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.
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.
In all of my years sharing my life here and on my various social media sites, I have never lived through and shared an event that generated so much interest, so much outrage, and so much support for my family--until this bizarre story of how our dog was stolen and, miraculously, returned. The fact that so many people were so amazed and invested in it only proves how unbelievable it is. Yet every word I'm about to type is the truth.
It's complicated; all day long, I've tried to figure out a way to tell the details without boring you with minutia. However, if you know me at all, you're probably used to me including useless details in everything I discuss or write about. So....my plan is to just to start at the beginning and tell you it all. Feel free to skim to the end if you know the first part. (I'll never know.)
As I got into my car last night to leave work, my boyfriend called and said, "Henri is gone. He got out through the garage door when we got home. We ran out to get him. Troy had him for a second, but he got loose and bolted again. We quickly grabbed the leash and ran back outside, and he was gone. Brandie, it was less than 30 seconds. He completely disappeared." He said that after calling his name and walking around a bit, he decided to drive around to look for him. They drove up and down the neighborhood streets for thirty minutes. No sight of him at all. This happened around 5:00.
Henri hasn't been with us very long, just a couple of months. I'm a horrible slacker, and although I did get him a new tag engraved, I never put it on him. (I did attempt once, but he wouldn't sit still and the key ring almost broke my nail, so I set it aside to have Tom do it for me, and I didn't follow through.) He still had his old tag on him with my friend's phone number. I immediately contacted her and let her know he had escaped, apologized for my slacking, and asked her to help connect the sure-to-be-coming Good Samaritan to me when he or she called. I also got on my Nextdoor app on my phone and posted a message, asking that if anyone found or saw him, to please let me know.
In the meantime, Tom and the kids drove around again before, eventually, giving up. When I arrived in the neighborhood after work and errands, I didn't go home. I slowly started driving the streets. As I drove, I got a Facebook message from my friend.
She said that a woman had called her to say that she had the dog. This was around 7:45. My friend gave me the woman's name and phone number. I called her less than 30 seconds later. It rang and rang and rang and rang. There was no answer and no ability to leave a message. I attributed it to network error. I tried again. Same thing. I tried again, and it rang a couple of times but then gave me a busy signal. Network error, again, I assumed. I tried again. Busy signal.
I had been sitting in my car in front of a random person's house, making these calls, assuming I'd be given an address to go to. Sadly, I gave up and drove home. I still thought there was some technology error. I asked Tom if I could use his phone. I called the number. It rang and rang and rang and rang. No answer. I tried again--busy signal.
I began to think I had the wrong number. I asked my friend to verify it. She said it was correct. She called it herself to test it out...busy signal.
So, I looked up what that means. I had no idea before last night that a busy signal after a short ring indicated that she had blocked all of our phone numbers.
It sounded so bizarre and implausible though. Why would someone do that? Why would someone reach out to someone about a missing dog and then, seconds later, change his or her mind?! I still don't have a clue. I told my sister. She tried it--rang the first time. Blocked on the second.
I sent her a friendly text message, suggesting that she must be having phone trouble, and asking her to contact me. I have no idea if text messages go through from blocked numbers. No response. My sister, however, had the smart idea of texting her from my brother-in-law's phone, a phone number that hadn't been blocked yet. She pleaded with her to return the dog--she even threw in the fact that the kids have special needs. No response.
I downloaded an app to my phone to do a reverse number look-up. I paid the $3 charge for the name. I called the non-emergency police number. I was afraid I sounded like a paranoid, insane person, but everything in my gut told me that this woman had decided to keep or sell my dog. There was no other explanation. If it had been phone problems, she could have found another phone to call from. She hadn't, and it had been several hours. The phone screener took my name and told me that it would be a while, but a report taker would call me later.
In the meantime, I searched for the name on Facebook. Going on the information I had from the reverse number look up, my location, and the information my friend remembered from the phone call, I found a likely match.
