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.
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.