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.
Tomorrow is the first day of school. Parents around the country are jumping for joy, and truly, on this day, teachers and schools are probably given the appreciation they deserve. Some parents, however, worry about and dread this day. Will their child be bullied? Who will keep him or her safe? What can be done to protect their child?
If I had the answer, I'd be a famous lecturer or best-selling author, traveling world-wide. I don't. I'm just a mom. However, after reflecting on two events that have occurred in the last week, I've come up with some ideas that I think could help.
Troy is going to be baptized soon. In order to schedule the date, he and I had to attend a class together at the church. They needed to make sure that he understood what the act meant and that he was truly ready.
[Side note: If you are new here, Troy has a variety of special needs. The most notable are autism and ADHD. He does not wear a t-shirt announcing this, and I do not make it a habit of announcing it everywhere we go.]
There was a table that the children were directed to sit around. The parents sat in chairs, circling the table, so we could all listen in to the conversation. There were two adult leaders, and they took turns talking to the children about Jesus, the reason for baptism, and what would happen when they were baptized.
There were probably about twelve or thirteen children there. Troy stood out from every other child there. First, he couldn't sit still. He fidgeted and twisted around in his chair constantly. He also would play with his hands and raise his arms into the air wildly. He seemed like he was paying zero attention. Then, he began to pick his nose. Over and over again.
I was not sitting near him. There were about three parents closer to him than I. I considered getting up and walking over to him to try to get him to stop, but I feared that it would have disrupted the serious conversation at the table. So, I didn't.
However, as I watched him, I couldn't help but notice other parents watch him, too. One mother, in particular, did not even attempt to hide her disgust. She could not take her eyes off of my son. She sat up really tall in her chair, her mouth was pursed, and her eyebrows were raised. She twisted, uncomfortably, in her seat. I kept watching her, hoping she would look at me so I could give her a smile or a nod. She never did. My son had her transfixed. She would turn her attention to her child for a moment, but then, the judgmental body language began again.
You have no idea the relief I had when the table discussion ended, and we were charged with a parent/child assignment. I sanitized Troy's hands and had a quiet discussion with him about not picking his nose. He told me that he just couldn't help it. I explained that it is gross and not polite and that he has to try not to do it. Then, we did our assignment.
As we drove home, I asked him a few questions about the things that had been discussed in the class. He was able to answer every single one. EVERY single one! When I was sure he wasn't paying attention, I was wrong.
Anyway, I was fuming about that woman and the way she had looked at my son. Really, really fuming. I told my family about it. I told my co-workers about it. I was so hurt and angry. I realize that this is not very mature, but I'm being honest. I was judging her for judging my son.
Days passed, and the fuming lessened. It's been in the back of my head, and I've planned about three different blog posts in my head about it over the past week, but as things do, it has sort of faded.
Today, it reentered my mind.
After church, we went to a shoe store for back-to-school shoes. Laura was sitting on the floor, shoes all around her, and a mother and her adorable daughter walked in. They came toward us. The girl was around five-years-old and was disabled. She wore braces on both feet, she was grinding her teeth, and she waved her rubber toy wildly. The mom and I exchanged some pleasantries and small talk about school shoes shopping, and her daughter stood to the side, occupied with her toy. Evidently, the mother decided to try another size, and she walked to the next aisle, about three feet away.
After they walked away, Laura looked at me with a disgusted look and said, "What a silly child!" It was not the fun sort of silly that she meant--she meant it as a very negative thing. I shot her the mom-look. You know the one. It must have been pretty intense because she immediately apologized.
I did not lecture her there in the shoe store because I was hoping and praying that the mother and child did not hear her comment. I did not want to call attention to it and possibly upset them. I saved the lecturing for the car. Trust me--she got a lecture. I hope that she will be more sensitive and polite in the future.
What do these two events have in common? And what on earth do they have to do with bullying?
The adults are the common link in the stories. Do you remember how many children I said were at the baptism meeting? About a dozen. All were there with parents. How many parents showed absolute horror over my son's behavior? ONE. The adults sitting with him at the table didn't bat an eye. 99% of the parents in the room didn't act like they wanted to vomit. And guess how many of the children were mean to him or stared at him. Zero. Not one single child at that table, not even the ones sitting right next to him, paid him any attention.
When I thought about that today, thought about the fact that I was focusing on one person's actions and ignoring the fact that the rest of the room was treating him as he deserved--I felt a bit silly to tell you the truth. However, it also really drove home the power just one cruel person can have.
Today, in the shoe store, when my daughter was insensitive to a child with special needs, I addressed it with her. No, I can't promise you that she will never make a flippant remark again, but I can promise that I will continue to work to make her understand how wrong it is to treat others like that.