I sent her a message. I received no response. I searched through her Facebook page and figured out who some of her family members were. I sent them messages. I hope you trust me and believe that my messages were friendly, very non-confrontational, and simply requests for help. Nobody responded, and I saw no indication that the messages had even been read.
Eventually, a police report taker called me (probably not their official title). I gave her every single bit of information I knew. She gave me a report number, told me that the detectives really only work Monday through Friday, and they'd give me a call sometime. If I had any additional information to add, I should call back. That was that.
I felt like there was nothing more to do. I texted a friend. She and her husband both have background check apps. They both used them and sent me information for the name and phone number I gave them. They sent me the information. None of it seemed to be the right woman though. (Today, knowing what I know now, I realize that there was one correct piece of information on it.)
I still assumed it had to be the woman on Facebook. With some coaxing, I shared her name, in the hopes that there would be someone with a friend with a mutual friend. No luck.
Eventually, I went to bed. Without Henri.
This morning, I learned that he has a microchip. My friend was able to give me the name of the company who implanted it. I called them and learned that they are only open Monday through Friday. Another closed door.
I shared the woman's name with more people. I asked for help on my author page. And then--my sister received word that she does have a friend who is a mutual friend. The woman swore it was not her. Others vouched that she would never do that. I had no choice but to believe her and try another avenue. It was another dead end.
Then, my friend, the original owner, texted me. She remembered the woman saying that the dog had jumped into her Car Name. Woah! What a clue, right?! So, I placed another call to the non-emergency police line to add it to the report. They put you at the bottom of the call list.
While waiting for the call, the kids and I got dressed, put sunscreen, hats, and sunglasses on, and water bottles in hand, set out for a door-to-door canvassing of the neighborhood. Tom told me to start across the street about three houses down. It was the last place he saw Henri.
So, the kids and I went up to the door and rang the doorbell. There was no answer, but a large dog's bark echoed behind it. I knew it was not Henri's.
We went on to the next house. A man answered. Before I could even say a word, Troy excitedly said, "Have you seen our dog? He's missing!"
I gave a friendly smile and told him that we were, in fact, looking for our dog and were wondering if he had seen a small, friendly, white dog since yesterday evening.
He said, "Yes, as a matter of fact, I did. It was last night around 5:00. My ex-wife was bringing my daughter to me, and the dog was in our yard. He jumped into her car."
My heart started racing! What are the odds? The second house we went to? The first person to open the door?
I knew I needed to walk carefully on the egg shells at my feet. "Is her name ******?" I asked. He was very obviously taken aback. "Well, it was when we were married," he said. He asked how I knew. I explained that I had looked it up.
He told me that he did not want to get involved, that this is his ex-wife. His discomfort was palpable. I smiled the entire time and used an overly friendly, sympathetic tone of voice. I explained that Henri is loved and missed, that he is important to our family, that my kids need him for therapeutic reasons, etc. His daughter stood behind him. I inquired about her, desperate to make him see me not only as a neighbor, but also a loving parent-like him.
He said he would try to call her later and ask her to bring the dog right back. She could bring it right away. I said I'd be so very appreciative of that, but I insisted that he do it right then. I pleaded, pleaded, and then pleaded for his help. He said he wanted to make the call in private. I said, "Oh! I COMPLETELY understand that! Go inside, shut the door, and we'll just hang out here. We're in absolutely no rush!" He realized I was not giving up, and he closed the door.
A few moments later, he returned and said that she had not answered. He said he would send her a message. I asked for his name and phone number. He gave them both. I told him that I had found a woman on Facebook who claimed she was not the woman in question. I asked him to look at my phone to see if it was his ex-wife. He reluctantly took it, but he said he couldn't see well. By asking him several follow-up questions, I believed that the woman on Facebook was, in fact, innocent.
When I pressed even further for more information, he stopped me and said, "It's obvious you've done your homework." I smiled and said, "I have. This is our dog, and I want him back."
