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.
If you are on Facebook, I bet you have seen people post old photos or status updates from their Timehop apps. If you're unfamiliar with the app: it allows you to link your photos and social networks to it, and everyday, it shows you what you posted on that date in history. It can be quite fun to be reminded of your past exploits and to see fun, old photos. I'm finding I like it for another reason though. It is allowing me to look back on tough times and to reflect on how much progress has been made.
Two years ago today, I posted a very long status on Facebook. I spoke of having a conference with Troy's teacher and finding out that while an increase in ADHD medication was helping his behavior, he was still not conversing with the other children and needed many accommodations in order to be successful. On that same day, I met with the special education teacher about Laura and found out that she had been so out of control in class that help had to be sent for the teacher. Next, I met with the school counselor--who had been working with both Troy and Laura. She suggested that Laura needed a special education counselor and that she foresaw years of intensive work for Laura and years of behavior difficulties. She also suggested that Troy could have Asperger's (this was obviously before the revised DSM).
At one point in the post, I wrote:
"I am so incredibly sad and frustrated and angry that they all have such mountains to climb. And I am feeling so unprepared and inadequate and hopeless.[...] I just wish it wasn't so hard."
I read this old post when I first woke up this morning, and throughout the day, I've read it six more times. When not reading it, I've thought about it.
Two years ago today, I had never even considered that Troy could be on the spectrum. Two years ago today, Laura was kicking people in her class and throwing such out of control meltdowns that extra help had to be brought in to remove her from the room. Two years ago today, every single day, I had bad news from school for one, two, or three of my children. Two years ago today, there was never a good day. Two years ago today, I truly did not know how to move forward or what to do next. Two years ago today, I felt like I could not do this. I was hopeless two years ago today.
In the last two years, my little family has made such tremendous progress that it is truly miraculous. It hasn't been easy. We have had amazing educators, therapists, specialists, doctors, and medications to help us. We've worked hard at home to maintain strict routines and expectations. Our journey is nowhere near over, and it is still a very challenging one, but I am amazed and grateful at how far we have all come.
We still have bad days. We still have really bad days. I sometimes cry. Sometimes, I get frustrated and angry, and I worry about what the future will hold for us. But those days are fewer and fewer between, and I can usually calm myself down with a nice shower and a good night's sleep. (A bit of ice cream helps, too!)
Looking back helps the most though. It's so easy to forget what has happened when and how much progress you have made. Recording it when it happens so you can look back at it later makes all the difference in the world. I'm not saying you have to be like me and share your life publicly on Facebook or on a blog. It can be a journal or whatever works for you. Writing, in itself, is so therapeutic. Looking back on the old events that you have written about is also therapeutic.
This does not just pertain to parents of special needs kids. This goes for everyone! We are all works in progress. I love looking at how far my children have come, but I also love to see just how far I have come! I no longer feel paralyzed with fear, feelings of inadequacy, or hopelessness. I have made great progress, too.
I understand that, at times, the past is painful to remember. It's not fun to remember feeling hopeless. But reflecting on the past can empower you by showing you just how strong you are and how much you have overcome.
So, I encourage you in someway, whatever works for you--to start jotting down bits and pieces of your day--the good and the bad! A year from now, two years from now, three years from now, you'll be glad you did.
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.
Tomorrow is the first day of school. Parents around the country are jumping for joy, and truly, on this day, teachers and schools are probably given the appreciation they deserve. Some parents, however, worry about and dread this day. Will their child be bullied? Who will keep him or her safe? What can be done to protect their child?
If I had the answer, I'd be a famous lecturer or best-selling author, traveling world-wide. I don't. I'm just a mom. However, after reflecting on two events that have occurred in the last week, I've come up with some ideas that I think could help.
Troy is going to be baptized soon. In order to schedule the date, he and I had to attend a class together at the church. They needed to make sure that he understood what the act meant and that he was truly ready.
[Side note: If you are new here, Troy has a variety of special needs. The most notable are autism and ADHD. He does not wear a t-shirt announcing this, and I do not make it a habit of announcing it everywhere we go.]
There was a table that the children were directed to sit around. The parents sat in chairs, circling the table, so we could all listen in to the conversation. There were two adult leaders, and they took turns talking to the children about Jesus, the reason for baptism, and what would happen when they were baptized.
