A family member reached out to me this morning for some advice. She has a daughter very much like my own. She is about five-years-old (still in pre-school) with a mood/behavior disorder and high functioning autism.
Last night, my family member took her daughter to her first soccer practice. Shortly after arriving, she had a melt-down. It was not as severe as some, but she was quite loud, and she did do some flapping. In the midst of this, my family member heard another parent remark, "Oh, we have one of those on our team." You read that right, one of those. My family member did not react to the hateful words, choosing to just get out of there as quickly as possible.
I was livid! And heartbroken for my family members.
I was at work, and so, I shared the story with some of my co-workers as we were leaving for lunch. I was certain they would all be as furious as I.
Some weren't. Some said they would have probably made the same remark. They said they wouldn't just say something like that if a child was having a meltdown though. They would also say it if a child was exhibiting poor skills on the field or didn't want to get dirty. Or any number of reasons. I questioned them, asking, "You would seriously put down a five-year-old in front of the child and/or his or her parent?"
The answer was yes.
I could feel my eyes fill with tears, and I had to stop talking. The subject was changed, and we carried on with our lunch plans.
But I was hurt. And very, very sad.
After lunch, one of my co-workers asked me if I had been upset by their comments, and I, generally very non-confrontational in nature, said, "Yes, very." We discussed the issues a bit more.
I told her that the conversation at lunch had solidified my resolve to keep fighting for awareness and acceptance of children with special needs. She asked, with genuine curiosity, what awareness and acceptance could do for kids like mine. I told her that I am hopeful that these children will be treated with kindness, compassion, patience, and understanding. I told her that children emulate what their parents do and say, and if a parent feels that it is acceptable to say something negative to or about a child that is different than his or her own, his or her child will grow up doing the same thing.
I don't think our conversation changed her mind on the topic. I do appreciate her willingness to listen to me though. I know that she did not want me to be upset; we just have a difference of opinion.
It's funny though...a couple of days ago, I was sent information about the Dallas Stars having a charity night with free tickets for families with special needs children. I told the girl who sent me the information that I was so grateful that awareness of families like mine has led to companies reaching out and offering special opportunities to experience events that they never would have before. And it is true. Movie theaters often hold special viewings for kids with autism or sensory processing disorders. Museums have special events for kids with autism. A local organization held special Santa visits away from the hustle and bustle of the mall this past Christmas. The list goes on and on.
Awareness is spreading. Acceptance though? I think we have a long way to go. And for that reason, for my children, for the millions of special children and families out there, I will not give up.
Today, I learned that I must keep fighting.
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!
I love the movie Willy Wonka & The Chocolate Factory. It is a movie I've seen more times than I can count, and over the course of the last week, I've had the phrase, "Strike that! Reverse it!" replaying in my head, over and over again. If you've forgotten or don't know what I'm referring to, here's one example of its use in the film:
In a moment of frustration last week, I created a rule that my kids had to read to earn video game play time. (If you're interested and didn't read the last blog, click here
.) After spouting out the new house rule, I immediately knew that I should take the words back. I sought feedback from others, and they validated my uneasiness with the rule. Reading should not be a chore. I want my kids to love it, not dread it.
I needed to strike the rule and reverse it! And I did.
Tom and I decided, instead, to greatly restrict the play time. I thought we had been doing well with it, but it was obvious we had not. We did not decide to take the game time completely away during the school week but did leave that option on the table should it become necessary.
I also was very fearful that I had planted a seed in their heads that reading was not enjoyable. I wanted to dig that seed out immediately. So, on Monday evening, I decided to have some mother-son-bonding time with Troy. I decided I'd read to him. I told him to go to his room and bring a book back. He said okay and walked out....and never returned. Fifteen minutes later, I realized I was still waiting. I called his name, and when he entered the room, empty-handed, I asked him what he was doing. He told me watching TV because "books are lame." I almost fell off my bed! He got a lecture from me! I told him that I would not have filled our house with books if I did not feel that they were important. Mostly, though, I told him disobedience was not okay. Further, I told him that I had wanted to read to him.
I was heartbroken. I feared that I had done irreparable damage.
The next morning, the first words out of his mouth after I gave a cheerful "Good morning!" to him were, "I'm sorry about last night, Mom." I told him that it was okay and gave him a hug.
