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

Posts tagged ‘Special Needs’

Diving Off the Deep End of the PEER

 

I found out recently that people in my life, both friends and family, feel that I am a bit of a know it all.  I could have been offended at this knowledge, but surprisingly, I wasn’t.   I personally don’t think anybody could be a true know it all, but I did think I knew a lot……….a lot about myself, my life, my kiddo’s life and our journey.  I knew these things because I had opened my mind and embraced my ability to learn.  This week I tested that ability and embarked on an adventure that would drive me to seek a deeper understanding of myself and my willingness to use that knowledge to help others.  Over the course of the week I learned more about things I thought I knew and I learned about things I didn’t realize that I didn’t know.  Most importantly, I learned about sharing my experiences in an effective way, instead of an intrusive ‘know it all’ way.

willing to learn

 

One of the beautiful aspects of the state of Georgia is that it’s Department of Behavioral Health and Developmental Disabilities is one of the pioneering agencies in the field of mental health services…..specifically, in Peer Support Services.  For many years there have been adults working in the position of a Certified Peer Specialist in the fields of mental health and addiction recovery.  After years of advocacy for both families and youth, there are now emerging groups of Peer Specialists that are specifically centered around youth living with these challenges and parents of people living with these challenges.  This week I joined their ranks and completed my training to become a Certified Peer Specialist-Parent.

What is a Peer Specialist?  We are people who have ‘been there and done that’.  We are people who can use all of the knowledge we have gained, the experiences we’ve had and, most importantly, the emotions we have felt to provide support to others who are walking the same path.  We are the people who will ask “How are you?” ……and then listen to the answer without hesitation or judgement.

howWally

 

At the beginning of the week, I felt strong in the knowledge that I possessed all of the skills I needed to be the best Peer Support Parent possible.  What I learned, after lots of tears and self reflection, was that I don’t need to have all of the answers…… I don’t need to fix everyone around me…… I should simply be there when they need someone who understands.  I also learned that I have been drowning myself in service to others, always feeling that just because I have the ability to do something means I have to.  It was eye-opening for me to realize that I can take a breather from other’s lives to focus on myself and not feel guilty……..and that’s ok.   I didn’t learn this from the curriculum,  power points or exams…..I learned this by walking in the door every morning to 20 people who understood me before they even knew me.  I learned this by having virtual strangers sincerely asking me about my well-being every morning.   I learned this by having these strangers become caring friends by the end of the week.  In my daily life, I have a wonderful ‘mom’ friend who gets me, I have supportive friends at NAMI who get me, but having this large group of peers surround me and envelop me in kindness and understanding every day this week was a life changing experience.

As parents of special needs kiddos, we live our lives for our children and families first…….and then we love to educate others about what we know.  I have been doing this in an effort to make this world a better place for my child and others like him.  For a long time I felt that I was fighting this war alone.   I didn’t realize that by doing this to the extent I do, I am stretching myself thin.  I know I spout about self-care to others often, but I rarely follow my own advice.  I find it funny that it took me taking a class in an effort to help others to teach me to help myself.

Just goes to prove that this world is full of things that I don’t know. So I thank my teachers this week, all of my peers who taught me that’s it’s alright to care for myself and opened my eyes to the fact that I’m not in this alone.  I have warriors by my side.  Alone, I might be able to change the world, but I will burn out quickly.  As a group, we can give each other strength and a little bit of relief that we can take on the world together…….and go so much farther in our efforts.

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16 Steps Forward, One 17 Foot Drop Back

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It’s Not About Being Selfish…..It’s About Self-Care

If-we-neglect-taking-care-of-ourselves

“If you don’t tell me what’s wrong, I can’t help you find a solution.”…..I have found myself saying that to my son a lot in recent months. As parents of children with special needs, we tend to always be on the search for solutions to our kiddos challenges…..but how often do we search for solutions to our own challenges?

One of the things that has helped me in recent years was finding a caregiver’s support group.  I am going to be honest, in the beginning, I felt guilty.  Up until then, my ‘alone time’ was grocery shopping by myself……but that was still doing something for my family.  Once I started going to support group, I was taking a couple of hours a month to do something for myself.  After a while, though, I realized that I wasn’t just doing it for me, I was doing it for everyone in my family.  It helped me to express my feelings to other people who understood what my life was like.  It helped me to relate to my son better.  It helped me and my husband communicate better.

