Movie Man Hits Middle School (Yes, another parent smack down)

I am afraid for Movie Man.
I am heartbroken for him.
I just don't know what to do.  I have most often advocated for him and intuitively believe much of what he is displaying behaviorally is systematic of other issues.  Hubs and I don't always agree on Movie Man's motivation or reasons for certain behaviors.  That causes some tension.
Well, Movie Man started middle school a few weeks ago and I wish I could report that all is calm in our house, that he is adjusted, happy, and learning.


But I can't.


He was sent to the principal for not stopping whatever he was doing after several warnings and cues from the teacher.  A very seasoned and tolerant teacher who gets it.


When Movie Man came through the front door after school, the very disjointed story of being sent to the principal spewed out of him before he made it to the living room.  


However it was unbearably frustrating because Movie Man is not very articulate when retelling a story.  It is hard for him.  Really, really hard.  So, his anxiety mounts as his father and I ask questions for clarity and our anxiety mounts as the questions go unanswered.  It's pretty ugly.


Thank goodness his LD teacher called within 30 minutes of the school day being over.  Hubs takes the call and LD teacher shares the story, shares some observations, shares he might be overmedicated, shares she did not know what else to do when Movie Man could not get unstuck and shut up.  Really.  What else could she do?  Changing the environment, the pace, any variable is best for getting someone unstuck.  She did the right thing by getting him out of the room.


So Hubs decides the best consequence is to write a letter of apology and try to get Movie Man to really figure out why he gets so stuck.  Great in theory and I supported this, but I knew Movie Man could not possibly articulate the why of it all. He truly was sorry.  But I don't think he really understands how disruptive his perseverations are.  He is not making the connection, the cause and effect of it all.


Anyway, Hubs sat with Movie Man and as patiently as possible tried to help Movie Man probe into the why of it, how to organize the letter of apology.  They got through it with Hubs scribing.  Movie Man was frustrated. He truly was clueless about the why.  He was even having trouble remembering the teacher warning him. Then Hubs gives the directive for Movie Man to rewrite the letter in his own handwriting and tweak it to make it even more Movie Man's voice.  


And that is when yet another battle of defiance broke out.  No TV until the letter is done.  Stalemate.  Hubs ups the ante by harping and nagging.  Movie Man digs in even more.  Hubs won't leave the room.  Movie Man won't move off the couch, pick up a pencil... nada.


I suggest Hubs just leave it. Walk away.  I say, "I trust Movie Man will do the honorable thing and get the letter rewritten."  I then say I am going upstairs to fold laundry and remind Movie Man not to turn on the TV.


As soon as Hubs and I both get our of Movie Man's space, the letter gets done.  Beautifully done.  
And even though that was a proud feel good moment that provided some parenting emotional relief, I still feel sick about what is ahead for my sweet Movie Man.


Is he only OCD and not AHD?  Is he also on the spectrum? Does he have a borderline personality?  


How the hell are we going to get him to adulthood?

On The Home Front

Summer is here.  The kitchen is open 24/7.  Soggy pool towels and swimming trunks litter the kitchen and bedroom floors.  The dog is smellier.   New reasons to loathe my body as more parts are exposed because wearing a wool sweater to the pool doesn't work.  The noise level is much increased as the boys are annoying each other for sport.  


Movie Man hit a wall when summer school started.  It was ugly.  His anxiety is debilitating and as his mother it is time to find more aggressive and therapeutic approaches to relieve his pain.  I signed him up for two summer school classes at the middle school he will attending next fall.  The thought was that time spent this summer in his new school would help alleviate some anxiety in the fall.  I carefully chose nonacademic classes so he could find ways to shine and demonstrate his love and knowledge of things he has skills.  So Movie Man is taking Leadership in Film and Digital Editing.  Perfect for him, right?


Nope.  Hub and I have had to literally pull him out of bed, carry him to the shower, put him in the shower and dress him more than once.  Movie Man gets so irrational he is unable to even express his worries.  It is all just a bundle of intensely uncomfortable feelings he has no language for, no maturity to understand.  All he knows is that he has to fly.  Adapt, move on or die.  Flight or fight.  Hide under your bed, make outrageous emotionally charged statements in hopes your parents will feel so sorry for you they will let you quit or run away.  


Well, none of it worked.  While my heart broke for him, I knew I had to see him through it to the the other side.  I had to show him I believed he would be OK.  I had to show him he could do it.  


So after days of very troubled and upsetting mornings, he now goes off to summer school barely on time, but anxiety free.  With patient persistence and acute observation and quick calls to his teachers to check in so we could correct Movie Man's perceptions of what was going on, we were able to learn more about Movie Man.  His learning disability and processing speed make him feel he is going to miss important information.  And he does miss important information.  But once he has the information he needs, he is very capable, insightful and a wonderful contributor to his classes.  It is that space between what the teacher says and when Movie Man is supposed to respond or perform that he gets lost in the abyss of anxiety.  The anxiety then makes it impossible to listen and understand.  The cycle is relentless.  It is debilitating.  It is paralyzing.


Add to the summer to do list.... get a good cognitive behavioral therapist for Movie Man and a good pediatric psych for a medication consultation.


Superman is now taking piano lessons from a lady in the neighborhood.  He looks so absolutely autistic when taking his piano lessons.  Parent Smackdown!  All that autism affect kicks in when he is in a new place and it is not pleasant to watch.  But, I am learning how to help him.  I sit next to him in his lessons and the teacher is a dear.  She is willing to stick with it, wants to learn how to help him, and is very flexible.  I love the methods she uses and we are sticking with it.  30 minutes is too long.  So I take the visual timer with us to the lessons and set it for 20 minutes and put it on the piano.  We practice in bits and pieces throughout the day in short little blips.  I have learned that once Superman is shown what to do, he does it flawlessly.  It will be slow going.  It will be challenging. We will all benefit.


