A Crisis of Faith

While my personal faith remains steadfast, I have lost faith that my kid’s school can reliably educate my son. I no longer believe they care about him. So, what do you do when you no longer believe that your school can uphold an IEP?

I’m in the process of trying to figure out what to do. My problem is my son can’t wait much longer. He is getting more and more determined not to attend school. He will do anything to get out of working. It wasn’t always this bad, but school and my son never had a positive relationship. My son’s mind is in pain and I feel helpless. I’m not, but if feels that way.

I know the challenges that schools are facing. I know about the funding issues. Even at the federal level we haven’t seen changes to IDEA (Individuals with Disabilities Education Act) in about 10 years. With inflation, rising diagnosis, and equipment cost we should view that as a cut. North Carolina isn’t funding it schools properly and it is showing. I believe to some extent I’m watching the consequences of underfunded school systems play out in my son’s school life. I see the lack of adults in the building. I met the school psychiatrist for the first time this year and my son is in third grade. I see the teacher and support staff shortage in the inability to keep so many special ed teachers and the revolving doors of OT (Occupational Therapist).

I was even told once that the school was using too much of its resources to handle my son and other kids weren’t getting services. I of course told this person that allocation of resources wasn’t my job, but his. It illustrates just how ignorant schools can be when it comes to mental illness and autism. The implication of the phone conversation wasn’t just lack of school resources, but also that I needed to discipline my son and get him to act right in school. That isn’t how autism and anxiety work. I can’t just take away his video games if he has a violent meltdown and expect different behavior. I tried it. It didn’t help. Please know that we, as special need parents, have all have tried. We’ve tried everything. We’ll probably continue to try everything.

There seems to be very little understanding of what autism is and even less about a child dealing with both autism and anxiety. Chart to the tops and current social emotional learning projects like Positivity Project aren’t helping. Social emotional help needs to be deeper and not on display to the rest of the class. My son needs an IEP that is supportive and followed not just by its literal accommodations, but by all things we as parents add to describe a child’s behaviors, triggers, and needs. Those paragraphs in the beginning of the document matter too.

The IEP process is filled with potholes and flaws that I’m only now beginning to understand. It is an agreement of services between the school and parents of a disabled child. My problem is how do I agree to things I am not really understanding. We don’t have textbooks, we don’t have a curriculum that is easy to understand not to mention the constant tweaks and changes. Often I don’t have any idea what my child does during the school day. I have to trust the school. After my son has more than a few meltdowns, the very thing an IEP is suppose to prevent, how do I trust the school? I have to trust that school isn’t motivated by funding. I have to trust that they care about my child’s education and not their own reputation. I have lost my trust.

The worst part is that I feel like there is very little accountability. I don’t want to sue, but I can see now why so many parents do go a legal route. It seems like one of the few ways to get action. In Wake County, we have the family and community connections program. It is a resource, but has no answers when you tell them “I’ve lost faith in my school’s ability to uphold my child’s IEP.” They urge you to work it out with the school. This isn’t helpful when a parent feels alienated.

Who is watching this process. Do red flags get triggered anywhere when a special needs child gets suspended in elementary school? Do our counties in North Carolina watch over anything but test scores? Do they have regular inspections and audits? I honestly have no idea. I’ve got time to write emails to school boards, attend meetings, and even write a blog post. I get accountability by my advocacy. How do others get it? I do know more and more parents like me are leaving public school.

In many of my public speeches, I warned others that the lack of funding in our schools here in North Carolina could lead to problems with IEPs and our most vulnerable kids in public schools. I really hate that I’m watching it play out in my own son’s educational life. I wanted to be wrong. I also know that I live in Wake County North Carolina. We are wealthy in comparison to others. What must other parents and children be going through? How many broken promises? My faith is shaken.

I write this on the eve of going in to a very tough meeting with the school tomorrow. I have a team to back me up, but we are facing uncertain changes. I left out names intentionally. I write this for myself, to voice my fears. Drop me a line, but know that I’m supported. Know that others may not be. This is what keeps me up at night. It what gets me back on podiums to speak. I believe in public education. I believe we need to strive to make it better for all children.