There are so many of us that don’t have a great personal support system.  When our child was diagnosed with a mental illness or neurological disorder, many of our family members or friends simply didn’t understand.  Our child’s school didn’t understand.  There were even medical professionals that didn’t understand.  Once you are sitting in a room with a group of people who have been in your shoes, it can be a life altering experience.

If you are in a situation where you do not have a support system around you, it is important to find the support you need using alternate avenues.  There are many ways to do that.  I am listing a few links that can help you find resources or support groups in your area.  Please take time for you, so you can take care of them.

National:

NAMI

Mental Health America

Center for Parent Information and Resources

Here in Georgia:

Georgia Parent Support Network

have the courage to ask

A Light In The Attic

face-your-fears

 

When we moved to the south three years ago, there were definitely a few fears I had to face.  I was up for the challenge and excited about what lay ahead,  but being the northern girl I am, there were little thoughts nestled in the back of my mind about what I was getting myself….and my child into.

First came the big fears.  My son, CJ, had a hard time being accepted by his peers….and by adults, for that matter…..when we lived outside of Albany, NY.  Would he have trouble with this southern move?  My husband and I are progressive thinkers in the matters of life, love and faith.  How would WE be accepted into this more conservative society?  It didn’t take long for those thoughts to be quieted.  Within months, CJ had found a couple of true friends and my husband and I had become a part of a wonderful circle of very accepting people.

Then came the silly fears.  Georgia has big bugs….and snakes….and tornadoes.   I have to say, I have not seen one snake near our home since we lived here (I did see one in the lake down the road, but it was far enough away that it didn’t even phase me).  There has only been one bad tornado….and it was about fifty miles away.  The bug thing I am still working on.  Two and a half years since we moved into our house and I still have not ventured into the attic for fear of an encounter with a brown recluse spider. In three years I have learned to face my fears of the unknown (well, most of them anyway)…..and this week I triumphed over another one….home schooling my son.

Since elementary school CJ has struggled with being in a classroom.  His anxiety has gotten so overwhelming that he can become physically ill….nausea, vomiting, chest pains.  He was afraid to let teachers know that he understood the work because he didn’t want to be called on.  If a teacher reprimanded him in front of the class, he carried it with him every day.  His struggles with his learning disabilities and sensory processing disorder has hindered the learning process….especially when he has come across teachers that don’t understand working with challenges. This has all been a part of living with bipolar disorder.  This has all been part of our lives since the first grade.  This has all been a part of our lives until we decided enough was enough.

In June, my company was forced to do some layoffs…..me being one of them.  I seized the opportunity to change some of my life goals by starting my own company.  I did so with the assumption that my son would be attending the private school we enrolled him in last winter.  Little did I know, on his first day of school that would all change.

We knew going in, that this was a Christian school, but I specifically asked what views they held upon enrollment.  I was told that the curriculum didn’t hold any specific point of view and that they had students from all faiths attending.  They held up to that for winter and spring semesters.  Not so much this year.  On his first day, CJ was told he was a sinner by his history teacher because he believes in evolution and that the world is millions of years old.  He also got in trouble after that history teacher said God wrote the bible and my logical thinker son said…”Um, no. The followers of God wrote the bible…..that’s why each book is named after them.”.  Later in the day he encountered his new biology teacher who literally struck fear into one of his classmates as she reached across the desk to hit him with a yard stick.

As soon as CJ got in the car at the end of the day, he told me what happened and said, “I am never going to be able to speak in that class because I am sure I will be hit eventually”.  Looking through my son’s notes that day, the only thing on a page from that class said DO NOT SPEAK….underlined five times.   Needless to say, he was a nervous mess.  That night, he woke up from a severe panic attack,  sweating, crying and shaking.  It took him a while to calm down and get back to sleep…….and then he woke up the next day the same way.  The next time I dropped CJ of at school, I remember thinking “School should never have to be a place you are afraid of.”.

By Wednesday of that week I had a long conversation with my husband.  What if I tried to home school him?  I know we had attempted on-line schooling before, but what if I created a curriculum that spoke to him? So, I embarked on a new adventure….trying to build the right curriculum for my kiddo.  Something that would teach him life skills as well as academic ones. Something that would engage his interests while educating him.  Something that would make him want to learn more.

CJ and I had a long conversation about it and I set forth the rules we would have and the schedule we would follow.  We determined to keep the same school schedule he had at the private school, four days a week of class and Fridays would be set aside for any catch up work or course work to help him understand something he is struggling with.  He would also be expected to pick some type of community program to volunteer with.