There were probably about twelve or thirteen children there. Troy stood out from every other child there. First, he couldn't sit still. He fidgeted and twisted around in his chair constantly. He also would play with his hands and raise his arms into the air wildly. He seemed like he was paying zero attention. Then, he began to pick his nose. Over and over again.
I was not sitting near him. There were about three parents closer to him than I. I considered getting up and walking over to him to try to get him to stop, but I feared that it would have disrupted the serious conversation at the table. So, I didn't.
However, as I watched him, I couldn't help but notice other parents watch him, too. One mother, in particular, did not even attempt to hide her disgust. She could not take her eyes off of my son. She sat up really tall in her chair, her mouth was pursed, and her eyebrows were raised. She twisted, uncomfortably, in her seat. I kept watching her, hoping she would look at me so I could give her a smile or a nod. She never did. My son had her transfixed. She would turn her attention to her child for a moment, but then, the judgmental body language began again.
You have no idea the relief I had when the table discussion ended, and we were charged with a parent/child assignment. I sanitized Troy's hands and had a quiet discussion with him about not picking his nose. He told me that he just couldn't help it. I explained that it is gross and not polite and that he has to try not to do it. Then, we did our assignment.
As we drove home, I asked him a few questions about the things that had been discussed in the class. He was able to answer every single one. EVERY single one! When I was sure he wasn't paying attention, I was wrong.
Anyway, I was fuming about that woman and the way she had looked at my son. Really, really fuming. I told my family about it. I told my co-workers about it. I was so hurt and angry. I realize that this is not very mature, but I'm being honest. I was judging her for judging my son.
Days passed, and the fuming lessened. It's been in the back of my head, and I've planned about three different blog posts in my head about it over the past week, but as things do, it has sort of faded.
Today, it reentered my mind.
After church, we went to a shoe store for back-to-school shoes. Laura was sitting on the floor, shoes all around her, and a mother and her adorable daughter walked in. They came toward us. The girl was around five-years-old and was disabled. She wore braces on both feet, she was grinding her teeth, and she waved her rubber toy wildly. The mom and I exchanged some pleasantries and small talk about school shoes shopping, and her daughter stood to the side, occupied with her toy. Evidently, the mother decided to try another size, and she walked to the next aisle, about three feet away.
After they walked away, Laura looked at me with a disgusted look and said, "What a silly child!" It was not the fun sort of silly that she meant--she meant it as a very negative thing. I shot her the mom-look. You know the one. It must have been pretty intense because she immediately apologized.
I did not lecture her there in the shoe store because I was hoping and praying that the mother and child did not hear her comment. I did not want to call attention to it and possibly upset them. I saved the lecturing for the car. Trust me--she got a lecture. I hope that she will be more sensitive and polite in the future.
What do these two events have in common? And what on earth do they have to do with bullying?
The adults are the common link in the stories. Do you remember how many children I said were at the baptism meeting? About a dozen. All were there with parents. How many parents showed absolute horror over my son's behavior? ONE. The adults sitting with him at the table didn't bat an eye. 99% of the parents in the room didn't act like they wanted to vomit. And guess how many of the children were mean to him or stared at him. Zero. Not one single child at that table, not even the ones sitting right next to him, paid him any attention.
When I thought about that today, thought about the fact that I was focusing on one person's actions and ignoring the fact that the rest of the room was treating him as he deserved--I felt a bit silly to tell you the truth. However, it also really drove home the power just one cruel person can have.
Today, in the shoe store, when my daughter was insensitive to a child with special needs, I addressed it with her. No, I can't promise you that she will never make a flippant remark again, but I can promise that I will continue to work to make her understand how wrong it is to treat others like that.
Bullying is a difficult issue. Troy was not bullied the other day, and the little girl in the store was not bullied today. They were not treated with respect and understanding though, and I think that those are the underlying issues when it comes to bullying.
Teachers and staff at schools care for students, and they do everything in their power to keep every single student safe. However, they can't do it all.
So, I have four requests for you:
1. Talk to the kids in your life. Explain to them the importance of treating other people with kindness and compassion. Encourage them to speak up for those who are unable to stick up for themselves. Ask them not to bully.
2. Model appropriate behavior. When you witness a child in the middle of a meltdown, being pushed in a wheelchair, or even, gasp!, picking his nose in a baptism class, instead of snide remarks or rolled eyes, why don't you offer to help? You could try to distract the child, hold open a door, or offer a tissue.
3. Be willing to discipline bad behavior. If you do find out or witness your child being unkind, please, please, please do not let it go. Act on it immediately, and use it as a teaching opportunity for future behavior.