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I should have celebrated Festivus Instead

It is difficult to put into words how isolating the holidays can be for autism families.  Everything is out of whack.  My child is overstimulated one moment, and then asked to roll with the unexpected the next.  It is a season of meltdowns and friends are few.

On Christmas Day my son in the midst of a breakdown on a city sidewalk declared,” Christmas is making me crazy.”   To be fair, it was the sugar, lack of a clear schedule and different environment, but all that encapsulates a fairly typical holiday for most of us.  For my son it feels anything but typical.  It also can make one feel isolated.  Why am I not enjoying this?  Everyone else seems to want me to be happy.  I know my son feels this, and quite frankly so do I.

I spent my holiday break on a constant vigil.  I was trying to keep track of how many cookies and sweets my child ate.  I was trying to figure out what to do to keep him occupied away from home and in an environment fairly foreign to him.  I was basically on meltdown watch 2018.

There is also a sense of  my own isolation.  I know others are participating in holiday events.  Many are too crowded for my family to enjoy.  Others  events we are simply not invited to join.  My son doesn’t have a social group.  We don’t have swim team friends, or soccer team friends.  He isn’t really interested in being around large groups of children.  One or two is fine, but there is anxiety in numbers.   When many social interactions as adults revolve around our children, the more isolated the child, the more isolated the parent as well.

As for my faith during the holidays, I have always been inspired by the verse in Luke that says, “But Mary treasured up all these things, pondering them in her heart.”  I don’t need a fancy church service or even nativity scenes to celebrate my faith.   Quite frankly the pageantry of church at this time of year can be dysregulating to my son.

Then end of school can be awful.  All my son can do is think about getting out of school.  The performances and the year end activities can send him into free fall.  Meanwhile, it can also make going back to school another day, or even returning after break that much harder.

Getting back to a routine never felt so good, as we enter a new year.  I’m not by any means recharged, but that’s OK.  I’m ready.  After tears and some self esteem help, so is my son.  Maybe next year I’ll just celebrate Festivus.

 

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Self Care and Oprah Quotes

Motivation: If a pretty poster and a cute saying are all it takes to motivate you, you probably have a very easy job.  The kind robots will be doing soon.

One thing that seems consistent in many Autism, or even just parent seminars and conferences, is a session on self care.  I have often left those sessions feeling more stressed than when I entered, and more than a little annoyed.  I come away thinking, if I see another motivational quote on a pretty picture, I’m going to blow.

I’m not against self care.  It can take the shape of getting fresh air, a diary, or daily exercise. As long as you do something you enjoy, you get something positive out of it.  However, most self care seminars also seem to insist that I also have a sunny attitude in my daily life.  They promote optimism as a way to deal with my struggles as a parent.  They put endless amounts of quotes up on slide show.  One speaker even suggested we could all take optimism training.  It completely stressed me out.  I mean I’m sitting there in desperate need of a haircut, hoping to learn how to carve more time out for myself, and now I need to fix my entire outlook on life. I have come away from so many of these conferences more stressed than when I went in.

What I need most days is just permission to have a bad day.  Permission to see the world as it sometimes is, a total piece of crap.  I don’t live everyday like this of course.  I just need to not feel bad about it when it happens.  I need to permission to have a bad attitude when things are just bad.  What gets me is the seminar speakers (who rarely have credentials in anything) that say live your feelings, and then in the next sentence promote how important to be optimistic.  They put cute pictures of how I don’t need to be Super Mom, but that was never my goal in the first place.

Long ago, watching the Daily Show (back in the Jon Stewart Days) an author by the name of Barbara Ehrenreich promoted a book named  BRIGHT-SIDED: How the Relentless Promotion of Positive Thinking has Undermined America  What I got out of the book was permission to be me.  I’m not a naturally positive thinker, yet for the most part I’m a fairly content person.  The relentless pursuit of happiness stresses me out.  I’ve been through chronic pain.  No, it doesn’t help to have a positive attitude.  Anyone who has suffered migraines knows that no amount of positive world view will take away very real pain.  Its ok to be mad, angry, and indeed feel pain.

