Posts tagged ‘parenting’
“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.
Here in Georgia:
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.
Once I became the parent of a child with a mental illness and neurological issues, I started seeing them everywhere. If you have a family member with any type of diagnosis, you know what I mean. You start diagnosing everyone you come in contact with. Even more than the world around me, I started to notice things in the worlds I escaped into…..books and movies all of a sudden had underlying themes of depression or emotional challenges. Movies I watched as a kid and loved, no longer had as much joy to them; they were filled with sadness and struggles.
Last week I watched Shall We Dance?……the Richard Gere version. It is a movie I had seen many times and never thought much about. There is a line toward the end, after Gere’s character, John Clark’s, wife finds out he has been taking dance lessons secretly. He says “If I sometimes couldn’t tell you that I wasn’t happy it is because I didn’t want to hurt the person I treasure most in the world”.
Now, it probably isn’t surprising to you that I think John Clark was dealing with a horrible depression….and dancing was his anti-depressant. Once his family found out, he was ashamed……not only of the sadness, but of the fact that the people he loved weren’t the ones he chose to help him through it. The reason for this is that he had so much, he felt guilty that they weren’t enough to make him happy.
Why I am I breaking down this Saturday afternoon matinée to you all? Well, I think it is a good way to explain why parents are sometimes the last ones to know that their child has been dealing with depression. Suicide has become an epidemic in our country….especially for teenagers and young adults. According to the CDC, approximately 4600 young people between the ages of 10-24 take their lives every year. Last year, Ebola took 2 lives in our country and it was headline news…..people were talking about it….everywhere. Why don’t we talk about the 4600 young people losing their lives?
There are so many people out there thinking “not my kid”. Honestly, a lot of the teenagers that are attempting or following through with their suicide plans are kids that no body would expect to. Honor society, athletes, class officers, club presidents…..no one is immune to depression. It’s these kids I fear for the most, they are alone in their struggle. So many times we hear about a young person taking their life and people around them say, I thought he was fine or I thought she was happy. They kept their sadness hidden from the people they loved……why? I think so many of them were like John Clark, afraid to tell anyone that, even with all of the good in their lives, they still aren’t happy.
My son is diagnosed with bipolar disorder. In a way, that makes me one of the lucky parents. I know what to look for in my son’s moods. I know what changes in his temperament might mean. I also make sure to talk to my son about his emotions on a regular basis. In truth, in our house, we talk about emotions just as often as we have precautionary conversations about drugs, sex or social media. Would I have included it in our regular conversation if he didn’t have a diagnosis? Probably not. Nobody would have clued me in on the importance of mental health education to our kids. Even once I had a child with a mental health diagnosis, I had no suggestions on how to talk to my son about his feelings. I was handed a prescription and told to call if it didn’t help. If I didn’t start doing research on my own as to how to effectively communicate with my son, I would probably have had a child that is one of the 4600.
We need to talk to our children……all of us…..and we need to start when they are young. We need to let them know that sadness is a normal part of growing up, but sometimes it can get so bad that we have a hard time finding happiness again. As they get older, we need to explain a little more in-depth about depression and how it can affect people. Not only so they know for themselves, but so they can be aware of changes in their friends, too. We need to let them know that we will listen without judgement and help them in any way we can.
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
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.
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.
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.
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/