Bullying is a difficult issue. Troy was not bullied the other day, and the little girl in the store was not bullied today. They were not treated with respect and understanding though, and I think that those are the underlying issues when it comes to bullying.
Teachers and staff at schools care for students, and they do everything in their power to keep every single student safe. However, they can't do it all.
So, I have four requests for you:
1. Talk to the kids in your life. Explain to them the importance of treating other people with kindness and compassion. Encourage them to speak up for those who are unable to stick up for themselves. Ask them not to bully.
2. Model appropriate behavior. When you witness a child in the middle of a meltdown, being pushed in a wheelchair, or even, gasp!, picking his nose in a baptism class, instead of snide remarks or rolled eyes, why don't you offer to help? You could try to distract the child, hold open a door, or offer a tissue.
3. Be willing to discipline bad behavior. If you do find out or witness your child being unkind, please, please, please do not let it go. Act on it immediately, and use it as a teaching opportunity for future behavior.
4. Help your child see beyond the bully. If your child comes home and is sad because someone has been cruel to him or her, sympathize and comfort him or her. Also-try to get the child to see beyond that cruel person. For over a week, I let the anger I had for one woman's actions blind me from the fact that there was a room full of people who were being kind.
Will these requests cure bullying? I know they won't. However, I do believe they can help. We are all in this together, and truly, although it's cliche', it takes a village.
Have a great school year!
I was doing so well with regular updates here! And then....I stopped. I will get back into writing regularly again! If I publicly commit like that, I have to do it, right?
I thought I'd write about Laura again today. Some of you are aware that in an attempt to motivate her to make good choices at school, I set a very high bar for her...if she could have 20 days in a row of good behavior at school, she would get her ears pierced. We got very close our first go around. If I remember correctly, I think she had 14 good days in a row! And then, she stopped.
So we began again. And again. And again. And again.
She started to get bad reports every day. In addition to bad behavior, though, she also was not doing her schoolwork. Previously, her academics really had not been negatively impacted. Sure, she might have to do her work in another room with an aide, but the work was done. That was not happening anymore.
We went to Open House last week at school. When her teacher saw us, she said, "I'm sorry I didn't have the chance to call you today." I replied, "It was that bad today?" Apparently, yes, it was. Her teacher told us that she has been completely unable to focus, has been incredibly hyperactive, swings her arms wildly, can't stand in line, plays in the sink's water (even rubbing the water all over her face), she jumps and twirls, the list went on and on. Her teacher expressed great concern that she was now struggling academically.
At home, we have also noticed some changes. Laura has always walked high on her tippy-toes, but it has changed. She now prefers to walk on the knuckles of her toes. It looks incredibly painful, but this is her preferred method of transportation. She shows zero signs of discomfort and struggles to stop herself from doing it when we tell her to stop.
She also makes strange noises with her throat and sinuses. She suffers from severe acid reflux and has her entire life. I know what that looks and sounds like. This is different. We've also had some issues with a throat clearing vocal tic from ADHD meds. Again, this is something different.
She bites her fingernails to nubs, picks and peels her toenails off, and refuses to let scabs heal. Here is a recent example of a scab that she has had for probably five months now. Warning: It's not pretty!
The scab itself is small--most of what you see here is dried, smeared blood. This was right before her bath one evening.
Her teacher has spoken to us about her scab picking before. She says that she tries to limit her to one band-aid a day, but then she ends up covered in blood, like this. We have seemed to find a way to help though--finally! Tom has been putting liquid bandage on it. It stings, and she doesn't like it. It's still not healed, but it's finally looking better.
The way she was walking was so worrisome to me. I assumed it was a sensory-seeking behavior. She has always been fearless, impulsive, and constantly craving stimulation of some kind. I feared that she would now cause serious damage. I spoke to an OT (Occupational Therapist) while at Koby's ARD meeting, and she told me that she definitely would cause serious damage.
I called our therapy company and requested an OT evaluation. It was conducted last week, and she will begin services in about two weeks. She plans to work on her fine motor skills and self-regulation skills. She may teach her how to brush herself. I'm eager for therapy to begin and am very hopeful it will help. She believes the noises she is making are another sensory seeking behavior--she suggested it could be a physical or auditory experience that she is getting from it.
In the meantime, Laura has a psychiatrist appointment in two days. The major shift in her behavior came and continued after her last medication change. We are constantly trying to find the just-right formula for her. We are definitely not there. We are always trying to avoid the vocal tic from returning, but at this point, I'm wondering if the vocal tic may be something we have to accept if the medication is helping her to have better control of herself. We will discuss possible medication changes at the appointment.
In addition, we are in the process of moving her out of play therapy and into cognitive behavioral therapy every week. It's a gradual process, but we are now having her in a weekly, one-on-one session. Before, she and Troy had joint or shortened bi-weekly sessions. I'm hoping that this will also help her.