So, yes to long walks, time away to get my haircut, and writing for my self care. No, to trying to make myself believe in the power of positive thinking.  That’s not say I see my child in a negative view.  I don’t.  He is wonderful and his mind is amazing.  I just also deal with his struggles in a very real way.  They affect me.  I’m not going to lie.  My child’s struggles are real and need real solutions, and not just a pretty picture with a quote.

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Get To Work: You Aren’t Being Paid to Believe in the Power of Your Dreams.

These are hilarious especially if you worked in an office: https://despair.com/collections/posters

 

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Voting and Community Engagement

The first time I ever stepped into my son’s local public school was not to take a tour.  I didn’t even have a child yet.  The first time I walked into my son’s elementary school was to vote.  While using schools as polling places has met with resistance from parents and others recently, I consider it the perfect place to vote.

I’m not going to downplay parent’s fears.  I understand the world.  I’m not naive.  However, I think having schools as polling places is a positive thing.  Members at large who may not ever go to a public school, or have children get to interact with our space.  I wish I could label things purchased with PTA money, or donated by a teacher, but that might be going too far.  Still they might spot outdated laptops.  They might spot a leaky roof or a gym that is obviously too small to hold all the kids they see in the hallway.  Maybe if they spot a teacher they’ll remember a teacher’s march or article about low pay.

This year my PTA is having a bake sale.  It might sound ridiculously old fashioned, but I love the idea.  Voters will interact with school leaders.  Maybe they’ll make a connection. Maybe they’ll join our PTA and volunteer.  I hope they see vibrant and happy kids, because we have great public schools.  At the very least they might give just a little to our school and purchase a baked good.

So how do I address the real fear of school safety?  I believe that is done in the voting booth.  We don’t need to keep the public out of our school.  We just need to make a safer stronger society.  I believe we do that by electing officials that believe in gun sense legislation.  That entails stronger background checks.  That means the banning of military weapons in the hands of civilians.  Weapons like the AR-15.  I think we need to have a strong support staff, so we need legislators to step up and vote for better school funding.   We need more Teacher Assistants and better teacher ratios.  Most of all, we need counselors, school psychologist, and school nurses.

For those of you with kids attending a school that is also a polling place, embrace election day.  Talk about it with your kids.  If you haven’t voted yet, take your kids in to vote with you.  Most of all, think of the very building you stand in when you cast your ballot.

 

 

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Happy New Year

Happy New Year!

I realize it isn’t January 1st, but to me the start of a new school year always feels like a new beginning.  Since I’m currently a stay at home mom it basically gives me my life back.  Summer is rough for me.

This summer was for the most part a positive one.  Yes, there were meltdowns, and a few very public ones that I don’t want to relive.  At one point, my son melted down in a craft store while buying supplies for a reward jar.  He noticed once that someone had a service dog for autism, and very seriously asked if he could have an autism cat.

E doesn’t crave social interaction with other children, so I spend a great deal of time with him during the summer.  I get very little down time.  Plus if E is dysregulated, I’m not even getting out to the grocery store that day. I could enroll him in a camp, but so far he isn’t really interested.  Forcing my son into things generally ends badly.  My summer is good, but it just feels a bit lonely.

Still the thing about summer is that I have some control over the environments that I enter.  I can plan a vacation around E’s issues.  It gets harder the more people that are in the mix.  You of course can’t plan out everything, but man do I try.

Here we are about to embark on a new school year.  I want to tell the teacher a million things.  I’ve already met with her and his special education teacher, but I’m sure we’re missing something important.  I feel his anxiety, and I’m sure he can feel mine.  I want to continue to control things, but I know I can’t do that.

So, raise a glass with me and drink to the New Year.  Let’s collectively take three very deep breaths.  Finally cheers to what hopefully will be a great year.

