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

Archive for April, 2014

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?

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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.

 

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My Note to Teachers, Administrators and Parents

We had an incident happen with one of my son’s teachers last week. She said something defeating and borderline cruel.  It ended up in a meeting with the principal to get some more information. I really try to avoid principal meetings if I can, but this case warranted such an action.  After it was all smoothed over, it got me to thinking. Teachers all studied and took the time to invest in their education to make this their career, so why are some of them so indifferent to their students? Didn’t they start teaching to make a positive impact on young lives?

After letting this stew in my head and fume over it for a couple of days, my anger at this woman lessened and I started to think a little differently.  We, as parents of special needs kids, expect teachers to be flexible and understanding that our children learn differently……yet, we are not flexible and understanding when teachers aren’t able to teach differently.  I am not saying that all teachers are the best fit for special needs students, but it doesn’t mean that they are bad teachers.

Teachers

I try to teach my son that he needs to respect his teachers and school administrators, even if he doesn’t agree with them or understand their motives. I want him to know that, in life, he is going to come across people that he will not work well with; it doesn’t mean that he shouldn’t try. I feel the same should go for the teachers.  Every year you have multiple students walk into your classroom. Odds are that there are some personalities you are not going to like……there are some you are going to hate, but it doesn’t mean that they deserve less of your respect or effort.

I am also aware that teachers have a lot on their plate. I have heard that parent communication is the least of their worries. In this day and age, where electronic media is at your finger-tips, it should not be as challenging as it was when we were kids. If you are teaching special needs kids, it should be a given that you will need to fit some time into your day to communicate with parents.  Of my son’s core classes, he is struggling with 2.  I have been told his grades reflect work missed due to absences. When he is absent, I email teachers to get assignments he can do at home. The classes he has trouble with are with the teachers that rarely respond to me….if ever. I feel that this is not a coincidence.

Administrators

My son is in an inclusion group that is part of a modified special ed program at his school.  They are in mainstream classes, most of which have an aide there if needed.  There is one inclusion team per grade. My suggestion to administrators is take the time in picking your inclusion teachers.  Get information from parents of students that have had that teacher to get a feel for their patience level and teaching style before having them work with special needs kids. It will not only help the kids, but it will help the teachers, too. If you have teachers that don’t work well in this type of situation, they are simply going to be miserable…..and that will carry over into their other classes and students as well.

Parents

Our kids sometimes perceive things a bit differently than they actually happen.  Before you jump to conclusions about anything at school, ask questions instead of throwing accusations.  Instead of starting a conversation with “my child said you…….” you can say “I would like to discuss the conversation you had with my child. I was hoping you could shed some light on what was said”.  The difference is discussing what happened rather than putting them on the defensive.  This way, you are also including the teacher in finding a solution for future interactions with your child, instead of criticizing them for poor job performance…..which, let’s face it, is what parents are doing every time we complain to a teacher.

I am not saying that we should not advocate for our children. Believe me, my son’s teachers know me well.  I will be the first person to call them on wrong or hurtful actions……but I also call my son out as well. Parents have started to look to teachers to blame them for our children’s poor choices at school. Parents need to step up and realize that our children are far from perfect.  Yes, for special needs kids, their challenges may play a part in that, but our parenting plays an even bigger part.

Is this always easy? No, of course not. Believe me, I had trouble sending my son to school this morning knowing that for the next month he is going to have to work with a teacher that used threats and put downs as motivation. I can only hope that this makes him stronger and he can prove her wrong. Show her that he is worthy of her respect and that he is not less than.

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All kids, special needs or not, learn by example.  If the adults in their lives, parents, teachers and administrators, don’t step up and do better, we are doing these kids a disservice.

 

The Common Core Conundrum

My son, CJ, is failing math. This month he has to take the GA state CRCT (criterion referenced competency test) and I was told that if he does not get a passing grade in math, he will not make it through to high school.  This has me worried for many reasons.  I don’t think holding him back is going to help him perform better next year…..in fact, I think he will end up being bored with learning all of the same things over again and be even more of a challenge in the classroom than he already is. My other concern is that, if he is held back, that has him turning 18 in the end of his junior year……and it will be out of my control to keep him in school if he decides to drop out. You see, there are days when he is determined to graduate.  There are even days when he talks about college. More often than not, he tells me that he wishes he could drop out now.

