Life can be a roller coaster, of this, I am nearly an expert. Each day, week, month, year is filled with ups and downs, twists and turns. When life tends to spin me around in ways that I wasn’t expecting, the blog tends to fall silent, but I am far from being silent. Instead, I am dealing with other ways of expressing myself….

The following blog entry may not be suitable for everyone to read. You won’t find fiber arts and the like today. Instead, I am going to be writing about some very sensitive issues, and please, I do not mean to offend anyone with my thoughts or the things that I write. I honestly believe that I have a unique perspective due to the dynamics of my family. Some of today’s content may be controversial as I will be discussing some recent current events, mental health and developmental disabilities. If you are not up to dealing with some very heavy subject matter, please, come back to read my blog another day when I am feeling a bit more lighthearted.

Spring break feels like it was so long ago. I kept busy with the kids, and tried to keep the kids busy without driving me completely insane. As usual, we all survived. Nick returned to school and all seemed right with the world.

Then there was Virginia Tech. First, my heart goes out to everyone affected by this horrible and senseless tragedy. Not a day goes by that I don’t keep all those affected in my thoughts and prayers. I’m not a religious person, but on occasion, I do pray. I’ve been praying more often lately. When I saw the news, I was so horrified. As the reports continued to come in, it felt so devastating. I live 3,000 miles away and all I could feel was horror, pain, shock and numbness. I know that what I felt wasn’t even the smallest fraction of what those who directly suffered are still experiencing. As it all began to sink in, I began to think of Nick. I had to prepare myself to help him understand this. I knew with all the coverage he would somehow be exposed to it and I wanted to be able to help him understand, especially with the release of information that the responsible party may have been Autistic and suffering from Mental Health issues. I needed to be sure that Nick got the right information and stayed away from watching any of the news channels.

Nick is in a special education class designed primarily for children who are classified as emotionally disturbed. The title doesn’t necessarily reflect Nick’s particular disability, but instead is a outdated title for his placement. Most of the students in Nick’s class suffer from varying forms of Autism Spectrum Disorders, some combined with Mental Health issues such as Attention Deficit Hyperactivity Disorder, Depression, and the few with Bipolar Disorder. I never take for assume that Nick can process and filter information for the correct facts, he will take speculation and rumor, and accept it as if it were set in stone unless someone helps him with the correct information.

When Nick came home, I was as prepared as anyone could be, which in reality, no one can be. I sat down with him and began to have a very serious discussion and he interrupted me, telling me that he already knew. His classroom is supposed to be self contained, and the program designed to shelter him and his classmates as much as possible from these type of outside influences. So the fact that he knew really worried me. I asked him how he found out, apparently the two class aides spent quite a bit of their day checking the news sites, updating one another verbally and Nick overheard. (I have brought this up to the appropriate people at the school and district levels, and requested that it not happen again. I was assured that this was unacceptable and that the aides would be advised to protect the students from being aware of anything like this in the future. At the same time, I can understand wanting to know what was going on, but it just should have been done outside of the classroom and away from the students.)

I told Nick that I didn’t want him watching the news for the next week or two because of all the speculation and coverage. He was really good about that. I also let him know that if he needed to talk about it, he could come to us and we would be honest with him. For a little while, everything seemed to be okay. Nick seemed unaffected and uninterested.

Until April 30th.

On that day, I got a phone call from his class. He completely lost it in the afternoon. Nick made threats, some very serious threats. In the past when Nick has escalated to anything near this point, the staff in his classroom will give me a heads up warning so that I am aware of the mood he may be in when he comes home. Most of the time, I usually have less than 30 minutes warning to prepare to help him deal with the current issues that are triggering what we call “meltdowns”.

Nick arrived home, very angry and frustrated. He didn’t want to talk at all, but ranted about feelings of persecution and went to the back of the house where he locked himself inside the laundry room. He stated that he would spend the rest of his life in there and never wanted to go back to school again.

I gave him his space somewhat. Staying within earshot and checking on him verbally from time to time. After a half an hour, he managed bring himself out to the front yard. I tried working with him somewhat. He was beginning to shut down on me and I had to be really careful in how much I pushed him so that this wouldn’t happen. Progress was slow and limited, and in the end, I found myself redirecting him instead. With Nick, he is sometimes like an old scratched up record, playing the same bit over and over until someone knocks the needle over a bit so the record will stop skipping. Redirection is like bumping that needle, and can completely change his moods faster than you can blink. It wasn’t even so much as a bribe, but the suggestion that we should just all get ready and go for a little walk downtown, and maybe visiting Spurg at work for a few minutes. It was enough to get the record to stop skipping. It was enough to pull Nick out of focusing on his anger and give him something to look forward to.

