Sea Change

sea change

ˈsē ˌCHānj/

noun

1. a profound or notable transformation.

When The Critter was 2, he was using full sentences with 6-syllable words. He didn't play with his peers in pre-school because "They can't talk right. They don't understand me."

When The Critter hit first grade, he couldn't get his thoughts out on paper the way they were in his head.  He was different.  

Insert head injury and relocation here.  What we now know about mTBI is so far beyond what we knew 6 years ago. I'll never know if having that knowledge accessible then would have changed our path.

In second grade, his teacher showed creative help by letting him use the computer first, giving him breaks and fully accommodating what she needed to for him to learn happily.  He won awards for always helping his classmates and for always trying to make them laugh.

Third grade brought a teacher who derided his need for more time to write math problems, an art teacher who shamed him for spilling a drink and not cleaning it up with the "correct" paper towels, a principal who didn't want him in her school, people telling him he was not standing close enough to his classmate in line, not letting him go to the bathroom upon request, saying he was speaking nonsense because he was using unknown vocabulary or speaking German, forbidding him to play a game he made up with his peers at recess because it was too involved. All things to control him to conform in a world that was not made for him and the magic of his differences. 

Fourth & Fifth grades brought a self contained classroom, ie exclusion.  Fortunately, the person in charge of that class was a pure, magical storm of knowledge, practice and kindness. I thought I was betting against The Critter in allowing exclusion to happen, but it was a perfect environment for him to learn how to handle being so different in a world structured by neurotypicals.

I mention all of this because there IS a sea change coming, and it is coming from all fronts. Educational groups who put control and conformity above understanding are on the out.  All you have to do to know this is to read any content whether it be book, blog, publication, whatever on educational norms or educational policy to hear things like inclusion, trauma-informed teaching, be curious not furious, flexible seating and curriculum, Universal Design for Learning(UDL), diversity in schools. 

It is 11 years since I had to explain why The Critter would not play with the other children and learn that even play is pathologized if different.

It is 7 years since I had to independently go find reasons for the differences in order for a teacher to accommodate them.  

It is 6 years since I thought, "Oh, he's successful because FL and NC do it differently." along with "Where the hell is all this mood intensity coming from?" and "Why are all his senses out of whack suddenly?" 

It is 5 years since I discovered that the TONE of the brick and mortar building can be harmful regardless of state, district, scores, interviews, etc.  No amount of homework will reveal the true tone a school will take with a different child.

It is 4 years since I learned about restraint, inclusion, equity, access to education and all the commensurate concepts. 

It is 2 years since I started emailing admins at the middle school. 

It is 1 year since I learned about person-centered profile and nothing about us without us and self-advocacy.  

Through all of that, the TONE of education has been catching up.  

You used to hear about equity only in discussions on disability or race.  

You used to hear about inclusion only in discussions about educational placement.  

You used to only hear about "nothing about us without us" and neurodiversity in discussions about and with people with autism.  

Now, whatever phrase you use, it comes down to a sea change in how we interact.  Whether it is allistics and neurodiverse, majority races and minority races, men and women,  the catch phrases used all come down to a sea change in interaction.  

Kindness, whole person approaches and curiosity are rising up instead of fear. 

All fronts are pushing for those without differences to open the gates and embrace seeing themselves in others regardless of the differences, whether those differences are worn on the outside or the inside. 

Which side of the sea change will you be on?

Valeria Brown is holding a Twitterverse book club. I found it because some of my favorite local educators who have been critical for the critters have joined and been posting about it.  The first book is Troublemakers by Carla Shalaby(@CarlaShalaby).  The call to #cleartheair by Valeria Brown(@ValeriaBrownEdu) is a call to action, a call to push the envelope on the coming sea change.  A call to be thoughtful and intentional moving forward. Furthermore, her mandate is not to only look within as I tend to do - I do love thinking about thinking, after all - but instead to look outward to what you are GOING to do differently.  How will you change yourself and change direction with intent in your interactions with others? How will you contribute out there instead of just in here? A call to action requires action, not just agreement.

I'm not sure I'll be able to rise to that occasion beyond being intentional with the kids, their educators and friends, after all that whole friendship thing and bi-directional social interaction takes a LOT for some of us, BUT I will love lurking, learning and thinking about thinking.

P.S. If you're wondering about the phrase, Sea Change, it originated with Shakespeare's The Tempest, arguably an allegory but for what?  The bible, colonialism? The Tempest is here and bringing a Sea Change, whatever it is...

Camp and Social Skills

The Critter was expelled from another camp yesterday.  If you read through previous camp posts from last year, you know this is not the first time for us.  I REALLY REALLY thought this one would work, so I guess I'm either an optimist, stubborn in advancing The Critter or insane since I keep trying. Maybe I'm all three.

This camp was different in structure & approach. First, it is a non-profit and ahead of the curve in inclusion of differently wired kiddos.  It is completely outdoors with LOTS of hiking, creeks, critters, even whittling. Since The Critter is older, he is in their Counselor in Training program while Younger Critter is in regular camp.  We figured since he enjoys helping at school, tutoring, teaching his social skills classes and hanging with his little cousins, this might be right up his alley.  He LOVED the half day training.  Because of the July 4th holiday and vacation, he had 2 camp days, then a week of family vacation and then back at camp for a week this past Monday.  Day 1 of the two-day camp had us picking him up early - he threw up after seeing his own blood from a scratch.  Day 2 he did GREAT and was super excited about being bitten by a baby snake. Family vacation was like having pre-relocation and pre-head injury kiddo back but grown.  Flexible. Agreeable. Excited. Amazing. Parents love seeing their kiddos happy and growing, so it was a really nice week.