Up until 7th grade, CJ always did well in regard to math. Actually, until 6th grade, it was his best subject. Last year that all changed.  That was the year we moved to GA, and that was also the year they initiated the lovely thing we know as common core (could you hear the sarcasm?).  He was dropped into a program that was playing catch up to try to meet the standards that they were already behind on.  Because of this, they are moving so fast that many of the kids can’t seem to catch up.  When my son started to fall behind even further, he gave up.  This year they put him in a smaller secondary class to try to help him learn skills he was missing, he passed without a problem, but it still didn’t help him in his regular math class…..because he learns differently than the way his teacher is providing the information.

From what we are experiencing with CJ, I think common core is disastrous for kids with special needs or learning disabilities.  They usually need ‘out-of-the-box’ methods to help them understand things and common core does not allow that.  My feeling is that this is simply because the teachers are held to testing ‘checkpoints’ along the way and have to move faster to meet those testing standards, they can only take the time to teach using ‘in-the-box’ curriculum. I don’t think this is necessarily the fault of the teachers, it is the common core standard that has them backed into a corner. I have read that common core is simply about the standard requirements, not the methods, however, I have heard and read about many teachers that say it doesn’t allow them the freedom to teach to the best of their abilities.

It’s not just kids with special needs, I know many children without learning challenges that are struggling in math since they have implemented common core.  In fact, I received an email from CJ’s teacher last month stating that 90% of her students had not performed as expected on a recent unit test that was taken on a Friday. She then sent a link to a Powerpoint presentation to help them study and asked the parents to have these kids do an on-line retest, because she needed to start the next unit on Monday and didn’t want them to fall behind.  I wanted to scream……….90% of the kids did poorly, yet they were expected to understand what she was unable to teach them in a Powerpoint presentation???? On top of that, they had to keep moving forward within 2 days.

I have to admit, I have trouble understanding algebra.  For me, my inability to do algebraic equations has not hindered me in life. I graduated from art school. I have a great job that helps provide for my family.  I am actually really good with numbers…..but put them in a ridiculous sentence where I have to find a, b, x or y and I am lost.  I am far from stupid; I am simply a visual thinker.  There are many people out there that are like me.  If I was put in my son’s class right now, I would most definitely struggle because the teacher wouldn’t have the time to show us ‘visual thinkers’ an alternate way of learning the information. If every student is expected to learn the same way, you are setting them up for failure.

I have read articles and watched videos on common core. One of the simplest ways they used to explain it was by showing a stair case.  Just like every house is designed with a different style of staircase, each state has different levels of requirement in education.  What they are trying to do is get every state’s staircase to match, so that when kids get to the landing at each grade level in MO their knowledge matches the kids on the same landing in MA.

Ok, here is my problem with that……..even if I agreed with the common core principle. If this standard was implemented starting with 1st grade and then adding a grade each year following, by the time these kids got to middle school or high school, they might all be on the same page, or at least in the same vicinity.  When you implement this across the board and, in the same year, expect middle school or high school students to meet the standards that equal those in Shanghai where they have been implementing this type of standard for years, you’re kidding yourselves……and placing way too much pressure on these kids.  It’s simply too much, too fast……for the students and the teachers.  They are back-tracking and trying to fill in years of gaps in information.

Here is another issue I have. Not every kid is going to be taking the same staircase after they graduate, why on earth are we expecting them to do that while they are in school? Success to some students might be college, medical school or a law degree, but to others it is working with animals, building cars or designing landscapes. For some special needs kids success is maintaining a job, being self-sufficient, balancing a checkbook and paying bills on their own.

In my opinion, by holding them to the common core standards;  we are not giving each child the tools that they need to be successful in THEIR lives, we are expecting them to accept the only tools that are being offered to become the government’s standard of what they think successful should be.

 

The Friend Factor

As parents of special needs kids, we go for very long periods of time wondering if our kiddos will find a friend to truly bond with.  If your situation is in any way similar to mine, your kiddo probably had a couple of good friends in their younger years, since the younger ones seem to over-look your child’s quirks and differences.  As they get older, and especially into the middle school years, the bullying is terrible and even the kids that aren’t doing the bullying tend to distance themselves from anyone who is deemed ‘weird’ so they, themselves aren’t put in the bully’s path. It gets to a point where you hope that your child will find a friend, any friend at all.  I used to feel that way.  I soon learned that I rather have him be the loner kid than to have the wrong friends.

