As I was getting ready for work yesterday, I received a text from the mother of a boy who rides my kids' Special Ed bus. She was writing to see if Troy could come to her son's birthday party.
I eagerly told her that I was sure he could come and even said I would give him daytime allergy medicine to prevent their pet cat from being a problem for him.
Then, the mother sent a follow-up text message to tell me what kind of party it will be, a Halo tournament. I had no idea what Halo was, but she explained that it is a non-gory, fantasy shooting and fighting multi-player game.
I was a bit uneasy when she told me that. I'm quite overprotective and totally anti-gun. (I don't even let the kids play with water guns because I don't want them to think of guns as toys. Yes, I've been told I'm crazy for that one on more than one occasion!)
Later in the day, I looked up the game and found out that it is rated M (Mature) and for ages 17 and up. Troy is 9. I have just started to let him play a few video games rated for ages 10 and up, and that has made me uneasy!
I felt very conflicted. As a result of his autism, Troy does not relate to his peers well and does not have friends. It is not likely that he will be invited to another party for the rest of the year. He loves video games, and though I don't feel comfortable with shooting and violence, I wondered if I should ease up and let him go. What sort of damage could a couple of hours of playing a video game really do? And the opportunity to get to hang out socially with some of his peers is a rare experience!
But I also know Troy better than anyone. I know how impressionable he is. I know how he struggles with his emotions, and a violent video game is not appropriate for him. I know how fixated he becomes on things as well, and I know that he would become obsessed with the game if he were to play it.
I felt like a middle school girl again. What would the boy's mother think of me if I said no to him going? Would she think I was an overprotective, uptight, weirdo? How would she judge me?
Yes, I'm 36-years-old, and I admit that I worried about not being cool!
I told myself to get over it and just be honest. I texted the boy's mother and told her what I had discovered about the game and my concerns. She was understanding and offered a solution so Troy could come to the party anyway. What if he came for the beginning of the party and left before the tournament began?
I knew that would not work. I knew the other kids at the party would be excited to play the game, and Troy would become incredibly angry and upset if I forced him to leave, knowing that they were about to play without him.
I told the mother that I would do further research before making my final determination. So, last night, after the kids were in bed, I sat and watched several videos of people playing Halo. I must say that the graphics were impressive, but the game itself was full of nothing but shooting and guns.
It did not sit well with my soul. The decision was made.
This morning, I texted the mother and told her that after further consideration, Troy would not be attending the party but that I would love if our boys could get together soon.
The anxiety that had weighed me down for over twenty-four hours lifted, and I felt peace, which led me to believe that I had made the best decision for Troy's well-being.
The mother has not responded to my text yet. I do wonder what she is thinking about me, but it doesn't matter.
I know that as a parent, I must do what I believe is right, even when it is difficult.
A few days ago, we had a pretty disastrous family game night. It was clear that we were torturing Troy by making him sit at the kitchen table and play an interactive game. He wanted to be by himself in his room instead.
At one point, he even said, "Mom, I was not created to spend time with other people. I was made to be by myself."
Troy has autism. Social interaction is difficult for him, and he is much more content being by himself than spending time with others.
So, when he made these statements, he was self-advocating, which I want him to do. He was saying he wanted me to respect him and his needs.
In that moment, I was torn. I suddenly wondered if I was making a mistake by making him spend time with us. Was I being disrespectful and not honoring who he is? Or was I doing the right thing? Was I, as I hoped, helping to prepare him to live in a world that will demand that he interact with others if he is to be successful?
I wasn't sure, but I didn't let him go to his room. I held the demand and told him, "Troy, in a family, you spend time with one another. We are having family time, and since you're part of this family, you're going to play with us."
We muddled through, albeit quite miserably, and finished the game.
I was still unsure if I had made the right choice in how I handled the situation. The uncertainty has weighed heavily on my heart.
Today, I shared this story with his therapist and asked her I had made the right choice? Or had I dishonored his needs by forcing him to play with us?
She said, "Our job as a parent is not to make our children happy; it is to help shape and mold them for their future success."
It was such a simple statement, but it lifted a huge weight off of my shoulders.
