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

Posts tagged ‘OCD’

Unlocking the Senses

sensory

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.

********

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.

 ********

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.

SID1

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.

The Long Road to Relaxation

It was supposed to be a 4 hour ride.  I finished work at 3pm and the kiddo and I hopped into the already packed van.  We headed out to pick up my bonus kid, Megan and then to the campus where my husband works to add him to our troupe of travelers.  By the time we left campus and made our way into the Atlanta traffic, we were already later than planned…..it was the start of rush hour on rt285.  Anybody that has ever driven in Atlanta knows that there is no point to even say you are actually driving….because the truth is you are sitting in a parking lot….sometimes getting the opportunity to creep forward for a few feet. It was about 30 minutes into our traffic sitting that I looked at my husband and said,” I hate driving in this, why didn’t I make you drive, again?” . He responded “I was wondering the same thing”.

I had mapped out our trip and we had the GPS in my van….but he decided to use the GPS in his phone….which took us a completely different way than I had planned. We had 2 teenagers grumbling in the back seat, asking how long it would take to get there. One of CJ’s wonderful OCD tendencies is to fixate on time.  If the trip is supposed to take 4 hours, then, according to him, we should be there in 4 hours.  No amount of traffic or the fact that he drank 6 bottles of water and had to stop to use the bathroom 3 times, would convince him that we weren’t going to be ‘on time’.

Into the mountains we went. The moon rose and was a glorious light to drive by.  The kids finally took a nap and it was peaceful for the last hour of the trip.  As we drove through the mountain town and pulled up to the hotel, at almost 9:30pm, the long ride was worth it. The kids were in awe of the mountain retreat, aptly named Montreat. They said it was like we were in a castle and I would have to agree.

montreat

Montreat Conference Center, NC

It may have taken us a while to get here, but hopefully we will all find a little peace and relaxation with some other members of our church family. There are more adventures in store for us, I am sure, before the course of this weekend is over.

Don’t Touch My Stuff

I wrote yesterday about changes needed by all adults in order to help our kids navigate school. What about at home?

I know we, as parents, try to teach our challenged kids about appropriate social behaviors, cleanliness and manners. Sometimes they absorb our words…..other times it’s like talking to a brick wall.  They do the same things over and over again and it can drive you batty. I have found that sometimes we have to take a step back and look at the things they do from their perspective.  Sometimes, there is a method behind their madness.  It doesn’t always make sense to us, but it is there.

A place for everything and everything in its place

I don’t know if any of you remember, but there was an episode of the Jetson’s where Rosie the Robot had a bolt loose and ended up with OCD that got so bad she over-loaded.  Every time one of her family members moved something or made a mess, she sped after them saying “A place for everything and everything in its place”.

This is how I feel if I help my son clean his bedroom or game room.  I take so much time to help him organize that, once things are caught up in the tornado that takes 10 seconds to destroy a day’s work, I feel like bolts and springs are going to fly out of my ears, just like Rosie’s.

It is a common tendency among kids with mental illness or neurological disorders to be cluttered and messy. They fight us on the idea of cleaning up their mess.  If it is clean it takes them a matter of seconds to rip it apart again. Why do they do this?

I honestly don’t think they do this out of defiance…..well, not all the time anyway.  I think it is all about control. They can’t control the fact that they have this illness or disorder. They can’t control that their lives are dictated by doctor’s appointments, medication or ‘special’ classes at school. Their space is what they can control, what they can take ownership in.  Good, bad or ugly, sometimes very ugly, their mess is sometimes their constant…..their comfort……their control over a little piece of their world.

Don’t We All Want Control?

I did a little experiment this week.  I posed 5 questions to friends on FB and suggested they then share the questions to their friends, which some did. They were questions regarding things people tend to control in their lives. The first few questions were basics, Which way to you place the toilet paper roll? Do you separate your darks from whites while doing laundry? Do you keep your car clean? These all came back with simple responses. Most of the answers were, over, no and no. One word, straight to the point answers.

The last two questions I posed a little differently, How do you feel when somebody moves things around in your kitchen? and How do you feel if somebody moves things around on your work desk? These got passionate responses like ‘I hate it’, ‘leave my space alone’ or ‘don’t touch it if you want to live’.  If we are all so passionate about people touching our ‘stuff’, then why do we get so upset if our kids are passionate about their space and the stuff in it?