The rest of the night went wonderfully from there. Nick was able to pull himself out of the cycle. We picked up pizza for dinner that night and I gave Nick the option of taking a mental health day off of school the next day. This would also give me a chance to find out what exactly happened, and help Nick process everything in a more constructive manner.

Well, it didn’t quite happen that way. The following day I received a phone call from someone we will call Mr. J. who had become aware of the situation 24 hours after it happened. He mentioned that there wasn’t much of the school year left and maybe I should just keep Nick out of school. Momma didn’t raise any dummies and I saw huge red flags…. this was not acceptable. I mentioned a little thing called FAPE and Mr. J completely changed his tune. (FAPE stands for Free and Appropriate Public Education and is part of Federal law that guarantees children with disabilities are not excluded from their educational rights because of their disability under IDEA or the Individuals with Disabilities Education Act). Now Mr. J decides we need a meeting… yes, one would think this should have been the first suggestion instead of the second.

At this point, I am a little upset. This is where I become vocal in life. I hate public speaking, and I hate dealing with these type of situations. I’m not even one to talk on the phone often, but do on occasion. This was a day for me to wear out the batteries in the phone…

I called the class clinician…. new and inexperienced, and when her phone cut us off, she didn’t even bother to call back. So I did. Then I needed to deal with the kids, she gave me a time that she would call back, and she never did. Over the next several days, I would come to realize that she is one of those people who doesn’t seem to believe in working with or informing the parents of what she is seeing at all.

I called her supervisor, who unfortunately, was in a meeting. Another supervisor that I happen to actually know somewhat, returned my call. She (we will call Ms. S.), in turn called someone we will call Mr. M at the district office. This resulted in a ton of phone calls the very next day.

First, Mr. M, was so apologetic. The situation wasn’t handled appropriately at all, so sincere. A few more calls from Mr. M through the day, and the tone started changing. We need to move Nick to such and such private program. No. I won’t let them, the placement is not at all appropriate. I know people who work at some of the other placements… Nick has had too many changes this year and he doesn’t do well with change at all. Moving his placement may cause him to shut down completely.

I start making phone calls to people I know and a few I don’t. My gut is telling me to get ready for a fight. I must have made quite an impression as higher up’s in special education in this county began making calls on my behalf. Next thing I know, I have been put in contact with Ms. B from an advocacy program. Actually, Ms. B is the head of the advocacy program. We discuss things, we set up a meeting to go over strategy. We agree to meet on Friday morning.

Tuesday, Wednesday, Thursday. I spent those three days on the phone making as many people as possible aware of what was going on. I even called VMRC (Valley Mountain Regional Center) to see if I could get the report from the doctor in San Jose and if there was any way the could expedite Nick’s case to see if he would qualify for services. I explained what was going on, and VMRC, much to their credit, agreed to do anything they could to help.

I had to call Mr. M back at the district. I needed to reschedule the appointment that somehow became an IEP (Individual Education Plan). I needed time to prepare and get my own group of people together who could help me advocate for Nick. Honestly, at this point, I was scared. I felt like we were about to be persecuted because of the current climate of fear. (I was not the only one who had this impression either.) I’m not saying that in today’s world that there isn’t reason to be afraid, but Nick has certain protections under federal and civil law. Nick has been getting help for his disabilities since he was five years old. The things that were being suggested would violate so many laws and punish Nick for a behavior that is directly linked to his disability. There are such fine lines in all of this, and it comes down to doing full investigations, assessments and so much more than I can write down. I made sure that every one was aware of everything, even the classroom exposure to the news by the aides.

Friday morning I met with Ms. B. The woman is a true kick in the pants. We sat talking for over two hours at the coffee shop, and she made one very good point. If Nick was such a threat, why did it take over 24 hours to report it, and why didn’t anyone call the police? There were a lot of papers to sign. Some giving my permission for her to advocate for us, some releasing information so she would have all she needed to advocate effectively. We joked about the paperwork. Turns out she has a special needs son as well. She said she had enough past IEP papers to wall paper her bathroom. With all the papers I have for Nick, I think I could probably wall paper an entire house. Every agency has it’s forms and protocols. When you have a special needs child, you have to do tons of paperwork, and every year, it all has to be redone. Friday afternoon, the report from the doctor in San Jose was in my hands….. it would make all the difference in the days to come.