At that moment, I knew I had made the right choice.
In school, he will not be alone. In fact, he will have to work with partners and groups often. In a future job setting, it is likely that he will have to interact with others in some capacity. In family-life, he has to be able to communicate with and tolerate others. In short, he has to learn that he cannot always be isolated, and he needs to learn strategies to cope with his discomfort.
She did give me one piece of advice to try next time; she suggested I use the First Then system with him. If you're unfamiliar with this, it basically just reminds him that this undesirable activity is not going to last forever, and then he gets to do a more preferred activity. For example, I could have said, "Troy, first, you're going to play this game with us, and then, you can go spend time in your room."
It was valuable feedback, and I will definitely use it in the future.
I know that very few of us strive to be the "cool" parents or want only to make our kids like us. Still, it is easy to second guess the decisions we make and wonder whether we are doing some long-term damage with our well-intentioned actions. In those moments, let's all remind ourselves of our role as their parents and be willing to push them, gently, out of their comfort zones, knowing that we are preparing them for what is to come.
Earlier this week, I attended a seminar put on by my children's school district entitled Hope With Autism.
The speaker was a counselor in private practice who works with kids on the autism spectrum.
I was excited to listen to him, to learn from his wisdom and experience, and to be inspired. I brought a notebook and several pens to jot down the important points I wanted to remember. He had a PowerPoint presentation, and while many cringe at them, I have a bit of glee when they are used because I am a serious, detailed note-taker, and they help me in my endeavor to ensure I get every single point recorded.
Early in the talk, a slide listed "symptoms" of autism. I could not focus on anything else on the slide beyond the word "symptoms." Symptoms
. I could not stop staring at it! The word made my stomach hurt. Its implication is nothing but negative.
Look it up online; this is what comes up (I bolded a few words for emphasis.).:
- a physical or mental feature that is regarded as indicating a condition of disease, particularly such a feature that is apparent to the patient.
- a sign of the existence of something, especially of an undesirable situation.
I was hurt. I was offended. I was even a tad bit angry.
My sons are not sick! They do not have a disease! And while we have challenges every single day, I do not think of their diagnoses as an undesirable situation. Truly, I do not! They are who they were designed to be, and I adore them!
This does not mean that I don't do everything I can to give them tools to be successful in this society. This does not mean that I don't have days of frustration or sadness. I do. I am human.
BUT-I love the way their brains work and the way they view the world. I love their spirits, their perspectives, their humor, their insights, their absolute uniqueness.
I stewed as I stared at the slide. All these thoughts and more went through my mind as I stared at the word, and then, I had a thought of clarity and became instantly calm.
'He is here to help, Brandie! He had no intention of upsetting anyone, and instead of vilifying him over the use of one carelessly used word, do something!'
Obviously, I wasn't going to interrupt the presentation, so I jotted down a note to myself and then decided to give him my full, open-minded attention.
Well, later in his presentation, he showed a clip from Autism Speaks and also referred to them as a great resource to the families in the room.
Again, I was disappointed, but I talked to myself. Like so many others, he was probably unaware of the dissatisfaction so many have for the organization. After all, I have only been educated and convinced about the negative impact AS has on the ASD community in the last year.
I made another note for myself.
I listened to the rest of the presentation and concentrated on being a positive and supportive face in the crowd for him. Reminding myself that he was here as a positive resource for the audience members and that he meant no harm by the things that had offended me helped me do so.
Still, I knew that if I was truly wanting to affect change, I would have to, somehow, share my concerns with him.
When he finished, I looked for an opportunity. I saw none. I was not looking for a confrontation or to have anyone else hear what I said, feeling like that would be incredibly rude. I saw no way to speak to him privately, so I left.
I found myself thinking about my concerns all night long and immediately when I woke up the next morning. At work, it was gnawing on me. I considered letting it go, not wanting to be confrontational.
Then, I thought of my boys. Fear of confrontation should never keep me from speaking up on their behalf!
I decided to e-mail him.
I knew that I wanted to be helpful, not hurtful. I knew that I wanted my message to be welcomed, not shunned. I knew that I needed to offer solutions, not complaints.
