Navigating life with a teenager….who happens to have bipolar disorder

Posts tagged ‘Personal Opinion’

The Choice is Up to You

Suffering

This past weekend, my husband and I attended an advocacy training class hosted by NAMI.  At one point in the training we were read sample stories, letters and emails in an effort to learn how to be more concise when reaching out to others.  One of the sentences sparked a short debate within the class, it was a simple sentence….and one I use often “My son is living with Bipolar Disorder”.  When we were asked what stood out to us in the letter, I cited this sentence because they used the word living instead of suffering.  The word suffering has become all too common within the mental health community and there are many of use that would love to ban it all together.  There were others in the class that did not agree and stated that by erasing the word from our stories, it lessens the struggle we have all gone through.  Here is why I no longer use the word suffering in my son’s diagnosis:

My son has wonderful days. Most of the time, he is a happy and healthy 15-year-old boy.  Is he different? Yes.  He has to take multiple medications daily, he has to see doctors more often than most, get blood work done more often than most, and he needs to recognize when he is in a situation that may cause him lose control of his emotions.  These are all things he is learning to do very well……better than a lot of teenagers, if I do say so.  Does he have days when he struggles; when the highs and lows of bipolar disorder are so overwhelming he feels out of control?  Of course, that is the nature of the illness, but I feel the good days out-weigh the bad.

I believe true suffering is a choice not a diagnosis.  I have met people diagnosed with cancer, living with the horrible symptoms of their illness every day, but looking towards life with a positive attitude…..I have also met people with cancer who choose to let the symptoms control their life and their mood.  Same illness, same symptoms, but different attitudes had a huge effect on whether or not they emotionally suffered. Mental illness is no different.

People with mental illnesses have days where their world can be turned upside down…….and their families have those days, too.  It is how you pick up and move on to the next day that determines if you are choosing to suffer through the illness or live with it.  I have made a point of telling CJ that he is not bipolar, he is diagnosed with bipolar disorder.  The illness does not determine who he is or how he is defined.  Only he can determine that.  In the same sense, the illness does not determine whether he is suffering or not…..that choice is up to him.

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NAMI is the National Alliance on Mental Illness – a national organization that advocates, educates and supports people with mental illness and their families. For more information go to: https://www.nami.org/

The Many Faces of Courage – this mom’s thoughts on Caitlyn Jenner

courage churchhillIn the past month or so, there have been so many news items that I have had strong opinions about…..but I try to keep this blog about our life coping with mental illness and not as a soap box for my personal views on the world, so I have forced myself to keep my mouth shut all the while sitting on my hands…..both here and on FB.  That was, until I saw a few posts on Facebook the past couple of days that made me release my hands and type away.  As I have said before, we all have our own truth, and this is mine.

Earlier in the week, the Vanity Fair cover came out with Caitlyn Jenner.  Originally, my FB feed was filled with support for her……until it was announced that she would be receiving an ESPY award for courage. Following that announcement, I started seeing more and more negative posts accompanied by pictures of military personnel with the heading “This is real courage”.

Now, I believe whole-heartedly that members of our military represent courage and bravery.  If it was not for our armed forces, we would all be living a much different life in a very different country. They put their lives on the line every day for our freedom and I thank them for that……but who says that courage can only come wrapped up in camouflage?

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I was raised by a single father in a time when it was a rarity.  Most men who were single parents during that era had become so due to circumstances beyond their control.  My dad chose it.  My parents married young and divorced young. At the age of 25, my dad took on the responsibility of 2 toddlers.  He had no outside financial support, and little to no emotional support from his parents. He raised us on his own and helped us become strong, capable women. He is my hero…..he represents courage and bravery to me.

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When I was 20, my grandmother was diagnosed with pancreatic cancer.  Having spent her life roller skating, my last image of my grandmother was on skates.  She was holding the wall as she circled the floor, but she was pushing forward.  In the face of death, she chose to live life…….she represents courage and bravery to me.

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I have a 15 year old son who is living with a mental illness.  His depression and anxiety can be overwhelming at times….for both of us. He has friends…..he goes to church……he goes to school…….he loves helping others.  When there are so many people with mental illnesses that choose to lock themselves away from the world, he faces it every day……..he represents courage and bravery to me.

