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

Archive for April, 2015

Storied Past: Chasing Happy Endings

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Were you like me then?  Did you grow up watching tv shows and movies that wrapped things up all nice and tidy, with a big, pretty bow and uplifting music while the credits rolled?  Are you like me now?  Have you come to the realization that life is not a freaking movie???? I think I figured it out a long time ago……way before I became the single mom of a special needs kiddo. Possibly when I came to the realization about how very human my parents were….maybe when I was a teenager and got my heart crushed and it wasn’t put back together for a really, long time…….maybe when….well, maybe when I grew up and life started happening.  The problem was that, even though I was well aware that I didn’t live in a movie, I used to wish for a happy ending.

Yesterday, I was reading a FB post written by a teenager that said “where is my happy ending?”.  My immediate thought was to respond “Why search for a happy ending when you are just at the beginning?”.  I didn’t…..I kept my mouth shut and my fingers still. Reading it made me think about happy endings, though…… and it made me think about when I stopped searching for them.

Some people might think I stopped looking for happy endings when I met a great man who loved me and my son unconditionally.  Nope….I don’t think a happy ending happens when you fall in love.  Some people might think that I stopped looking when we moved into our beautiful home and started living the life we struggled for years to achieve.  Nope…..I don’t think a happy ending comes with a proverbial white picket fence.  I think I stopped wondering about happy endings at my grandfather’s funeral.

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My grandfather was not an easy man to love.  He was grumpy and strict and proud and stubborn. Sometimes it seemed like his life stopped in the 1940’s and he simply couldn’t get beyond the war.  Like many people of his generation, he lived in the past and expected everyone around him to adhere to his out-dated rules and regulations. My grandmother brought a calm to their home and softened his rough edges.  When we were children, my sister and I would sometimes spend a Saturday night with our grandparents, eat cooked chocolate pudding out of crystal dessert dishes and watch The Muppet Show. We would then get up and go to church with them on Sunday and listen to them brag about their beautiful granddaughters.  As long as my grandmother was around, he was like any other grandfather….with a little bit of a gruff side.

When I was 20, my grandmother died of pancreatic cancer.  That gruff, grumpy man became down-right mean at times.  When I would come home for a visit, he would give me a hug and comment on my recent weight gain or tell me that good children don’t live so far from their family (I had moved 2 hours away).  Very rarely would anything positive come out of his mouth.  This got worse as he got older.  For a lot of us grandkids, we would make ‘required’ visits, but keep them short and sweet. Even at my last visit with him, in a rehab center following a hospital stint, I had no idea what to say to him or what to expect him to say to me.  He was always a bit of a wild card.

After he passed away, at the viewing, a group of us sat in a corner reminiscing and laughing about his stubbornness and retelling awful things he said to us….almost in a fond way.  That was what changed my mind about happy endings.  I remember thinking about my grandfather’s ending…..was it happy?  We weren’t sitting there talking about the loving way he hugged us or his strong sense of family, we were remembering all of the negative things about him and the ways he made us feel bad.

It was then I realized that happy endings have nothing to do with the things we obtain in life….. love, career, possessions…..it has everything to do with how we live our lives.  I hope my ending will be happy….that after I am gone from this earth, people will remember me fondly. I hope they will talk about my love for my family and my efforts to make this world a better place for my kiddo and others like him.

My grandfather lived to be 93…..he had 93 years to create a happy ending that just didn’t happen.  I think we need to stop searching for happy endings and simply start trying living happier lives before the ending comes.

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Unlocking the Senses

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I have come to the realization that I talk about sensory processing disorder (aka sensory integration disorder)quite a bit in this blog, yet I have never really explained what it is.  I know it sounds simple and straight forward…..it means our senses don’t work properly….but do you know how that can affect our daily lives? With our kiddos it can cause behaviors that we just don’t understand.  I came across a mom at a recent event whose child had sensory processing disorder and after talking for a bit, I found out that she didn’t even know what that diagnosis really meant.  I try not to get clinical on here….I am not a doctor.  I am just a mom who has lived with a child with sensory issues since the day he was born…..and I have done some research on the topic.  So I thought I would tell you what I know and how it’s related to my kiddo.