After dinner that night, I asked him if I could read to him, and he gave an overly enthusiastic, "Yes!" and ran to get a book. I knew he was doing it to make me feel good after the previous night's events. He's a very sweet child. Laura joined us, and we read from a book I had given him for Christmas, Different Like Me: My Book of Autism Heroes
On Wednesday night, we did it again. We read about a few more people in the book, and then, we looked them up online. For example, one was a painter, so we looked at some of his paintings. We watched some videos on YouTube. I felt like I needed to tread very lightly because the Troy/Books/Reading relationship was obviously very fragile. I didn't want to force anything.
A friend at work brought a box-full of books to work on Thursday. I took a large chunk of them and brought them home. Laura is currently extremely obsessed with dentistry. One of the books was about teeth and dentists. She was so excited! Koby loves Sponge Bob; about ten of the books were Sponge Bob books! He couldn't decide which one to read first and was angry when Laura dared to touch one! Troy was elated when he found a Sponge Bob book designed for older readers. To see them excited about books again made my heart flutter!
Near bedtime, I decided to ask them to join me for a family read-aloud. However, when I walked into Laura's room, this is the sight that greeted me:
I snapped a picture and quickly backed out of the room!
The work is not done. We spoke to the psychiatrist about the situation at their appointment the other day, and she told us that video games can easily become problematic for all kids, but even more so for kids like Troy.
Still, I believe that the love of reading and books has not left my son. The picture above proves that there is still a spark remaining.
Thank you to those who gave me advice after last week's post. The saying goes that you should always follow your gut. My gut told me I was making a bad parenting choice, but the advice and support I received from so many here on this site and also on Facebook and in personal conversations helped me follow my instincts that I did, indeed, need to strike that and reverse it!
Happy Reading, Everyone!
Troy has an obsessive personality. Autism causes him to focus intensely on his passions. His entire life has been consumed with obsessive preoccupations with dinosaurs, trains, and the solar system. It's been truly amazing to hear him spit out the most random but true facts about any of these topics, and it was a joy to nurture those interests with books, videos, and discussions about them.
A few months ago, however, a new obsession took over his life. He was on a quest to obtain a Nintendo 3DS. It was ALL he seemed to talk about--and to any and everyone he encountered. Well, his doting grandparents made his dream a reality on Christmas morning. Here he is, opening his dream gift:
I was so happy for him at that moment! I had no idea that it would quickly and completely transform him.
We have a wii, and all three kids enjoy playing it. We don't have many games, but it is played often. For Christmas, another set of grandparents gave them each a wii game, which probably doubled our collection of games.
All three kids also have Leap Pad 2s. They received download cards for Christmas, allowing them to add more apps to them.
Suffice to say, my kids, like so many, are plugged in. It had not worried me though because all three love books and reading. They seemed to create a healthy balance on their own. It is very typical to walk into any room of the house and find one or all of the kids with books open. We have books, tons of books, throughout the house, so they are always in view and highly accessible. Troy and Laura are very advanced readers, consistently testing far above grade level. I have been proud of their love of the written word.
Suddenly, however, that changed. For Troy, at least. Over the Christmas break, we allowed him to play video games, really, as often as he wanted. It was his dream come true, after all, and he was on vacation. What was the harm, right? I was so naive.
We often have family movie time. One evening, we decided to watch Despicable Me 2. Koby had received it as a Christmas gift. Troy couldn't focus on it and finally asked if he could leave the room. He wanted to play his game. We let him go.
On another occasion, I overheard him tell Tom that he wanted some "alone time." He said he had spent a lot of time with us already and wanted to stay in his room....to play his game.
Now, I know that much of this is very typical. Video games are highly addictive for many people. However, autism takes that typical preoccupation and addiction and transforms it into an obsession.
We decided to limit the play time--especially when he went back to school. I thought we were doing a good job of it. Homework had to be done before any game time, and the game time was limited.
Then, I found this note in his folder:
I was absolutely floored. He is a sweet boy who is usually a rule follower and hates disappointing authority figures and/or getting in trouble. I told him that this was absolutely unacceptable behavior, and that he is showing us that perhaps he is not mature enough to handle having a 3DS. I warned him that if something like this happens again, he will give the 3DS back to Nana and Grandpa until he is mature enough to handle having one.
