The Day After

The stench was overwhelming as my son and I entered the car to drive to school in the morning. I had left all the campaign signs from my polling place in the back of the car too exhausted the previous evening to move them. The smell was like a mix of lawn clippings and urine and it filled my tiny hatchback with an overwhelming stench. My son looked at me annoyed and put his backpack on his lap instead of in the back where the signs were stacked up.

I had just told my son about the election results. Like ripping off a band aid, I just had my son sit down and I told him who won and lost on both the state and federal level. It was important because there were some wins here in North Carolina. Still my son asked about his safety as a kid with a disability, he asked about climate change and unchecked corporate greed. I didn’t sugar coat. I simply said I would protect his rights and that we would work together to fight for the rights of others.

It was a heartbreaking conversation. I was physically and mentally exhausted, but somehow made it through without tears and with as much mental fortitude as I could muster. The drive into school in the stinky car didn’t help, but my kid seemed OK. He looked at me and said he’d try his best today even if his best wasn’t what it looks like for other kids. I smiled knowing that he really is trying in world not set up for how his brain is wired.

I didn’t break down and cry until I got a text from a friend that simply said, “hugs.” At my last traffic light before home, I began to cry. I’ve been crying off and on now for a while. Mourning the the time I’ll need to spend defending the rights of my child, and the rights of others. The existential dread is an aura lingering about, while the real and horrifying facts live echoing in my brain. Its so loud and sad in my headspace and I’m not quite sure how to completely turn it off. Maybe turning it off completely isn’t going to happen so I need to use my strategies. Use your strategies might be the most used phrase in my house and I’m certain it will continue to be as time shuffles forward.

As my brain struggles to make sense of it all, I know the actions that work. I know how to do this again. First is inform. In real ways using our stories, we inform small circles and big circles of what’s going on in our world. We each do this differently and over time and space our circles connect. This builds a base of people who share an understanding of an issue and then are ready to work together to solve it. Next, we encourage each other to work in whatever ways they work best. It sounds simple enough, but inter personal relations are hard. We share joy most of the time, but sometimes its hard and jealousy, egos, and conflict are ever present. Still if we can remember that we have a common goal, take breaks, and that we’re all unique as we ground ourselves in the humanity of others, we will succeed. Finally understand that our greatest power doesn’t rest in government and elected positions. Our greatest power rests in our communities. Communities offer protections, power, and hope when everyone else fails us. This is where my hope resides.

I’m not quite ready to fight, rally, or march just yet. I need to regroup and heal. I’m just not going to feel defeated. I’m also going to be cognizant of the fear and dangers those I love face. The world gets darker earlier these days. However, I’m going to hold unto hope. See in 2016, I didn’t have what I have now. Now, I have a strong vibrant community of strong women. I am not alone. Today that is enough.

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Starting from Scratch

Starting a new school really feels like starting from scratch. While I have an IEP and years of knowledge, I don’t know this new school. I have no idea the culture of the school, teachers, staff and maybe most notably the administration. I feel like my son and I are stepping into a great unknown and it doesn’t feel good.

I’ve often begin my talks by saying, “I’ve seen the best of public school and I’ve seen the worst.” I only occasionally go into any detail let alone specifics about the worst. I can say it eroded trust. I can’t unknow what I know. I can’t turn back time on the phone calls, and the suspensions. The trauma is still there for my kid. It is still there for me.

So, we go into another transition. Will it be positive like our transition to middle school or will it be a nightmare like it was when we changed schools in elementary? I have no way of knowing. What I do know, scares the hell out of me.

My son told us recently, “I just want to be treated like a human being.” It isn’t much to ask, but I know that hasn’t always been the case. He’s been restrained and then told it was therapy. He’s been gaslighted about his sensory issues so many times he doesn’t trust a lot of teachers. He hasn’t always been safe at school. He hasn’t always been believed either.

The other problem is that I know the system well. I know that it is rare to have a fully staffed Special Education program. It is even rarer for them to be up to date on what it really means to be Autistic. For example, my son’s IEP states that he gets a 1 on on 1 to assist throughout his day. There is really little to no training these folks go through. Sometimes they’re absolute amazing individuals who fully support my son’s needs. Sometimes their ignorance is a hinderance to learning.