*******************

Since I have been thinking about my son’s messiness this way, it hasn’t bothered me as much.  Am I still going to try to teach him to be more organized? Yes. Am I still going to argue with him about food and garbage being left out overnight? Most definitely. Am I going to let bolts and springs fly out of my ears by getting frustrated with his clutter? I am going to try not to. After all, I need all my pieces and parts in order to survive this journey…….and to help him survive it, too.

 

The Never Ending Duel

Most kids have interests and hobbies that they focus on. Whether it be sports, music, art or games, everyone can find something to fill their free time with.  Parents of kids with neurological disorders or mental illnesses know that things go a little farther than ‘interest’ in our worlds.  Our kids are more than interested in something, they are usually obsessed.

Obsessed: To think and talk about someone or something too much

My son’s obsession is called YuGiOh.  It started as a Japanese manga series, which then turned into a dueling card game, video games, movies and graphic novels (aka comic books…….although I have been told multiple times that manga and comic books are two different things….they’re really not).

This obsession started when a family member bought him his first card deck about 9 years ago. It became part of his daily language. It was all he would talk about to me, to family members, to teachers.  My son has so many cards now that I don’t think I could count them……truthfully, I wouldn’t want to try because that would mean I would have to gather them from every corner of my house.  His main deck has his most prized cards in it and goes everywhere with him, whether he will be playing or not.

Some people have learned to use this obsession to their advantage.  My son has had teachers bargain with him, if he would do his classwork, they would sit down with him during free time and he could teach them YuGiOh.  He has also had therapists use it as a way to communicate with him during counseling sessions by asking him what he likes about it, or if he connects with certain characters.

I have tried to understand this game, to participate in this obsession with him.  I just can’t wrap my head around it.  My son laughs at me and tells me that it’s as easy as playing UNO….it’s not. For anyone out there that has seen a dueling game, you know that each card has its own set of functions, which can make things quite confusing.  It amazes me that a kid that can’t remember his multiplication facts, can memorize all of these cards and their rules.

I sometimes wonder if this game is a metaphor for our life. I am battling for every little bit of normalcy I can create in our lives. As much as he says he loves normal moments, he fights them on a daily basis. It makes me think that this obsession of his has taught him how to live life in a constant duel.

Maybe I should have pushed Legos on him a bit more.  If he was obsessed with those, maybe he would feel like building things up instead of breaking them down……..

………but then again, Legos can be really painful when you step on them in the middle of the night while trying to navigate the disaster of a bipolar kid’s bedroom.

A Stormy Journey

My intention of this blog is to write about topics that explore behaviors of kids with bipolar disorder……and behaviors of teenagers in general. However, to understand where I am coming from, I am aware that you first need to get to know us and our journey to this point. My first couple of posts will be stories explaining how we finally got my son’s diagnosis and our fun adventures with the medical community (Yes, Sheldon, that was sarcasm).

In the words of Julie Andrews…….let’s start at the very beginning……a very good place to start.

My son has never been good on timing. He is usually either really fast or really slow. After a very difficult pregnancy, I ended up in the hospital with preeclampsia.  My son was born 10 weeks early weighing 2lbs 15oz.  After a 7 weeks stay in the NICU, he arrived home on Mother’s day 2000.

The early stages of his life were hard, simply because he had a lot of catching up to do. Being fed with a tube for many weeks damaged his gag reflex, so eating was a challenge.  He had issues with noises, which I connected to his weeks in a silent NICU. He rolled over, sat up and walked behind schedule, as was to be expected.  The one thing where he was ahead of the game on was talking…..he was a fast talker….and still is.

The first time we noticed something was a little different emotionally was around the age of 3.  He was a particular child, liked things a certain way.  I really didn’t give it much thought….I mean, he was 3, what 3-year-old doesn’t like things their way?  Then, one day, we were at the doctor’s office, he went into the play area and proceeded to have a tantrum because they reorganized it and moved the play kitchen from one side of the area to the other.  It was then that his doctor asked me how often tantrums like this happened.  When I told her it was on a regular basis, she suggested I keep a journal and track these types of tantrums; she was concerned that he had OCD.  I noticed it happening more and more often over the next couple of years.  He would get upset if I picked him up from daycare and had to stop at the store or bank on the way home. Dora the Explorer was starting to become popular at that time, so I started a game with him in the fashion of a Dora song that would list the places we needed to go on the way home. He seemed to be ok with that…..unless I went in the wrong order. I had to figure out little ways to make his ‘order’ of things ok and still move along with my daily life.