Day 1 back at camp and he became upset with the kiddos, who are 5-7 years old, yelled, stormed off and ranted at a counselor about them.  Apparently, he called them sluts and scumbags during that rant.  BOOM!  Home he goes!  Understandably so, right? Thankfully, the counselor said that the little kids did not hear the name calling, but he still yelled at them which is emotionally unsafe for them.  Natural consequences of leaving camp like this include zero Zero ZERO media, not even TV, so he did some chores and read a few books.  The learning he showed from a day like this is pretty amazing and shows how far we've come.  He did not dismiss the whole camp as worthless and refuse to go back. He was really upset with himself and sad.  He was able to know what happened, trigger points and what he should have done differently.  1. Get more than 3 hours of sleep - he waited  and snuck to his laptop to play games all night. 2. If over-tired, do NOT put your body with a sensory hair-trigger to the fight/flight/freeze response in a physical game where lots of 5-7yr olds pile on you.  3. KNOW that your typically overly intense language(which usually includes expletives) needs to be replaced.  These three things are important life skills that neurotypicals don't struggle with much.  That #3 there has been a BIG problem for us for a very long time.  The Critter feels fully justified in unloading his intense, expletive-rich vitriol on anyone who he feels deserves his justified outrage about all things unfair.  We have been unable to get him to agree that this does not serve him well since for so long he would lose all language completely when he was emotionally overwhelmed.  The intense language helped him find language that matched his feelings, BUT he now needs to stop. He knows that his little bonus cousin is 5yr so when I asked him what HE would do if someone called her a slut, he shut up and realized what he had done.  Code switching is when you change how you speak to match your audience.  ie I may swear like a sailor and throw in a LOT of southern slang when out drinking with the kookoo mom group, but bring out my $5 words and legalese for an IEP meeting sans expletives. Most people learn to code switch without thinking about it, but for the neurodivergent, this can be a big piece of the social skills equation.  It has always been a struggle for The Critter, although not always with swear words.  When he called his 3rd grade peers coelacanths, that is socially odd since it is not a word they typically know.  When he wanted to argue politics with his preschool teacher, he had trouble not doing that because that is not typical conversation for preschoolers. So, Bad Day 1, he learned that he should buy-in to learning to code switch, replace swearing, self care to not socially overextend himself when not 100% and get a good night's sleep before a big day.

Bad Day 2 comes along the following day.  He did all those things he learned and called the same kiddo who played the role of Super Pest on Bad Day 1 a Little Skunk when he said The Critter stole his stick.  Unfortunately, The Critter refused to give up the stick and yelled "Little Skunk" at the kiddo who was saying that he stole it and then escalated further when the counselor asked him where he got the stick instead of immediately and heartily extolling his virtues and swearing that she knew he would not steal.  BOOM! Home he goes and is now dismissed for the week and possibly for the summer.  Still understandable, right?  Yelling at little kids, even when they are intentionally antagonizing(yes, Little Skunk probably was intentionally calling him a thief even though he knew the stick was not his) is indeed emotionally unsafe for the little kids. The Critter, however, does not fully understand what replacement social behavior he should have used other than to just not yell.  In fact, he still had the stick and was going to take it home as a prize.  When I made him leave it, he was going to throw it into the woods so Little Skunk couldn't find it again.  Oy! No lesson learned there.  I made him drop it at his feet instead and then asked him if he was upset he lost the right to go to camp.  He certainly did.  I asked him if it was worth losing the right to go to camp over a stick when the woods are full of sticks.  Nope, definitely not.  Another day of chores and reading - and thought. Some surprise role playing when I called him a thief and said he stole something from me and some practicing giving in when his younger brother wanted something he had first.

Good news is, this camp truly means it when they say they will work to help unique kiddos.  They agreed that being years behind in typical social skills means that the learning curve is steep and that you do not learn without making mistakes, especially something as complex as social skills.  The Critter is now on Good Day 2 back at camp this week .  If this camp had not changed up some things to help and welcomed The Critter back, where is the learning going to happen? If a kid in math class gets a bad grade on the quiz, you don't kick him out, you help and try again once the skills are learned.  Social skills are NO different except that they are not learned in a bubble but with others who are learning at the same time. If Little Skunk gets yelled at by a much older kid for intentionally antagonizing him, maybe he has learned a valuable social skill along with The Critter. If The Critter comes back and apologizes for losing his temper, EVERYONE learns a social skill.  Unfortunately, behaviors are treated as needing to be separated instead of just showing that a skill is lacking and MORE practice, not isolation, is needed.  Social skills are invisible, too and once learned there is no gold star or A+ on a paper and most of the time, not even a recap of what was learned. After Good Day 1, The Critter told me MULTIPLE times(remember I'm persistent) that he doesn't want to talk about it and I just need to be happy that he's got this now.  LOL!  He's right!  So, while The Critter learns to Let it Go, Choose Happy instead of being right, Give In even if you disagree, Ask for Help early, and SOOOO many other things, I will work on learning, Shut Up and Be Happy when things are good.