I also created a new house rule....to earn play time for any electronic device, he and Laura will have to read. One minute of reading equals one minute of play time.
To my dismay, they eagerly accepted the new rule! I was really excited! Troy ran to the bookcase, grabbed a book, and started reading! But then I looked again...he wasn't reading! He was dragging his finger across the page, PRETENDING to read! I don't lose my temper often with my kids, but this about did it for me! I raised my voice and told him that was absolutely unacceptable behavior and if I saw him do that again, he would not get to play his game at all. He quickly apologized and started reading.
Although Laura does not struggle with the video game obsession, I felt it only fair to enact the rule for them both.
The rule has only been in effect for two days, but it seems to be working. The problem I'm facing is that I don't want reading to be a chore for my children. I want them to love it, to crave it, to sneak books under the covers with flashlights after bedtime. I'm terribly afraid that the new rule will make reading not fun. I hope that the large quantity and variety of books in our home will help.
I'd love ideas on what you have done in this type of situation!
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 LOVE organization! I love when I can easily find information I need when I need it. Saying I love it doesn't mean that I'm great at creating and keeping up with organizational systems though. When you are busy from the moment you wake up until the moment you go to bed, it can be difficult to work on organizing, and so, in the past, I have been lax in keeping up with information and have had to scramble and search, usually in a panic, for it.
Luckily, those days are, for the most part, over. I came across an app that has vastly helped my family's information organization. Before I go any further, I want you to know that I am in no way affiliated with the company I am going to discuss. I'm just a very happy user of their service and feel like it could help others.
The company is called CareZone. It is free to use, ad-free, and is available across all platforms, mobile and web. It is easy to use, private (encrypted), and truly the most important app on my phone.
I have special needs children who take many medications and have frequent appointments with various medical professionals and therapists. This app allows us to organize every piece of information easily right from our phones. We also have the ability to journal for each person. This is immensely helpful when discussing behavior issues with doctors and therapists.
Medications are constantly changing for the kids. I cannot tell you how nice it is when the nurse asks us about medications to open that app and read the names and dosages off to him or her. It also has the ability to save inactive medications.
I have an Android phone, and Tom has an iPhone. Our account seamlessly links across the two systems, allowing us to coordinate care. The same is true of the web browser. We also set our care provider up, and she was able to add details to the account. So, if we weren't home, and something happened, she was able to quickly open the app on her phone and add a note to the journal for that child on that date. Changes others make cause a notification to be sent to others who have access to the account, so everyone is always in the loop.
It has a calendar for appointments and reminders. It can hold pictures of important documents like insurance or ID cards if needed. You can take videos and upload them to the journal, which is-perfect if you want to show behavior concerns to a doctor or family member. It also stores names and phone numbers (under each family member's name), which is very helpful when I'm blanking on a teacher's or specialist's name.
This could help any and every family. For example, if you are caring for aging parents and share that responsibility with other family members, it could be a lifeline in coordinating care and keeping everyone updated. It is also great for emergencies. When I recently had to take Koby to the emergency room, it was so nice to pull out my phone to look up his medications and not rely on my memory. Even if I were a single woman with no children, this app would be helpful. It is wonderful!
I could go on and on, but I won't. They have a helpful website
for more information. Check them out, and if you decide to give it a try, let me know how you like it!
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!
Today was Troy's annual ARD (Admission, Review, Dismissal) meeting. It is always the longest ARD of the year, and today's was even longer because we had to go over all of the assessment data that has been collected over the last several weeks to reach the determination that he does meet the eligibility for a diagnosis of autism. I won't go into a huge amount of detail about the ARD meeting procedures because that could fill a book and become pretty dry. If you are unfamiliar with ARD meetings, basically, they are committee meetings made up of parents, school administrators, general education and special teachers, a diagnostician, and any other specialists necessary to discuss the special education needs of individual students. At today's meeting, for example, we had a large group: Tom and I, a physical therapist, the school principal, the diagnostician, the special education teacher, an adaptive PE teacher, Troy's teacher, a special education counselor, and a school psychologist were all in attendance. We were missing the occupational therapist.
Each year, progress on previous goals is reviewed, any new assessment data is reviewed, and new goals are developed. Accommodations and services that the student needs are discussed, and plans are put in place. Brief ARDs can be held at any time of the year if necessary. That is the bare bones explanation. If you want further info., please let me know, and I'll do my best to answer your questions. I've sat in too many to count as both a parent and an educator, so I can offer a pretty well-rounded perspective.