And best of all... Movie Man and Superman can be left alone for up to 2 hours!!!!!  Oh the freedom!  


I am off to lunch with my best friend.  The boys are engrossed in making a movie.  I know they will call me a hundred times while I am away.  That's OK.  We are clearly moving forward and that is cause for real celebration.

Sometimes My Head Is Too Busy And My Heart Too Heavy

I have come to my desk numerous times since I last posted but end up just staring at the screen.


My head is swimming with ponderings about so many things.  When I try to sort them out and categorize them, I can't.  They are a jumble of inter-related bits and concepts that I cannot separate.  They include all things special education, best practice in general, political points of interest that are not working in effective education's favor, poor school administrators......well, you get the picture.  you really do not want to peek inside this head right now.


My heart is heavy on behalf of an incredible friend of many years (and a state away) who is grappling with what is best for her son with Down's Syndrome.  She and I have always gotten each other, but now that we have special needs kids in common, it is an even tighter connection and I love her dearly.  I admire her beyond words.  And as I write today's blog, I realize that is what this blog is meant to be about.  


Let me list my other heart heavy issues and I will return to my Incredible Friend's (IF)  current battles.


My heart is heavy on behalf of Movie Man.  His challenges are great and he surely must be a genius to be experiencing any successes in school.  
I am heart heavy when I watch what has happened to my program in my absence, how ineffective public education can be and is in too many cases. 
The biggest contributor to my heavy heart is my inability to figure out if I should go back to  my old job or cut the cord and move on.


So, back to IF.  She and I met as teachers.  We taught in the same elementary school.  Me as an LD teacher, her as an SLP.  I learned a lot from her.  We were very dedicated to collaborative co-teaching when appropriate and even presented about our findings at our state board of ed conference one year.  It is remarkable that I have not driven her crazy yet.  I am a fly by the seat of my pants kind of gal.  She is much more precise and thorough.  We have differing opinions and practice in some pretty major parenting ways, but we respect each other greatly.  She is a true friend.  What we have in common is our love for our kids, our belief in our kids, our advocacy for our kids.  We understand each other's pain and heartache.  We understand each other's rage and frustration.  We confide some of our ugliest thoughts about parenting special needs kids.  In fact, she is the only one I am completely honest with about the realities of parenting my kids.


Anyway, IF is in the throes of a big battle.  Not only with the school, but I think within herself. This is common among those of us with special needs kiddos.  This tricky balancing of advocating, wanting our kids to be normal, wanting the world to accept them and accommodate them, with what our kids can really handle and accepting their limits.  


This means that we have to abandon (at the very least, adjust) so many of the dreams we had for our kids while they were still safely in our wombs.


So, IF has a 4th grade son with Down's (Delightful Boy).  He has significant communication challenges, sensory issues, health problems, and a really crappy IEP team.  IF has fought to have her son fully included all along.


But it seems she is at a significant crossroads. It seems that the team has reached its potential and limits.  It seems that Delightful Boy has also reached his tolerance level for much of his school day. For whatever reasons.  For reasons nobody on his team has taken the fricking time to figure out!!! There has been no systematic analysis. There has been little to no communication with IF about the specifics of Delightful Boy's behavioral changes. The latest communication she got was that Delightful Boy was passing gas in class at a much more frequent rate than in the past.  


WHAT???  Are you kidding me?  


'And, by the way, Delightful Boy is flatulating a lot.'  So, what is IF supposed to do about that?  Is it louder, stinkier, accompanied by discomfort, causing disruptions in class, affecting social interactions?  


IF has also detected a bit of a conspiracy among the team members... like they are building a case for some argument to change Delightful Boy's placement....nobody is talking.


And then IF gets the IEP invite and on the list was the school social worker, who has never been part of Delightful Boy's team.  


OK, that just wreaks of foreshadowing a shoe dropping at the IEP meeting.  IF is not stupid, could write meaningful IEPs in her sleep, and knows her rights.  The team obviously underestimates her and they certainly are not using her as a resource. It has turned into an us against the parent dynamic and I fear Delightful Boy will get lost in the battle.


It is hard enough for a parent to sort out what their special needs kid needs.  But to try and sort it out objectively when you are battling an ineffective team is impossible.  You need to be able to objectively consider what is best for your kid...but to remain objective when facing a team you perceive as borderline hostile is impossible.  Objectivity is easier when you are sitting across the table from people you know love and care for your kid, who really know your kid and have taken the time to understand him, who believe in your kid.


To sit across the table and develop a meaningful strengths based IEP is absolutely impossible if you (the parent) do not trust the perceptions of the rest of the team.  All your energies have to go to advocacy and 'selling' your child's strengths to a group of people shaking their heads in disagreement.  Your energies cannot possibly be spent in developing an IEP based on mutual beliefs about the student.


I plan on attending this IEP. No parent should have to face that alone.  


I will do all I can to listen objectively to both IF and the worthless team.  I will keep Delightful Boy in mind the whole time and I will insist this IEP team address his specific needs and if they cannot articulate in enough detail what his needs are, I will insist they do FBAs and BIPs  and reconvene the IEP until they can prove they know Delightful Boy and have a plan to help him grow in his way and in his time.


I hope I don't get escorted out of the meeting for disorderly conduct.


I love you, IF!