Full confession - I cried this morning about just this.  I am sooo happy to have a happy critter, so similar in essence of personality to the little boy who was there before the world changed that I am SCARED of losing him again.  I know he's the same person, but to see him express that wondrous, positive intensity so freely after so long seeing it trapped behind his differences, I want to cancel school and cancel the world and everything else to keep it here. Not possible, but a mom can dream, right? At least when it all starts back up on Friday for them, I will know that they return with confidence and skills learned in the social wilds where social skills are practiced naturally, including all the natural consequences that come with mistakes.

Carrot or Stick - the eternal parenting question

This question: whether to beat The Critter's ass(verbally) or to speak supportive, encouraging words and incentivize the behavior we want is constantly running through my mind.  Basically, do I use a carrot or a stick today on this issue in front of us.  This endless question seems to be louder and more oppressive to me(and I'm sure to him) as he ages.  At 5, he was smaller and so seemed the lifelong trajectory of the decision to use a carrot or a stick and even if neither worked, giving in sometimes did like "FINE!  You can keep your shoes off until we have to leave the car, and you can take them off again as SOON as we get to Grandma's, too"  Small repercussions, right?  I mean, he's not still refusing footwear...

However, the example today is that The Critter has not done much work on a 2-day math test at school.  He might do 4 problems in 40 minutes while taking bathroom breaks and generally avoiding the work. The teacher has provided extra time, separate setting, whatever for him to do this.  I even dropped him off early to work on it this morning.  So, my mom-of-a-teen voice(and dad's voice, too) say "Take away all his media!!  This is important!  How can he be so disrespectful??  Doesn't he understand that schoolwork is important??  If he can't do this now, how will he do it later? If he can't do this now, how will he do it in college when we are not there? If he can't do this now, how will he ever live independently?"  and on and on and on.  The less emotional, sped-knowledgeable voice says "What is the hurdle that he doesn't have the tools to solve? What aspect of his different abilities is causing this behavior?  What function is this avoidance serving?"  Pretty damn calm, right?  I've worked HARD on cultivating THAT voice.  heh heh.  The my-kid-is-in-pain-mama-bear voice says "WHY can't they get him to work? I'll just put a new video game on the end of this test."  You can imagine how much fun it is having all these disparate voices in my head along with the cacophony of all the external voices - his, his dad's, the teacher's, his behaviorist's.  Some days I truly feel like Sybil with 16 distinct personalities(and YES, we can go on about how mental health is treated horribly in the media and how MPD is now DID and whether this specific case is really an accurate portrayal of that mental health need) roaming about in my head.  BUT, that is a ME problem and one that as a parent, we simply take on. 

So, how did we, well HE, solve this(because we have to remember that it is not MY problem, it is HIS problem - I'm just here to help him. Helping him is my problem, not how to take a damn math test)?  He FINALLY told his teacher that he couldn't do it without a calculator.  He went on to the calculator active parts of the test and aced those parts. So his problem was with the executive function aspect of stepping through problems without a calculator AND with having to write(dysgraphia, remember) down ANY steps to help him remember where he was in the problem.  This is 8th grade math, so lots of steps, lots of calculations.  THAT part of the problem is related to his different brain and his fierce refusal to learn assistive tech for math and to write ANYTHING. However, not telling the teacher what he was struggling with so the teacher could help him plot a better course of action than days-long avoidance tactics is the much bigger problem here. As soon as he let the words of his struggle fall out of his mouth instead of spinning round and round in his brain and body, he solved the problem and solved it with a high B despite all the wrong/incomplete answers on the calculator inactive section. I used the stick in this instance, and was SO relieved that it worked. 

Most parents use the stick, I think and life is based on a stick response.  If he doesn't do a test in school, he gets a bad grade but doesn't care that much since he knows the material.  If he doesn't do work in a job, he gets fired and can't pay for electricity to play all those cool games he has, so the stick I used this time is as close to a natural consequence for a future in real life situation as I could come up with. Regardless of stick vs. carrot, I think the most important thing I can do here is to combine those voices: the mom-of-a-teen, the mama bear, the sped parent, and come up with an approach to truly HELP, not solve, but HELP.  We learn through struggle and that is so important with teens who are differently wired.  The Critter's ability to handle any level of struggle was so low for so long that he needs to stretch that skill.  He needs to gain confidence in being uncomfortable and embrace himself and his skills by sharing his needs with others.  If I respond and solve every problem he is having with every teacher, he'll get awesome grades all the time, but he won't learn the skills to live his life on his terms. If I don't put him in the driver's seat and step back a little, he certainly will never live independently, even if he wears shoes everywhere.

So, carrot or stick??  Both and neither.  Is asking what the problem is instead of yelling it a carrot or just caring? Is rewarding him with hugs and dinner choice for FINALLY telling his teacher what the problem was and solving it a carrot or just celebrating him embracing his needs? Is telling him that there will be zero media usage until school is out a stick or just helping him learn that in later life there are natural consequences? Is him getting a high B instead of an A because he would not work some of the problems a stick or a natural consequence? Is the reward for using this experience as practice for the final end of grade test so he could learn better mechanisms than avoidance for long problems with no calculator a carrot or just a life lesson? 