I expressed my feelings and gave him some alternative words and resources to consider in the future. I explained that I did not want to offend and was coming from a place of genuine desire to help. I also thanked him for his work with kids like mine.
I hit send. I hoped it would be received well, but whether it was or not, I knew I had done what I felt was right. I had advocated for my children and all children and adults like them.
Ninety minutes later, he responded. He was gracious, apologetic, and open to my information and suggestions. He thanked me for my kind words. In short, he was wonderful, and I was grateful.
I am so glad that I did what my children deserve. I spoke up for them when they couldn't.
Please, remember that advocating often goes beyond the classroom or the IEP meeting room walls. Please, also remember that very often, the people you want to educate are coming from a place of good intentions. Treat them as such. You may be pleasantly surprised how willing they are to listen.
Yesterday was not a great day.
I had begun the day with tremendous hope! The doctor agreed with me that it was time to try an increase in Koby's Abilify. In five weeks of school, he had been formally restrained (because he has been a danger to himself or others) five times. On days that he hasn't had to be restrained, he has still had a bad day about 95% of the time. So, yesterday was the first day of the new dose. I just knew that it would work immediately! (In my defense, when I spoke to the doctor, she told me that we should see a difference pretty immediately.)
On my way to work, I called to speak to the special education teacher that works with Troy. I was concerned that his IEP was not being followed by one of his teachers. He came home with an unfinished assignment with a failing grade on it. It made no sense to me; he has an aide who helps him daily and the accommodation of extended time (1 day) for his work--in addition to other accommodations, such as reduced length and writing requirements. Our conversation was very positive in that he listened to my concerns, agreed that there was validity to them, and promised follow-up. I also called and left a message with the teacher in question, asking her to call me when she could.
Work was busy. As the day progressed, it got busier and busier, and that's when the fun began. Work is always my top priority when I'm there. Some days (okay--many days), however, I end up having to multitask more than usual, juggling phone calls or e-mails about the kids with the ever-changing responsibilities and challenges that come with my job. [Side note: I am blessed, blessed, blessed (!) to have a job that affords me the luxury of grace in taking care of my kids' needs.]
Troy's teacher called to speak to me. To sum up our lengthy conversation, she said she knew about his accommodations and apologized for having Troy slip through the cracks on this assignment. She said she would visit with the special education teacher to come up with some solutions. I explained to her that he needs tremendous supports in place daily in order to be successful.
While we spoke, I worked, splitting my concentration between our conversation and the work on my screen.
Later in the day, I received another phone call from the special education teacher. He had visited with the teacher during recess, and they had come up with some strategies and plans to avoid what had happened. We had another very productive and positive conversation.
When we hung up, I looked at the paper in front of me. I had jotted down notes as we had spoken...and a line...and notes for a work-related issue that I was also concentrating on as we spoke.
Throughout the day, with all of the busyness of the work day and the juggling of phone calls about Troy, I still held onto a glimmer of hope that it would be a great day for Koby. I worried and hoped and thought and prayed and worried some more about how his day was going.
And then...the phone rang again. It was Koby's teacher, telling me that he had a truly awful day. He had to be restrained. Again. The room had to be evacuated of the other children. He was unable to calm down for over an hour at one point in the day. As she continued to relay the many, many challenges she had faced with my son all day long, I continued to stare at my computer screen and to do my damnedest to evenly split my attention between two very different thinking tasks and give them both the attention they needed and deserved. And I could feel myself struggling and failing to do so.
The hopeful glow I had carried around with me all day was extinguished.
To make matters worse, I was supposed to have left work already. It was curriculum night at school, and I was going to be late. Obviously, I had to continue the important conversation about Koby, and I had to continue to plug away at my work. I could feel the stress level rise as I stared at the time on the screen, listened to the teacher on the other end of the phone, and wondered how much more work I could squeeze out before I left.
Eventually, we hung up, resolved that tomorrow was a new day. I closed down my computer and hurried to my car, frustrated that I'd be so tardy to the presentation at school. Still, I was determined to attend.