I’m also keenly aware of the underfunding issue and the low pay issue for our special education teachers, the instructional assistants and really the entire building. I can put together an amazing IEP document but it means very little if they can’t provide the staff. I can of course pull my kid out and refuse to send him to school until they provide the staffing, but that doesn’t make money appear. Let alone what underfunding does to morale and school culture over time.

We’re going to try our best and step into the unknown. I sent an email introduction to the Principal. I put too many links in it about myself that I wish I could take back. I also joined the PTSA. Of course I opened my mouth to volunteer as Advocacy Chair at the fist meeting. Not only that, I went on and on about advocacy being the heart of the PTA. The position wasn’t even listed on their web site, it wasn’t even listed as vacant, so I thought I was doing something good. Apparently,10 minutes after volunteering and being welcomed, I was told the position was already filled. I still have zero idea where it was listed, but I don’t doubt the person. I of course immediately apologized and felt very small and slightly humiliated. Not a best foot forward moment.

The other hard part that is hard is explaining to friends and neighbors about where we’re going to high school. They ask. I answer. Immediately I get asked why there. It isn’t near our house. It isn’t a magnet school either. So, I have to explain that my son was assigned there because he’s in a regional program (special education). Of course I get asked again why because of course many Autistics go to their schools. Its exhausting trying to explain why my kid is in a regional program that only exists in two high schools in the county. I can’t even tell them why that program is special or why my kid is in it. I honestly have yet to understand regional programs in our county. I honestly have no idea if it is the right fit either. Its where his teacher from last year said he should go and I’m taking a giant leap of faith trusting her. She is one of those few I trust.

I’m haunted by our past experience in our school system. I know the nightmares well. My son still has them, as do I. I also know that there aren’t any other real options either. Homeschool isn’t for us. I absolutely care about quality education. There aren’t private schools who will take my kid either. I’ve been down that road and its even scarier. My son needs every bit of federal protection we can get him. In so many ways, he is why IDEA is important.

Thus we start from scratch. We ask questions. We try and make the transition as positive as we can. It still scares the hell out of me.

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Eloping

There are lots of specific words we use in the Autism world. They include things like stimming, echolalia, and scripting. I love that we have our own culture. However, there is one word used by schools I dislike intensely, Eloping.

The first time I heard a teacher tell me that my son eloped from the classroom, I laughed out loud. I kept picturing my six year old taking a ladder to a second story window and escaping intentionally with his forbidden one true love. Of course this isn’t what they meant.

I decided this wasn’t a term I wanted used and purged it from our IEP and BIP. It has always bothered me and I’m starting to understand why it bothers me. It initially bothered because its just not everyday language. No one says my kid eloped from home. We say my kid ran away from home. Eloping also seemed to me as intentional or even premediated which isn’t what was happening in the classroom.

However, there is something deeper for me. I tried to hold a breakout session this weekend at a summit for family engagement on the basics of Disability Rights. The theme was simply that Disability is a normal part of the human experience. Normalizing the disability experience just makes sense to me. While my Autism diagnosis is new and I’m still processing, my strabismus is something I’ve had my whole life. I see the world differently to the greater world. To me its just how I see. My body is normal to me. My mind and how I think is normal to me, I just have a name for it now.

So, I don’t like that we have some special word for something that isn’t special. It feels othering. We know that flight or fight is a very real response to danger whether it is real or perceived. My kid didn’t just run for no reason, he ran because he felt in danger. That to me changes the conversation. It leads to me ask why did he run. It changes the focus on not just my son’s behavior, but on the environment that lead up to the action.

I’ve changed the way I parent. I’ve changed the way I talk about myself and disability in general. I’m still trying to figure out how to be part of the change. Sometimes its as small as changing our words and language.

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Tis the Season

A mirrored room full of dangling lit ornaments with colors pink, blue, green and purple.

Tis the season for dysregulation and meltdowns. Starting from Thanksgiving onward, schools, home life, work, everything gets turned a little off its axle. For our neuro-diverse kids this can feel anywhere from exciting to dysregulating, to downright overwhelming. Its like a season for meltdowns.