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All of the parents that are raising special needs children, that are advocating for them to make sure they get to have the best life possible……they represent courage and bravery to me.

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All of the adoptive parents and foster parents that choose to love another’s child as their own regardless of the challenges they may face……they represent courage and bravery to me.

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All of the people who grew up facing adversity and used it as their driving force to create a better world……they represent courage and bravery to me.

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The teenagers who are true to themselves, whether it be something as complex as sexual orientation or choice of faith, to something as simple as choice of clothing or music…..those kids that choose what’s right for them instead of what’s popular…..they represent courage and bravery to me.

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Since becoming CJ’s mom, I have had to learn to open my mind to differences.  Differences in personality, differences in lifestyle, differences in opinion.  Because of that, I try to pay attention, especially when I think I will learn from a situation. When I saw that Bruce Jenner was doing an interview with Diane Sawyer, I made it a point to watch…..and to pay attention.  My overwhelming thought at the end of that interview was “Wow, I have a feeling he just saved somebody’s life”.

Bruce Jenner made a decision many months ago.  He could have hidden away and gone through this transition in private, but he chose not to.  He knew that his experience and his life could help educate others.  He used fluff entertainment, like The Kardashians, and turned it into a platform to help us understand the transgender community a little bit better.  I read another blog post about Caitlyn Jenner being fake.  Yes, it took multiple surgeries to get there, so physically she is augmented, but Caitlyn is Bruce’s truth….one that he had hidden for 65 years.   The fact that Bruce made the decision to introduce the world to Caitlyn and have her fulfill what he considered his life’s purpose in helping others……that represents courage and bravery to me.

Honestly, I know there are many people who don’t think that is heroic…..but then, maybe people don’t realize that the statistics of suicide are staggering.  It is quickly becoming one of our nations leading causes of death.  Bruce’s choices, that Caitlyn is carrying out will, quite possibly, save lives within the LGBTQ community.  To me, someone who has the ability to save another person’s life and chooses to do so in the face of adversity is a hero in my book.

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Ch-Ch-Ch-Changes

Things are changing in our world once again. After trying a semester of a split (home and school) schedule for CJ, we have found that it is not working.  He needs more structure and he and I need not be in an office all day together…..even if it is only every other day. His grades are suffering, even more than before. Even worse, our relationship is suffering. I am after him constantly to get his online work done.  By the end of some days, we aren’t even speaking because there has been so much frustration and tension between the two of us.

Lego Devils advocate

I have always been a firm believer in public education, really, I have…..it’s just not working for my son.  Since the 6th grade, CJ has been in modified special ed classes.  This means that he takes mainstream classes with guidance, either from a secondary teacher or an additional aide in the classroom for core subjects. Other elective classes are simply mainstream.  This year we tried to do a split program where he takes some classes online and others on-site.  This has been our challenge, online classes don’t provide him enough guidance and on-site classes are getting so big, special ed kids are getting lost in them….as well as getting emotionally overwhelmed with the social challenges that always come with high school.

I have also found that, just like all kids learn in different ways…..some teachers are only able to teach in certain ways.  As we have gotten up to the high school level, there seems to be less patience and understanding for kids with challenges…..and less flexibility in the way teachers are able to reach them.  Last month, I had a conversation with his case manager, who also happens to be one of CJ’s co-taught classroom teachers.  We discussed that with his modifications (extra time, option to key instead of write…etc) CJ has the ability to do any of the work provided…..he just needs the motivation to do it. This teacher said to me “I have been trying to get him interested, but as case-managers, we are taught to modify programs, not motivate kids”. This made me upset.  Not at this teacher…..he was doing everything in his power to help my child….but his statement just goes to prove that teachers aren’t always given the tools that they need to work with these kids effectively. He is only one teacher….among the many that my child experiences every day.