4. Help your child see beyond the bully. If your child comes home and is sad because someone has been cruel to him or her, sympathize and comfort him or her. Also-try to get the child to see beyond that cruel person. For over a week, I let the anger I had for one woman's actions blind me from the fact that there was a room full of people who were being kind.
Will these requests cure bullying? I know they won't. However, I do believe they can help. We are all in this together, and truly, although it's cliche', it takes a village.
Have a great school year!
I have always processed my life events and feelings through my writing. I have always been extremely open about myself. Some call it oversharing, but I genuinely feel like it is my life’s purpose to help other people. If my writing or speaking can make a difference in someone’s life, I feel as though I have achieved what God has put me on earth to do. So, once again, I’m going to open up about a very real, very personal situation that I am trying to deal with.
I want a baby. There! I have said it! There’s the big secret that’s not at all a secret if you spend any time with me at all. I am not, at all, unlike the millions of other women around the world who feel this same desire. I know that. I’m struggling with the fact that it probably, most likely, almost definitely will not happen for me. Again, this does not make me different from a world full of women in my same shoes.
Do you believe in signs? Some call them God Winks. Some call them coincidence. Some call them nothing at all and think it’s preposterous. Well, I do believe in signs, and every sign tells me to give up this hope and desire.
But I can’t. I can’t. I can’t. I can’t. I can’t. I wish I could, but I cannot.
I have three beautiful children. I adore them and would give my last breath and then some to make them happy, to keep them safe, and to ensure they always know how much they are loved. I love them more than I could ever express. Please, believe that. This desire has nothing to do with them.
What does it have to do with? I don’t know. Biology, maybe? A dear friend was at my house about six or seven months ago, and I told her my desire. I said I felt selfish to feel this way, and she stopped me, mid-sentence, and told me that was ridiculous. It is in our DNA, in our human/animal nature to reproduce. So, now, that is my defense I use. Who knows though?
Why can’t I have a child? Let’s go through a list, shall we?
1. I’m not married. When I said this to my co-workers the other day, they looked at me as if I was insane. I have three children, after all! I adopted them, on my own, when I was not married. They couldn’t see the difference and laughed a bit. To me, it is completely different though. I’m not visiting a sperm bank, and I have not been in a relationship that led to that. So, for this, for me, marriage would be ideal.
2. My boyfriend is not interested in having more children. As we have been together for almost three years now, and the children and I are pretty fond of having him around, it is a very significant issue. Having three special needs children takes a significant amount of work—all children do, of course. However, the amount of specialists, appointments, meetings, day-to-day struggles we face are more challenging than those for typical children are. He feels like having a baby is more work than he/we can handle.
3. My biology. You would not believe the number of times I have been asked, when people learn that my children are adopted (usually with a lowered tone and a sympathetic facial expression), “Are you unable to have your own children?” The question always offends me. It implies that my children are consolation prizes to faulty reproductive organs! They are not! My reproductive organs are fully capable of every process necessary to create and nurture a new life.
That being said, I will be 35 in two months, and my sister reminds me of the various risk factors that increase if I were to become pregnant with each passing day. Here I am bragging about how functional my uterus is, but the truth is that some problems have arisen over the last year and a half that have led to repeated discussions about the possibility of a hysterectomy sooner than I ever dreamed of being possible. I will spare you from the details, but they are not issues that would prevent me from becoming pregnant, and every time a doctor brings it up, I immediately start bawling at the thought that, truly, pregnancy may not happen for me.
There are probably more than these three issues, but these are the biggies. Why don’t they convince me to give up this silly desire? I wish I knew. I wish they would. They don’t.
I’m a fairly intelligent person. I skipped second grade, after all! I was in the gifted and talented program. I graduated from TCU with two bachelor’s degrees. I taught for over ten years. I am working on having my second book published. These are not accomplishments made by someone without a brain. So, why is it so hard for me to realize just how blessed I am with what I have and quit crying over an empty womb?
My life is hectic, stressful, challenging, and unique. Logically, I should know that it would be insane to bring a new baby into this household. The man who loves my children and me and who literally does everything for us does not want another baby. Logically, I should understand his many arguments and reasoning about it and agree with him. My doctors are suggesting a hysterectomy to relieve some truly awful problems I’ve had. Logically, I should welcome that relief. Logic, logic, logic! Ugh!