After I remarried, we moved 3 hours away from the one best friend my son, CJ, had since kindergarten.  He had to start all over in a new school with new kids.  By this point in time, he had an IEP and the teachers removed him from the classroom on a regular basis to take tests or to go to the OT.  At 10, he was very aware that he was different from the other kids……and if he wasn’t, they made sure he knew it.  It took his school being shut down and merged with another school due to budget cuts, for him to meet a couple of boys that he got along with.  At first, I thought this was a wonderful thing.  I soon learned that my son wasn’t having as hard of a time with bullies, because these boys WERE the bullies in school.  It’s hard when you have a child that wants to be liked so badly, but you know that the kids that he is spending time with aren’t going to be the best influence on him.

I was nervous when we made the decision to move to Georgia. CJ would have to start all over, yet again.  This was either going to be disastrous or the best thing for our family, but we wouldn’t know until we tried.  Because we still had to sell the house in NY, we initially lived in an apartment complex.  My husband moved here a couple of months before my son and I, so he was able to get an apartment before we got here.  As soon as we pulled up, I had an uneasy feeling about the place.  It was clean and well-maintained, but I just had one of those gut instincts that this place was not going to be a part of our lives for very long.  I was right, we only lived there for about 6 months, but in the end it brought my son a very special person in his life.

Megan

After living in the apartment for a couple of weeks, CJ had adapted to having playmates right outside his door.  Something he had never had before.  Most of them were younger, as this was usually the case with my son.  We have found that younger kids tend to be less judgemental  regarding  his behaviors.  Even though he was enjoying himself, we had daily drama. Whether it was sensory issues due to tackle football, emotional issues because somebody ‘hated’ him or a complete meltdown because an older group of bullies threw his bike in the lake, every day I had a tear-ridden child walk in my door.  That all changed the day he met Megan.

Megan and CJ became fast friends and found solace in each other’s company when the other kids would gang up on them.  She started spending a lot of time at our apartment, playing video games or watching movies.  I started taking them both roller-skating once a week and she would come for dinner a couple of nights a week.  This started my reference to her as our ‘bonus kid’.

When we bought our new home last March, we quickly dubbed our guest room as Megan’s room, since she is the one that utilizes it more often than anyone else.  She spends a lot of weekends with us, and she and CJ have started to go to Sunday youth group together. Megan and her mom have both become an extension of our family.

The best thing about CJ and Megan’s friendship is that it is real.  His psychologist has met Megan and has said she is the best kind of friend that CJ could have.  She calls him out when he is being manipulative or cruel and she makes him own up to his mistakes.  She does all of this while appreciating him for who he is.  They have come to love each other and act like siblings. They fight and make up on a regular basis, but they always fall back on the strength of their friendship. Their true test of friendship will come when Megan joins us on a 2 week road trip this summer.  I think, in the end, they will bond even more over the memories they will make.

Dylan

After my son’s hospital stay in the fall of 2012, he was just starting at a new middle school. He kept his head down for the first month or so, afraid to meet new people. Just after the Thanksgiving break, CJ started mentioning Dylan. They were mainly school friends for the rest of the year.  When summer break started to near, CJ was upset at the thought of not getting to hang out with Dylan every day.  He came home one Friday and asked if he could go to a karaoke night at Dylan’s house.  It confused me a bit as to why my son with stage-fright wanted to go to a karaoke night, but I said that he could go as long as I met one of Dylan’s parents. That evening I met Dylan and his mom, Juanita, for the first time and little did I know our family had just grown a bit more.

One of the things that CJ had never mentioned to me, probably because it wasn’t important to him, was that Dylan is on the Autism spectrum, along with a host of other diagnoses. Juanita and I quickly bonded over the journeys we both have taken over the years in our efforts to advocate for our sons.  Our whole family, including our bonus kid, started participating in weekly karaoke night.  Through them, we have met many other families that are going through the same struggles.

In school, CJ and Dylan have become each other’s constant.  If one of them is out for some reason, the other one has a hard day.  According to their teachers, they have started a healthy competition in regard to getting work done, which has helped them both.  Our plan was to have CJ to go to a certain high school in the area, but he has asked me to alter my plans so that he and Dylan could be in high school together. I am still considering this.

