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.
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.
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.
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!
Many years ago, when I was young and had no real responsibilities, I had quite the social life. Dinners, parties, shopping, and hanging out filled the hours when I wasn't working, sleeping, or studying. Yes, I'm talking about college.
Then, I became a high school English teacher. My free time was consumed with grading essays and working a second job to make ends meet. I barely had energy to pop a bag of popcorn for dinner, let alone reach out to my friends. On occasion, I did hang out with fellow teachers for a night of dinner and drinks. Those nights were few and far between, but when we had them, I loved spending time with people who totally got what I was going through.
Somewhere along the way, I got the crazy idea to become a foster parent. On my own. While teaching. And not just for one or two children at a time, but up to four. My house was a wreck. I was a wreck. And there was no time for socializing.
Then, I decided to adopt three children! On my own. And continue to teach. And grade papers every night. Oh, and did I mention, the kids all have special needs?
Things were tough. My life spiraled out of control, and I entered a deep depression. I was definitely not looking to spend time with anyone.
But things got better. I got better. With the help of loving, knowledgeable professionals, my kids have gotten better. I left teaching for a job that is better suited for my very unique life circumstances.
But still, something has been missing: Socialization.
With the challenges I brought on myself: a demanding job, the responsibility of taking on fostering and adopting on my own, the stress of having special needs children, I pulled away from friends. Not intentionally! It just happened. I neglected to make time for myself and to nurture those friendships.
It did not make the hard times easier. It made them so much more difficult. I felt so alone.
One of my aunts researched support groups in my area. Did I mention that she lives in another state? She took it upon herself to do what I did not do for myself. She found a support group for parents of special needs children that met once a month and had free childcare. I started going, and I loved it! I was among people who understood my struggles, and I got so much out of the meetings.
For some reason though, I stopped going. I think I may have felt like things were so much better that I didn't really need to get up early on a Saturday morning to attend the meetings.
Facebook has also helped me believe I didn't need to spend time with people in person. No, I don't get to see my friends in person, but we could connect there at least. I can celebrate their happy life events and try to comfort them in their sad times. It also has been instrumental in both giving and receiving support and advice from people who are or who have been where I am. I love Facebook!
Recently, though, I realized that social media is just not enough.
I am a very open person. I share my life with really anyone who will listen. So, at the only real places I socialize with humans face-to-face, work and family functions, everyone knows my business (more than any of them would like, I'm sure!). I have very kind people in my life, and they listen to me whine with patience and are kind enough to give me advice or to let me vent. I appreciate them. They enrich my life and have helped me through some very difficult times.
Still, I'm starting to realize that it's not enough.
I attended a conference recently about living with disabilities. There was not a whole lot of time to socialize, but I loved being in a place filled to the brim with people who can truly understand what it's like to be me. The information I received at the conference was fantastic, but the experience of soaking in the material while sitting with parents who totally relate to me was powerful.
Remember when I said I love Facebook? Here's one example why: Randomly, on a message board for buying and selling, I recently connected with another autism mom. She invited me to join a moms of special needs children's group. They were having an upcoming meeting. So, I agreed to go. I was nervous to go to a place where I knew nobody, but I went! I sat and visited with this amazing group of beautiful, strong women for a couple of hours. We shared our stories, we laughed, tears were shed, and we supported one another. Time flew, and it was time to go home.
The entire way home that night, I felt like I was floating on a cloud! I suddenly realized just how important it is spend time with people who can totally relate to us.
Tonight, at our church life group meeting, we discussed relational health and the importance of spending time with people who will listen to you, accept you, support you, and who you can do the same for. The church life group is one such group for me. They support my spiritual growth, and, hopefully, I also can support theirs. We relate to one another because we're all Christians who want to continue strengthening our relationship with Christ.
On our way home from tonight's meeting, I realized how much I have gotten out of my recent experiences spending time with people who can not just sympathize with me, but who can truly empathize with what I face day-to-day.
Reach out and connect with people! No matter your life circumstances, you are enriched by spending time with people who can relate to and empathize with you. If you like to knit, find a knitting club. If you like to garden find a gardening club. If you're a foster or adoptive parent, reach out to others in your shoes.