After curriculum night, I went home and helped put the kids to bed. Then, I cooked myself a box of macaroni and cheese, and Tom and I discussed the day. This ended up segueing into discussions of each of the kids' progress, long-term realities, medication side-effects, etc. This lead to me crying in anger and frustration and, if I'm honest, a little bit of hopelessness.
Later, in the shower, I was replaying my day. (I do all of my event processing in the shower.) I thought about every single event that had transpired, and you know what I realized? I clearly remembered a refrain that I had said under my breath over and over and over again all day long...."They're worth it."
I said it, I believed it, I knew it, and I reminded myself of it all day long without even realizing I was doing it. "They're worth it, they're worth it, they're worth it, they're worth it."
I carry that truth with me every day of my life. I don't care how much stress I have. I don't care how much juggling and multitasking and exhaustion I have some days. They are worth it.
A family member reached out to me this morning for some advice. She has a daughter very much like my own. She is about five-years-old (still in pre-school) with a mood/behavior disorder and high functioning autism.
Last night, my family member took her daughter to her first soccer practice. Shortly after arriving, she had a melt-down. It was not as severe as some, but she was quite loud, and she did do some flapping. In the midst of this, my family member heard another parent remark, "Oh, we have one of those on our team." You read that right, one of those. My family member did not react to the hateful words, choosing to just get out of there as quickly as possible.
I was livid! And heartbroken for my family members.
I was at work, and so, I shared the story with some of my co-workers as we were leaving for lunch. I was certain they would all be as furious as I.
Some weren't. Some said they would have probably made the same remark. They said they wouldn't just say something like that if a child was having a meltdown though. They would also say it if a child was exhibiting poor skills on the field or didn't want to get dirty. Or any number of reasons. I questioned them, asking, "You would seriously put down a five-year-old in front of the child and/or his or her parent?"
The answer was yes.
I could feel my eyes fill with tears, and I had to stop talking. The subject was changed, and we carried on with our lunch plans.
But I was hurt. And very, very sad.
After lunch, one of my co-workers asked me if I had been upset by their comments, and I, generally very non-confrontational in nature, said, "Yes, very." We discussed the issues a bit more.
I told her that the conversation at lunch had solidified my resolve to keep fighting for awareness and acceptance of children with special needs. She asked, with genuine curiosity, what awareness and acceptance could do for kids like mine. I told her that I am hopeful that these children will be treated with kindness, compassion, patience, and understanding. I told her that children emulate what their parents do and say, and if a parent feels that it is acceptable to say something negative to or about a child that is different than his or her own, his or her child will grow up doing the same thing.
I don't think our conversation changed her mind on the topic. I do appreciate her willingness to listen to me though. I know that she did not want me to be upset; we just have a difference of opinion.
It's funny though...a couple of days ago, I was sent information about the Dallas Stars having a charity night with free tickets for families with special needs children. I told the girl who sent me the information that I was so grateful that awareness of families like mine has led to companies reaching out and offering special opportunities to experience events that they never would have before. And it is true. Movie theaters often hold special viewings for kids with autism or sensory processing disorders. Museums have special events for kids with autism. A local organization held special Santa visits away from the hustle and bustle of the mall this past Christmas. The list goes on and on.
Awareness is spreading. Acceptance though? I think we have a long way to go. And for that reason, for my children, for the millions of special children and families out there, I will not give up.
Today, I learned that I must keep fighting.
I have a six-year-old, beautiful daughter whom I love immensely. I am extremely proud of her high intelligence, creative spirit, and artistic talent. She has been blessed with many enviable gifts, but she is also mentally ill, and of my three special needs children, by far, the most challenging to raise. Truthfully, I often find myself terrified of what she could be capable of.
My daughter was a drug-exposed baby who was brought to me when she was a day old, and I loved her immediately! She was never an easy baby though. She suffered from severe acid reflux, which caused her to projectile vomit constantly. She struggled with sleep, had some delayed development, and although she was one of the prettiest babies I had ever seen, as she grew, she also became the most difficult to manage.