 

 

 

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Chasing Fireflies

Going to a cookout for most families is nothing exciting.  For us, it can be a big deal.  First, my family is not invited out much.  Second I never know how my son will react.  He is getting better about being around little kids and tolerating other kids, but I know it can also be a struggle.  So this Saturday, I took a chance and decided to take a friend up on his invite.

My son went in actually excited.  To be honest, if he wasn’t excited I might have just stayed home.  I decided long ago that pushing social events on E is never a good idea.  When he says he’s not interested, he means it.  We got there a little late, thanks to a PTA meeting, but it did mean that the food was ready.

As usual, my son wasn’t interested in any food that was not easily recognizable.  He did manage some fruit and chips.  He seemed content.  The majority if not all the kids were in living room watching a movie.  E was invited to join them.  E refused and followed me outside to eat.

While my husband and I talked state politics, E was enthralled with something else.  The house was located near an airport and the planes were closer than they are at our house.  He loved it.  Every time a plane went above our heads he watched and smiled.

Later that evening with the adults circled around the grill, E got up and was running around the backyard.  He was basically acting out the book, Why Can’t I Fly.  He had a stick and told me maybe this could help me fly.  He smiled and continued to play happily.  When it got dark he started chasing fireflies as he ran across my friend’s backyard.

So maybe he didn’t make any friends that day.  He didn’t try any new foods.  However, my son had a wonderful evening chasing fireflies.  I can’t think of a better way to spend a summer evening.

 

 

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The Teacher is Out of the Classroom!

Hello!  It’s been ages since I posted.  Below is something I wrote before the NC May 16th rally, but I edited it a bit.  I will post my speech, my pictures and my reflections on the rally soon.  While teachers lead the charge, there is so much that we as parents and the community can do to help….

     It happens every Spring Break and many times over the summer.  My son and I run into a teacher at the grocery store. It almost feels like a wildlife encounter.  Look, son, Magistra in ludo non est. Translation The teacher in not in the elementary school.  Suddenly my talkative son is quiet and treats his teacher like they are an escaped animal from the zoo.

     To students, seeing a teacher outside of school introduces the strange idea that teachers are real people.  They indeed shop for food at local grocery stores, they may have children of their own, they are in fact human.  While it might be OK for an eight year old to be a little shocked that teachers are in fact real people. It is in fact not OK for our North Carolina General Assembly to feel this way too.  In many ways, this is why teachers marched on May 16th.

   It was called the Rally for Respect for a reason.  Our teachers are indeed real people. They are neither saints nor sinners.  They are professionals. We take their sacrifices for granted day after day. Our state leaders pay a lot of lip service in support of our teachers.  However, reverence is not respect. Just like all professionals, teachers just want to do their job well and the resources to make that happen.

     We have veteran teachers who have had their pay frozen for years.  The NCGA have taken away incentives to stay a teacher in North Carolina.  They’ve taken away longevity pay, and they’ve gutted benefits. The NCGA have created a system of merit based pay that highlighted North Carolina’s poverty issues more than highlighted talented teachers.  We need raises for our teachers without complicated strings attached. This is how our state can show respect.

    Our teachers sometimes work in infested buildings.  They have outdated textbooks or no textbooks at all.  Our teachers are forced to fill in gaps in funding our state has created.  Our low per pupil spending means teachers and even PTA are forced to meet the need for the most basic supplies for our students.   The NCGA should invest in our schools. They need to raise our per pupil spending as well as invest in a statewide school bond. That is how our state can show respect.

    Above and beyond, teachers are asking to be heard.  For too long, teachers have been denied a seat at the table.  Teachers deserve to be heard when it comes to curriculum decisions , class size, and testing.  They are truly experts in education and deserve a louder voice in how our schools are governed.   That is how our state can show respect.

     On May 16th our teachers gathered in downtown Raleigh.  My son and I joined them. That was one way I showed teachers respect.  Our teachers laid out demands to our legislators. I will encourage my elected officials to listen to our teachers.  That is another way I plan on showing our teachers respect. Finally, there will be General Assembly members who don’t listen and even some who will continue to show teachers disrespect in the media.  I plan on voting them out. That is a way we can all show our teachers respect.