Love your kids.  Love ALL of them, not just the parts that don't make you crazy.  The struggles are just a lesson for later - for us and for them.

Words for the years

PERSEVERANCE

SELF CONTROL

CALM

FLEXIBLE

FRIENDLY

RESPONSIVE

INDEPENDENCE

COLLABORATIVE

HEALTHY


That's a lofty list of words, but I think a common one that floats through our heads as parents.  Maybe the letters are a little larger and backlit or even flashing in neon for parents with unique kiddos, but I think the list is the same.  These are words our family has used for our future year, either for the whole family or for just one of us.  My words for past years have been FRIENDLY, COLLABORATIVE and HEALTHY.  My husband does not really participate by truly owning a word for himself, but does a great job contributing his thoughts when we have our family sit down right at the start of the new year to pick words.

This year's word is INDEPENDENCE.  The critters thought CALM was a good word for them, but I increased the scope to INDEPENDENCE.  Now that both of them are mostly behaviorally stable and academically stable, those life skills that get missed along the way will be focused on.
For example, at what age did your kiddos or kiddos of friends who might slant closer to neurotypical learn to ask for help in the classroom?  2nd grade?  3rd grade?  Certainly by middle school, right?  At least learned to raise their hand to ask a question.  Not so with critters who may have learned that the adult in the room can't help them - not because they are incompetent or bad at teaching, but just because the help needed isn't something they know how to provide.  How do you help a kid calm down when talking to them or asking what is wrong or telling them that it's okay just makes it worse?
So, here we are learning things like self-calming and self-advocacy and self-care(cough cough hygiene!) years after many have already started these skills.  That is independence!  Independence from paraprofessionals.  Independence from me.  Independence from blaming me.  Independent ownership of their brains and bodies and thoughts and actions. They're finally ready for this at 11 & 13, and I cannot wait to see how it goes! Maybe an independent college experience is possible.  Maybe learning to drive at 16 is possible. Maybe telling others what they need because they know themselves is possible. Maybe a social circle is possible. Maybe marriage and grandchildren are possible. Maybe a rewarding career and healthy life are possible. We may be starting small with an alarm for the morning and working towards getting ready for school without constant reminders, threats of consequences and chronic badgering but mastering the little things has a ripple effect.  Mastering something small ripples through ALL other aspects of independence. As we(we because I have to back off and let mistakes happen while still supporting, so this is big for me, too) make this small change, the pathways built in a small piece of independence and self reliance(thank you Ralph Waldo Emerson - note to self, have The Critter read this) get used for other areas of life that need them - homework, social, hygiene, mealtimes, sleep schedule, med schedule, active participation in mental health care.
We will OWN this word for 2018, just like we owned PERSEVERANCE in 2015 and FLEXIBLE/FRIENDLY/RESPONSIVE in 2017. Just like I owned COLLABORATIVE in 2016 to stop looking at my spouse as an obstacle to drag kicking and screaming through this sped world behind me and start treating him like he is truly loved and valued, even if he is a few steps behind on the path sometimes.

Friendship is a Resource????

Gaining and maintaining friendships is not seamless for anyone.  While it may be easier for neurotypicals, it is still dedicated effort.  No matter how busy you are in your life, you have to text back, call back, take time from something - all to keep friendships.  I assume that for many neurotypicals, this is not that stressful and doesn't take a lot of "brain power" to do.  For those with differences, whether that is ADHD, autism, sensory processing differences, cognition differences, anxiety, etc. gaining and maintaining friendships TAKES LOTS of effort.  Firstly, many new people encountered in the typical school or neighborhood are just not a good fit so even finding someone who might be a friend can take effort and patience. Once that happens, all of those behaviors that are automatic for many take resources - brain power to remember and execute - and time to do that. Think about how difficult transitions can be - transition from home to the car, from the car to school, etc. Then, throw in high levels of unexpected and pepper in some social anxiety.  Every social interaction is like that for The Critter.  Even just texting a buddy takes up all the self control resources available and depletes all that brain power.
The internal resources that The Critter spends on a single kind-of friendship are immense.  So, then, if his ability to "friendship" others is limited, is this a limiting resource for everyone, even neurotypicals??

For myself, I cannot "friendship" with too many people.  I'm better spending my friendship resources in small doses.  It's better this way for both my friends and me in most cases.  I'm pretty intense and while I've successfully learned to hold back a lot, I'm still WAAAY intense.  Younger Critter has a friend (we'll touch on that friendship a little later here) whose sister is hyperkinetic.  I LOVE her because she talks and bounces at the speed I'm comfortable with.  She's AMAZING!  Her thoughts bounce around so fast like super excited atoms interacting in ways most humans cannot follow.  I LOVE it!!  Of course, I have two speeds - ON and OFF - and my ON is usually difficult for others to tolerate because it is HIGH FIDELITY and SUPER SONIC!! She makes me smile because I can drop my cloaking device and join her bouncy, superfast, super intense world for a little while.  Friendships require that I am ON, but have the cloaking device set to high too so that I can "friendship" like others expect, sooooo this takes a LOT of energy to turn down the ME.