Of course, I chalked it up to her age. She was just a bit more naughty than most toddlers. I believed/hoped she would grow out of it. Sure, I knew her birth history, but I also felt confident nurture would outweigh nature. I did not have a moment's hesitation in choosing to adopt her and her brother. If I had a crystal ball that could see into the future, I do believe I'd make the same choice. I love her very much.
What I am finding, six years in, is that nature is not a force to be reckoned with. My daughter is mentally ill. Nothing I do will ever be able to change that. Nothing. And some days, on really tough days, that truth is hard to face.
Over the years, she has made momentous progress. She was completely out of control for so long, and now, she is able to function relatively well. I try to remember that when the really bad days come. My friends and family members remind me, too, and that helps.
Still, the fear is there.
I struggle with anxiety. I fully understand that my brain leaps to wild conclusions at times. I use self-talk to calm myself when I believe I'm being ridiculous. I also talk to others about my fears to gauge how realistic my concerns are. When it comes to my daughter, it is not often that I am told I am being ridiculous.
My daughter has, among several other diagnoses, Oppositional Defiant Disorder; she is impulsive, defiant, hyperactive, dishonest, aggressive (both physically and verbally), and lacks empathy and the ability to feel remorse. The school's official label for her: ED (Emotionally Disturbed). I'm not bothered by any of these labels or adjectives because they are our truth.
To illustrate what I'm saying, I'll give you one example from about two months ago. She and her brother were arguing. It appeared to be a very minor squabble. They were in the living room; Tom and I were in the kitchen, a mere eight or ten feet away. We didn't even pause our conversation because they weren't even raising their voices. Suddenly, we heard loud screaming and crying. She had bitten his lip! I'm talking almost all the way through. There was blood everywhere, and his lip was severely swollen. She was so calm and appeared to be genuinely shocked when I sent to her room while we examined him. After making sure he was okay and didn't need to go to the hospital, I went to speak to her. I tried explaining to her how severely she had hurt him, telling her that he would have trouble eating, smiling, brushing his teeth, etc. for quite some time. She had no reaction, no remorse, no concern for her brother at all. Trust me when I say she is very intelligent. It is, most definitely, not a question of IQ.
For weeks after the biting incident, I was afraid to let the children out of my sight. I know parents often joke about there being trouble when the kids go quiet in the other room, but I don't think most feel the terror I did in the aftermath of that evening. Luckily, it was an isolated incident, and things continued to go relatively well for quite some time.
This week, she had a rough day at school, a very rough day. She had to write a letter to the cafeteria workers that the teacher and I both had to sign to apologize for her lunchtime behavior. I also had her write a letter to her teacher to apologize for her classroom behavior. Although we went through each and every bad choice she had made that day (it had gotten so bad that she had to be removed from class), she actually did not believe she had done anything wrong. I truly felt hopeless that night.
Once again, friends and family consoled me and told me to remember her progress. I was encouraged to not give up. And I'm not.
She is worth fighting for.
I got on the phone the next morning with the psychiatrist, and we are going to make some medication changes. She also told me that perhaps it is time to move past play therapy and on to cognitive behavioral therapy. I called the play therapist and asked her to help me with the transition. The problem? They currently have a very long waiting list. I'm waiting for a call back before I start searching elsewhere. I am in constant contact with her teacher. I will call for another ARD (Admission Review Dismissal) meeting if necessary to discuss other classroom accommodations for her, like increased time an aide is in the room with her. We started a new evening routine at home to try to help. And, of course, we began a new sticker chart, too.
I will NOT give up on her.
It's hard though. I have moments of hopelessness and despair. It's very exhausting. And sometimes, although I know people have good intentions, they actually hurt my feelings because it feels as though they don't believe or understand the difficulty of our reality. I have to remind myself that very few people I know have experienced anything like what we live all day, every day in this house. Of course, they are doing their best to try to help me through tough moments. Sometimes, though, I think a sympathetic, willing ear is what would be best.
You see, the reality is that no matter the quality of the therapy she has, the number of medications she takes, the strictness of the routines we follow, the number of specialists she has, the support systems in place, the positive reinforcement methods we try, the books we read, the lectures we deliver, the discipline we give, the doctors we visit, the prayers we say, the love we show...she remains mentally ill. We have no idea what the future holds for her. That is a truth that is sometimes difficult to accept.