Lego Motivation

 

I know many people who are educators and I know this next statement may make some waves…..but I think there is way too much ignorance in the teaching profession in regard to kids in special ed programs.  ‘Special needs’ does not in any way, shape, or form mean stupid.  Unfortunately, we have come across multiple teachers in recent years, who think just that……or at least they treat the kids in their classes as such. Although there have been a few that we have been able to educate about how neurological challenges effect kids in the classroom……and how to work with those challenges, there are even more that refuse to hear.  Because of this, my son feels defeated on a regular basis. He is constantly telling me how dumb he is. CJ is far from stupid…..he actually has an IQ of 112. While he may not be classified as a genius, he is above average.  One of his best friends happens to be autistic….and is brilliant, but still requires special services in school.  There are so many kids in the same situation that are getting lost in the system. I am afraid that, in our situation, since CJ has entered middle school, the public school system just hasn’t been serving his needs as well as I would like. I think this has a lot to do with the class size and the rigid curriculum that is being placed on these teachers, but some of it is the teacher’s willingness to learn how to work with different children’s skill sets and challenges. A whole other part for us is CJ’s lack of willingness to engage once he emotionally shuts down. This happens quite often.

We found an option that we qualify for through GA’s special needs scholarship.  Because CJ has an IEP (Individualized Education Plan), GA will pay for certain private schools.  We have a couple of schools in our area that are classified as special needs scholarship recipients….but not all are the right fit for CJ.  We did find one, however, in the next town over, that we are going to give a try. The classes are small, 12-15 kids max, and 25% of their kids have IEP’s, so they know how to work with the requirements. They also have a 4 day class week and the 5th day is a catch-up or tutoring day. Another bonus, being a private school, they have the ability to work with a different curriculum than the state mandated common-core.

So, I am running around gathering all of the required paperwork in the hopes that I will have it all together by Friday, the day I need to go in and fill out paperwork. If all goes as planned, he will be able to start after Christmas break. This is my last hope.  If this doesn’t work for him, I really don’t know what our next step is. No matter what I do, I can’t force him to want to learn and I can’t force him to understand the importance of an education. No matter how much I would love to do this on my own……I need help.  Educating a child takes a team and hopefully I will find a team at this school that can help me motivate him and educate him. One of the challenges with bipolar disorder is that CJ rarely sees beyond today.  So I will take a page out of his book….. for today, I will be calm and hope that this new school fits his needs. I will hope that the teachers will have patience with him and somehow help me get him excited in learning again. That would be a beautiful thing.

Lego Teamwork

 

****Today’s graphics are a nod to the wonderful Sheena at Not a Punk Rocker. who helps me see the light at the end of this long tunnel. 🙂

If Kids are Going to Rule the World….We Better Teach Them Some Manners First

considerateI wrote the other day about how this world has become so self-involved.  I had a dream last night that triggered a memory from a while back that I thought I would share with you all.

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Following my divorce, I dated a gentleman for the better part of 4 years. He was from a big, boisterous Italian family.  They would regularly have family dinners to celebrate birthdays…..and since there were a lot of cousins, there were a lot of family dinners.  One day, he called and asked if I would like to attend his mother’s birthday dinner that next Saturday.  Being the introvert that I am, he sensed my hesitation and told me that it would only be a few of us and it would be at a restaurant in a nearby city.  I asked what type of restaurant it was and should I have CJ (who was then 3 1/2) stay at his grandmother’s for the evening?  After making some inquiries, he informed me that his sister, Jane, was also bringing her 5-year-old daughter and had brought her to this restaurant multiple times with no problem.

On the evening in question, we met up with his family outside this very, very upscale restaurant.  I groaned inwardly….I knew it wasn’t going to be a fun evening, this was not a good space for my sensory sensitive kiddo.  I felt a little better when the maitre d’ brought us to a semi-private dining room.  Our group of 8 was seated at the one large table in the room and the scattering of small 2-seat tables were all empty.  I figured, we were there fairly early, so maybe we could eat and get the kiddos out of there before the bulk of diners arrived.  I was wrong.

Following a huge influx of appetizers and very few people being able to make a decision about their meals, and hour and half later…and before we were served our meals, couples started to be seated in room along with us. Being able to maintain a toddler in a private room is one thing….but now I was trying to maintain a toddler in a public atmosphere after he had been behaving for well over an hour.  What made it even harder was that Jane had handed her 5-year-old a pad of paper and told her to play waitress.  Of course, CJ would have none of sitting when another child was allowed to wander.  Jane…..a child behavioral specialist, picked CJ up out of his chair, reprimanded me and said “you have to let kids be kids”. As our 2 small children started wandering around the room taking orders from all of the couples sitting at surrounding tables, I was mortified.  Needless to say, for any other dinners with that family, my son got to go to grandma’s….where I could let my ‘kid be a kid’ in a space that was appropriate for him to do so.