Following a manic episode a few weeks ago, I could not help my son feel better.  He wanted out of the house.  I called Juanita and she told us to come on over.  After a few minutes talking to Dylan, CJ was calm and ready to go home.  After we got in the car, he took a deep breath and said “Thank you,Mama. Dylan just gets me”.

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My wish for all of you is that your kiddos find friends who love them and just ‘get’ them.

I have utilized the kid’s names with permission of their parents. 

 

Animal Adventures

This week was spring break for my son.  He spent most of it playing in his game room and in the back yard. By Friday, I knew I had to get him out of the house.  I work from home, so I logged off early and made a plan to go on a little adventure.  As I mentioned in a previous post, my son loves animals of all kinds, so we had a weekend of animal adventures.

Noah’s Ark

If you are in the greater Atlanta area, I suggest you take a day and experience Noah’s Ark Animal Sanctuary.  It is a non-profit that provides a home for abused, unwanted,  or  special need wild animals.  They do not charge admission, but instead work based on donations.   For parents of kiddos with challenges, it is a great alternative to Zoo Atlanta.  Don’t get me wrong, we love the zoo and are members there, but if you have a child with special needs it can be overwhelming.  Noah’s Ark has wide pathways, tons of benches for regular ‘breaks’, picnic tables and a playground.

I loaded my son and my bonus kid (one of my son’s best friends) into the van and drove the 30 minutes to the park.  My son was grumbling about going on a mom planned adventure.  As soon as he got out of the car that all changed when he saw a peacock walking in front of him. I think my son appreciated it a bit more knowing that the animals were in a home, being loved regardless of their special needs.  We ended up having a wonderful afternoon walking amongst the animals.

Grey’s Land

About a month ago, our psychiatrist suggested we look into a therapy dog to calm my son through anxiety attacks and following manic episodes.  I have done a lot of research regarding therapy dog programs and truthfully, I think my son needs a companion dog more than a therapy dog.  I wouldn’t want us to go on a waiting list for one of these trained dogs and have somebody that needed it more to have to wait even longer.

After thinking about it for quiet sometime, I realized that breed is the most important aspect of having a calm companion dog.  In the past, my mom was an avid rescuer and had a multitude of dogs of all ages and breeds.  My favorite was her greyhound, Stevie, who had been a retired track rescue.  I remembered him being the calmest dog I had ever known.

We decided to schedule an appointment  and yesterday we took a drive up to Stone Mountain and visit Adopt a Greyhound Atlanta, otherwise known as Grey’s Land.  We not only met adoptable dogs, but others that were there being boarded.  They all had such great temperament and made our afternoon so enjoyable.

I think we, as a family, have decided that this is definitely the breed for us. It will take us a while to work on some responsibility rules with my son and find a dog that is the right personality fit.  I have a feeling that the summer will be quite another animal adventure.

***** Noah’s Ark is located in Locust Grove, GA

http://www.noahs-ark.org/

***** Adopt a Greyhound Atlanta is located in Stone Mountain, GA

http://www.greyhounds2.org/

 

The Worry Wart

If worry actually caused warts, I could give a toad a run for his money.

I don’t think I was always a worrier.  In fact, when I was younger I took life in stride. I didn’t stress over grades or what people thought of me too much.  I was content to be who I was, never tried to fit into a mold or a group. As I got older, work came pretty easily to me. I didn’t have anxiety when it came to paying bills, although maybe I should have. I went along my day-to-day on a pretty even keel.

That all changed the day I found out I was pregnant with my son.  I had a pretty difficult pregnancy and I worried that everything I did, or didn’t do, would cause more problems.  By the time I ended up in the hospital at 30 weeks with preeclampsia, the doctors spent time trying to convince me that it wasn’t my fault.  Something I didn’t believe until I did more research into it at a later date.

From there it was worrying about a premature baby, all the health issues that came with that.  Then it was being in a difficult marriage and subsequent divorce. Follow that up with 8 years of being a single parent with a special needs child, absolute nausea over my ability to pay all my bills, all while I was working with doctors trying to figure out my son’s diagnosis…..or diagnoses as it turned out.

Eventually, somewhere along the way I went from that even keeled girl to a person that stressed about everything.  I worry about things that haven’t even happened yet.  I don’t sleep because I fear what will come tomorrow.

