A Painful Paradigm Shift

We have been in the midst of some rather painful paradigm shifting in the AoA house. Adjusting to homeschooling mindset has been challenging, but I think we are starting to settle into something. The best move made so far, was hiring a tutor for six hours a week. It ends up costing nearly as much as private school, but he is in a class of 1-3 depending on scheduling. We are able to truly focus on Brother’s need for building trusting relationships and confidence. Last year, he was, by public school standards, BROKEN. He was in a fast moving downward spiral, with nothing to grab hold of!

Two weeks ago, Brother experienced a setback with medication. An increase of a medication led him to become more easily agitated and violent. In a rage after refusing to go to the doctor and tutoring; he hit me so hard that he fractured my elbow. I was in a splint and sling for about 10 days…unable to use my right hand and arm due to swelling.

Brother went to the hospital to get his medications sorted out in a safe environment. It wasn’t the greatest experience for any of us, but he was admittedly not in control of himself.

During this time, another needed paradigm shift made itself known. My mom is no longer able to do the traveling and involvement she once was. She wanted so badly to help drive the 3 hour trip to the hospital where I was needed to help with Brother. This was an 11 day rollercoaster that peaked when the dad showed up at the hospital, violating the agreed order that was just put into place this summer! Not only did we need to help Brother, but now we were on alert for the dad being out of control (he has threatened to kill both me and my mom via his concealed gun that he keeps with him).

We are all home now, and getting back on our feet. This week has been filled with follow up appointments and tutoring for Brother. Our public schools are on fall break, which couldn’t have come at a better time.

Maybe the paradigm shifting will be more settled by the time school starts back up again…


We Took the Leap

Last weekend, I took a leap, and decided to give homeschooling a try with Brother. I knew it would take some help from a tutor, as my work doesn’t leave me time to fit everything in. The grandparents are home to help out a bit, but at 75 years old, they aren’t much into the rigor of today’s texts and lessons. As it happened, I came across a tutor on a job seeking site, and set up an interview. I was only slightly hopeful going into it.

We met at a local coffee shop, and it didn’t take long to realize that we were kindred spirits. The situation was perfect for her, as she has a child the same age as Brother, whom she is homeschooling. She has three other kids who have graduated and moved on. We arranged to have Brother meet with her and her child. When we got together again, the kids connected!

We started that week….not waiting around to give the window of enthusiasm time to shut. I won’t say that it is working out perfectly…there are some bumps. We are figuring out the timing for everything. The medications Brother is on make him fatigue easily during the day. He goes in spurts, then falls asleep. It is obvious that a great burden has been lifted from him. He is not isolating himself as much, and has a new spark in his eyes. It is like we are connecting in a way that should have been done years ago, during the time he was being psychologically tormented.

I don’t know how long this will last. I will reassess his progress at the end of the year, and make adjustments. His therapists are a big part of his healing, so their input is valuable to this effort.

Part of me is very sad and disappointed that our public school can’t follow a pretty simple behavior plan that means the difference between success and psychosis. I will continue to advocate for students who live with mental health issues! They all deserve to receive a public education without being bullied or discriminated against!


Hanging on by a Thread

I have been thinking a lot lately, about moving Brother to an online school. This school year started on August 1st, and it has been full of conflict. He was more often than not, in a panic at the front door in the morning, so we devised a plan to drop him off in the back. Then, he was not able to get up and dressed to leave the house. We adjusted our night routine and sedating medications, but the issue still lingers.

Most mornings, I load all of Brother’s school items and clothes, into the car. I then physically move him out of his bed and help him stand up. He is usually up before this time, eating breakfast. He goes in and out of states of dissociation in the mornings. Once he gets to school, two or more adults meet us at the back door. One of them physically removes him from the car, just like I move him from the bed. He changes clothes in the school, then goes to someone’s room to chill for a bit before facing classes.