Susan Book

 

 

    

 

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Spring Break

I was filled with excitement this week.  My week was busy and tiring, yet I couldn’t hold back the feeling that relief was on its way.  For the first time in ages, I was looking forward to Spring Break.  It is strange.  I’m not going anywhere.  I have no elaborate plans during the week.  It is in fact going to be rather dull.  I’m not even a student myself.

However, I’m going to be gifted a break from school.  I’m being gifted a break from the anxiety, the fear and the anger that goes along with it.  More importantly my son will be getting a break from those feelings as well.

It is only recently, I realized how much anxiety I hold each day my son walks into the school.  I know he has the potential for great things, but I also know he has the potential to erupt into a fit of bad behavior.  I jump at phone calls during the day.  I clench at car pool waiting to find out his teacher’s report.  Even emails sometimes make me skittish.

Don’t worry I have help.  I also have coping mechanisms, but sometimes the reality of my life can just be a bit much.  No matter how many miles I run, or friends I call for help, my son still might have a meltdown at school.  I really needed this break.  I now have to keep my son from having too much screen time.  I have to monitor what snacks he eats, because he is a kid who likes sugar.  I have to drag him reluctantly outside for some real exercise.  Still all that pales in comparison to reading another email about how out of control E’s emotions were at school.

Here I have a small bit of control.  I can see when my son is disregulated.  Sometimes I can help him, sometimes I can’t.  Still I can see if I lost my temper and it triggered my son, or it was just literally spilled milk.  There is a relief in knowledge.  I know his day.  At school that isn’t always the case.

So it is time to remind my son to take a break from screen time and see if he’ll help me walk the dog.  It is going to be a quiet Spring Break, but hopefully it will bring some relief to our stressful lives.  Plus the dog gets more walks.

Happy Spring Break Wake County North Carolina and Beyond!

 

 

 

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Day Interruped

I was going along my normal day.  I was trying to work down my “To Do” list of totally unpleasant chores.  I managed to get a work out in, and I was cleaning up.   I had just finished my post work out shower, when I heard my phone buzz.  That’s when everything I wanted to to that day went out the window.  It was my son’s teacher.  My son was having a meltdown.  He ripped up some paper, but then started crying and couldn’t stop.  The teacher was worried.  She rarely contacts me for minor things.   She texted me back  in what seemed like an hour, but was actually 20 minutes, that E was calm and back at class, but my heart couldn’t just move on to get anything productive done.

In fact, I had grand visions of a blog post exposing the schools eligible for Disability Grants in North Carolina, and the new Education Savings Account.  However, I got a phone call on Thursday.  I was in the car and had just pulled up to the Wake County PTA Advocacy meeting.  As the principal is reporting to me, that my son had a semi violent outburst in class, familiar faces are smiling and waving outside my car.  I’m literally sick to my stomach and trying to figure out if I should even try to go to the meeting.  I finish up with the principal and find my way to the meeting.  My heart is sick and feel drained.  I make a small remark to those around me, but inside I’m crying.

I’m crying for the child who was in the path of my son’s destructive behavior.  I’m crying because I can’t seem to help my child control his anger all the time.  I’m crying because this is the second bad day E has had this week.  He makes up rules in his head and then refuses to break them.  I’m crying because we just had a therapy session last night.  His impulse control is so low this week.

I do manage to make it through the meeting and even managed to participate.  I didn’t take any notes, and I have vague memories of things we talked about.  I did agree to a little photo, but I really wanted to run and hide for a few hours.  No such luck.  I had things to get done which now included a meeting with the special education teacher.

After my wonderful husband was able to shuffle his schedule, I was free to meet with E’s special education teacher.  She had a training the next day, and we wanted to see if we could make any progress as soon as possible.  The meeting was long, but hopefully beneficial.  We had added things to his most recent IEP, and I had an inkling that they had not been fully implemented.