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Why did I tell you this story? Well, just as we have become an egocentric society, we are raising selfish, entitled children.  What made it ok for our kids to interrupt other people’s evenings? If you were a couple that was having a private ‘date night’ at a very upscale restaurant, how would you feel about small children impeding on that time?  Had I been given more information going in, I would have found a sitter for my son….but once I sized up the situation, I was trying to use it as a teaching moment…trying to teach my son to be respectful of others. That teaching moment, my choice as a parent, was over-ridden by other people who thought they knew better. In turn, it was insinuated that I was a bad mother……and was told that night that I had a lot to learn about parenting.  Years later, I still feel like I wasn’t the one with something to learn in that situation.

Our society is becoming so self-involved because we are teaching our children that it’s ‘all about them’ and that their feelings, wants and needs come before others. It may seem old-fashioned of me, but I think it’s time that we return to teaching manners, first and foremost.  If you want your kid to be able to act like a kid, then bring them to an environment that is conducive to that behavior.  If you bring them into an adult situation or environment, be prepared to use it as a teaching moment for your child…..and for you.  Your child needs to learn to respect other people’s space and privacy and you need to learn that, if your kid is ‘being a kid’ there are probably going to be people who are upset by that. But guess what…..it’s not all about you or your kid.

Cause for Insomnia – My Over-Active Brain

Ok…..so as many of you have figured out by now, I am participating in NaBloPoMo (national blog posting month) by being a part of a group of bloggers referred to as the Peppers or…. Nano Poblano.  I have decided to do this in an effort to stretch my writing topics a bit.  So today I will take one of the writing prompts and run with it.  Of course, the first one I chose was a list…..since I am a habitual list writer, I thought it would be fitting.

* Lists help people organize their lives. Write a list of ten things that amaze you.

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1. Aging : It has always amazed me how much of a hurry everyone is to be an adult. This isn’t a new amazement….I even felt this way as a kid.  I don’t know if it was growing up in a single parent household from the age of 2, seeing the challenges my parents went through, watching my dad work 2 jobs…..or if I was just smarter than my years.  I always knew that being an adult would suck…..and I was right. Although it has a few benefits, I would much rather live in my stress free childhood of the 80’s.

2. Ignorance : In this world that we live in, with knowledge at our finger tips, it amazes me that people choose to be ignorant. People either refuse to educate themselves or they think that their way of thinking is the only way.

3.  Weather : It amazes me and scares me at the same time. It is something that is completely beyond our control and still not within our understanding. You are more likely to have a tornado or a hurricane wipe out your livelihood than you are of catching Ebola, people.

4. Environment : This didn’t start hitting me until I really stepped out of my northeastern comfort zone. I have always been a lover of people and lifestyles.  It has always interested me to see how people all over the world live such drastically different lives……but I was never so amazed as when I moved to the southeast.  I never considered another part of the United States to be a different world….but it is.

5. Musicians: More specifically, songwriters. I have the ability to be creative. There are many art forms to which I find a way to express myself, but I have always admired and been amazed by songwriters.  That they can take a simple life experience…..experiences that we have all had, and turn it into a work of art that resonates with people from all walks of life , is a wonderous thing.

6. Technology : Do you ever think about how far we have come in such a short time? It amazes me that we have come farther in the past 100 years than we had for thousands of years before.  I don’t even think it is because we are smarter now than our ancestors were…..I just think we accept genius and admire it instead of locking it in an asylum.

7. The Brain : I wasn’t necessarily impacted by this until I had my son. He started with OCD tendencies at the age of 3…..and our world declined from there ending up with a bipolar diagnosis at the age of 12.  Every day I am amazed at how the brain functions….or sometimes malfunctions.  I am in awe at how a simple fear can be turned into an anxiety attack or how a simple pleasure can lead to a manic episode.

8. Medicine : This kind of goes hand in hand with my amazement with technology. Although we have a long way to go in figuring out things like mental illness or diabetes, we have come so far in treatment or eradication of so many other illnesses.