On to Younger Critter's friendships.  We realized recently that because his close friend has a lower amount of the "friendship" resource, Younger Critter is also impacted lately.  Younger Critter is a bit of a late bloomer friendship-wise.  Until this bestie came along and he was ready, Younger Critter's interactions were not too enjoyable except with us or with The Critter.  He just did not have the underlying executive functioning, processing control, etc. to "friendship" well, even in low doses.  Enter growth and Bestie last year and Wowzers! has he come a long way.  Unfortunately, his "friendship" resources lately have outgrown his Bestie's resources.  He is ready for some small groups with other types whereas Bestie really does not enjoy that much with most others. Bestie also is highly jealous and still has some VERY sharp emotional edges that can make it difficult for him to allow others to get to know what an amazing kiddo he is just as he is. So, not only has Younger Critter's "friendship" resources outpaced his buddies', but other kiddos who may be a good fit for Younger Critter are not able to engage because of Bestie's sharp edges.  What to do as a parent?  Do we pull back the contact time with Bestie?  Do we let it ride, knowing that this is STILL a hugely beneficial relationship for both of them? Do we try to introduce a third player in to the time Bestie and Younger Critter spend together?  If so, what criteria do we use to gauge what might be a good fit AND how much adult presence to help coach through new learning opportunities should we provide? Do we have faith that interventions for both Younger Critter and Bestie will work and they will eventually be able to diversify their friendship resources? With middle school on the horizon, I think we'll just let Younger Critter and Bestie be.  Middle school friendships are volatile and impermanent as a rule, so why throw a wrench in to what is working early?

The Cost of Being Different

I do not intend this to be a complaint blog about the cost of mental health care, interventions, getting the right accommodations, etc. BUT I will detail out of pocket expenses for unique kiddos.  I hope the tone comes across as dismayed but grateful.  Dismayed that SO many cannot do these things for their children that we found necessary, even when they find out about them and have at least some level of access to them.  Grateful because we are able to - it takes a massive spreadsheet and micro-managing budgeting down to the dollar, but we are able.  We give up vacations, visiting family, put off home improvements, eat in, drive used cars, do our own yard work, say NO to outings, but it is all worth it and we are so utterly and eternally grateful that we are in a position to give those things up to make the therapies, supports, etc. happen for our kiddos.  When I talk to friends with less unicorn-like kiddos, conversations may edge towards how expensive kids can be.  Growing out of clothes, outgrowing bikes, sport fees, tutoring fees, movie costs, gaming costs, etc.  I have stopped replying with anything but a "don't I know it" and no longer add, "yeah, add $140/week therapy costs"...   I get the three-headed stare or a very kind attempt at solving that issue by saying "can't you use someone in network?".  This used to lead to explaining what a HDHP is and how mental health is never really covered under those and meeting the deductible is catastrophic health issues only ($9000 out of pocket).  So, it is easier to just know that we are making the right decisions - healthcare and financial - and stick with the "don't I know it"  because we do.  We really do and we are intensely grateful for it.

Annual expenses for being different
Weekly Psychologist                                   $140 x 52 = $7280
Monthly Psychiatrist for 2 kiddos               $120 x 2 x 12 = $2880
Weekly OT for 2 kiddos                              $50 x 2 x 52 = $5200
IEP Navigator for 2 kiddos                         $1000
Weekly Vision Therapy                              $80 x 52 = $4264
Medication 1                                               $97 x 12 = $1164
Medication 2                                               $25 x 12 = $300
Medication 3                                               $25 x 12 = $300
No WAY am I trying to tally up the probiotics, omegas, Kavinace supplements
Annual cost in CASH = $22,388

Confession - that all happened in a single year, but not this year.  That was a tough year all around - emotionally, financially, marital, etc.  We got through it with all the amazing professionals behind those line items. Doing all of that got us to stable mode, so now, we're more like this:

Bi-Weekly Psychologist                           $140 x 26 = $3640
Quarterly Psychiatrist                               $120 x 2 x 4 = $960
No OT
IEP Navigator for 2 kiddos                      $1000
No Vision Therapy
Medication 1                                            $97 x 4 = $388
Medication 2                                            $25 x 12 = $300
Medication 3                                            $25 x 12 = $300
Annual cost this year is $6588.

But here's the deal, many differently abled kiddos do not have parents that can afford out of pocket mental health care.  Even a GREAT in network psychologist didn't come anywhere close to handling what we needed with The Critter -flexible, demanding, kind, SMART, persistent, diligent, creative.  She is herself a unicorn in her field and nothing less would have reached The Critter(or dare I say, me?).
So, next time you see a vote come up or a political position on Early Intervention, teacher assistants, special education, paraprofessionals, IDEA funding, consider that caring properly for these kiddos who cannot get outside help benefits us all.  As the last post stated, these are OUR neighbors and OUR community, not some otherness that can be ignored.

Inclusion and Suicide - Fighting to Fit

This month, a child in our neighborhood with differences took his own life.

The previous post is about our family's wishes for peace and strength for his family and friends. This post is about my personal thoughts on what factors in a community environment might prevent a similar desperate act in my own children and other children with differences.  Specifically, how might inclusion play a part in helping prevent suicide in differently abled kiddos and the limitations inclusion doesn't fix.