All this to say--my beautiful daughter has some very real challenges. And though I am trying desperately to help her overcome them, some days, some weeks, I wonder if we will. I do know this: I love her far too much to give up. And I know she WILL get those ears pierced one day!
I have a six-year-old, beautiful daughter whom I love immensely. I am extremely proud of her high intelligence, creative spirit, and artistic talent. She has been blessed with many enviable gifts, but she is also mentally ill, and of my three special needs children, by far, the most challenging to raise. Truthfully, I often find myself terrified of what she could be capable of.
My daughter was a drug-exposed baby who was brought to me when she was a day old, and I loved her immediately! She was never an easy baby though. She suffered from severe acid reflux, which caused her to projectile vomit constantly. She struggled with sleep, had some delayed development, and although she was one of the prettiest babies I had ever seen, as she grew, she also became the most difficult to manage.
Of course, I chalked it up to her age. She was just a bit more naughty than most toddlers. I believed/hoped she would grow out of it. Sure, I knew her birth history, but I also felt confident nurture would outweigh nature. I did not have a moment's hesitation in choosing to adopt her and her brother. If I had a crystal ball that could see into the future, I do believe I'd make the same choice. I love her very much.
What I am finding, six years in, is that nature is not a force to be reckoned with. My daughter is mentally ill. Nothing I do will ever be able to change that. Nothing. And some days, on really tough days, that truth is hard to face.
Over the years, she has made momentous progress. She was completely out of control for so long, and now, she is able to function relatively well. I try to remember that when the really bad days come. My friends and family members remind me, too, and that helps.
Still, the fear is there.
I struggle with anxiety. I fully understand that my brain leaps to wild conclusions at times. I use self-talk to calm myself when I believe I'm being ridiculous. I also talk to others about my fears to gauge how realistic my concerns are. When it comes to my daughter, it is not often that I am told I am being ridiculous.
My daughter has, among several other diagnoses, Oppositional Defiant Disorder; she is impulsive, defiant, hyperactive, dishonest, aggressive (both physically and verbally), and lacks empathy and the ability to feel remorse. The school's official label for her: ED (Emotionally Disturbed). I'm not bothered by any of these labels or adjectives because they are our truth.
To illustrate what I'm saying, I'll give you one example from about two months ago. She and her brother were arguing. It appeared to be a very minor squabble. They were in the living room; Tom and I were in the kitchen, a mere eight or ten feet away. We didn't even pause our conversation because they weren't even raising their voices. Suddenly, we heard loud screaming and crying. She had bitten his lip! I'm talking almost all the way through. There was blood everywhere, and his lip was severely swollen. She was so calm and appeared to be genuinely shocked when I sent to her room while we examined him. After making sure he was okay and didn't need to go to the hospital, I went to speak to her. I tried explaining to her how severely she had hurt him, telling her that he would have trouble eating, smiling, brushing his teeth, etc. for quite some time. She had no reaction, no remorse, no concern for her brother at all. Trust me when I say she is very intelligent. It is, most definitely, not a question of IQ.
For weeks after the biting incident, I was afraid to let the children out of my sight. I know parents often joke about there being trouble when the kids go quiet in the other room, but I don't think most feel the terror I did in the aftermath of that evening. Luckily, it was an isolated incident, and things continued to go relatively well for quite some time.
This week, she had a rough day at school, a very rough day. She had to write a letter to the cafeteria workers that the teacher and I both had to sign to apologize for her lunchtime behavior. I also had her write a letter to her teacher to apologize for her classroom behavior. Although we went through each and every bad choice she had made that day (it had gotten so bad that she had to be removed from class), she actually did not believe she had done anything wrong. I truly felt hopeless that night.
Once again, friends and family consoled me and told me to remember her progress. I was encouraged to not give up. And I'm not.
She is worth fighting for.
I got on the phone the next morning with the psychiatrist, and we are going to make some medication changes. She also told me that perhaps it is time to move past play therapy and on to cognitive behavioral therapy. I called the play therapist and asked her to help me with the transition. The problem? They currently have a very long waiting list. I'm waiting for a call back before I start searching elsewhere. I am in constant contact with her teacher. I will call for another ARD (Admission Review Dismissal) meeting if necessary to discuss other classroom accommodations for her, like increased time an aide is in the room with her. We started a new evening routine at home to try to help. And, of course, we began a new sticker chart, too.
I will NOT give up on her.
It's hard though. I have moments of hopelessness and despair. It's very exhausting. And sometimes, although I know people have good intentions, they actually hurt my feelings because it feels as though they don't believe or understand the difficulty of our reality. I have to remind myself that very few people I know have experienced anything like what we live all day, every day in this house. Of course, they are doing their best to try to help me through tough moments. Sometimes, though, I think a sympathetic, willing ear is what would be best.
