TNOYS is coordinating the Harris County Transition-Age Youth and Families initiative focused on youth and caregiver engagement to improve mental health services and supports for a young person’s successful transition to adulthood. We recently partnered with NAMI Greater Houston on a parents and caregivers-only workshop series and are excited to spotlight the experiences of one caregiver, Karen Chamblee.
As a mother of a 14 year old son suffering from a brain disorder I had two important conversations about two years ago that changed the direction of my son’s future and the climate of chaos in our home.
I was catching up with an old friend and confided in her about the problems we had been having with my son and how frustrated we were because we had been getting different diagnosis’ from various doctors and even his school diagnostician. I remembered this friend of mine taking some sort of medication, and I recalled that we had supported her when she walked in the NAMI Walk, NAMI’s yearly awareness campaign and fundraiser. At that time this pretty much made her a highly trained mental health professional in my opinion.
She shared with me that she was Bipolar. Wow! I had no idea. She told me a little about her past and how her symptoms were not always so well managed. She said her family had received help from a NAMI class, called “Family to Family,” which helps adult family members cope with a mental illnesses in their loved ones. She herself had taken classes offered through NAMI to learn about how to self manage her symptoms. My friend also told gave me a piece of advice I’ve never forgotten. She said, “stop focusing on his diagnosis and start focusing on his symptoms and how to make sense of them. You are a great mom and you can handle this.”
Looking back I was blissfully unaware of terms like anxiety and depression, ADHD, OCD, Bipolar Disorder, just to name a few. I had lived my life, up till now, genuinely creped out by the idea of mental illness. Now I was facing it head-on with my own child. Even the words “mental illness” just made me uncomfortable. It conjured up images of Hannibal Lector-type straight jackets and cold, sterile, mental institutions where people are walking into walls and talking to their dead husbands!
Nope. No thanks. Not me and not my kid! We’re all fine here.
I thanked my friend for her confidence in me and told her I would consider her advice. I thought to myself, “if things get bad enough you could reach out to NAMI. What do you have to lose?”
Not long after that discussion my son told me he hated himself and he wanted to die. I realized then that I did have something to lose. I could lose my son.
That’s when I made the call, the call that would change everything. I reached a nice lady by the name of Angelina Brown-Hudson. She is the director of Education at NAMI Greater Houston, the Houston Chapter of the National Alliance on Mental Illness. She told me that she herself was the mother of a child with a mental illness and she knew a little about what it was like to walk in my shoes.
We spoke for about an hour. I cried and she listened. She listened to my situation and learned all about my son, whose recent diagnosis of Asperger’s Syndrome on top of ADHD, anxiety and now finally depression, had turned my husband and I, and our entire home, upside-down.
I told Angelina it felt like my boy, and indeed our whole family, was shutting down. I even thought that I myself had begun to show signs of mental illness. I was pretty sure I was depressed, due to the huge stresses we were under. I wasn’t sleeping well at night. I took forever to fall asleep and then I’d wake up at the weirdest times unable to get back to sleep. I was having problems making the simplest of decisions and I seemed to always be angry. It felt like we were living a new life, someone else’s life. It felt like normal was gone.
Then there was the guilt, and guilt’s close friend, fear. Were we to blame for our child’s problems? How was he going to make his way through life? We felt like complete failures because of our inability to handle our son’s behavior problems.
We went to parenting classes after all! We should have this child-rearing thing figured out by now. After four children we had become baby whisperers, we knew how to get a baby to sleep through the night, how to figure out our child’s love language and how to parent with “love and logic.” But this, this unpredictable behavior that didn’t make any sense was just too much to bear. What could we do?
I didn’t admit it to Angelina but the truth is we were often extremely embarrassed about our son’s behavior. Sometimes we still are. And I’m not just talking about the kind of embarrassment you get when you have to carry your kicking and screaming, tired, toddler out of a store because you won’t buy him bubblegum.
Embarrassment causes isolation. We isolated ourselves from our family, our friends and our community of faith. Even our daughter felt embarrassed to invite friends to our home because she was so unsure of what the atmosphere would be like. How was she to explain her brother’s behavior? Essentially not only was the stress level in our home at an all-time high but every social experience we had was beginning to be affected. Any support network we had, was essentially gone. Getting a babysitter is hard and expensive to start with for 4 kids but try hiring one who you know will probably never come back again! I have never felt more alone. Sometimes I still do.