I also kept in contact with Nick’s teacher, who really didn’t feel threatened by Nick at all and thought that everyone was just over reacting a bit much. Nick’s teacher is a real gem in my book. It’s his first year teaching this special ed class, and while he really does have a lot to learn, he’s not afraid to call me up for advice and pointers on how to deal with certain situations. He’s nearly ready to try anything to help Nick succeed. These are classic hallmarks of a teacher who is still in it for the love of children and still idealistic. I hope that he never loses those qualities, for they are what make him really special to deal with. I also later found out that Nick’s teacher contacted the other assistant principal who was on vacation. Mr.P. Now Mr. P. knows Nick well, and he made some phone calls while on his vacation to let other people know that this way getting blown way out of proportion. He would be back from his vacation in time for the IEP.

I can’t even tell you the toll this has taken on me. I earned migraines so severe that I couldn’t eat. By Friday, I had to let it all go. I had to stop focusing on fighting for Nick for a few days so that I could feel like myself again, before I made myself ill. I spent the next four days grounding myself back to sanity with my spinning wheel. Many days, I didn’t cook dinner, but instead decided takeout was a better option. I became careful of how I expended my energy, focusing only on relaxing, spinning and watching Firefly and Serenity (great sci-fi series and movie made from the series…. go get them!). I needed to be in the right frame of mind for Tuesday, the day of the IEP. I was dreading it.

Tuesday came. Spurg took the morning off so that the kids wouldn’t have to be dragged along with me. I prepared as much as I could have. The phone started ringing at 8:30 in the morning. First call from Ms. B. confirming the IEP time. I kind of expected that one. The second call I didn’t even see coming. Nick’s intake worker from VMRC. She had tried to get out of an appointment so she could come support us at the IEP. She said she even begged her supervisors, but no one else could take the appointment for her and she felt so bad. But that wasn’t the end of it, she had something else to tell me that would help. And the woman nearly left me in tears. Nick was approved for services through VMRC. She explained to me that there are two types of approvals that are given, provisional and full. Provisional is when they expect things will get better down the road and services can be discontinued. Full would mean services for life. Everything from behavior modification, counseling, mental health, day programs, social skills training and help, assisted living… Nick qualified for full services. Nick finally has qualified and will get help for the rest of his life.. even when I can no longer help him, he will have others helping him for the rest of his life. You cannot know how much I needed to hear that Tuesday morning. She would do what she could to get a coordinator as soon as possible.

That phone call changed our world. Nick has a new primary diagnosis. He’s had 12 different primary diagnosis since the age of five (and I cannot even begin to count all the different medications that he has been on or tried through the years). Nick finally has one that makes a lot more sense. Nick is not a bad kid, just like I told everyone. Nick has Autism Spectrum Disorders (new primary diagnosis is Pervasive Developmental Disorder-Not Otherwise Specified (deemed a significant impairment in Nick’s case), borderline Asperger’s and Bipolar Disorder as a co-morbid condition. This would completely change what action the school district could and should take as well as the services that Nick would have in place.

I made it to the meeting a bit early and had to wait. As expected, those who wanted the meeting were having their little “pre-meeting” to form their strategy. I was waiting for the three people I had lined up to help me, the advocate (Ms. B.), the supervisor (Ms. S.) and another person from the agency who oversees special education in our county (Ms. K.). Placement change cannot happen without my permission and Ms. K’s approval. Ms. S showed, but there wasn’t a sign of the two others. We had to go in the meeting without them and I could only hope that they would show soon.

Walking into the room was instant intimidation. There were so many people there that that the district had called in, I was sure I was being set up to be railroaded into what they wanted. My gut instinct was to bolt. To just get out of there and look into homeschooling Nick. Nick’s behavior had drastically improved during the last several days to the point he was being an angel. All the things that would stress him out had been removed from his day, and he was doing fine under my sole supervision. I sat there. They talked first. They pulled up files and notes from years ago. The class clinician gave a description of Nick that made him sound like a psychopath.. I didn’t take any stock in what she had to say, she has only known Nick for a couple of months and I am convinced that she is too inexperienced to have a clue. (This woman leaves me paranoid beyond belief, I am almost convinced that she is trying to get rid of Nick so her job is easier.. and to be honest, she is quite rude as well. Negative comments like this are not my norm. I give praise to those who do their best, but this woman either needs to get serious about helping these kids, or she needs to get out of the business.) For a half hour I listed to everyone discuss Nick’s behavior past. It put me on edge. Ms. K showed up. Ms. B had an emergency and couldn’t make it. Ms. K must have seen the panic on my face, she touched my arm and said “don’t worry, we’ll take care of you.” It was the most reassuring thing that any one could have done.