Let me write about classes…this is a great example. Last week, Brother was out of school 4 of the 5 days. He was in the hospital after trying to self harm. This week, only one of his six teachers bothered to email me the assignments he missed, and let me know when it was expected to be turned in. That’s great, but Brother didn’t bring home the foldable he was working on, and the other work was on PowerPoint and in the textbook. She emailed me the PowerPoint. There was no textbook, because the school only has enough for a classroom set, and they don’t get sent home. I offered to Google search for the information. She needed the answers from the textbook, so she sent me a link to the online version. It didn’t work. After emailing back and forth, she reset the link. Now we got onto the platform, but still needed some kind of class code to access the textbook. I emailed her again- by now it was Wednesday. The test would be Friday. I never heard back from her. Brother was made to take a test over information that he was not even given. If this doesn’t make an already anxious kid shut down, it would be a miracle. Brother shut down.

This was only one class. None of the other teachers even bothered to send make up work. When I go through his binder, I find half completed work, and things that probably should have been turned in. He has a behavior plan and an IEP with specific accommodations to address these things.

I don’t think it is asking for much to have the instructions, rubric, and textbook. I don’t think it is too much to ask for teachers to ask him for work he hasn’t turned in. Having been teaching students who have special needs for the past 18 years, I feel I am not asking for any more than what I would have done for my students. I don’t feel that these will take significant time away from the other students either. I guess I don’t understand…

I think that this weekend, I will sit with Brother and weigh the pros and cons of online homeschool versus public school. I found a lady who will tutor with him two or three times a week in our home. My main concern is that Brother will withdraw even more, and refuse to partake in self-care or leave his room. Of course, he can always be put back into regular public school if that happens.

Adding to my dismay, I was told to get a letter from the therapist, covering Brother’s anxiety related tardiness, absences for therapy and anxiety, and anxiety with gym. The therapist gave a beautiful, all encompassing letter. The attendance clerk wouldn’t accept it because it wasn’t specific enough. I called the therapist, who also happens to work intensely with a neighboring school system. He did not understand the problem- this would suffice in his county. Now there will need to be a lot of unnecessary time spent on this.

Topping it all off, is the ex having his attorney draw up a motion to enforce our agreement, because I haven’t spoken with HIS therapist. Luckily, I had her recorded on a voicemail stating that she didn’t need to speak with me because Brother’s therapy group was handling what she was thinking she needed to do. I’m sure this was just the dad’s angry response to being asked to actually pay his responsible portion of uncovered medical bills (24%), and reading Brother’s new psychological report which reveals some harsh truths…oh and having to start paying about $100 a month child support. He hasn’t helped with expenses or child support at all as of yet, and I’m not holding my breath.

Praying to make the right decisions…


Some Joy In The Days

When I saw this meme, I couldn’t help but smile. Kids use so much stick glue in school. Most every elementary class I have worked with has done an abundance of gluing activities. I had one student last year, who had other uses for glue sticks. She devised a way to use them to make slime. Not only did she make it, but she shared with younger kids, how to do it! I heard that glue sticks were disappearing fast!

In my current position, we have four teachers who manage students in multiple schools. During an “end of summer” meeting, almost an identical conversation occurred, only we were contemplating trading schools rather than particular students. In the end, no trades were made.

This cartoon pretty much sums up communication barriers in my home. My parents live with me and the kids. Neither of them can hear very well, and they both talk in low mumbles from other rooms, and don’t understand why nobody can hear them. I’m not sure I hear half of what they say!

After the intensely emotional week with Brother, I really needed to decompress with some laughter. Hopefully it will help get me balanced and ready for the week ahead!


Very Few Resources

In my profession, as a public school teacher, we go through training every year for suicide prevention. “Take every threat of suicide seriously”…. “call mobile crisis”…”it is a cry for help”…

This week, Brother was the one threatening suicide, and performing preliminary acts of self harm. I did what I was trained to do. I called mobile crisis, I called his therapist, and finally I just took him to the local emergency room to be “evaluated”. Here are the results…mobile crisis gave me three phone numbers to call for help. One was no longer a working number, and the other two were specifically for foster children…

The therapist’s office had no answer, so I had to leave a message during normal business hours. I did hear back from the receptionist about two hours later, with a message to take Brother to the hospital. This is their protocol whenever a client states that he or she will commit suicide.

