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!