9. The Ocean : The vast amount of water that is the ocean amazes me.  The juxtaposition of being devastating in a storm, but calming on a beautiful day can sometimes overwhelms me. It is the epitome of dangerous beauty.

10. My son : I think it’s amazement…….. with an added touch of frustration. 🙂 I wonder at my son’s kindness and sensitivity to people around him (outside this house of course). He can be so conscientious and caring with adults and children alike.  He is funny and creative and loving.  I know he saves any frustrations he faces during the day for those who love him the most…..but it amazes me that he is able to control those frustrations for the outside world and put on a brave face, in spite of the torment that is going on inside his brain.

There are so many other things in this world that amaze me……but the prompt only asked for 10….so, here you go. 🙂

The Girl in the Elephant Sweater

Today’s DP Challenge

Many of us had imaginary friends as young children. If your imaginary friend grew up alongside you, what would his/her/its life be like today? (Didn’t have one? write about a non-imaginary friend you haven’t seen since childhood.)

elephant sweater

I don’t think I had an imaginary friend……or maybe I did and I didn’t realize that they were imaginary.  I thought I would write, instead, about a childhood friend that was in my life briefly, but made a huge impact on how I view people.

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It was about a month or so into the sixth grade. A brisk fall day in the Connecticut town where I lived.  As I sat in class, I heard mutterings about ‘the new girl’.  From the whispers I found out that she was in the other sixth grade classroom. Before I met her, I was informed that she was tall, with beautiful blond curls. They said she was quiet and she dressed kind of different, but that must be because she was cool…..she had to be cool, she was from another state.  Anybody was cool that wasn’t from around here.

It was time for lunch, as I left the classroom and started to walk down the hall, the blond curls caught my eye.  She was tall and pretty.  She walked in an almost haughty way down the hall, never once looking around her, like she owned it. I was a bit surprised, however, about her attire…..everyone said she must be cool…..but she was wearing a bright red sweater with a big white elephant on it. This was what everyone thought was cool???? If I wore something like that, I would be laughed out of school.

I brought my lunch, so I was the first to sit down at the table where my small group of friends usually gathered.  The new girl spotted the empty seats and asked quietly if she could join me, she brought her lunch, too.  I was confused.  Wasn’t this girl too cool to be asking to sit with me? We spent about ten minutes chatting before everyone else  made it through the lunch line.  I found out that she was pretty shy. She was self-conscious about her height was afraid that people were going to make fun of her.  She was nervous about being in an unknown place, but said that she made sure to look straight ahead when walking down the halls so the new surroundings wouldn’t bother her as much. And the sweater…..she had just moved from a warmer climate and her mother made her wear it because it was chilly out and it was the first warm thing that was unpacked.

She and I became friends for the year or so that she lived in my town.  It may seem insignificant, but that experience taught me to never feel less than anyone else. That morning, because of other people’s words, I found myself believing that I would be unworthy of this girl’s friendship…..not because she was too cool to be my friend, but because I imagined she was.  I think this was the start down my road of self-confidence. This was that moment in my life when I learned to trust in who I am and be ok with that. It also taught me to form my own opinions and not base my thoughts or feelings on other people’s judgements.

The truth was, she never even noticed all of the whispers about her.  She was too nervous about being in a new school to pay attention.  Months later, when I actually told her about her first day at school, she laughed and said “That’s funny,  I was cool for a day and all this time I just thought I was a nerd in a stupid sweater.”

 

We Bend or We Break

Over the past year, I have been finding myself watching Dr. Phil occasionally.  I don’t really watch it for Dr. Phil’s wisdom or his unabashed self-promotion. Where most of his episodes are about topics that don’t draw me in, I have found that the episodes regarding out of control teenagers have helped me to not feel so alone.  It also helps when I have CJ watch those episodes with me.  The biggest learning tool that seems to help is watching a video of a kid losing control, screaming at a parent, and getting incredibly violent.  Because I don’t take video of CJ doing these things, it helps to show him a reflection of how he acts when he is in the midst of a rage.  The lesson doesn’t always stick with him, but it usually helps calm things down for the next week or so.