So now we start a new week.  We start really the IEP that we did in December.  The team has added a few things to try.  I’m nervous that they will not work or we will regress to last year.  I know my son’s outburst scared them.  It scares me, and most of all it scares my son.  He seems to be working through something, and all he feels is angry.

Its been a tough week.  My son would remind me, what my favorite word is.  It’s persevere.

 

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What I Should Have Said: Reflections on the Class Size Rally

On a very cold day in January, public school advocates from across the state gathered to together in Raleigh NC to rally against an unfunded class size mandate law.  It was very cold.  Not North Carolina cold, but seriously below freezing windy cold.

I was extremely honored to be a speaker at the rally.  I was also part of organizing the event.  It was awe inspiring to see the many families, students, teachers, everyday folks who came out to the rally.  My son even came, but stayed away from the crowd.

I was also deeply touched by connecting with a few moms of  children on the spectrum.  I don’t think I’ve gotten through a speaking event where I haven’t met another special needs mom.  We talk, we cry and laugh a little.  We exchange info in some form, we form another connection.  Those connections keep me going even if its just a tweet or a post.

I also had the privilege of working with an incredible group of women to plan the event.  They were supportive.  They were fun.  Most importantly we got the job done.  However, its not just a job when planning something like this.  It digs into your heart.  We constantly ask, will people come out.  Will we get enough attention from the press?  Will we make a difference?  Will it change anything for the better?

So, now we wait.  We hope. Its agonizing.  There is of course the chance that we won’t change anything.    I’ll probably be a little more angry and a little more determined.  We’ll regroup and start again.

On Saturday, when it came time for my speech, I could tell the crowd was thinning.  We were all very cold including me.  So, when the wind blew my prepared remarks, and I lost my place, I just decided to shorten my speech.

So below is my speech in its entirety.

My name is Susan Book. I’m trying to be a writer, I’m sometimes an advocate, but I’m always an autism mom. I have a second grader at Reedy Creek Elementary in Cary who is on the autism spectrum. Cuts to education and the class size mandate have a deep impact on all our kids. It has an even deeper impact on kids with disabilities.

In many ways my son should be a poster child for lower class sizes. He thinks schools would be so much better if there were only teachers, and no more students. School is the most challenging thing my son endures. Its loud, social challenges everywhere, and according to him it smells funny. There are days my son is a potential meltdown waiting to happen.

This is why the unfunded class size mandate is so dangerous. The key is always funding. It takes resources in personnel, equipment and space to provide for a child on the spectrum. Without proper resources, I’m afraid my son might have more meltdowns in school. Meltdowns aren’t pretty. They aren’t like TV. My son is not a savant who will quietly rock in a corner if he’s overstimulated. In real life, a meltdown is loud, messy and potentially violent.

My son’s best days are days he has specials. It’s not just the teachers although their knowledge of their craft is imperative. It’s also the learning space. For many kids on the spectrum, space is important. Classrooms can be stressful and the simple act of leaving one can help alleviate anxiety. The loss of specials teachers and their classrooms is terrible for any child, but kids on the spectrum feel it a little deeper. They crave specials not just for the instruction, but for the stress relief those subjects provide.

My biggest fear is what we’re already seeing in schools as they try and adapt to the mandate. Fourth and Fifth grades are gaining in numbers. There are less TAs then there were ten years ago. There is less per pupil spending. Space may become restricting and limited. I’m becoming increasingly worried that schools will be unable to uphold the IEP or Individual Education Plan. Which in my world means, more frequent meltdowns. The IEP is a federally protected document. This is about the quality of my son’s education. This is about schools keeping with federal law. The class size mandate is tying schools hands. Those who will be most impacted are those who need the most help.

There are many struggles for special needs families. Class size mandate doesn’t need to be one. It can be fixed. Families of special needs kids aren’t leaving and we will keep fighting for quality public education for our kids and all kids.

CLOSING: Let me just share one more thing as I look out at all of you.
Today you all did something extraordinary. You showed up. It may not seem like much, but it means the world. You are standing in solidarity for kids all across the state. By merely showing up, you all are advocates. Now all we have to is keep showing up.

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