Family meals for many kids is all the bad smells, tastes and textures. It can feel dysregulating for some kids to have strange folks in their space as relatives sleep over, and travel is like whole other blog post. Routines are disrupted, even for good things, and can throw one off their game and cause forgetfulness and stumbling over perfectly normal things in ones day. Sometimes its just that feeling of anticipation for good things and Winter Break nearly here.

By far the toughest for our family is the environment I can’t control much. That is school. There are performances, ‘fun days’, school dances, and even movie days. My son once told his teacher, sometimes things that other people view as fun; I don’t think are fun. Other times things like build a gingerbread house seems like the best thing in the world.

Thus in elementary school, when my son didn’t do a writing assignment and struggled with his academic work, one teacher thought it appropriate to dangle the gingerbread house as ‘motivation’. What happened was a complete imploding of emotions. Unable to concentrate and then unable to get the prize, my son melted down and not in a small way. Emotions were way to high. It broke the trust and bond with the teacher too. There are really too many instances to name where rigidity with a school and the high intensity of the holidays met with a bang and my kid in the principal’s office in tears.

So if I’m to give advice: parents, teachers, just breathe. Do the best you can do. Stop with the rewards and the taking stuff. Its not going to improve behavior. Its only going throw more fuel to an already burning fire. Let kids opt out. Maybe having everyone eat together isn’t a happy occasion for everyone.

Yes, teachers be more flexible. Its not going to cause the massive behavior uprising you foresee. It might just calm the waters. Our kids are going to mess up. This is not a time to punish the whole class or call out publicly a kid messing up. As they say, let it go. I know it feels like it, but I swear to you my child was never sitting there plotting your downfall as a teacher. Most of the time, he was petrified and just trying to feel safe at school. Other times he was just too excited and dysregulated and too young or even too overwhelmed to self regulated on his own.

Parents take it easy. Overexcitement can lead to meltdowns just like negative triggers. Listen to your kid and watch for those non verbal cues. They’re communicating with us in so many ways that isn’t speech. Find out if you can, something your kid likes to do. Maybe it isn’t even holiday related. Oh well. What routines you can keep going, just keep going, and be forgiving when things fall apart. They will. We’re human.

Right now our autistic kids just need to feel safe and regulated. It will be different for every kid and every family. In a season of meltdowns be a provider of accommodations, calm, and most importantly love.

Happy Holidays Everyone!

Sign has a photo of ear phones around a heart.  Says Quiet Area
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Crossover

May 4th was crossover. A deadline date that bills must pass one house of the general assembly in order to be heard in the next. Bills can be considered dead if they don’t go through at least one chamber by crossover. As someone who monitors the NC General Assembly its a date I’ve had on my calendar for a long time. With the new super majority of the NCGA, the barrage of bills and legislation went quickly through committees and onto the floors of our legislature. I listened in when I could. I followed threads and reporters. I also had real life obligations going on throughout the week. I ended up on Friday just tired and angry.

The thing that burns me the most really this week, isn’t what you’d expect. See, I’ve been expecting so much of this bad legislation. It felt this year it was only a matter of time and Tricia Cothman was the spark of an already building fire. I’m not so desensitized yet that the fall of reproductive rights doesn’t bother me, but it is always easier to process the expected. The education committee was also busy taking up harmful bill after harmful bill. There were even bills that I’m just learning about that passed.

What broke me this week was the 15.8 million in local funding shortfall from the Wake County Commissioners draft budget. I didn’t expect the gap to be that wide between the Wake County School Board’s budget request of 55.8 million and the offering of only 40 million from the county manager’s budget draft.

Basically on a statewide level I’m watching the dismantling of human rights and the destruction of public education. The last thing I need right now is to have to go on the local level and fight even more battles. We had an election. Most, if not all of the current county commission talked about their commitment to public education. I helped many campaigns with lit drops, a meet and greet in my area, signs and poll greeting. I’ve done my advocating, I showed up. I expected them to keep to their word.