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The other day, I found myself watching Dr.Phil on my own.  He was doing an interview with Kelli Stapleton.  If you don’t know who that is, you may have read the headlines over the past year about the mom who attempted to kill herself and her autistic daughter, Issy, with CO2 poisoning.  This past week she plead guilty to child abuse and is awaiting the sentence that could be life in prison. I have read many articles about the case…..as well as many people’s comments on those articles.  I then watched her interview with Dr. Phil intensely before I formed my own opinion.  Although I can’t really wrap my head around someone attempting to kill their own child….the first thing I thought when I read all of this was “how desperate must she have been to think that was the only option?”.

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I can’t personally speak to her case, simply because I didn’t live in her home, with her child.  I do, however, live with a child that can be abusive and aggressive.  My son isn’t autistic, but the rage that can come with early onset bipolar in children can mirror the same type of aggression found in autistic children.  So much so, that it is a common misdiagnosis, as was the case with my son at the beginning of our journey. What bothered me most after reading the reactions to the articles was the outrageous ignorance that came along with them.  It frustrates me that people pose such opinions on someone else’s actions and motives when they are not the one living that life.   So many comments stating Issy’s aggression could only be because she was mirroring her mother’s behavior or if they only taught her coping skills she would ‘be just fine’.  The one comment that I read on multiple articles said that Issy must have hated her mother, since that was who seemed to be her prime target.

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Like I have said, I can’t comment to their life…..but here is the truth about many kids with neurological or mental illnesses.

*These kids have a brain disorder.  They are not aggressive or abusive because it is a learned behavior, they simply don’t have the same impulse control that someone with a normal, functioning brain would have.  When a person suffers from a traumatic brain injury that causes damage to the limbic system, we understand that they will have issues with aggression……. why can’t people understand that patients born with brain disorders may have issues with aggression, as well? It doesn’t have to be a learned behavior to exist.

*Teaching coping skills is a wonderful tool……..that doesn’t always work.  My son has been seeing therapists since he was 7……he is now 14.  That is 7 years of coping skills being taught.  Has it helped, yes……has it eradicated the problem, no.  The truth is, although the coping skills help in many situations it is not going to ‘fix’ him or heal him.  Bipolar does not have a cure, only treatment.  So if he is out of control or in a rage, he is not always in the right mind to use all of those helpful coping skills.

*Of course, I have to respond to my favorite comment regarding ‘mother’ abuse.  In most cases, these kids do not abuse their caregivers because they hate them or because they feel abused by them.  It is actually the opposite.  They abuse us because they love us, and because they know we love them unconditionally.  We are their safety. They know that we will always be there, regardless of how they hurt us, emotionally or physically.  We are their constant in a world that is very scary for them.  They can’t navigate it on their own……and that can cause agitation of its own.

In a rage, a couple of months ago, my son said he hated me.  That used to upset me……it doesn’t any more, because I know it’s not true.  I simply looked at him and said, “No you don’t, you love me.”.  His response to that was “I hate how much I love you!”.  Sometimes that is the truth.  I think sometimes my son lashes out at me because he is so reliant on me and he wants his independence so badly….he just can’t function in a way to obtain that independence yet.  Maybe someday he will…..but I don’t see that happening any time soon.  I will pray that it does, sooner rather than later.

That last statement may be taken out of context, as I think many ‘venting’ statements were on Kelli Stapleton’s blog.  I am not saying I want my son to find independence because I don’t love him, or because I hate living with him……I am saying it because I wish a better life for him……and maybe for myself, too.  It would make me so happy and proud to know that my son faced his challenges and succeeded in spite of them.

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There are going to be people who have negative comments about the choices that the parents of special needs children make. It frustrates me and saddens me.  All of the parenting advice in the world means nothing if you don’t live the life we live.   We are tired and stressed…even on the good days.  It seems like there is very little help out there for us…medical, financial, educational, or emotional…and what help there is takes tons of red tape and road blocks to obtain. Personally, I am also always on guard.  I am always wondering if CJ’s meds are still helping or if things are going to stay calm today or tomorrow or next week.  This can be an emotional trauma on a caregiver.  It is not only in the midst of the tornado that we feel the strain of this life…..the calm can feel pretty windy, too. We can either bend with the wind or let it break us. We need help so there aren’t more caregivers feeling the desperation and breaking the way that Kelli Stapleton did.