Studies show that suicide ideation in the autism community is high and rising.  One study showed 66% of adults newly diagnosed with a form of autism, Asperger's, contemplated suicide. Another study showed that suicide is a leading cause of premature death in people with ASD.  If other parents of uniquely wired kiddos are anything like me, mental health is the top thing we worry about, read about, parent about in our kiddos.  This isn't just parents of spectrum kiddos.  ADHD, LD, developmental differences, SPD - the DIFFERENCE between how the critters think/move/behave/speak/learn and how most of the rest of the world does these things can make life HARD.  They may feel like aliens in their own community - dropped in from another planet. This is where I think inclusion comes in...

INCLUSION - such an easy word, right?  Simple.  Just don't exclude others.  Include them in the classroom, the community, etc.  Nope.  Even educational experts disagree on what really good inclusion practices should be and how to deliver them right now.  Some believe that FULL inclusion into general education with all services/accommodations being delivered in that classroom all the time is the goal.  Others believe that good inclusion does not always mean that education must happen in the classroom, and that self-contained classrooms where children do not encounter general education teachers, students or areas of the school  are appropriate.  My personal feeling is that good inclusion stretches the child's skills so they can develop while still servicing/accommodating them at a level so they can access their education. More importantly, how that is achieved best will look different for different children.

Our personal experiences have ranged from full general ed with poor supports whether those supports were delivered as push in(special ed teacher goes to general ed classroom) or push out(child goes to special ed room) to a self-contained classroom to pushing out into general ed with a 1:1 aide from that self-contained classroom to full general education with all supports delivered by the general ed teacher except when intervention is necessary.  At any point in time during our journey through all of those "settings", I never felt like it was the setting that was preventing or providing the benefits that come with inclusion. Sometimes  and thankfully rarely, it felt like the general education teacher was the barrier to inclusion. Sometimes, it felt like it was the other parents that were the barrier.  Sometimes, it felt like it was the other students.  Mostly, I KNEW that it was the DIFFERENCE mentioned above not being addressed openly that was preventing inclusion.  One time, it was definitely the principal preventing inclusion. Paradoxically, we finally found inclusion in a self-contained classroom setting, even if it wasn't the inclusion many speak of where a child with differences learns alongside his general education peers with smiles and friendliness. Instead, it was inclusion with the special ed teachers, the aides, the other children labelled "Emotionally Disturbed" regardless of their age(the classroom was K-5) and finally, inclusion with the general ed teachers with the special ed teachers as a bridge.

Through all of the placements and accommodations, we could never win the Fight to Fit.  It is 5 years past when things went sideways, and we still are Fighting to Fit. It is worth noting that The Critter is not prone to valuing others and so does not chase friendship, for lack of a better term. I worry that this will mean he is isolated as an adult, leading to depression and mental health issues, but that's what I worry about ALL.THE.TIME anyway. So, instead and for now, I am glad that he has a few peers he considers worthy of his time and is starting to learn what his peers do to maintain friendships - text, call, respond, share interests - but mostly glad that he does not eagerly chase trying to fit. I think for kiddos who are different and desperately want to fit, the absence of that feeling must be agony.

For inclusion to work, the environment it is being seeded into must be receptive.  If you place a child who blurts out, yells inappropriately, hand flaps, can't sit like peers, (insert your own difference here) into an environment where the students are not prepared to ACCEPT, let alone if a teacher is not prepared to accept, it will fail.  The child does not feel included if they are shunned by their peers and ignored by their teacher. Instead, they feel their DIFFERENCE even more acutely and even worse, they feel it is bad, unacceptable, unwanted.  I have read that anger/frustration turned inward is depression  - while it sounds like psychobabble-ese, it suits me to use that now.  Are uniquely wired kiddos more likely to turn anger inward? Are they more likely to turn anger outward, which leads to outbursts and potentially violence? Are they less likely to process those angry feelings and manage them?  My personal belief is a resounding YES!  So if the environment is not ready for inclusion, if the teacher and the students have not already had the groundwork laid so that they are capable of including others who are different and unexpected, Fighting to Fit is left as an internal issue for a child already fighting their brains, their bodies to just BE in this world not built for them.

I personally do not think that changes to educational policy on inclusion is enough on its own, and that policy on practices that change the tone of our schools and classrooms is required. Again, inclusion only works if the environment is ready for it. Our best placements were at schools that were diverse and intentional in their social emotional learning - for students AND for teachers. Tone and Inclusion are like the Calcium and Vitamin D of the educational world, I think.  Without one, the other one doesn't work.  I need to call out The Positivity Project here.  Our district is rolling this program out to help kids at a young age learn that other people matter and that those other people in your community, are still in your community regardless of differences. Across the 7 schools and all the different positive behavior and social emotional learning curriculum we've seen, this one strikes me as an amazing fit for children and teachers alike.  At our house, we like to tell the critters that "you live here, too" so that they understand that this is THEIR HOME, THEIR NEIGHBORHOOD.  This program strikes me as starting at the same point - these are YOUR peers and YOUR community, not something other and external that can (and certainly not should) be ignored and avoided.  Without that approach, inclusion is not inclusive from the point of the differently abled, it is simply sharing space.  I will say that without inclusion, which has been shown as beneficial for everyone, not just those who are different, there is no challenge to understand differences. Inclusion has challenged The Critter's peers and teachers enormously, but to the betterment of all of them.  The last time The Critter shut down in a general ed classroom, his peers were saying, "Feel better" instead of "What's wrong with him" or worse, laughing and pointing(YES, this has happened). The Critter learns that his peers are not unsafe, and school is not unsafe. His teachers and peers learn that he struggles mightily and is HAVING a hard time, not intentionally giving a hard time. Exposure works for both sides of the inclusion equation. It is the first step in the Fight to Fit - not feeling unsafe in your community just because of who you are. After that comes feeling accepted, supported and competent.  Shout out to The Autism Discussion Page for that language - safe, accepted, competent. It changed our lives, giving us goals that create a positive feedback loop for The Critter and everyone else so that everything else becomes easier.