I'm not looking for advice, though if you want to offer some, of course, I appreciate it! This is just what's on my heart right now, and I felt the need to write about it. If you're in a similar situation, take solace in the fact that you are not alone. Too often mental illness is brushed under the carpet, which can make reaching out so much more difficult.
I also ask that if you are not in a similar situation that you show compassion to parents like me. None of my children look like they are not typical children. If we go to a store, I know that I can look, in the eyes of so many, like a "bad," overly-permissive parent who has no control over her children. If one tantrums on the floor, runs away from me, yells, throws things, or removes a mannequin's arm (don't ask), don't immediately jump on to Facebook to report what a horrible mother I must be who needs to spank my child immediately. Instead, give me an encouraging smile, try to engage my child with a "hello," or say a silent prayer for us. The smallest act of kindness can make all the difference in a moment like that.
I have started and stopped this blog entry about six times over the last week. I know that what I write may upset people, and fear of ridicule and judgment has plagued me with an inability to finish writing this. However, I promised to be more open
on this blog, so I'm going for it. I devote my first 2014 entry to the topic of medication. It is a topic that ruffles feathers and causes people to judge and condemn on either side of the issue. My children take medications and are under the care of very skilled and caring psychiatrists at a local children's hospital. I did not make the decision to medicate them lightly. I do not keep them on medication without great thought. I trust my instincts. I trust their doctors. I do what I feel is best for my children. I am a member of a Facebook autism group. I won't name it specifically. I am seriously considering leaving it though. The judgment and vitriol is ridiculous. Instead of a place where parents can go for help and support, it seems to be a place for other parents to bash, criticize, and judge. The other day, they posted an article from several years ago about a little boy who had been given psychiatric medications and then committed suicide. He was very young, seven, I believe. It is sad, of course. However, the comments that people wrote were horribly insensitive and judgmental to any parent who has decided that medication is the best choice for his or her child. Flippant remarks insinuated that parents medicate their kids because they are lazy and they don't want to deal with challenging behaviors. There was a lot of soap boxing going on from people acting as if parents who choose to medicate their children are not good parents. It was disgusting. Are these news stories important? Of course! Is discussion worthwhile? Without a doubt. However, it is also important for parents who are faced with the decision of whether or not to give medications to their children to not be ridiculed and looked down upon. Should medication be the first option? Not in my opinion. If and when the time comes, and all parties involved decide the pros outweigh the cons, people outside of the situation need to have a bit more compassion and understanding.
Two of my children suffer from intense insomnia. Troy, who is now seven, would, as a toddler, stay up all night, every night and would scream and scream and scream. It was unbearable. Nothing I did worked. I was up all night with him every night and trying to maintain a full-time job and care for three babies at the same time. I was miserable. My mother came to stay, sure she could help. She quickly saw the problem was serious. Melatonin didn't work. Every single bit of advice I came by was tried and failed. It was awful. If he did go to sleep, it was short lived. He'd quickly awake and would scream some more. It was not night terrors. It was much, much worse. He had a sleep study. The report said: "Insomnia due to mental illness." And so, he was given Clonidine. And he slept! He was, soon after, diagnosed with a mood disorder and anxiety and was prescribed Risperdal and Zoloft. These drugs, especially the Risperdal, completely transformed him! I will never forget the feeling of gratitude I had as I saw how much Risperdal helped my son function. I called it liquid gold! Years later, he was diagnosed with ADHD and was prescribed Intuniv and Metadate. He was better able to follow directions and focus in school. That's a lot of medication for a little body! Do not ever think that I don't know that. Don't ever, not even for a moment, think that I don't know about possible side effects and that I don't constantly weigh the pros and cons of every thing I give him. The doctors we see are incredibly conservative in the dosages they prescribe. Our appointments are lengthy (45 minutes minimum per child) and decisions are made after thoughtful deliberation. These medications are allowing him to function in ways that he would not otherwise be able to. They give him the best opportunity for success. We do not, as I've seen many critics suggest, rely on medication only. Our house is run on a strict routine, and he has consistency