If you're a special needs parent, find ways to connect with other special needs parents.
I know it's hard. I know you're tired, and you don't know how you will find the time or energy, but find a way! Well-meaning friends, co-workers, and family members cannot give you the same support as those who are living or who have lived what you are going through.
This is a lesson that has, sadly, taken me over a decade to learn. I still love social media and its ability to bring people together across the miles. Technology can be a beautiful thing, but I'm learning that it cannot be the only way I connect with others. I hope that you, too, will find ways to reach out to those who share your hobbies, passions, or life circumstances. I just know you'll be glad you did!
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 love the movie Willy Wonka & The Chocolate Factory. It is a movie I've seen more times than I can count, and over the course of the last week, I've had the phrase, "Strike that! Reverse it!" replaying in my head, over and over again. If you've forgotten or don't know what I'm referring to, here's one example of its use in the film:
In a moment of frustration last week, I created a rule that my kids had to read to earn video game play time. (If you're interested and didn't read the last blog, click here
.) After spouting out the new house rule, I immediately knew that I should take the words back. I sought feedback from others, and they validated my uneasiness with the rule. Reading should not be a chore. I want my kids to love it, not dread it.
I needed to strike the rule and reverse it! And I did.
Tom and I decided, instead, to greatly restrict the play time. I thought we had been doing well with it, but it was obvious we had not. We did not decide to take the game time completely away during the school week but did leave that option on the table should it become necessary.
I also was very fearful that I had planted a seed in their heads that reading was not enjoyable. I wanted to dig that seed out immediately. So, on Monday evening, I decided to have some mother-son-bonding time with Troy. I decided I'd read to him. I told him to go to his room and bring a book back. He said okay and walked out....and never returned. Fifteen minutes later, I realized I was still waiting. I called his name, and when he entered the room, empty-handed, I asked him what he was doing. He told me watching TV because "books are lame." I almost fell off my bed! He got a lecture from me! I told him that I would not have filled our house with books if I did not feel that they were important. Mostly, though, I told him disobedience was not okay. Further, I told him that I had wanted to read to him.
I was heartbroken. I feared that I had done irreparable damage.
The next morning, the first words out of his mouth after I gave a cheerful "Good morning!" to him were, "I'm sorry about last night, Mom." I told him that it was okay and gave him a hug.
After dinner that night, I asked him if I could read to him, and he gave an overly enthusiastic, "Yes!" and ran to get a book. I knew he was doing it to make me feel good after the previous night's events. He's a very sweet child. Laura joined us, and we read from a book I had given him for Christmas, Different Like Me: My Book of Autism Heroes
On Wednesday night, we did it again. We read about a few more people in the book, and then, we looked them up online. For example, one was a painter, so we looked at some of his paintings. We watched some videos on YouTube. I felt like I needed to tread very lightly because the Troy/Books/Reading relationship was obviously very fragile. I didn't want to force anything.
A friend at work brought a box-full of books to work on Thursday. I took a large chunk of them and brought them home. Laura is currently extremely obsessed with dentistry. One of the books was about teeth and dentists. She was so excited! Koby loves Sponge Bob; about ten of the books were Sponge Bob books! He couldn't decide which one to read first and was angry when Laura dared to touch one! Troy was elated when he found a Sponge Bob book designed for older readers. To see them excited about books again made my heart flutter!
Near bedtime, I decided to ask them to join me for a family read-aloud. However, when I walked into Laura's room, this is the sight that greeted me:
I snapped a picture and quickly backed out of the room!
The work is not done. We spoke to the psychiatrist about the situation at their appointment the other day, and she told us that video games can easily become problematic for all kids, but even more so for kids like Troy.
Still, I believe that the love of reading and books has not left my son. The picture above proves that there is still a spark remaining.
Thank you to those who gave me advice after last week's post. The saying goes that you should always follow your gut. My gut told me I was making a bad parenting choice, but the advice and support I received from so many here on this site and also on Facebook and in personal conversations helped me follow my instincts that I did, indeed, need to strike that and reverse it!
Happy Reading, Everyone!
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.