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.
I have started and stopped this blog entry about six times over the last week. I know that what I write may upset people, and fear of ridicule and judgment has plagued me with an inability to finish writing this. However, I promised to be more open
on this blog, so I'm going for it. I devote my first 2014 entry to the topic of medication. It is a topic that ruffles feathers and causes people to judge and condemn on either side of the issue. My children take medications and are under the care of very skilled and caring psychiatrists at a local children's hospital. I did not make the decision to medicate them lightly. I do not keep them on medication without great thought. I trust my instincts. I trust their doctors. I do what I feel is best for my children. I am a member of a Facebook autism group. I won't name it specifically. I am seriously considering leaving it though. The judgment and vitriol is ridiculous. Instead of a place where parents can go for help and support, it seems to be a place for other parents to bash, criticize, and judge. The other day, they posted an article from several years ago about a little boy who had been given psychiatric medications and then committed suicide. He was very young, seven, I believe. It is sad, of course. However, the comments that people wrote were horribly insensitive and judgmental to any parent who has decided that medication is the best choice for his or her child. Flippant remarks insinuated that parents medicate their kids because they are lazy and they don't want to deal with challenging behaviors. There was a lot of soap boxing going on from people acting as if parents who choose to medicate their children are not good parents. It was disgusting. Are these news stories important? Of course! Is discussion worthwhile? Without a doubt. However, it is also important for parents who are faced with the decision of whether or not to give medications to their children to not be ridiculed and looked down upon. Should medication be the first option? Not in my opinion. If and when the time comes, and all parties involved decide the pros outweigh the cons, people outside of the situation need to have a bit more compassion and understanding.
Two of my children suffer from intense insomnia. Troy, who is now seven, would, as a toddler, stay up all night, every night and would scream and scream and scream. It was unbearable. Nothing I did worked. I was up all night with him every night and trying to maintain a full-time job and care for three babies at the same time. I was miserable. My mother came to stay, sure she could help. She quickly saw the problem was serious. Melatonin didn't work. Every single bit of advice I came by was tried and failed. It was awful. If he did go to sleep, it was short lived. He'd quickly awake and would scream some more. It was not night terrors. It was much, much worse. He had a sleep study. The report said: "Insomnia due to mental illness." And so, he was given Clonidine. And he slept! He was, soon after, diagnosed with a mood disorder and anxiety and was prescribed Risperdal and Zoloft. These drugs, especially the Risperdal, completely transformed him! I will never forget the feeling of gratitude I had as I saw how much Risperdal helped my son function. I called it liquid gold! Years later, he was diagnosed with ADHD and was prescribed Intuniv and Metadate. He was better able to follow directions and focus in school. That's a lot of medication for a little body! Do not ever think that I don't know that. Don't ever, not even for a moment, think that I don't know about possible side effects and that I don't constantly weigh the pros and cons of every thing I give him. The doctors we see are incredibly conservative in the dosages they prescribe. Our appointments are lengthy (45 minutes minimum per child) and decisions are made after thoughtful deliberation. These medications are allowing him to function in ways that he would not otherwise be able to. They give him the best opportunity for success. We do not, as I've seen many critics suggest, rely on medication only. Our house is run on a strict routine, and he has consistency in every aspect of his life. He goes to play therapy and is seeing a special education counselor. A behavior specialist is involved at school. He has an IEP at school, and an aide works with him in the classroom. In the past, MHMR worked with him at home and school. Medication is one component of his care, but not the only one. Koby, for a time, also suffered from insomnia that melatonin could not touch. The psychiatrist put him on Clonidine as well. It seemed to affect him much more profoundly than Troy. When it came time to refill the prescription, I had a hard time getting in touch with the pediatrician. During the two or three day period, I gave him melatonin only, and he slept fine. So, guess what I did...I took him off of the Clonidine! He has been off of it for over two years. I am not looking to medicate my children. That being said, Koby has had many problems with his