I thanked him profusely, and we went home. We never even needed to take a sip of those water bottles.
Moments after returning home, I received a phone call from an unfamiliar number. Of course, I assumed it was the woman! It was not, but it was someone even better: a person skilled in getting information that could help me. This individual was able to provide me much better information than I had before. I got the woman's new name and information on where she could be found.
I called the non-emergency police again-to give them some of the new information, the ex-husband's name, and his phone number-and was sure to say that he told me that she had the dog.
Next, I grabbed the kids, and I went right back across the street. I told him that I wanted to verify that the phone number I had for him was correct. I said, "Earlier, when we spoke, you mentioned that you could have her bring the dog here right away. Am I right to assume that means she lives very, very close to here? Maybe even within a minute or two?" He was very uncomfortable and said he didn't want to start trouble. I said, repeatedly, "I understand your position and situation. I am not looking for trouble. I'm not even interested in meeting or confronting her. That is not the person I am. I just want our dog back. You have the ability to help, and I am so very grateful to you for anything you can do to help us."
He said that he would keep trying to contact her. He also said that he was willing to speak to the police if necessary to tell them the information they needed. Again, I thanked him. At one point, though, I said, "Oh, is your ex-wife's new last name *****?" His eyes about popped out of his head. He said, "Really, there's no need to even talk to me. It is clear that you know everything and have very good sources."
We went home.
And, very quickly, I received a call from a blocked number. When I answered, the woman introduced herself--she was the ex-wife.
You have no idea the passive aggressive, over the top friendly I was to the woman--at first. But her story became ridiculous, and it was obvious that every single thing she said was a lie.
Woman: I understand you tried to call me. My phone is messed up. I didn't get your calls.
Me: Really? That's awful! I know how frustrating technology can be.
Woman: Yes. It's still messed up. That's why I'm calling you from my husband's phone. Your dog jumped into my car, but I don't have him anymore.
Me: Oh, no! Where is he?
Woman: I don't know. He jumped out of my car.
Me: He jumped OUT of your car?! Where?
Woman: The store.
Me: What store?
Me: Which 7-11?
Woman: The one on the corner of X and Y streets.
Me: Hmmmm....what time?
Woman: Last night.
Me: What time? I know they have security cameras. I can ask them to review them, and we can find out if he jumped into another car or ran off. If he ran, I can narrow down which neighborhood to search in.
Woman: It was late. Like after midnight.
Me: So--you're telling me that you had my dog for six or seven hours?
Woman: Yes. I wasn't trying to keep him. I tried to call.
Me: You had him for six or seven hours, never tried to call me from another phone, put him back into your car after midnight to take him to 7-11, and he jumped out?
Me: Wow! Okay! Thank you SO much for your call! I'll go ahead and call to update the police report with the new information.
I hung up, shaking in anger at the lies she told--but also, again, feeling like I was at a dead end. She knew that she had been found out. Who knew what her next move would be?
Just a few minutes later, I received a text message and a phone call! A Good Samaritan (Really! A good one this time!) called the number on the tag. Henri had approached his family as they were loading themselves into a van to leave.
Guess where he lives! The exact same apartment complex as her! My theory: That vile woman knew she was caught, opened the door, and let him run!
Thank God he wasn't hit by a car or something!
Literally, two minutes later--just two minutes later--I had Henri in my arms and peace of mind that he was safe.
His new tag with my phone number is on him. (Sorry I'm a slacker, Amanda!) Monday, I will call the microchip company to make sure that his registration is corrected as well.
What makes the story so bizarre is that had she never made that initial call, he would not be here right now. It makes no sense to me, but it got the ball rolling. Had her ex-husband not admitted to me that he knew she had the dog, the ball would, most likely, not continued to roll. And had I not received the anonymous help I did, I wouldn't have been able to, with a friendly smile on my face, convince my neighbor to convince her to do the right thing (sort of).
And that is the stranger than fiction story of how Henri came home.
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!
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!