the next day with friends - convincing him to leave immediately after pick up was a bit tense, but again the seemingly small change in him balking but agreeing to go after I guaranteed him an hour of alone down time once we arrived to spend as he saw fit, is actually HUGE progress in being flexible as well as confident that he can handle my unexpected expectation.  Once there, I noticed GLITTER!! on the back of his shirt.  For those of you who may have a sensory defensive critter in your household, you can imagine how glitter is not a small thing.  Not only did The Critter not care about it, but he seemed pleased that a buddy, whose name he knew, slapped him on the back and put it there as a joke.  Stop reading now if you are sensitive to terribly inappropriate middle school boy jokes.  Later, at fondue time (and yes, he tried FONDUE!!), he was telling our friend's kiddos that one of the other buddies at camp had a million pick-up lines for girls.  When asked for an example,"I have a rocket in my pocket, and it's headed for Uranus" entered the conversation.  BOOM!  Oy!  Thankfully, these are not stick-up-your-ass type friends but let's-share-our-crazy-and-see-what-happens type friends, and laughter ensued.  Again, The Critter knew THIS kid's name, too!!
A year ago, we were having a very scary WTF!! camp experience, dropping rock climbing club, not talking to ANY girls remotely near his same age and freaking out about the advent of middle school.  So, these little things mean HUGE changes!!  Some of these little things are even FIRSTs for The Critter like fondue and knowing fellow camp kid names before Day 3.

Needless to say, there was none of the angst when I dropped him off for Day 2 - just a reminder, that was MY angst, not his. Don't worry - my phone is still on and the ringer turned up today

albeit maybe not quite as high....

Camp Day 1

Clearly, my best intentions of getting back to T-1 to Camp was foiled.  I'm sure that ANY parent, especially those subjected to the needs of extreme parenting, will forgive me.

I dropped The Critter off at the Landmark College ELO-STEM program this morning.  It has been somewhat of a lesson in "Calm down Momma, cause your kid is fine" which is a fairly new experience for me, so it's a learning process. I kept waiting for his anxiety to kick in in its usual unavoidable avoidance way, but zip....simply excitement excitement excitement as he responded when I demanded 3 emotion words for how he was feeling. He danced around the waiting area, greeted the director and started introducing himself to a few other kids that were hanging around the model of campus. I keep waiting for it......  As he begins to lecture/hold court/whatever word you use to(MAYBE there was a little bit of WITH in there) the other kiddos hanging around the model about its accuracy, when and how it was made, etc.  something very odd happened.  Not only did none of these kiddos walk away, not only did none of the other parents start to look around for whose kid this was, BUT the group of 6-8 kids in a circle on the other side of the room walked TOWARDS the model to participate.  This does.not.happen in most camp/school circles in our experience.  However, apparently surrounded by other kiddos that don't quite fit, maybe The Critter fits???  I know that when he returns to the daily grind, the same "walk away" behavior of others will happen again, but hopefully(dare I??), this will stay in him and he will know that it is not a personal deficiency that causes this, but the brightness of his differences.

.....and MAYBE down the road, he will learn to speak in code a bit more so that his brightness does not make others feel diminished but helps them light up as well.....



OK. Back to the job that pays the bills that I am ever so thankful allows me to drive >700 miles and work via cell and wifi.
Don't worry, despite the newness of a kiddo that is okay for camp, I still have my cellphone on and turned all the way up....just in case....

T-1 to Camp

Landmark College ELO-STEM camp starts tomorrow for The Critter. I've been sitting in our perfect AirBnB cabin at the top of Putney Mountain thinking about the OK, the Bad and the WTF!! Of past camps. Some background- the critter was always way ahead developmentally except for socially and other odd motor quirks like shoe tying, bike riding, hand writing. Running at 12 months, reading chapter books way before K, Legos for 16yr olds at 2. But, a head injury and relocation later, our lives changed. That was almost 5 years ago and we have traveled over 700 miles from home for a "right fit" camp experience here at Landmark for The Critter who is now in 7th grade.