behavior. Inability to communicate for so long led to him having meltdowns constantly. We dealt with it though. He's always been so petite and (seemingly) fragile. I didn't want to medicate him at all. When he started to talk over a year ago, the meltdowns decreased. Aggression really began though. When he started kindergarten, he began having several hour-long meltdowns a day. He was destroying his classroom. He attacked the other children, the teacher, and the aides. Every single day. He drew blood from another child. Every attempt his skilled and experienced teacher made to diminish the trouble behavior failed. He is in a structured, self-contained classroom with only about six students, a teacher, and three aides. Yet, he still could not be controlled. Several behavior specialists were brought in to assess the situation and offer ideas. Every attempt that was made to improve the predicament failed. Finally, I had to make the decision that I needed to consult a doctor. As a mother, I would not like to send my children to school, knowing that another child was attacking him or her. I felt a responsibility to those other children to act. So, the psychiatrist decided to start him on Abilify. She put him on the smallest dose. We began it on the weekend, and at the end of day one, we saw a huge improvement in his behavior and demeanor at home,-but he also seemed a bit too sedate. So we cut the smallest dose in half. And guess what! It has been a miracle worker! He has not had a single aggressive episode at school, has followed his work schedule there and been more willing to comply, he is much less likely to be agitated, and (I don't know how this is connected, but I swear it is) he suddenly, overnight, was potty trained! Laura's medications have been just as necessary and just as positively life-changing. Hers are still in a state of flux because her behaviors are much, much more challenging than her brothers'. I'm sure I'll write more about her in the future. All I ask is that if you are a parent who has decided that come hell or high water you are NOT going to medicate your child, and you meet someone who has decided that medication is necessary for his or her child, do not vilify that parent. If you are a parent who DOES medicate your child, and another parent with a child like yours has decided not to use medication, be understanding! Every parent knows that raising children is difficult. Constantly questioning whether you're doing the right thing is part of what you sign up for when you take on the role. So, as fellow parents, heck, as fellow-human beings, we owe it to one another to be a bit more understanding and supportive of the tough decisions that are made in the attempt to give our children the best chance at success they can get.
I don't make New Year's resolutions. I know I'll never keep them, so I usually skip that tradition. This year, however, is different! I have made a New Year's resolution--and made it six days early! My resolution is to update my blog more frequently and to do so more authentically.
As you are probably aware, I have published a children's book about autism. I have only written a handful of posts, and they have centered around autism. It made sense to me to write about autism on this blog. The truth is that, of course, autism causes challenges in this household, but mental illness causes many more.
A friend at work remarked to me the other day (he didn't know about my blog) that I should write about my life. He said, "It could be really therapeutic for you, and it could help other people at the same time." While I agreed with him on both points, I really felt that this page should deal with autism only. The conversation has popped up in my head repeatedly though.
Then, a family member who has a child with issues very similar to my own daughter's wrote a post on Facebook, detailing her frustration at some recent behavior struggles. Friends and family members quickly responded--and the comments were, in my opinion, without compassion or understanding. My family member was told that her daughter would grow out of it, was just doing it for attention, that she needs a good paddling, etc. I was horrified. Now, I know that they meant well, but it was clear that they did not understand the context of her post.
This situation gave me the push I needed for this decision to write more. You see, autism is gaining more acceptance in our society. Mental illness is not.
It is my sincere hope that by sharing my journey, I can help other people dealing with similar circumstances feel less alone. It is also my sincere hope that people not dealing with similar circumstances can learn about what families like mine face and perhaps gain some compassion.
I am not an autism expert; I am not a mental health expert. FAR from it! I am a mom. I screw up every single day. I worry, I cry, and I panic about the future. I will never pretend I have all the answers.
Still, I feel like I need to do this. I pray that it will make a difference in the life of at least one person. This is a resolution I plan on keeping! Happy New Year!