I shouldn’t have to beg for my supper. I shouldn’t have to show up on a random Tuesday when I’m tripled booked with everything else that is happening in our broken state. I shouldn’t have to write talking points and help with a campaign to fund our schools. Yet here I am. The public spoke in November with their votes for people they believed would fund our schools.

On May 1st, I went to the Wake County Commissioners meeting. On a whim, I gave a short public comment. I honestly don’t usually go without preparation into public comment, but I was feeling brave that day. I told the commissioners I was tired of writing the same speech every year. I was tired of asking them to fully fund the request from the Wake Public Schools.

I love and most notably need our public schools. So, it looks like I’ll be at a budget hearing sometime soon. At least I have speeches already prepared. Maybe I’ll use the one from 2017? I don’t even need to rewrite the entire speech. I just need to change the dollar amount. Wake County deserves better than this.

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Wright School Part VI

The hardest part about Wright School is leaving Wright School. For six months your kid has been nourished by school, possibly for the first time. They have been taught and you’ve seen academic progress. You’ve seen mind and attitude changes too. What happens when my kiddo graduates? The hope is that new strategies and structures will be there as well as support from the school informed by the time spent at Wright School.

The goodbye at Wright School is perhaps the most beautiful thing I’ve ever seen. It is deliberate. Each child and teacher offers their reflections of the graduate. They write it down too so that Emerson has a copy. Then Emerson gives his reflections to each classmate and teacher too. Just in case you were wondering, teachers who leave the program also go through this graduation ceremony too. It felt like a warm blanket being wrapped around my family.

We came home with not just the projects and work completed, but posters and things to remind Emerson of the strategies learned. Sending him back to Wake County Schools seemed so frightening in comparison to a school that was all kind words, affirmations, movement, and positivity.

Wright School was right there in the meeting to transition Emerson back to our regular public school. We also had such a wonderful educator in Emerson’s 6th grade teacher Ms. Laurie Bauchman. She was leaving WCPSS, but she made sure that Emerson got the one-on-one aid that we so desperately needed. I saw a partnership in that meeting unlike I’ve ever witnessed.

We’ve done OK since Emerson left. He has struggled in school a bit, but shows us everyday sparks of progress. I don’t worry about his morning routine or his evening routine. He takes a daily shower basically at the same time every night. That is Wright School. I need to remind him about mindfulness, but he knows how to reset his system.

So, there is a part of me that never wanted my kiddo to leave the sanctuary that Wright School created especially for our neuro-diverse students. Yet, that is the purpose. The purpose of the Wright School is to for students to leave and restart their lives with better strategies for the entire family. Now we need to work on our community. Center our schools, our towns, our greater world to put kids and their entire selves first.

I hope everyone who reads this gets to know about a little gem of program here in North Carolina. I hope everyone gets to understand that when we fund these programs we all get to benefit. That indeed a public school can do great things. I also hope we build on that model, expand that model. Finally, our kids aren’t broken, don’t need a cure, but with a little love, mindfulness, resources and support they can get the restart they need to thrive.

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Wright School Part V

What makes the Wright School experience so unique to me is that my child was accepted. Now I’m sure that doesn’t sound like much, but it really ended up being the difference maker. The school even took his sensory issues seriously and accommodated all his issues, even though I questioned them myself sometimes.

The philosophy of the Wright School can be read on their web site. https://www.ncdhhs.gov/divisions/state-operated-healthcare-facilities/wright-school/history-and-philosophy The idea that we aren’t curing anything, but instead creating a home and community support system doesn’t sound that innovative. However, I assure you it is. It is the approach to mental health and disability that gets overlooked.

Friday at noon is pickup at Wright School. Generally music played loudly and not a lot was said. Except on day when we were nearly home, Emerson just asked, “Do you believe in the medical or social model?” Out of context, I had zero idea what in the world he was talking about at the moment. However, he went on push and asked if I believed in the medical model of disability.

So, thanks to the Wright School and their deep discussion of Flowers for Algernon, my child was schooling me on disability justice. I admit if Emerson had read that short story in his old school, I probably would have flipped out. However, my kiddo came away from the group discussion and the story with a new found pride in his own disability and some righteous indignation about how we treat disability in America. I had tears in my eyes after the discussion.