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Growing up we were taught that we had 5 senses; sight, sound, smell, taste, and touch.  When it was first suggested that CJ had sensory processing disorder, I thought that it was a no-brainer….of course he did.  He hated loud noises, I had to cut tags out of his clothes, his socks had to be turned inside out, he didn’t like his hair brushed…..he was the pickiest eater ever.  As he progressed through elementary school, these issues seemed to get worse, so I thought I would read into it a bit.  I was astonished at what I found out.  They LIED to us……yes, our kindergarten teachers that taught us about the 5 senses were lying. Ok….well, maybe they weren’t completely lying…..but they didn’t teach us everything.  There are 3 additional senses that I did not know about.  I am going to give you a run down of all 8 senses, their technical names (in case there are doctors out there confusing the hell out of you) and some of the challenges our kiddos face if they have challenges with that specific sense.

1- Visual – This, of course, has to do with our eyes….how we receive light and other visual stimuli. If your kiddo has a visual sensory challenge, bright lights or sunlight might be a problem for them.  Also, flashing lights….especially strobes, can send them into a tailspin. I have a friend who has challenges with light due to chronic migraines.  She uses low watt Christmas lights all over her house. That might help your kiddo, too.

2- Auditory – This is all about sound….but not only strength of sound, it can be about how that kiddo’s brain receives certain tones.  Basic challenges with auditory disorders can be problems with loud sounds.  I once read that you know your kiddo has SPD when their mom always has ear plugs in her purse….or has mastered the ‘flush and run’ in public bathrooms (these are both items I can check on my list).  When he was younger, my son hated the sound of the vacuum cleaner.  I would have my mom take my son outside the house when I wanted to vacuum. This also went for days I wanted to mow the lawn.  As he got older, I found that if he was in control of the noise, he was ok with it.  Once I taught him how, vacuuming was one of his favorite things to do…..you know, before he became a teenager that has an aversion to house work. Back on topic, though, sound is only part of auditory disorders.  The other part is how our kiddos hear things.  There may be certain tones and sounds that their brain just doesn’t process correctly.  It’s not that they don’t listen to us….sometimes they just simply can’t process what we are saying by how loudly or softly we are speaking or even how we are forming our words.

3- Olfactory – This is about the sense of smell.  This can be a challenging one….especially if you enjoy eating out. My son refuses to go into a Subway Sandwich shop because he doesn’t like the smell of the bread baking.  He loves the smell of things baking at home, but there is just something about that Subway bread he can’t stand.  When he was younger, he wouldn’t want me to light scented candles around the house. Even now, I usually run a scent by him before I buy it. There are some kiddos that have the opposite problem, they have an under-sensitive olfactory system. This can drive parents nuts, especially when it comes to hygiene and cleanliness.  This is not to be confused with smelly teenager syndrome……they can smell it, they just don’t care.

4- Gustatory – This all about oral senses and taste.  This really could be called the chicken nugget syndrome.  I don’t know what it is about those things….but so many kids with oral sensitivities will only eat chicken nuggets.  I once suggested to my son that he should write a blog all about chicken…the best franchises to eat them….the texture of the breading…..the spices used etc.  For years, my son was a chicken expert.  He has since become quite the foodie….but it took many years for that to happen.  This is also one of the sensory challenges I personally have.  Mine has to do specifically with texture. Unfortunately, there are many fruits and vegetables that I just don’t like the feeling of in my mouth. Onions, for example…..I love onions.  The flavor is wonderful…..but to get a big piece of onion in my mouth makes my skin crawl and will ruin my appetite for the rest of the day.  When I cook, I use big chunks, so I can get the flavor with out actually eating it.