I shared the report from the doctor in San Jose. They made copies, lots of copies. I informed them that Nick’s diagnosis has officially changed and he was approved for full services from VMRC. Magic words. The report confirmed that some of Nick’s behaviors are a direct result of his disabilities. I outlined all the changes that Nick had been faced with this year, all the challenges that he needs help with. Ms. K spoke up, her opinion was that with only a few weeks of school left, changing placements would be the worst thing the district could do. No more changes. The school was asked if there were any anticipated changes to the class in the fall. No. They are planing to have Nick return in the fall. What happened next was enough to make me feel like I had been magically transported into an obscure episode of the Twilight Zone. Everyone started asking how they could better support Nick, District wanted to know what the school needed, school wanted to know what the clinician and teacher needed. Mr. M even stated that he would buy a copy of Roller Coaster Tycoon 3 for the teacher to use as a reward in the class for Nick. It’s a game that Nick has wanted, but they only make it for PC’s and not Mac’s. At home, all we have are Mac’s.

Where did all the evil people go? Where were the people who had frustrated and angered me to the point of severe migraines and panic attacks? They were talking of rewards here…. and observation by a behavioral interventionist. I had to speak up again. Wait, what about consequences? I was never against consequences here, just against persecuting Nick for being disabled. We need to make it clear to him that this wasn’t acceptable.

I think they stared at me like I had three heads. I outlined what I felt were more than acceptable consequences based on his behavior. He cannot bring a backpack for the rest of the year, he will have to turn out this pockets and take off his shoes to check for contraband in the main office away from his peers (they would only agree to this for a couple of days to make an impression on Nick), he needs to have a meeting with the teacher, the clinician, a school administrator and me before he is allowed to return to school so that he understands the seriousness of the situation. He needs to know that the behavior is unacceptable. And if he acts up in class once he returns? Remove him from the class entirely. No reason why the other students need to have their day disrupted. The days that he has been out of school? Call it a five day suspension, with approval from mom. And if he seems to be getting stressed out, give him a safe place he can go to calm down… before things get out of control. Nick does very well when he is given the opportunity to have a little quiet time.

The school psychologist thought these were excellent and completely agreed that Nick needed the consequences in place for us to effectively make an impression, and so that we can better help him.

The meeting lasted over 90 minutes. I walked out of there really feeling like the majority of them finally understood Nick and what he needs to be successful(either that, or for some reason they decided not to take me on that day). They finally understand that this is not a bad kid, he’s a good kid with a lot on his plate, and he made a really stupid mistake with the threats because he felt cornered, overwhelmed and frustrated. All he wanted (and this is exactly what he told me after three days of working with him to open up) was for everyone just to leave him alone. The kid just needed some space and didn’t know how to make it happen the right way.

There are still phone calls coming in today. Mostly supportive, making sure that Nick will be back in school tomorrow, offers of letters to help expedite needed services and compliments on the advocate mom that I am. I requested that he have one more day at home so that I could work with him to prepare him for returning to school. Nick is a creature of habit and routine. His routines have been disrupted and the return will be pure disaster unless I have the chance to prepare him. There will be no surprises tomorrow. He knows exactly what to expect, and when he knows what to expect, he is able to function fully.

I know this will not be the last time that Nick makes a really stupid mistake, nor will it be the last time that I will have to step up to the plate to make sure that everything is taken care of appropriately, without violating any laws or Nick’s rights. It’s a long road with too much paperwork and bureaucracy, but Nick is worth it. As the school psychologist stated from his experience with Nick “he’s a good kid and he just needs the right things in place to succeed.”

For me, I have ordered some books. I don’t know very much about Autism Spectrum Disorders, just some outlined basics. I found some highly recommended books on Asperger’s/higher functioning Autism and behaviors that should be a good starting point in helping not only Nick, but the school to set Nick up for success. Nick’s teacher has even shown an interest in borrowing them when I have finished reading them. I told you he was a gem.

*note: In the past, I have noticed that a few people have reached my blog with searches for VMRC or Asperger’s/High Functioning Autism. I am assuming that you are looking for information with both or either of those. If you would like to contact me about these topics, please leave a comment and I would be very happy to contact you privately to help out however I can… as I was recently told… you are not alone in this, there are others of us out there with you.

* second note: I’m not kidding about the gray hairs. I’ve grown several more this week. I refuse to dye them. They are my badges of honor in raising 2 children….