in every aspect of his life. He goes to play therapy and is seeing a special education counselor. A behavior specialist is involved at school. He has an IEP at school, and an aide works with him in the classroom. In the past, MHMR worked with him at home and school. Medication is one component of his care, but not the only one. Koby, for a time, also suffered from insomnia that melatonin could not touch. The psychiatrist put him on Clonidine as well. It seemed to affect him much more profoundly than Troy. When it came time to refill the prescription, I had a hard time getting in touch with the pediatrician. During the two or three day period, I gave him melatonin only, and he slept fine. So, guess what I did...I took him off of the Clonidine! He has been off of it for over two years. I am not looking to medicate my children. That being said, Koby has had many problems with his behavior. Inability to communicate for so long led to him having meltdowns constantly. We dealt with it though. He's always been so petite and (seemingly) fragile. I didn't want to medicate him at all. When he started to talk over a year ago, the meltdowns decreased. Aggression really began though. When he started kindergarten, he began having several hour-long meltdowns a day. He was destroying his classroom. He attacked the other children, the teacher, and the aides. Every single day. He drew blood from another child. Every attempt his skilled and experienced teacher made to diminish the trouble behavior failed. He is in a structured, self-contained classroom with only about six students, a teacher, and three aides. Yet, he still could not be controlled. Several behavior specialists were brought in to assess the situation and offer ideas. Every attempt that was made to improve the predicament failed. Finally, I had to make the decision that I needed to consult a doctor. As a mother, I would not like to send my children to school, knowing that another child was attacking him or her. I felt a responsibility to those other children to act. So, the psychiatrist decided to start him on Abilify. She put him on the smallest dose. We began it on the weekend, and at the end of day one, we saw a huge improvement in his behavior and demeanor at home,-but he also seemed a bit too sedate. So we cut the smallest dose in half. And guess what! It has been a miracle worker! He has not had a single aggressive episode at school, has followed his work schedule there and been more willing to comply, he is much less likely to be agitated, and (I don't know how this is connected, but I swear it is) he suddenly, overnight, was potty trained! Laura's medications have been just as necessary and just as positively life-changing. Hers are still in a state of flux because her behaviors are much, much more challenging than her brothers'. I'm sure I'll write more about her in the future. All I ask is that if you are a parent who has decided that come hell or high water you are NOT going to medicate your child, and you meet someone who has decided that medication is necessary for his or her child, do not vilify that parent. If you are a parent who DOES medicate your child, and another parent with a child like yours has decided not to use medication, be understanding! Every parent knows that raising children is difficult. Constantly questioning whether you're doing the right thing is part of what you sign up for when you take on the role. So, as fellow parents, heck, as fellow-human beings, we owe it to one another to be a bit more understanding and supportive of the tough decisions that are made in the attempt to give our children the best chance at success they can get.
Today was Troy's annual ARD (Admission, Review, Dismissal) meeting. It is always the longest ARD of the year, and today's was even longer because we had to go over all of the assessment data that has been collected over the last several weeks to reach the determination that he does meet the eligibility for a diagnosis of autism. I won't go into a huge amount of detail about the ARD meeting procedures because that could fill a book and become pretty dry. If you are unfamiliar with ARD meetings, basically, they are committee meetings made up of parents, school administrators, general education and special teachers, a diagnostician, and any other specialists necessary to discuss the special education needs of individual students. At today's meeting, for example, we had a large group: Tom and I, a physical therapist, the school principal, the diagnostician, the special education teacher, an adaptive PE teacher, Troy's teacher, a special education counselor, and a school psychologist were all in attendance. We were missing the occupational therapist.
Each year, progress on previous goals is reviewed, any new assessment data is reviewed, and new goals are developed. Accommodations and services that the student needs are discussed, and plans are put in place. Brief ARDs can be held at any time of the year if necessary. That is the bare bones explanation. If you want further info., please let me know, and I'll do my best to answer your questions. I've sat in too many to count as both a parent and an educator, so I can offer a pretty well-rounded perspective.