The supports for Emerson’s mental health were all there on site. He was monitored, evaluated, and our liaison teacher counselor met with both my husband and I regularly. He even texted us fun stories about Emerson. He became a part of our family unit for the time. He became a friend to Emerson through music class.

This school is a public school, but operates under the Department of Health and Human Services and not DPI. We didn’t have to even worry about EOGs at the school. It is supported with public money and the state has the knowledge and success numbers to recreate this environment if it chooses.

Wright School does things right, and with some resources and well money, we could find ways to replicate so much of what they do right. I’d love to see liaison teacher counselors in every public school. I’d love to see the philosophy really adapted. If feel like right now as long as a child doesn’t act too disabled then they earn the right to be in general education.

When alternative learning environments are mentioned by folks at the North Carolina General Assembly I give pause. There aren’t spaces like Wright School in most places in North Carolina. We risk segregating kids and putting them in a holding cell. The Wright School is a wonderful example of a restart school doing things well and intently keeping the mental health of students a priority. Not every child needs a partially residential restart school. When they do, it should be like the Wright School.

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Wright School Part IV

As I begin January 2023, I think back on our Wright School journey that began in earnest in 2022 with a spot at this amazing school. Its hard, actually, because as we’re back out in a regular public school setting and I need to keep reminding myself and my child of all the positive things we learned to do at Wright School.

I admit in 2022 I was petrified to tell Emerson we were sending him to yet another school. He’d been in a constant state of change since 3rd grade and here we were in the middle 6th grade about to change schools again. 6th grade was going OK in general, but we were watching things decline as the first semester went forward and Emerson’s willingness to learn declined. I was looking forward to the change, but wasn’t sure how Emerson felt.

We waited till after the holidays to begin the discussion. We just sat Emerson down and began to discuss the school. It wasn’t until we got to the part that it was partially residential that Emerson erupted with shouting and went into his room to calm down. As parents, we just waited. After about 30 minutes, Emerson came out somewhat calm and said quite simply, he’d try it.

The visit with Emerson was impressive. We toured the school. We saw the room Emerson would be using and discussed details down to the fan he’d use at night. The best part was that the visit was mainly student led. Emerson got to choose if he wanted to sit in the classroom with the students or if he’d prefer them to come talk to him one on one. He chose one on one. So each student came and talked about their experience at Wright School. They gave advice and things that they loved and struggled with about the school. One kid drew Emerson a picture. I think we all came away with anticipation.

One thing to keep in mind was that Covid was being taken seriously. Not just with pairing vaccinated kids up but also masking. While masking for a school day wasn’t a favorite thing of Emerson, it was limited. Once we were home at 3pm the mask came off. Well Wright School was masked even as the academic day ended. Of course there were breaks and Emerson could sleep and be in his room without a mask, still was a lot to ask of kid who didn’t like masks. Yet I think the beauty of Wright School was that it was expected school wide of both kids and teachers. I think the fact that it was adopted policy for the school including for me if I visited, helped normalize things.

Dropping off Emerson was difficult. I was filled with so much anticipation, fear, anxiety and all the while trying my best to mask all my feelings. We did have liaison throughout this process. The parent support was phenomenal. Encouraging text were so needed and helpful. Emerson called us every night that week. It dawned on me how little Emerson had spoken on the phone to anyone so it took a while to get phone protocols down. Drop off that first week and drop off going forward really went smoothly.

We made it week by week. Every week Emerson complained less and less about school. In fact on the weekends I began to hear how Wright School was better than home in some ways. He loved the fact that every week they went somewhere or did something. He started taking routine showers daily. Emerson began to like his school.