My hope is that The Critter and Younger Critter will suffer just enough to learn and grow and not so much so that they give up on peer relationships. What keeps me up at night is that much of this is out of our hands, and instead in the hands of the parents of their peers to teach them to be curious of differences instead of fearful. As the critters age, my influence on them dwindles, and their peer's influence grows.  If peers are resistant to getting to know them, let alone downright cruel, where does that leave the Fight to Fit?

I'll close with a fantastic resource for everyone, the National Alliance on Mental Illness(NAMI). There is support for suicide ideation, family members, community alliances, and much more.
Reach out to support that is there, please.  AND, if you're in my neighborhood, send your kiddo over.  I guarantee they will be safe and accepted in our home.

Tragedy "On the Spectrum"

A young man in our neighborhood took his own life this month.  We did not know him other than having seen him perform for his next belt at the local karate dojo where our son went or to see him walking in the neighborhood.  Still, it hit hard knowing that a young person in our own neighborhood, who went to the same schools our critters will go to and was a member of our community battled internally so much that he saw this as the best solution, even for a moment.  Our thoughts and love go to his family and friends he left behind.

Here's where it took an even harder toll.  A fellow neighbor confided in us that he was "on the spectrum", and while that phrase could mean a myriad of things coming from a neighbor who also was not close to the family, to us, it means that another child battling anxiety, autism, attention like ours do did not feel safe, accepted and competent and certainly not included, enough to know that this was not a solution.  Again, our thoughts and love go out to his family and friends he left behind, even more so because we can relate to that phrase, "on the spectrum" and know it comes with an otherness for The Critter and our family that no intervention seems to change. Hugs and strength to all "on the spectrum".

After starting this post about Fighting to Fit, I find it more fitting to end this post here, simply with wishes for love and strength to all, especially our neighbors whom we did not know but wish we had, if only for them to know that they are safe and accepted by us in all their glorious differences.

Educating the Critters on Girls! Girls! Girls!

The critters are 10 and 12 - 5th & 7th grades and both are boys, both precocious in their own ways. Younger Critter googled his first "big sexy boobs" last year and The Critter did it just a couple weeks ago.  So, HOW to do more than only provide information or even only teach basics but instead fully ingrain sexual confidence and respect for self and others in today's age of easy access?? I do not have that answer, but that isn't stopping me from trying.

Most recently, in addition to the more typical books on bodies and sex listed further on in the blog, I purchased one called S.E.X. - The All-You-Need-To-Know Sexuality Guide to Get You Through Your Teens and Twenties.  Chapter 6 on how sexual entertainment media is not real and never has been was quite helpful in explaining WHY I didn't want them ogling parts on the internet....  Oh, and there's a great introduction for parents in the front, too.  Helped me get past the too much information too soon worry.

This book is FAR more than the critters need as 5th and 7th graders.  However, all the other books I could find failed to address an important concept - sexuality.  Not just how it happens, when it should happen and respectful ways for it to happen, but the real formation of one's sexual self.  I certainly do not want the critters to grow up ashamed of their bodies and sexuality, but I also don't want them to grow up feeling like it is simply fun without any need for great thought and reflection.

It seems that many peeps of my generation or older have a level of secrecy or shame or discomfort with who they are sexually.  It also seems that many younger than myself have an openness and freedom in behavior, online and in person, that obscures the gravity of growing this part of ourselves in a healthy way and then sharing it with others.

So, I bought The Boy's Body Book and American Medical Association Boy's Guide to Becoming a Teen.  I also bought the girl versions of these books for the boys.  They're great basic books, but are just that, basic. They miss the decisions that start this early that form sexual health - the decision to google or not to google, the decision to text about sex or not, the decision to ask someone out just because your friends are doing it and on and on and on.  They lack the words that tell our kids that they OWN their bodies and growing this in a safe and healthy way is THEIR responsibility. They certainly lack the words that show how this is done aside from abstinence vs. safe sex, it is a big gaping hole in sex ed across almost all sources.

