Learning on the Journey

My 12 year old son was diagnosed this summer, with Schizotypal Personality Disorder. While the prognosis for this is not what I had hoped, learning about it has helped me to understand and accept my son’s struggles. It has also empowered me to advocate for him in the school. This disorder, simply put, is about halfway on the Schizophrenia spectrum of disorders. In my son, it manifests as severe paranoia with anxiety, seeing things out of the corners of his eyes, and sometimes hearing things that aren’t there. These symptoms have been noticeable and troublesome for about 5 years…we just didn’t know what it was. He had been “diagnosed” with things like adjustment disorder, PTSD, mood disorder, and people who worked with him had suspected an Autism Spectrum Disorder. On top of this, he is intellectually gifted…the one thing we knew from psychoeducational testing.

The stumbling block for Brother, is getting into the school building in the morning. We may get all the way to the drop off spot, and he just can’t get out of the car. He has said that something in his brain says,”scary”, and he panics and freezes. This doesn’t happen everyday, but it does occur about 50% of the time or more. We have tried many different approaches to this, and none have rendered consistent success. At a meeting this week, his team came up with another idea to try.

When working with the school team, it became obvious that one of the members of the team had very little experience or knowledge about mental illness. His solution was to strip the child of everything, and make him “earn” it back by basically, acting like he doesn’t live with a mental illness! I put that idea to rest quickly, by stating that while that approach may work for some, in this case, it would require that I be communicated with DAILY by EVERY TEACHER, or it wouldn’t work. Last year, the behavior plan called for weekly communication about Brother’s behaviors, and teachers couldn’t manage that!

Of course, a meeting like this couldn’t end without the school administrators stating that they just don’t have the resources to accommodate Brother’s needs. (Note- the main need they couldn’t accommodate was for consistent adults to help deal with the panic attacks). Of course, I informed them that the nearest school that can accommodate Brother is in another city, and the school system would have to pay for it, because I can’t afford it! The monthly tuition is about the same as my take home pay!

The other comment that left me disturbed, was that the school is not responsible for providing an education unless he is inside the building. This left the question of who gets the child into the school on days of panic. I can get him to the school, but the panic sets in while he is in the car. To me, “school” starts right there. If he was on a school bus, they wouldn’t be able to just leave him there. I can physically drag him into the building, but it would definitely look abusive- so is the school telling me to abuse my child in this way since they don’t have people to help with this? That seems disturbing as well.

We have a very long way to go. Right now, I would dare to guess that most families who have a child with this level of mental illness are either homeschooling or paying for institutions. I have seen students with obvious mental illness in schools during my 20 plus year tenure as a special education teacher. I have seen parents give up on public schools. I don’t fault them at all for making such a decision. Change will not come if our schools are not put in positions to have to serve our population of students with mental illnesses, and held accountable.


A Morning in the life of…..

This morning started out pretty normally for a Monday. None of us really wanted to get up, but forced ourselves to get ready anyway. I take Brother to school, and we headed out the door as usual. Within just a few minutes, he began to panic. He had a “feeling” that there was going to be a shooting at his school, and he would die. I tried to ease his fears, but was not successful. He began crying in fear, and even hit the door. He begged me to find a way to homeschool him so he could be safe. By the time we arrived at the school, he was completely dissociated. I parked and found the on site sheriff. He assured Brother that the school was safe…but Brother remained distant and non responsive.

In the meantime, I texted the county behavior facilitator, as no one at the school is “comfortable” working the behavior plan that is in place for Brother. I drove to the back of the school, where Brother could get into the school without being noticed. It took a few minutes, and a little physical prompting, not much. Brother got out of the car…still terrified, but willing to go in with the support of the adults.

Within an hour, Brother was in classes…and doing fine. It took that time for him to acclimate and feel safe.

One of the characteristics of Schizotypal Personality Disorder is the inability to form relationships or trust. I didn’t really put it together immediately, but this can apply to school as well. This is Brother’s third year at the same school, and he still doesn’t feel comfortable or safe.