I asked if you believe in signs. You see, I’ve been wondering if my recent medical woes are truly a sign that I am not supposed to get pregnant. Is the option, possibly, being removed for me to give me peace about this? I imagine some readers are rolling their eyes reading that! It is, however, a question I am asking myself.
I had another “here’s your sign!” moment the other day. At work, I have the fortune of being about eight feet from a restroom. It has its perks. Often, someone will come into my hall to use the restroom, and it’s already occupied. It is very common, therefore, to have someone plop down in my office to chat while he or she waits. This happened a few days ago, and in the conversation, my situation came up. My co-worker said, “Perhaps, this is happening for a reason. Perhaps you are, instead of touching that one life, going to touch thousands of lives. Perhaps, your writing and speaking will allow you to inspire and make a difference for so many more people. Perhaps you will foster and adopt other children. Perhaps sharing this struggle is one more way to reach other people who need you.”
Perhaps she is right. Perhaps her words were yet another sign that I need to let this go. I’m not there yet, but I’m trying.
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.
We've had a pretty awesome week around here! Sure, there's been some rough spots, but today, I'm going to focus on our successes!
Let's start with "Project Bring Troy Back to the Joy of Reading." I had an "a-ha" moment at the beginning of the week, and I think it has made a huge difference. Troy has a very difficult time with auditory processing. The standardized testing he has undergone over the last several years always highlights this. When we give him verbal directions at home, he always struggles with them, especially if they are more than one-step. I felt like a fool when I thought about how that is hampering him during our family story time.
We frequently have story-time. We all pile on a bed, gather around, and read. It was frustrating me that when we did it, it always seemed like Troy wasn't paying attention. When I would try to engage him in a discussion about the reading, he could not. Cue "Brandie's a-ha moment." I began to think about the fact that Troy doesn't process auditory information. I brainstormed a solution...have Troy sit or lay beside me as I read so that he can see the words and read along with me.
I started the plan on Tuesday night with a new book, Mr. Popper's Penguins. He prefers non-fiction books, but I decided to see if he might engage with the story when presented in this manner. It worked! We read two to four chapters for four nights in a row, and he loved every minute. He even discussed it with me without prompting. He would brainstorm what might happen next before we even would start to read, and after we would finish, he'd close his eyes and say things like, "I'm imagining what it would be like if I had a pet penguin." This mom/English teacher's heart felt like it would burst with excitement!
I came home a bit early from work Friday with a horrendous headache that had lasted two days. I took some medicine and went to bed for a bit. I still insisted on us reading together that night anyway. I'm so glad that I did. We had another fabulous time.
Here are a few pics from Friday evening's story time:
On to Laura.....Laura has a serious behavior disorder, is extremely oppositional/defiant, and has severe ADHD. She struggles at home and at school, and we are constantly searching for ways to help her to be successful. A couple of weeks ago, I came up with a new idea. She wants her ears pierced. So, I created a sticker chart to motivate her. The rules were that she had to receive a good report from school for twenty straight school days. If she could do that, I would take her to get her ears pierced. She quickly and excitedly agreed to the challenge.
Unbeknownst to her, I actually printed five copies of this chart. I predicted that we would have to start again a few times. Well, guess who may end up with egg on her face?! Yep, me!
As of Friday, she's had 14 days in a row of good behavior!
Laura's teacher and I had had some e-mail correspondence this week related to some other matters, and I asked her about behavior issues. She said that Laura's been quite good. She has been able to remind Laura of the sticker chart when she is not complying, and Laura gets back on track. How awesome is that?!
My little Koby has also had a HUGE success this week! He came home from school with a piece of paper that had his name written on it. Near the name was a teacher's handwriting that said "No assistance." I literally squealed with excitement! My Koby wrote his name! I saw that the teacher had created some boxes to guide him as he wrote each letter. So, on the same piece of paper, I copied those boxes and asked him if he could do the same for me. He agreed, and then he did it! I truly had feared that day would never come. I am so very proud of him!
Now, the next step is for him to know that that is his name. He can identify the letters, but I don't think that he understands that those letters represent his name. Baby steps! For now, I'm celebrating the heck out of those gorgeous four letters!
In the day-to-day routines, it is easy to dwell on the struggles and failures. Trust me--I'm quite good at it. It's important to also celebrate the wonderful successes and happy moments. I feel so blessed that my three children had such wonderful moments this week! I hope you and yours had some, too!
Have a fabulous week!