These books weren't the start by any means.  When my 3rd grader came home saying that a boy on the playground said that "girls like to lick dicks", I knew it was time to start talking about not just how the parts work, but also respect for others sexually.  This goes waaaaaaay beyond "private parts are private" because well, as our kiddos reach adulthood, those private parts aren't so private anymore.  They will likely choose to share their parts and want to have others share with them, too.  All the positive body books in the world don't touch upon that at all, and the ones that do barely go beyond, "make sure you and your partner are ready" and then jump right in to the safe sex options.  However, eons before our kiddos reach THAT point, their sexual self has started to form. Their sexual perceptions of others has started to form.  I wanted to have THAT conversation with my boys. As a feminist, or at least that's what my house full of men tell me I am(hah!), I wanted to make SURE that they viewed females as sexual equals - not to be degraded or used or put on a pedestal.  I wanted to make sure that CONSENT was not just something thought of legally or at the last minute, but that they understood it is a process.  It is a process undertaken by responsible partners having adult-level conversations and requires deep communication and understanding of your partner.  If you don't reflect and understand yourself sexually, how do you have any chance of TALKING to another about it?  I know they'll be uncomfortable when they reach the sharing stage of their bodies, and that is a rite of passage I wouldn't take from them for all the world(first holding hands, first kiss, first sneaking the arm around the shoulder, first.....) but finding ways for them to reflect upon what they might want out of a romantic relationship as they grow seemed to be limited to mom talks.  YUCK!  They're both still pretty comfortable bringing any and all thoughts to mom for listening and discussion, but that is a'changing - as it should.  No boy going through their sexual growth wants to talk to MOM about it.  Ew Ew Ew

So, enter a book for older kiddos that helps them establish healthy concepts of sexual self.  Oy...

FYI - think your kiddo isn't looking at "stuff", yet?  Just ask them what an eggplant emoji means.  If they giggle or panic, you're already behind talking about SEX and electronic communication.

Committing Hubris and Teacher Disposition

I follow a lot of educators. Having critters that are truly unique and challenging means keeping abreast of educational trends & regulations locally and nationwide. This means I have lots of knowledge about education and NO, ZERO, ZIPPO experience.  I know, as a parent, we are the most important teachers our children will have.  As true as that statement is, I will NEVER know what it is to juggle educating my child along with 30+ other unique kiddos across all subject matter or educate >150 kiddos across a single subject matter, all while managing meeting standards, curriculum, growth, enrichment, supports, and all those other words that seem mainstream, but have a much deeper and specific meaning in the educational world.  So, I know that I am about to talk about something where my experience is only the breadth of the laser pinpoint that I am afforded as a parent of two children being educated. It is not that of an administrator or teacher in any way, shape or form, so forgive my hubris and if you are an educator, maybe read the post on perspective before you judge my perspective too harshly. As I've said to The Critter numerous times, perspective is like a cube, you cannot see a different perspective except as it is described to you by the person on the other side of the cube and you certainly cannot experience it.

This image was shared via Twitter by an educator in our district attending the annual leadership training where I am sure all the attendees heads were overfull of information each day. I, in my laser-width world of perspective, get to only think about THIS image and under context only of MY kids.

As you can see, it is very simplistic and only diagrams academic press levels with personal warmth levels.  If you google "Teacher Disposition", you will find MANY images of different traits postulating ideas on what makes a teacher great.  I'm not doing that here; that is a topic for peeps with far broader experience in education than mine.  This image did make me wonder, however, if there is a "type" based on these two traits that is preferred by each of my critters.  The Critter tends to take an immediate like or dislike to others and while this has improved as he has matured, this image made me wonder if there was a correlation across those experiences and these traits and if so, could that affinity then be correlated to his personal strengths and weaknesses? 

The answer was a resounding YES!!  The Critter is not easy to get to know - his anxiety makes him hide who he is and mistrust. His high IQ has led to him not valuing others as a resource for valued information. His dysgraphia has led him to believe that people in authority cannot help him and that he, himself is useless.  This is all improving, but is fairly accurate historically.  So, what number type above leads to the most effective teaching for him?  NUMBER 1!!!!  Demanding a lot and supporting a lot emotionally as well.  Hard to do with a kiddo who's cognition is several grades above and adaptive behavior(self care rating) is several grades below...  A NUMBER 2 will lead to meltdowns as when he has a problem with the work(frequent due to dysgraphia), he will NOT be able to overcome the thought that the educator does not care and is not capable of helping him which forces engagement by a trusted adult to help solve those problems over and over throughout the year.  NUMBER 3 creeps him out - too touchy feely, too interested in him without the intent of academics.  NUMBER 4 he will simply ignore as he can wait them out and do what is EASY (and that sure as double hockey sticks is NOT schooling).  

Now, Younger Critter....different profile and has had more success "schooling".  His anxiety is almost always secondary to the ADHD.  Manage the ADHD and you have low academic anxiety.  Younger Critter's preference is NUMBER 3.  He does not like to stretch himself academically - at all!  NUMBER 1 would be survivable, but NUMBER 2 and NUMBER 4 mean tears.

This is horrible.  Even with my hubris-filled perspective, there is something just wrong about breaking down teachers to a single number based on two traits.  I'm sure there's value in it as it has clarified a few things that work and don't work for my two critters, but it just. feels. so. icky!!  Every teacher the boys have had has are valuable to us - although some were the value of knowing what doesn't work Most gave us the values of growth, flexibility, social interaction, amazing coping and scaffolding ideas....I could go on and on.

I hope this image has been as intriguing for you as it has been for me, but then again, I overthink EVERYTHING (one of MY superpowers!), so maybe I should hope it's just a little less thought-provoking for you than for me.  😝