I started keeping a journal of these “episodes” of paranoia and anxiety that interfere with daily living.

Our schools are not even close to being equipped with the resources to support students who live with mental illness. This journey will take some advocating…and some support. Students who have mental illnesses have as much right to be in our schools as anyone. It is school personnel who need to be educated and provided with the resources to support these students.


“Lawyer Will”

Me: Have you picked up the psychological report on Brother?

The Dad: Lawyer will

This text exchange was just one more step into the abyss of contentious parenting. Our ongoing litigation came to an end in the middle of July. It ended with an agreement to only return to court if there is a change in circumstances, or after a year of no visits. It hasn’t even been a month since we signed that agreement.

In order to obtain the report, a parent has to arrange to pick it up from the office, and show identification. It will only be released to a parent. The office is an hours drive away. With the agreement in place, both parents should be getting on with the business of parenting and healing.

At this point, I can’t tell if I’m parenting with the dad, or with his lawyer’s office. Either way, I am SUPER BUSY parenting two children who have significant needs. Neither the dad, nor his lawyer are helping to support the parenting ; financially, emotionally, or physically. They are just adding one more thing for me to juggle.

I have to stay focused on what is important. Right now, helping the AoA kids transition into a new school year is at the top of my list! Little AoA is transitioning well, and her biggest worry is how to make friends to play with at recess.

Brother is more challenging. This week, he only managed to go willingly through the front door of the school, 3 out of 5 days. The other two days, I had to take him to the back door, where me and a school employee have the option of physically removing him from my car without attracting attention. Those two mornings were filled with somatic complaints. I took him to the doctor one of the days, to rule out that he had any more than a simple cold. He was sure that he was going to die. His tolerance for any discomfort is incredibly low…more than I have seen in a very long time. I can only recall once in my 18 years of teaching, I had a student who insisted that she had a fever most every day. We started the days by taking her temperature to assure her that she was fever free.

Well, at least today is Saturday! Time to breathe and regroup…


A Llama Learning

The kids are back in school! I think this is the first time a school year has started, that I didn’t have some kind of litigation looming over me. I am happy to face each day at work. During the first week, I don’t have kids to see yet. I have to gather master schedules from five different schools from which to build my schedule.

I have been enjoying building up younger teachers, and helping them find resources. In the special education field, much of the time, teachers are given the students who need extra help, but no resources. It’s like special education teachers come with internalized lesson plans. Sure, each plan is individualized, but in a class of 12, it is hard to work to 12 different plans. I’ve been there. I am so glad to be in a place where I can help other teachers feel like they are enough!

I feel beyond blessed to be where I am in my career. I absolutely love working with the exceptional population. I always wish there was something more I could do…which is where I have come to accept that my best is enough.

The llamas are getting around this year. The door in the picture above, is from the classroom of one of my teacher friends who works with our limited English speaking students. I just love when we get a chance to talk.

I think I have just come to a place of peace with my career. Every now and then I get a little twitch nudging me toward getting another certification, or going into administration. The few times I have mentioned this out loud, Little AoA reminds me that SHE needs my time!

What could be more fun or important than that!


School Challenges

The kids have now completed the first two days of this new school year! I wasn’t too worried about Little AoA. Everyone at her school seems to know and love her. She loves being at school. Making friends is her personal challenge right now. She is extremely shy around peers and adults outside the family. She is coming out of her shell a bit, and we talk a lot about strategies for making friends- most involve TALKING….

Brother is a different story. We have to measure the small victories, like walking into the school rather than having to be physically dragged into the school and into a calming area. He has walked in on his own on both days. The first day was ok. At the end of the first day, it was apparent that the proactive measures I had taken, had not been taken seriously. The result was that Brother didn’t want to return to school. I immediately got in my “child advocate” mode, and started emailing the entire team, calling for a large meeting to figure out how to meet Brother’s needs that would be evident if they couldn’t accommodate him with a simple schedule change. I wasn’t angry about it…I just knew the anxiety that would come, as we have been down that road. The team that helped last year also knew…the person in charge of his schedule was not on the team from last year. I’m sure I came across as a “helicopter mom”…which I try not to be..but someone has to advocate for kids who have unique needs for accommodations. Until the school team gets their boots on the ground, it had to be me. The school team is together now, and thankfully, I can back out a little bit.