5- Tactile – This is all about how we physically feel things, touch.  I have pictures of CJ when he was little, sitting on a beautiful green lawn, holding his hands up.  I have another one of him sitting in a pile of fall leaves, crying….with his hands up. And still another one sitting in snow….with his hands up. You get the picture.  He didn’t like the feeling of anything  that was in extreme contrast to his world. He loved the satin edging on his blankie, he loved to grip soft rubber toys….anything that was smooth.  If it was rough or contrasting in texture at all, he just didn’t like it.  To this day, he prefers to take a bath than a shower…..he used to say ‘the shower spray is pokey on my skin’.  An interesting analogy I heard about tactile disorder was to imagine a cold winter day, your heat isn’t working, you have to take a shower before work…..you step onto the cold shower floor, with the cold water pouring down on you feeling like little bits of icicles on your skin.  This is how tactile dysfunction is for our kiddos.  Everything is attacking them like a cold icy shower.

6- Vestibular – This is the sense of balance.  Do you have a kiddo that falls out of chairs for no reason?  Do you have a kiddo that can’t ride a bike….even with training wheels?  Do you have a kiddo that falls up the stairs? If so, that kid probably has vestibular challenges. This can be a hard one to deal with….and frustrating for a kid that just wants to fit in.  For the sake of full disclosure….CJ is the kiddo in every scenario above.  The hardest thing for him to deal with was riding a bike.  All of his friends would go bike riding and he just couldn’t do it, even with training wheels. By the time he was 8, he was starting to get ridiculed about it.  One of the things that I read helps with this is a trampoline.  It helps to adjust their internal balance.  I thought it was worth a try, so I enrolled him in gymnastics.  In about 6 months, he was riding that bike.  To this day, bike riding is one of his favorite things to do.

7-  Proprioception – This is all about the sense of space……or where their body is in conjunction with everything else around them.  The easiest way I have of explaining this is the line at the grocery store.  Do you have a kid that doesn’t understand that they are so close to the person ahead of you in line that they are practically hugging them?  Does your kiddo constantly get in trouble in school for touching his/her classmates in line (this is mostly for elementary school students)? They may not know how close they are to that other person.  Their sense of space…..or how much space is between them, may be skewed.  This one….along with vestibular challenges, tend to be the sensory issues that get kids in trouble most at school, especially for younger students.  They may be considered class clowns or a total clutz.  Either way they get laughed at by the students and reprimanded by teachers for something they are not in control of.  This can wreak havoc on a kiddo’s confidence and self-esteem.

8- Interoceptive – The trickiest of them all – this is the sense of what is going on internally.  I once read an explanation about interoceptive disorders being a comparison to a traffic jam.  The brain knows what it wants to do, but can’t relay the message to the rest of the body.  This type of disorder usually comes about in something called a sensory motor disorder.  One of the motor disorders that is really misunderstood is called dyspraxia.  This can effect the fine motor skills. As a part of this dysfunction, my son has something called dysgraphia.  This pretty much means that writing is a challenge.  Truthfully, it has taken many years of practice, but his hand writing still looks like a 2nd graders. It also takes him a long time to write one sentence.  This has hindered him in so many ways throughout his education.  His frustration with his writing has effected every class in the past(with the exception of technology classes).  Even though I have the use of a tablet/word processor written into his IEP, very few teachers actually read his IEP or follow it. Interoceptive disorders, specifically dyspraxia, tends to be the one that effects a child’s school experience the most.

For many of these sensory challenges, especially in younger kids, they don’t know how to deal with their body’s inability to react the way they want it to, so they end up frustrated and most often, having a tantrum.  The way I used to explain it to teachers was, imagine you were working at the computer and regardless of which key you pressed, it would just freeze up and you wouldn’t be able to accomplish anything…..would you be frustrated? This is how these kids feel when their brain doesn’t send the info to the rest of their body….like a frozen computer.