You see, the reality is that no matter the quality of the therapy she has, the number of medications she takes, the strictness of the routines we follow, the number of specialists she has, the support systems in place, the positive reinforcement methods we try, the books we read, the lectures we deliver, the discipline we give, the doctors we visit, the prayers we say, the love we show...she remains mentally ill. We have no idea what the future holds for her. That is a truth that is sometimes difficult to accept.
I'm not looking for advice, though if you want to offer some, of course, I appreciate it! This is just what's on my heart right now, and I felt the need to write about it. If you're in a similar situation, take solace in the fact that you are not alone. Too often mental illness is brushed under the carpet, which can make reaching out so much more difficult.
I also ask that if you are not in a similar situation that you show compassion to parents like me. None of my children look like they are not typical children. If we go to a store, I know that I can look, in the eyes of so many, like a "bad," overly-permissive parent who has no control over her children. If one tantrums on the floor, runs away from me, yells, throws things, or removes a mannequin's arm (don't ask), don't immediately jump on to Facebook to report what a horrible mother I must be who needs to spank my child immediately. Instead, give me an encouraging smile, try to engage my child with a "hello," or say a silent prayer for us. The smallest act of kindness can make all the difference in a moment like that.
We've had a pretty awesome week around here! Sure, there's been some rough spots, but today, I'm going to focus on our successes!
Let's start with "Project Bring Troy Back to the Joy of Reading." I had an "a-ha" moment at the beginning of the week, and I think it has made a huge difference. Troy has a very difficult time with auditory processing. The standardized testing he has undergone over the last several years always highlights this. When we give him verbal directions at home, he always struggles with them, especially if they are more than one-step. I felt like a fool when I thought about how that is hampering him during our family story time.
We frequently have story-time. We all pile on a bed, gather around, and read. It was frustrating me that when we did it, it always seemed like Troy wasn't paying attention. When I would try to engage him in a discussion about the reading, he could not. Cue "Brandie's a-ha moment." I began to think about the fact that Troy doesn't process auditory information. I brainstormed a solution...have Troy sit or lay beside me as I read so that he can see the words and read along with me.
I started the plan on Tuesday night with a new book, Mr. Popper's Penguins. He prefers non-fiction books, but I decided to see if he might engage with the story when presented in this manner. It worked! We read two to four chapters for four nights in a row, and he loved every minute. He even discussed it with me without prompting. He would brainstorm what might happen next before we even would start to read, and after we would finish, he'd close his eyes and say things like, "I'm imagining what it would be like if I had a pet penguin." This mom/English teacher's heart felt like it would burst with excitement!
I came home a bit early from work Friday with a horrendous headache that had lasted two days. I took some medicine and went to bed for a bit. I still insisted on us reading together that night anyway. I'm so glad that I did. We had another fabulous time.
Here are a few pics from Friday evening's story time:
On to Laura.....Laura has a serious behavior disorder, is extremely oppositional/defiant, and has severe ADHD. She struggles at home and at school, and we are constantly searching for ways to help her to be successful. A couple of weeks ago, I came up with a new idea. She wants her ears pierced. So, I created a sticker chart to motivate her. The rules were that she had to receive a good report from school for twenty straight school days. If she could do that, I would take her to get her ears pierced. She quickly and excitedly agreed to the challenge.
Unbeknownst to her, I actually printed five copies of this chart. I predicted that we would have to start again a few times. Well, guess who may end up with egg on her face?! Yep, me!
As of Friday, she's had 14 days in a row of good behavior!
Laura's teacher and I had had some e-mail correspondence this week related to some other matters, and I asked her about behavior issues. She said that Laura's been quite good. She has been able to remind Laura of the sticker chart when she is not complying, and Laura gets back on track. How awesome is that?!
My little Koby has also had a HUGE success this week! He came home from school with a piece of paper that had his name written on it. Near the name was a teacher's handwriting that said "No assistance." I literally squealed with excitement! My Koby wrote his name! I saw that the teacher had created some boxes to guide him as he wrote each letter. So, on the same piece of paper, I copied those boxes and asked him if he could do the same for me. He agreed, and then he did it! I truly had feared that day would never come. I am so very proud of him!
Now, the next step is for him to know that that is his name. He can identify the letters, but I don't think that he understands that those letters represent his name. Baby steps! For now, I'm celebrating the heck out of those gorgeous four letters!
In the day-to-day routines, it is easy to dwell on the struggles and failures. Trust me--I'm quite good at it. It's important to also celebrate the wonderful successes and happy moments. I feel so blessed that my three children had such wonderful moments this week! I hope you and yours had some, too!
Have a fabulous week!