The second day of school, Brother’s anxiety and paranoia took over as we approached the school. About a quarter mile from the school, he said he was feeling sick. A big distraction helped us get to the door. Someone had driven off the road in the school entry. There were emergency vehicles and obviously an injury. We wondered how that could happen, as we are usually not able to go more than about 5 Miles an hour on that road.

This was our view as we approached the school. When we got to the drop off spot, one of Brother’s teachers happened to be there. Brother got out of the car, and walked in with his trusted teacher.

By late afternoon, I received my first teacher phone call. Let me back up….on “meet the teacher night”, I met with each teacher, and filled them in on Brother’s situation. They knew…then we had to change Brother’s schedule. All but two teachers were different. I hadn’t been able to give them the “heads up”.

I know that Brother’s behaviors when he is anxious, can lead a teacher to feel like a failure. He shuts down completely- dissociates…and it is extremely difficult to get him out of that state until it is time to leave. If they were doing an assignment, the teacher won’t know what he can do. It looks like he can’t do anything. But no! He is gifted, with an IQ on the high end of meeting criteria for gifted…he feels like a failure if there is even one little thing that he doesn’t know- and gives up on all.

Ah…school! At least we know what we are dealing with this year.


Getting Flocked!

Our local domestic violence center has been planting flocks of pink flamingos all over town to raise awareness. There are different size flocks for different monetary donations. Tonight, the AoA girls and I went to the town square for the monthly “First Friday” event, and it was really nice to see two locations hosting flamingo flocks!

Our town square has been revitalized, and is becoming well known as a place for all types of artists and musicians. We have high class junk stores on the square, as well as some quaint restaurants. Entrepreneurs are buying the old buildings, and putting new life into them. It is truly a beautiful transformation to witness!


Don’t Forget About These Kids!

Our local domestic violence center is collecting school supplies for the young victims of domestic violence. In this season of school supply shopping, I think that I must live in a very compassionate town. Local churches and businesses collect backpacks and supplies for local kids in need. There are back to school bashes and mass giveaways. There is a high poverty rate here, and every bit of support counts!

Even with all of the great support, there is a group that the bashes and giveaways don’t necessarily reach. Domestic violence survivors and the children involved are not likely to partake in these.

When the AoA kids and I left our abuser, socializing was not something we did much. Fear followed us at its strongest, during the first year of survival. In addition to fear, it never crossed my mind that there was something we needed. I just focused on staying safe. In time, reality began to set in…the kids had homework, and I realized that we had no pencils, paper, glue sticks, or even scissors. We didn’t even have any books in our safe house. All of that had been left behind in the home of our abuser when we fled to safety.

There was an army of Angels in our lives that did the little things, like give the kids books to keep at home, and things to play with while we slowly rebuilt our lives.

I am so grateful to be in a place now, where I can reach back and help another. When our community is reaching out to the masses, the AoA kids and I do our bit of giving. We help give a voice to the youngest victims of domestic violence. I pray that an Army of Angels watches over each and every one…that they experience love and kindness from others, and that they feel worthy and accepted.

This is Little AoA delivering backpacks to our domestic violence center. She picked out the backpacks and supplies, and put them together with a lot of care.

What is a small act of kindness that has made a difference in your life?


Mental Health:Something to Learn

I am not a mental health professional by any means. I do have my college degrees in the areas of special education, and administration. It was not until I was receiving help at our domestic violence center, that I started learning about personality disorders…

I was a bit irritated with myself for not knowing about them. In all of my education, I learned about disabilities that are dealt with through special education. They did not include personality disorders at the time I was in college. I am learning now, that special education is evolving to meet more needs of students. We are always learning.