Before an ARD meeting occurs, a draft of the reports and proposed goals are sent home so that parents have time to read through it thoroughly and prepare for the meeting. When we received Troy's draft, we combed through the data--and there was much to dissect. I made notes throughout, indicating areas I disagreed with or didn't fully understand. The draft was probably about 25-28 pages long. I agreed with almost everything I read--with one pretty large exception--the occupational therapy portion. I had serious concerns about that portion of the report. You may have skimmed over my list of attendees at our meeting today--the OT was the one person I really wanted to be in attendance today, and she wasn't.
Troy has poor fine motor skills. He always has. He has an official diagnosis of dysgraphia, he can't tie a shoe, he struggles with zippers and buttons, he can't use scissors, etc. His handwriting is horrible -most of the time. He has gotten better and is capable, at times, of good writing, but it is laborsome, and he tires easily and quickly. So, the report that came home said that he had not made progress from his direct services, recommended he use a word processor for his written activities, and completely stop his OT services. It made no sense to me. I could understand and support the introduction of assistive technology, I agreed that he isn't making progress...but I could not support the discontinuation of the therapy. It made no sense to me.
When we got to that portion of the meeting, I was a bit nervous to voice my opinion. For one, the OT was not there. Also, I was afraid the other committee members were all going to disagree with me. (34 years old, and still worrying about peer pressure?!) I was starting to question myself and whether my concerns were justified. But-I thought about the advice I gave recently (Click here for more on that.) I knew I had to advocate for Troy.
So, I cleared my throat and inched forward in my seat and said, "I have some concerns with that." Everyone turned to look at me, and I stated my concerns. I could feel my heart thumping a bit harder as I voiced my disagreement. I finished and held my breath for a moment, wondering what they would say.
What followed could not have been more perfect or comforting! Several of them agreed immediately. They said that they also had those thoughts and concerns when reading the report AND had already discussed their thoughts amongst themselves beforehand. I was told that had I not mentioned it, they were going to! The principal reminded me that we were a committee, and, as a committee, we can determine that that recommendation was not in Troy's best interest. I must have had a huge grin on my face when I heard their agreement and support of what Troy needs. What a sense of peace I felt at that moment and immense gratefulness that this committee of people does care about my son.
The meeting finished-eventually, and we all signed in agreement. The finalized copy of the minutes and IEP goals is 39 pages long! That's quite a bit of information to digest.
I cannot stop thinking about the importance of advocating for our children. I am not just talking about my three special needs kiddos--I'm talking about every single parent and every single child--typical or not. Thankfully, most parents will not have to attend ARD or 504 meetings. But that doesn't mean all parents don't have to advocate for their kids.
A co-worker sent me a text message just last night, upset about an app her son was told to download and use for school. The teacher had very noble intentions, but my friend was upset when she saw some of the other content on the app. It went against her religious and moral beliefs. She had written the teacher an e-mail but reached out to me before sending it. What advice did I give? "Voice your concern! You have to advocate for your children." And she did.
I've been thinking about how nervous I was to speak up in the ARD meeting. I have been in at least 100 ARD meetings-on both ends of the table in the last eleven years. I am comfortable discussing assessment and achievement data and understand standardized testing and can even hold my own when discussing standard deviation. I like the staff that work with my children and believe they are qualified and do care about the kids they work with. And yet-I was nervous to voice my justified disapproval to a room full of these wonderful people.
I started to think about all my fellow parents and the never-ending stream of situations that come up that require us to speak up for what we believe is in the best interest our children. It is sometimes difficult and even scary to do so, and, yet, we do it.
If you are a parent, I know that it can be exhausting and time-consuming and stress-inducing and even terrifyingly nerve-racking to advocate for your children. Do it anyway!
You don't want to wonder what would have or could have happened if you had said something. Believe me when I say that I worked professionally with incredible educators and specialists who genuinely care for the kids they work with. As a parent, I'm thrilled to see it from this end, too. That being said, even when they're doing their best, they don't know your child the way you do. Remember that, and speak up when you feel you need to. I think you'll find that you will be listened to, and you will feel a sense of peace, knowing that you have done your best as a parent.