When he was 5, he and I moved out-of-state.  It was expensive to be a single parent where we lived in Connecticut.  I moved us to a small town in upstate New York, where I could afford to have a place of my own. This move also meant my mom would be nearby, which proved to be invaluable. I was worried that this would disrupt his routine, but he adapted well……. initially.

When it came time to start kindergarten that fall, I realized how far behind he was developmentally.  He loved words, but didn’t even attempt reading. When he would read a book it was from memory, having heard me read them to him many times and connecting parts of the story with the pictures on the page.  Writing was an incredible challenge for him. He couldn’t tie his shoes or button his pants.  It seemed that anything that had to do with fine motor skills caused him frustration.  That was the year that the meltdowns started. He had always had tantrums…..what kid doesn’t, but these violent meltdowns were something else entirely.  They didn’t happen at school, always at home, they were always violent, with me being the target…they were a precursor of what was to come.

By the time my son was 7, his meltdowns were happening on a regular basis……at least 4 times a week and they would last for up to 3 hours. They were usually very loud and very violent. I didn’t know what was causing them, but I knew these weren’t normal childhood tantrums. A friend of mine suggested I have his doctor evaluate him to determine a course of action. At that stage, my son was terrified of doctors. When he was 5 he had his routine shots and ended up getting scarlet fever a week later.  Although the shot had nothing to do with the illness, he always associated the 2 and has had a needle phobia ever since.  He always thought that going to the doctor’s meant getting a shot, and thus would fight every time we went. The day we went for his evaluation was no different.  Luckily, I had my mom with me. She has always been able to talk him down out of a panic. He seemed to be fine walking into the waiting room, but once he and I went into the exam room the meltdown started.  It was so violent and so severe that the doctor wouldn’t even walk into the room.  He sent a nurse in to tell me that she had called ahead to the psychiatric intake at the ER and wanted me to take my son there. The fact that the doctor wouldn’t even walk into the room infuriated me, needless to say, we never went back to that office.

The minute we got into the car to head to the hospital, my son became completely calm. He understood that we were going to the ER and why, but the hospital didn’t seem to scare him as much as the doctor’s office did. I can only attribute this to the fact that I worked at a hospital for years, so it seemed like a ‘safe’ place to him.  When we walked into the ER and explained who we were, they seemed confused. In front of them was this happy, smiling child, who was being chatty and sociable with everyone around him, not the crazed, demon child described to them by the pediatrician. After talking to multiple people, the doctor on call gave us the information for a local psychologist and said that he thought my son had Asperger’s syndrome.  I had never heard of Asperger’s before.  I immediately went home and did an online search. When I came across the term ‘Autism Spectrum’ I was floored.   I had met children with autism, I had seen the movie Rain Man, that was not my son.  I know now that there are so many different levels of autism on the spectrum, I did not know that then.  The only thing I knew was that my son did not fit the image of Autism that was in my head.

We scheduled an appointment to see the psychologist the hospital referred us to. The day we met her, I knew in my heart she was going to help us….and she did…..to a certain degree.  She was the one who  completed the evaluation we initially went to the pediatrician for.  Based on her results, my son fit a lot of criteria for Asperger’s, but was far too social and engaging to actually be diagnosed with that.  Her final conclusion was that my son was a jigsaw puzzle.  I asked her then if she thought it was bipolar disorder.  I knew there was family history and I had done my research on symptoms.  She told me that children rarely had bipolar and since my son didn’t have cycles the way bipolar patients normally do, she was positive that wasn’t his diagnosis.  I have always known that doctors can’t know everything.  They all still have learning to do, but it was this instance that I reflect on that always makes me second guess physicians a bit…..it also makes me trust my mother’s intuition.  She did help him in other ways, even if she was not able to figure out his actual diagnosis.  She taught him coping skills and helped him with self-confidence.  She taught him how to communicate his feelings.  He felt safe talking to her about everything and for that I will be eternally grateful.  He is now able to articulate his emotions and fears better than most kids his age, regardless of his diagnosis.

After the incident that sent us to the hospital, we needed a new primary doctor and his psychologist suggested a developmental pediatrician that was located in Ithaca, NY.  It was a bit of a drive from our small town, but I figured it was worth it if this doctor could help. After reading the psychologist’s reports and having a long interview with me, this doctor determined that my son had ADHD and wanted to start him on medication immediately.  The ADHD diagnosis confused me. My son could sit and focus better than most adults…….when it came to things that interested him. Also, I was always wary of meds, so this made me nervous, but I knew the struggle my son was having on a regular basis, I ended up giving the green light and crossed my fingers that this would make both our lives better……..it didn’t.