Don’t Blink!

Policy changes are coming from NC DPI (Department of Public Instruction) in regards to Autism identification and qualification for services. If approved by the NC State Board of Education they could be put in place as soon as August.

If this is the first you’re hearing about it, you are not alone. Many parents and educators were not made aware until now. I happened on the announcement in a social media group by accident. If you’re looking for a major press release or announcement from your school district, it may not be there. Below are what I found circulating on a few social media sites.

On June 25th, I attended the parent forum in Raeford. In the meeting, the Exceptional Children’s Division explained the goal of the new policy changes is to clear up policy when identifying students with Autism. Ok, good so far. I agree we need better training and understanding of Autism in our public schools overall. There are some new sensory screenings which again sounds very positive. The ECD also laid out what the new policy for qualifying for special education services will look like.

Here is where my mommy senses began to tingle. So, the old qualifications for services for Autism were extremely vague. The new ones are more comprehensive and do provide a clearer guideline. However, is it a good guideline? Will it result in fewer students qualifying for services and thus not be provided an appropriate education? These are the important questions to keep asking.

I encourage every stakeholder to take a deep look at the proposed policy found here:

When I read the policy, a few red flags went off in my head when I read the policy and of course I checked in with a few school psychologist friends. The first red flag was the communication piece. Under the new requirements for a child to be classified with Autism they must meet three criteria for communication. The other red flag might be that the symptoms must be present in early development, but could have been masked with coping skills. I have significant fears that the new criteria will have less students qualifying for services. As a side note, no need to panic just yet if your child already qualifies. This shouldn’t impact students already receiving services unless a full reassessment is requested. Reassessments are common, but full reassessments are rare.

I mentioned my fears at the parent meeting, but was assured that they were unfounded. I remain skeptical. I don’t mind change and updating Autism policies can be beneficial, if the goal is make sure we aren’t denying services to those who are in need. I’m not sure that is the goal.

I hope every parent or educator who wants to learn more about these policies do so from DPI and get a chance to ask them difficult questions face to face. However, that will not be the case. These meetings are being held at only eight locations around the state. Very few are in urban centers. The most significant problem is that these meetings are held at 5:30PM. Getting to a meeting across Wake County at 5:30 is a challenge, let alone trying to get to Butner.

I brought this issue up at the meeting I attended in Raeford. I was told that they wanted to include the rural folks. That is fantastic. However, it shouldn’t be an either or proposition. Have a meeting in Butner and Raeford, but have one in Wake and Charlotte too. By only having meetings in these eight locations DPI is excluding large numbers of stakeholders, and absolutely they must have them later in the day so working families can attend.

In North Carolina, parents have a right to be skeptical. By not qualifying students for special education services, the state and district save money. There is already an arbitrary cap on the amount of students that the state funds. Each district is capped for special education services at 12.75% of its population. Districts who go over the cap must fund those students from local funds. One way to keep costs lower is to keep kids from qualifying from services. I sincerely hope this is never a strategy.

The policy for Autism, will go before the State Board of Education in August and roll out as soon as possible. For all I know, these will be positive changes for the Autism community in North Carolina. However, the public needs to be made aware of the changes, give input, and monitor the implementation. This isn’t approved policy yet and I encourage everyone who has serious concerns to contact the NC State Board of Education ahead of the August meeting. The link to State Board Member emails is down at this time. Here is the Home Page for the NC State Board of Ed.

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A New Hope…or is it just Star Wars?

After what felt like an epic battle, my son now attends a different public school. Switching schools meant for my family switching philosophies. In order to get out of our terrible situation, we had to compromise. I allowed my son to enter a regional program for emotional behavior support or EBS. It is a segregated class to start and it totally broke my heart.

My son needed a change. I recognize that. He needed emotional behavioral support too. When some at his old school failed to see his behavior as deeper frustrations with curriculum, and more importantly failed to act, my son’s behavior and emotional stability fell apart. We needed to give him a new start.

Still being in a segregated class feels isolating. I’ve always been a part of school life. Suddenly I’m completely on the outside. Not only that, but there are times my son feels it too. He has even asked me if he was being punished for what happened at his old school.

The new school and I just finished formalizing a brand new IEP. It took over 4 hours. We rewrote old goals, but for the first time added academic goals now armed with assessments. I feel good about the work and hopeful for the future, but I will forever be cautious.

You see the old school didn’t insist on assessments. I did. The old school wasn’t seeking help from county special education services, I was. Did I know how to do any of this? NO! I hired someone to help me. This felt like a battle to get my son safe. I’m a fighter, but I shouldn’t have to be.

There are a lot of talk in forums, non-profits, and even within the county of providing training to parents to know their rights. I agree this is important. However, I fear we are putting too much responsibility on the parents. Parents who have special needs children. Parents who work. Parents who don’t sit at home writing blog posts in their spare time. When do we start putting the responsibility back on our school systems? When do they stop being reactive and start being proactive with the tools they have?

Since when did I have to know assessments, or what accommodations to ask for with curriculum? The parent rights handbook is filled with procedure rights and responsibilities, but is it a parent’s responsibility to request a Functional Behavior Assessment, when things start going south? Shouldn’t the school be doing these type of things? One shouldn’t have to have a hired gun at an IEP meeting to get services, or be some guru of special education.

What all this means is that we have a special education process steeped in privilege. We have kids who get services not because they need it the most, but because they have parents or hired professionals navigating the system. The schools should be the ones doing the navigating to get every single one of their students the best education possible. I’m only seeing this when things come to crisis or worse a lawsuit.

My question is why is this happening? Are teachers and administrators at local schools just unaware of what services the county and state will provide? Do local schools only see discipline issues and not underlying problems associated with disability? Is it time and resources? Just as important is my final question, what can we do about it?

As our family learns to navigate our new school I’m hopeful things are getting better for my son. We know much more now about how he learns and perceives the world around him. I hope this will help his teachers address problems in the classroom. I hope the school will be proactive if my child starts to show warning signs of escalating anxiety behaviors. I have hope, but I know I’m dealing with system that is more prone to war than peace.

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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.


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:


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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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