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.
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.