This week we started.  As before, I had fears going in.  I began with quite a bit of nausea, myself…especially because I didn’t have a whole lot of time to figure out which curriculum program we were going to use….so I created what I call a Frankenstein program…..  little pieces of different programs and some of my own.  I wanted to start by September, so we began with five subjects instead of the six I planned.  I am still working on the curriculum for history and will add that in the next couple of weeks.  This year, our subjects are Oceanography, Popular Literature(focus on comic books and manga), Sign Language, Accounting/Economics and Life Skills (my answer to Home Ec).  Each day I allow CJ to pick which subject he wants to start with.  Our classes are a mixture of reading, lecturing and hands on work so I can see how he learns the best.  He has not made one complaint.  He has completed every task I have set before him.  He even woke me up early on Friday asking me why I let him sleep too late because he wanted to start school.

After the first couple of days, I heard CJ on a telephone call to his grandmother.  He made a comment that struck me.  He said “I understand what I am learning because when I ask a question mama takes time to explain instead of just reading the same thing a second time like all my other teachers have done.  I mean, if I didn’t understand it when you read it the first time, how is reading the same thing a second time going to make it any better?”.  Because he and I are one on one, I have the time to explain things in detail to him and to answer all of the questions he may have, which is something his teachers never had time to do.  I think this will be the key to our success.

So, we are only one week in….but it has been an amazing week.  I wonder if it’s about time I faced another fear and venture into the attic….maybe I’ll leave the light on for a while first, just in case.

light in the attic

Week of Hell……Feeling Scorched

holland

Last week I was introduced to an essay written almost 20 years ago that will resonate with parents of special needs kiddos for years to come.  It is titled Welcome to Holland and I thought I would share it with you:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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It is a lovely essay and a lovely sentiment, but you know what? I would love to go to Holland!!!!! Lately I feel that my Italy trip was interrupted when a plane landed me right in the middle of the Sahara.  I keep seeing the image of what could be a happy and healthy future for my son, only to find that it was a freaking mirage. That nice long refreshing drink of water I thought I was going to have ended up as sand in my face…..and hair and eyes and shoes.  Then a wind storm kicks up and I am being pelted from every which way, like tiny bits of glass trying to eat away at my skin.  Even when the wind dies down, you are in the hot, unrelenting sun.  There is no relief, no oasis….but then you see the happy mirage again.  It is an endless cycle.

This week my son started his sophomore year of high school.  It has been a week of hell around here.  His school only has a 4 day week…..and he already missed 2 of them.  The anticipation and anxiety of school starting was more than he could take and Monday night he woke up having an anxiety attack……and then woke up Tuesday morning with one, as well.  Wednesday seemed to be fine, so I was surprised with his absolute reluctance to go this morning.  After about 3 hours of arguing with him, I gave up.  I know, it was a horrible parental move….but I just got to the point where I couldn’t argue any more.  I know how much he hates school, how it is like torture for him every day…..but I also know that he needs it to have any kind of future as a productive member of society.  We have tried home school, public school, a combo of online school and public school and now we are trying a small private school.  There is nowhere else to go…….we are out of options in our financial reach.   After all of our struggles over the past few years and his many threats of dropping out, for the first time I truly believed that he wouldn’t make it to the end of this journey.

I had to alter my idea of what success was for my son many years ago.  I also had to alter my idea of what I thought a successful parent looked like.  You know the idea you have when your child is born……they will grow up, be so much smarter than you, go on to college, have a great career and be a happy healthy adult……and you were the awesome, cool parent that got them there.  That idea changes when you have a child with a mental illness.  All of a sudden getting them through school without substance abuse, run-ins with the law or suicide is success….if they do well academically along the way, well, that’s just icing on the cake.

For some reason, even though school has been a challenge,  I always knew I would see my child in a cap and gown.  This week, for the first time ever, I have come to the realization that it probably won’t happen.  It was a huge blow to me.  I have been telling myself that if I could at least get him that far, I have done a decent job as a parent.  What does it mean if I can’t get him there? Was all of this fighting, with him and with the school system to ensure that he had the best education for nothing?  Where do we go from here?

So, I sit here in the Sahara.  Knowing that a rescue plane is not in the near future and just hoping that I remembered enough sun block because I burn easily.

sahara

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.

world-is-full-of-suffering

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.

courage