The emergency room was yet another adventure. They tested blood and urine for drugs, and put us in an empty room for the next seven hours. We had to wait for a social worker to come and evaluate Brother. This process was helpful, and at least we came up with a plan for the next 24 hours. Brother held himself together, aside from some anxiety and tears which he kept under control. The social worker was pretty certain that he has autism, even though I shared his diagnosis (which is not autism). She gave me some numbers to call to try to obtain a behavior therapy specific to autism. None of the referrals I was given, serve children in our area. She also told me to call my insurance company and get referrals for this therapy. I did that, only to find out that insurance won’t approve the therapy without an autism diagnosis.

There is just no answer. I’m not sure why we bother to reach out for help. I don’t know that I will again, unless the person has already passed out from attempting suicide. Spending hours making fruitless phone calls was not helpful. Brother already has the most intensive outpatient therapy offered- once a week.

School is another issue- the person who was advocating the hardest for Brother has retired. In her absence, school administration has decided that they don’t want to follow the behavior plan. As a result, there is no support for Brother at school without inconveniencing someone. We are working on this with the school….actually, we are battling this with the school. I am so sad that I have spent the last twenty years advocating for students who have various disabilities…and our schools still remain full of leaders who don’t believe that these students belong in their public schools. It is disheartening. I hate to give up the battle, but it only hurts Brother to have this happening- he already feels like he isn’t wanted there. They don’t hide it well.

Change will come…


If You Are Not a Fan of Dental Visits….

If you are not a fan of dental visits, you will understand this. In January, Brother had an appointment to get a cavity filled (his first one ever). He had the flu at that time, and the visit had to be rescheduled (bummer). The next available appointment was six months later (seriously?).

The new date came. Brother flipped out on the dentist and almost ended up with a needle in his eye! The dentist sent us to my dentist, who could prescribe a sedative for the visit. Of course, First is the consultation, then the appointment is scheduled for two or three weeks later. That appointment came- Brother flipped out. The dentist sent us to another dentist who might use a different medication for sedation.

Now comes the consultation, and an appointment scheduled for one month later.

The much awaited appointment was this morning! Brother took the sedative in the office, and it actually made him incredibly drowsy. He was taken to the back…the place where the magic of dentistry happens. Half an hour later, the dental assistant called me to the back. Brother had flipped out while they were trying to take an x-ray. He sat up, started crying, and dissociated. They had been trying to get him out of that state for most of the time they had been in the Magic dentist land. They could not continue.

The next step was to schedule yet another appointment, this time for complete IV sedation in a hospital while the dental work is done. That appointment will be in two months.

I have never experienced this much difficulty with dentistry. I guess the dentists feel the need to try the less involved methods of sedation before getting to this point. At this point, I hope that there is no question for future dental work. Dragging it out over most of a year is a lot, and a tooth that started out with a small spot, is now a big spot of decay.

I did a small bit of research on dentistry for people who have mental illness. Full IV sedation seems to be the standard practice needed in order to treat many patients from this population. Many do not seek dental care unless they are in extreme pain. I don’t think I really understood this until this experience with Brother.


Out of Shape Confirmation

Last night, the AoA kids and I went to a preseason football game! I hadn’t been to an NFL game in about 35 years. My granddaughter AoA was participating in a halftime show last night, showcasing area cheerleading teams.

See the blue seats at the top of the stands? That is where we were, only on the other side of the stadium. The sheer excitement and enormity of everything barely gave me time to think about the hike to the top. There were elevators somewhere, but the only ones we passed were for employees. Once we got up to the platform at the bottom of our section (where the concessions and restrooms were), it was another 75 steps to our seats.

This is the view of the top of the stands, from our seats.

We made it! A little panting, a lot of sweating, and some legs like noodles…but we made it! We were a bit early, so I did what I do, and encouraged others of my age and fitness group as they also made it to the top.

This was the halftime presentation by area cheerleaders. All I could see was the dress colors and movement…which was very good. Granddaughter AoA was in a black based, sleeveless uniform with a red hair bow.

I love the reminders life throws my way…I have been completely over-cautious and even a little lazy since my knee replacement surgery last May. I’m not suppose to walk or jog as a main source of exercise…only things with low to no impact on the knees. It is definitely time to set some new fitness goals, especially with the amount of activity that I want to be able to keep doing. I don’t need to have a smokin’ hot body….just need to be able to walk up steps in a stadium without feeling like I am going to pass out!

Here we go…


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.