Before an ARD meeting occurs, a draft of the reports and proposed goals are sent home so that parents have time to read through it thoroughly and prepare for the meeting. When we received Troy's draft, we combed through the data--and there was much to dissect. I made notes throughout, indicating areas I disagreed with or didn't fully understand. The draft was probably about 25-28 pages long. I agreed with almost everything I read--with one pretty large exception--the occupational therapy portion. I had serious concerns about that portion of the report. You may have skimmed over my list of attendees at our meeting today--the OT was the one person I really wanted to be in attendance today, and she wasn't.
Troy has poor fine motor skills. He always has. He has an official diagnosis of dysgraphia, he can't tie a shoe, he struggles with zippers and buttons, he can't use scissors, etc. His handwriting is horrible -most of the time. He has gotten better and is capable, at times, of good writing, but it is laborsome, and he tires easily and quickly. So, the report that came home said that he had not made progress from his direct services, recommended he use a word processor for his written activities, and completely stop his OT services. It made no sense to me. I could understand and support the introduction of assistive technology, I agreed that he isn't making progress...but I could not support the discontinuation of the therapy. It made no sense to me.
When we got to that portion of the meeting, I was a bit nervous to voice my opinion. For one, the OT was not there. Also, I was afraid the other committee members were all going to disagree with me. (34 years old, and still worrying about peer pressure?!) I was starting to question myself and whether my concerns were justified. But-I thought about the advice I gave recently (Click here for more on that.) I knew I had to advocate for Troy.
So, I cleared my throat and inched forward in my seat and said, "I have some concerns with that." Everyone turned to look at me, and I stated my concerns. I could feel my heart thumping a bit harder as I voiced my disagreement. I finished and held my breath for a moment, wondering what they would say.
What followed could not have been more perfect or comforting! Several of them agreed immediately. They said that they also had those thoughts and concerns when reading the report AND had already discussed their thoughts amongst themselves beforehand. I was told that had I not mentioned it, they were going to! The principal reminded me that we were a committee, and, as a committee, we can determine that that recommendation was not in Troy's best interest. I must have had a huge grin on my face when I heard their agreement and support of what Troy needs. What a sense of peace I felt at that moment and immense gratefulness that this committee of people does care about my son.
The meeting finished-eventually, and we all signed in agreement. The finalized copy of the minutes and IEP goals is 39 pages long! That's quite a bit of information to digest.
I cannot stop thinking about the importance of advocating for our children. I am not just talking about my three special needs kiddos--I'm talking about every single parent and every single child--typical or not. Thankfully, most parents will not have to attend ARD or 504 meetings. But that doesn't mean all parents don't have to advocate for their kids.
A co-worker sent me a text message just last night, upset about an app her son was told to download and use for school. The teacher had very noble intentions, but my friend was upset when she saw some of the other content on the app. It went against her religious and moral beliefs. She had written the teacher an e-mail but reached out to me before sending it. What advice did I give? "Voice your concern! You have to advocate for your children." And she did.
I've been thinking about how nervous I was to speak up in the ARD meeting. I have been in at least 100 ARD meetings-on both ends of the table in the last eleven years. I am comfortable discussing assessment and achievement data and understand standardized testing and can even hold my own when discussing standard deviation. I like the staff that work with my children and believe they are qualified and do care about the kids they work with. And yet-I was nervous to voice my justified disapproval to a room full of these wonderful people.
I started to think about all my fellow parents and the never-ending stream of situations that come up that require us to speak up for what we believe is in the best interest our children. It is sometimes difficult and even scary to do so, and, yet, we do it.
If you are a parent, I know that it can be exhausting and time-consuming and stress-inducing and even terrifyingly nerve-racking to advocate for your children. Do it anyway!
You don't want to wonder what would have or could have happened if you had said something. Believe me when I say that I worked professionally with incredible educators and specialists who genuinely care for the kids they work with. As a parent, I'm thrilled to see it from this end, too. That being said, even when they're doing their best, they don't know your child the way you do. Remember that, and speak up when you feel you need to. I think you'll find that you will be listened to, and you will feel a sense of peace, knowing that you have done your best as a parent.