I have so much more to learn… my 12 year old was just diagnosed with Schizotypal Personality Disorder. I have been deep into research since this diagnosis came into our lives. I am going through some stages of grief, as this is not what I hoped for my child. It fits…and I have been watching it unfold since he was very young. I always knew it was something, but it looked like pieces of other disorders.

I have been seeking others who are living with or parenting someone who has this disorder. I have found many online therapists, students, and educators discussing it from a purely clinical and diagnostic standpoint. I have found a few people with the diagnosis who are sharing their lives and experiences. It is difficult to admit, as there is a stigma with just the label. Also, this is usually not diagnosed in people under 18 years old, so parents who are dealing with it may not even know what it is.

The only reason it was diagnosed for Brother, is that we have so much therapy, testing, and documentation. I must add that Brother was 7 years old when he entered therapy, and that was just planned to be for a short time during the transition due to divorce. Brother did not adjust as a typical child would adjust. He was becoming more and more paranoid and anxious. I kept documentation of the things that were happening- strange behaviors mostly, like dissociating for very long periods of time. I had a feeling that something was going on during visits with the dad, but I couldn’t put my finger on it. All I could do was document the behaviors…for three years.

I will share an experience from last night as an example of “a day in the life”…

Brother emerged from his room, slightly on edge, and informed me that he had been “doxed”. We reviewed some safety, and talked about blocking and reporting to the server. This was fine…for a while. Within about 15 minutes, he emerged again, certain that this scammer was going to have our whole family killed that night by a SWAT team!

Brother was crying and hyperventilating. He asked me to take him to the hospital so he would be safe. He wanted to call 911. I managed to help him calm down a little by calling our local non-emergency sheriff number. They assured us it was a scam, and that if anyone came to our home to do harm, we could call them. This reassured Brother a little more. Over the next 30 minutes or so, Brother continued to cry, insisting that I immediately hire a guard for our house. Eventually, he settled down, but was afraid to go to his room, or even go to sleep.

While all this was happening, I had to send Little AoA into another room with the grandparents. She knows that Brother has anxiety and is difficult to deal with sometimes. It can be a little scary watching him slip into this severe state of fear.

I will continue to share my experiences with this journey to healing and learning to navigate these unpredictable waters…


How Far Can Your Passion Project Take You?

I fell in love with this children’s choir on America’s Got Talent! They bring something really special to the stage.

As a teacher, I do my best to teach my students the joy of following their passions and building projects around those passions. I try to do the same in my own life.

I have great admiration for people who follow through with passion projects…it doesn’t matter how big or small!

What is your passion project?


Slow Processing Speed

Today I am going to share a little something new. Well, maybe not exactly new. Along our journey, as the AoA kids have grown and matured, we have met with new challenges. My parents and I knew that Little AoA had some learning and processing difficulties from a very young age. She was born four weeks early, and needed some help breathing when she was born.

As she has grown, this delay presented as verbal apraxia and large motor challenges. She could not keep up with kids her age. Along the way, we found that she had Hypothyroidism, which mainly presented as severe fatigue. We watched and waited, as her schooling progressed. She was able to learn to read, but math was a different story.

We tried and tried to help her with math, but for some reason, it just wouldn’t stick. Some thorough testing revealed that her overall cognitive functioning is in the borderline range (low 70’s), and her processing speed is slower than typical kids her age.

Here is some information I found about the challenges faced by kids who have slow processing speed:


The day explained in the timeline is very familiar. One thing that has helped us, is having routines and limited choices. We start preparing for things far ahead of time in order to have time to fully process.

Confidence building and risk taking has been a great area of focus for us recently. Little AoA is extremely hesitant about new things. It is taking an army of Angels to lift her up across all settings!

She is the youngest of my four children…born when I was 42 years old. I knew when she came along, that my time of “empty nesting” would be a long time coming. I have enjoyed being an older mother in ways I couldn’t have imagined.