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Statistically speaking, 1 in 25 kids has some type of sensory processing disorder.  That’s 1 kid in every classroom……yet most people (especially teachers) don’t even know it exists. Kids with SPD are also very often misdiagnosed with ADHD. Doctors have a really hard time separating the two…..especially because a lot of kids with ADHD also have SPD. This also goes for people with  mental illnesses, neurological disorders and traumatic brain injuries. Sensory Processing Disorder isn’t even recognized as a true diagnosis….because it doesn’t have an ICD-9 code …..which is the bible of medical diagnoses. Because of this, when attempting to get evaluations or treatment by an occupational therapist (who most often deals with SPD) it is not covered by insurance.  When we were attempting to get my son’s first IEP, it was years before his bipolar diagnosis, so they gave him an ADHD diagnosis, because it was the only way to get him help in school.  They really need to recognize SPD as a true disorder of its own so more kids and their families can get help.  We also need to educate our educators so they know what to look for with these kids and can find better ways adjust their learning environments.

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For parents of SPD kiddos, it can cause frustrations because we don’t know what is sensory challenges and what is simply bad behavior. The best thing I ever read was The Sensory-Sensitive Child, by Drs Smith and Gouze.  They are both moms of kids living with these disorders.  Reading that book not only educated me on the senses, but opened my eyes to how I reacted to my son’s challenges.  I was no longer quick to reprimanded him or punished him for things that were beyond his control.  I, instead, looked at each action and tried to determine what caused it before I reacted to it.  I then learned what his triggers were and how I could help him in a positive way by teaching him coping skills. In the end, it changed our relationship for the better.

A Little Shellfish, Not So Crabby

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At the end of our NAMI meetings, one of the things we go around the room to ask is ‘What will you do for yourself in the coming weeks?”.  This is an important question.  Caregivers tend to forget to do things for themselves when their focus is on their loved one with challenges.  The things we do for ourselves help us to reduce the stress of our lives.  Being a little selfish is ok.  Helping ourselves, in-turn, helps our children. That statement goes for ALL parents, not just those with special needs kiddos.  Unfortunately, it’s a statement that I forget…..a lot. When it comes to the end of our meetings and that questions is asked, I usually have to search for an answer.  This week, I did 2 things for myself.

The first one was my hair.  I know, that may sound silly….but in my life, spending a day in a salon is not something that happens very often.  Not only did I get my hair done…..I had it colored pink.  I have done pink highlights for a few years now….but this time I went all in, and it made me so happy.  Every time I look in the mirror, I smile.  Isn’t that what self-care should do….make us feel better? Well, I feel better with pink hair. I know my grandmother will be disappointed, but she is not the one in the mirror looking back at me every day…..and it is that person who I need to make happy. We forget that sometimes….that our happiness is important.  We worry about what others will think….of us, of our kids, of our lives….but what matters most is what we think.  Do you like yourself?  Are you teaching your children to like themselves? Is your life bringing you joy?  These are the important things to remember.

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No, this is not an April Fool’s joke. 🙂

 

The second thing I did was take a class on suicide prevention in teenagers.  I know that may not sound like self care…but it actually makes me feel good to learn new things….any new thing.  I took the day off of work, my husband took on the drop off and pick up duties for my son and I left for the day…..to learn ways to help other kids in need. If that’s not a win-win, I don’t know what is.  I have spent so many years learning everything I can about mental illnesses and neurological disorders in children to help my son.  It makes me happy to use that knowledge to help other children and their parents.  This blog was the first step….and now I am getting ready for a few more steps in that direction.

I always say it is important to teach our children that they are not their illness….they should not let their illness define them.  They are so much more than that…..and so are we.  We are not just parents of special needs kids.  We are human beings that need to be a little selfish every once in a while….and that’s ok.

What will you do to take care of yourself this week?

 

*NAMI is the National Alliance on Mental Illness – To find a NAMI support group in your area, go to:
https://www.nami.org/

The Suicide prevention class I took was called Lifelines and it was provided by The Society for Prevention of Teen Suicide.  They also offer a free online certification training for educators on their website:

http://www.sptsusa.org/