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About the School Board Races…

    By now, many news outlets have carried stories about extremist school board candidates.  We have many school board candidates on record from their social media and even at actual school board meetings spouting hateful rhetoric at our teachers, students, and administrators.  We have candidates still denying the harm of the Pandemic and science.  However, there is a bigger issue that many aren’t pointing out, and that is that many of the school board candidates have no idea what goes on inside a public school

     Everyday our teachers are faced with enormous challenges and they meet those challenges to make a positive learning space for our children.  Underpaid school personnel stay late when kids miss the bus or buses are late.  They take complicated subjects and break them down to help students learn.  They meet students where they are and help them achieve more than they thought possible.  Our public schools are doing amazing work everyday. When school board candidates fail to celebrate our public schools as well as talk about the challenges, I know they’re unqualified for the job.                                                                                                                

    Our schools do indeed face challenges.  In North Carolina, our courts ruled that our children are not getting a sound basic education and they’ve placed funding benchmarks that our state needs to provide to get us back on track.  The underfunding of our schools is no longer a debate, it is an adjudicated fact.  Instead of talking about the systemic underfunding of our schools or the inequities in funding,  I hear candidates accuse our local schools of mismanagement and fraud with no evidence.  They pledge to cut administrative staff that have nowhere left to cut.  Too many candidates don’t even have a basic understanding of how schools are funded and how those funds are used.

   Finally, when candidates offer solutions to problems that either don’t exist or don’t exist in a way that they understand.  Take Special Education for instance, I heard a school board candidate Michele Morrow offer suggestions that we should be teaching life skills and job skills as if we don’t already do those things.  The same board candidate even suggested removing special education students from general classrooms because they’re contributing to teaching mediocrity.  None of this is legal or true.  We have enormous issues to overcome when it comes to Special Education, and the last thing we need is someone spouting ableist garbage getting in the way.

   I don’t expect every person who runs for school board to be an expert in education, but they should be striving to understand and know as much as they can with accurate information.  I expect candidates to be involved in our public schools in some capacity even if it’s being their biggest cheerleader.  Belief in public schools as a public good as well as investing in our children should be a baseline in which all candidates on both sides agree.  Sadly the fact that not all candidates see our public schools as a positive is one of the biggest dangers facing public schools today.

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Wright School Part III

The Waiting is the Hardest Part

So, our family was doing OK in 2020 despite so many challenges. We were thankful to be healthy and excited about even the possibility of a vaccine. Root Elementary was a godsend. We not only were blessed with a great teacher, but the principal was fantastic as well. He said he was from Vance County, I mentioned working on Leandro, and it was all good from there. Wright School had to completely close for a while and rethink how they were going to operate as a non-residential school.

Going back in person in the late fall of 2020 was a difficult choice. I had to weigh my kiddo’s mental health and physical health risks. I kept trying to find compromises. It was made more difficult by a county flipping how contained classrooms were going to run last minute. We also faced a district that just wasn’t really wanting to be flexible which in many ways is still true. We didn’t actually get back in the classroom to almost Thanksgiving. I also made my own compromise. We would do lunch at home and the rest of the day virtual. Since the teacher was doing hybrid anyway, it was the best solution to a difficult problem. First and foremost most outbreaks at school were happening during times when folks weren’t wearing masks, like at lunch. Second, kiddo wasn’t able to tolerate looking/seeing/smelling other people’s food. IEP to the rescue and we had a plan to get kiddo at least partially back to normal.

In the summer of 2020 into the fall I was working hard to advocate for disability students in person opportunities, while still maintaining a very high level of safety. Around October, Wright School called. There was an opening. It was at this point running as a day school. A long day school with the school day ending around 6PM. I had a tough decision to make. Everyone I knew who loved the Wright School praised what they did in the evening program. The evening program wasn’t operating during Covid. I also wondered how tough going back and forth for a long day of school and essentially an after school program. We had a new plan for the start of in-person school, but we hadn’t yet seen if it was going to work. Going from total virtual into a very long full day seemed like a big change.

Ultimately, our family decided to wait till the school was back to full residential. It was a scary tough decision. I think having such a wonderful team at Root Elementary really helped. In the winter of 2020, I felt like we still needed healing time and growth. He was doing both and I wasn’t sure of anything at the moment. So we waited.

A year later, in November I got a phone call that my child had a spot. They were up and running the residential program now. The tour was amazing. Safety was so key and a school run by DHHS didn’t disappoint. Vaccinated kids shared rooms with vaccinated kids. Masks were serious business there. Lots of air movement and school wide protocols. My kiddo had a slot in January and my husband and I were excited for the opportunity. Now to convince the kid.

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