This week’s Mental Health Blogger Of The Week is Chrisa Hickey of The Mindstorm . Chrisa is the mother to three teenagers, one of whom has been diagnosed with schizoaffective disorder. She blogs about what it is like to be the mother of a child with a mental illness, and the impact that it has on her family. I have found her blog extremely interesting to read.
Chrisa took the time to answer some questions I had for her.
At what age was your son diagnosed with schizoaffective disorder?
Tim had a lot of different diagnoses that led up to his diagnosis with Schizoaffective Disorder. At age 4 he was diagnosed PDD-NOS, and Autism Spectrum Disorder – which I always was puzzled by, because the neurologist literally said to me, “I’d say he was Autistic, but he has excellent eye contact and a good sense of humor,” which are kind of two hallmark symptoms of an ASD. At age 6 it was a Mixed Expressive/Receptive Language Disorder, then that and a Sensory Integration Disorder. By age 8 it was Mood Disorder – NOS (my three least favorite letters in the English language), then at 10 it was Bipolar Disorder – NOS, Bipolar Disorder Type 1 by 11, Bipolar Disorder Type 1 with Psychotic Features by age 12, then Schizoaffective Disorder, Bipolar Subtype by age 14. Three independent psychiatrists, a neuropsychologist, two therapists and an LCSW all agree on that diagnosis. I’m a firm believer in third and fourth opinions.
What was the first indication you had that there was something different about your son?
Probably at about age 2. Tim was a good baby and was developmentally on track until he was about a year old. We were worried that, while he seemed to understand what we talked to him about, he didn’t speak a word. He smiled and cooed and screamed at the appropriate times, but didn’t even say Dada. We brought it up to our pediatrician at every visit, but he chalked it up to Younger Sibling Syndrome – our oldest son “translating” for Tim so he didn’t have a need to speak. But Tim was easily frustrated too, and not the usual terrible two tantrums. On his first day of Pre-K we asked the teacher to tell us if she thought Tim might have some learning issues. She called before noon.
What thoughts went through your mind when you first learned of your son’s diagnosis?
Which one? I remember when we went from Mood Disorder to Bipolar. Tim’s therapist was trying to get me to wrap my head around the idea that Tim needed to be hospitalized and probably on medication. When it finally penetrated that he had a mental illness and needed more intense care, even if short term, she sprung the, “and this probably won’t be his last hospitalization,” on me. I flipped out. Tom (my husband) and I didn’t sleep that first night he was inpatient. We’d failed. We were the worst parents in the world. His birth parents would want him back because we’d screwed up. A lot of self-loathing.
In what ways, if any, do you believe your life has changed since his diagnosis?
It’s changed a lot. I’ve become a walking Physician’s Desk Reference. Tom quit his job and became a stay at home Dad when we realized something was up with Tim at age 2. By age 8, it was apparent that was a permanent change to our family structure. We left California because we felt we couldn’t get the services Tim needed. We started educating ourselves, and then advocating, first for Tim, then for all kids like Tim.
What are some positive things you have learned about yourself since his diagnosis?
That I have more patience than I thought I had. That I can multi-task well. That my marriage is incredibly strong. That I don’t need to do it all by myself ( I’m still digesting that last one).
In what ways do you think your son’s illness affects your mental health?
During the very unstable years, it had an impact on the entire family’s mental health. Our oldest child spent as much time as he could out – at school, at activities, at friends, at work. Our daughter started exhibiting symptoms of PTSD and anxiety. I spent a year on antidepressants. I talk a lot in my blog about how I need to be well – how any parent raising a child with a mental health issue – needs to take care of themselves, and not let it get to the point of depression, anxiety, and despair. The hard times are hard.
What are your wishes/hopes/prayers for your son?
I hope that one day he can live semi-independently, have a life that he feels is fun and fulfilling, and understand that he is not his illness.
For you personally, what do you consider a life lived well?
When I was young and Tom and I were first married, I thought it was to be a Captain of Industry. I strived to reach the top of the corporate ladder, because I thought that was the meaning of success. Now, older and wiser, I strive to be the kind of mom that my children would like to be to their children.
If given the opportunity, what is something you would like to say to someone who has had a child recently diagnosed with a mental health issue/mental illness?
I co-moderate two online support groups for The Child and Adolescent Bipolar Foundation, and when we get a new member I usually say, your child is not his or her diagnosis. Yes – it is life-altering news. But that doesn’t mean our children can’t have full, meaningful lives.
Have you or your family/son ever been the victim of stigma with regards to his illness?
With Tim’s full knowledge and permission, we don’t let ourselves be in that situation. I am very vocal about Tim’s condition because I believe knowledge is power. That being said, Tim has experienced bullying because of his illness.
Something personal you might want to share about you and your son’s journey through life.
I spend a lot of time talking about the tough part of life with Tim, but Tim is one of the three coolest kids I know. He’s charmed every adult he’s ever met, even the nurses on the wards who’ve dealt with him inpatient when he’s been ragingly psychotic. He’s very creative and funny. I actually want him to live right next door for the rest of my life.
What prompted you to begin bogging about your son and his health issue?
It was a mental health exercise for me. I’ve been journaling all my life, but I started a blog as a marketing tool for a company I used to work for. I wrote blog posts for that, when my mom said she always liked reading what I write, why didn’t I put my journal about Tim online? So I did.