Our embarrassment had caused us a few problems. One year at a family holiday celebration, our son was having one of his “moments of madness.” He was roughhousing with a family member and his perception of play vs. reality got a little blurry. He punched our relative in the groin. This family member, who had initiated the rough housing, expected our son to be reprimanded. We reacted appropriately by talking with him privately and then punished him by giving him a time out. He ended up missing the prayer and much of our family dinner.
As a matter of pride we needed our family to know that we were “handling” our problems. But the reality was we had just sent an important message to our son. From now on his behavior challenges were going to cause him separation from our family. He learned that day that he is safer when he is alone. And this breaks my heart.
We had no idea how to handle this and so many other situations that arose with Tim. Soon we just avoided most large gatherings, family or not, for fear of repeat situations that we were poorly equipped to handle. We had no idea how to explain to our son’s behavior to our family members. Come to think of it, we are still learning what behaviors are legitimately punishable and what is just a sign or symptom of his disorder? Either way, we still occasionally feel judged and blamed for our permissiveness and/or failure to control our son’s behavior.
To be fair, I did fill Angelina in a little more about who my son is. I told her what a sweet nature he has and how he is often described as a gentle giant with a very sensitive heart. He is also incredibly creative and can play “Star Wars” for hours on the floor with his huge collection of action figures. This boy makes up the most elaborate dramas that are born out of the original Star Wars trilogy. I’m pretty sure George Lucas himself would love to have 5 minutes with my son.
What I was trying to communicate to Angelina is that we did remember an easier time before our diagnosis. I suppose that is what made this “new normal” so hard. Mental illnesses have a way of manifesting during childhood and adolescence. It’s not something children are born with in the sense that the doctor does a forehead test and say’s, “congratulations, Mr. and Mrs. Newparent, you have a bouncy baby boy who is also a little bit mentally ill!”
The truth is our son was a great baby and up until recently had been a pretty easy-going child. As long as he was occupied with his interest he was happy. This is actually still true today in many ways. He has always been an introvert and somewhat quirky about certain things. There are things he doesn’t tolerate well and we have learned to avoid his triggers, which thankfully are not many. For instance, he hates fireworks and any loud noises.
As I mentioned, he also has had some very intense interests, mini obsessions, if you will. In preschool he loved Thomas the Train. In elementary school he was very captivated by the weather and would become anxious during storms. I remember he would watch the Weather Channel and the local radar exclusively for hours. Along with Star Wars and a brief stint with Pokemon, his most recent interest /passion is the video game, Minecraft. He spends most of his free time playing this game, upwards of 5 hours per day. He could be the poster child for the Obama government initiative, “Let’s Move,” that tries to get our nation’s tech savvy children “up and moving.” He has always had a difficult time balancing the important things like homework and self care with the addiction and allure of his intense interests.
In my desperate attempt to reach out, I explained that one of the reasons we were feeling so helpless was that we noticed that his level of frustration and intolerance was rising to the point of scary behavior. We were actually becoming afraid of him.
He is a pretty big kid, and though he hadn’t hurt anyone he would threaten his brothers and “play” too hard with them. Some times he would even act out in direct anger at them. He even began to be verbally abusive to the family dog and chase him around the house to intimidate him. He liked to walk around with sticks and would also intimidate children in the neighborhood if they annoyed him.
At the same time he had begun to be bullied at school and in our neighborhood. One recent summer he was chased home by a group of boys who threw fire works at him on the 4th of July. He has been bullied at school and sometimes even by his own little brothers who have a hard time understanding his special treatment and limitations. Sadly, our son was not getting positive peer interaction with anyone, not even his own family.
Finally, I shared with Angelina a little more about what the final straw had been. Why I had to make this call. If my son was talking about why he didn’t want to live anymore it was time for help. Actually, no, it was beyond time for help.
That day Angelina told me about a class that NAMI offers, called NAMI Basics, which gives support to parents who are navigating mental illness in their child or adolescent. In my case I knew I needed help to come to terms with my child’s diagnosis and figure out how to help him and find peace for our family again.
Angelina told me that NAMI Basics was a very comprehensive class that would allow me to gather more information about my son’s conditions and meet others who I could relate to. And the class was due to start soon. There was a pretty big time commitment, 6 weeks for 3 hours per week. That was pretty big considering that free time in a family of 6 was already pretty hard to come by. But something told me we couldn’t go on the way we had been.
Another plus? It was FREE! The professional help we had been paying for so far was adding up to more than $500 per month! Yes, I could definitely handle free!
As I said before, I didn’t know it at the time but my son’s life and the strife we all felt in our family was about to change. And I’m so glad I made that call.
Karen is a busy mother of four who lives in Katy, Tx and usually enjoys her children. Sometimes she gets to take a bubble bath, alone.