There are many parents of kids with mental illness or neurological issues that understand what I am talking about.  So many people complain about having a routine, monotonous day.  We would love that.  I would love to be in the movie Groundhog day and wake up knowing what to expect from the day, to have the ability to do whatever I wanted to change its outcome simply because I know what’s coming.  Instead, we wake up every morning not knowing what is around the corner.  Will it be a calm day or will there be a storm?  If there is a storm, will it be mild, or will it be destructive?

As I lay down in bed each night, I worry about tomorrow. Worrying about the next day leads to worries about next week and next month and next year.  I start to worry about how my son will function in the future.  Will he need to stay home with us, or will he be able to be on his own?

Ever since my experience with preeclampsia, I have dealt with high blood pressure.  I am sure parenting a bipolar child has not helped the situation. My current doctor has added a mild anti-depressant to my bp meds in an effort to deal with stress a bit better.  It seems to be working, my bp is lower than it has been in almost 15 years.  It hasn’t helped my worrying though.

I guess being a worry wart is now a part of me, just like the many other aspects of my personality that has changed during this journey with my son. I have also become a stronger, more determined person than I ever thought I could be.  I guess you just sometimes have to take the bad with the good.

Food, Glorious Food

We recently went to see a local production of Oliver!, the musical based on Oliver Twist. When they started singing ‘Food, Glorious Food’ I turned to my son and said “Hey, they’re singing your song”.  He usually doesn’t think I have a sense of humor, but this one made him laugh.

When my son was young, I worried about his eating habits.  Being born so premature, he had issues with his gag reflex and could not eat anything but puree into his 16th month.  As he got older, his sensory issues caused him to have problems with many textures. For parents of sensory kids you know that, for many of them, their major food group is chicken nuggets.  This was true for my son.  I have actually joked with him that he should write a blog review of all of the chicken nuggets and tenders in the major franchise restaurants of the U.S.

Now, at the age of 14, he has found many more foods that he enjoys eating.  He loves seafood, chicken, beef, pork and most pasta dishes. We still have struggles with textures of certain fruits, vegetables and grains, but generally, he has more variety than I ever thought he would have.

Our main problems come with the incredible amount of food he eats.  Yes, I know, I know, he is 14 and that’s what 14-year-old boys do, right. Yes, to a certain degree.  We started seeing a major change when he started his first med, Risperdal. One of the main side effects was increased appetite……and they weren’t joking.  I know some families that have taken their kids off this med due to the weight gain it initially can cause.  For us, the weight wasn’t a big issue.  Ever since he was a baby, my son was always underweight.  The gain from the med actually brought him up to a normal weight for his age.  It was the food habits that threw us. The intense inhaling of food, it was non-stop eating all day, every day.

I have spoken with other parents who’s kids have this issue and some of them actually go shopping every day and only buy food one meal at a time.  It amazes me that they can not only find time in their day to do that, but can afford to do that. I have taken to coupon shopping and buying items in bulk.  It helps to have a membership at Sam’s club, where I can get snack foods in individual serving packages, this cuts down on eating a whole box of cheezits or a bag of chex mix at one time. For special treats, I tend to buy them around the time we are going to eat them.  For example, if I am going to buy ice cream, it will be on a Friday, because I know that Saturday my son will probably have a friend over and we might want ice cream if we all watch a movie.  If I purchase it any earlier in the week, it won’t be there on Saturday.  My son’s major addiction is to Cadbury mini eggs.  Last year, I bought a bunch of little bags when they were on clearance after Easter and kept them hidden in a bin in my closet, that way I could give him one at a time.  I grew up in a house where we rarely had snacks or treats around and I think it led to my major sweet tooth as I got older. I don’t think it’s a good idea to remove these things all together…..I just don’t want him to eat them in one sitting, but I feel horrible having to hide food.

I know that his eating issues are a combination of his medication, his recent growth spurt and the fact that he is a 14-year-old boy. I just hope that it will eventually even out.  I have a long history of high blood pressure and diabetes in my family.  I am afraid that if he doesn’t slow down or doesn’t add more exercise into the mix, he will end up with physical health issues on top of his mental health issues.  I think I am going to implement an exercise rule this summer.  He has to let me take him to the gym every day if he wants computer time.  I don’t know if it will work, but if it does, at least it will make up a little bit for his caloric intake.

Any thoughts on tricks or tools that worked for anyone trying to moderate their child’s food intake would be greatly appreciated.