Life in the Dream House II
This is part two of a series where Heather shares her story of being a mother of two daughters with chronic illness. If you missed part one you can find it here.
The year following Jewel's diagnosis of early onset mental illness didn’t get easier because we had a psychiatrist. It didn’t get better because we knew there was something “wrong.” It didn't get better because we had support from family.
We didn't tell our families.
When a child is diagnosed with cancer you tell everyone. People bring food and offer to help. Even when a child is diagnosed with Autism you tell people and they offer compassion if not understanding. When a child is diagnosed with childhood mental illness it comes with an immense amount of shame and guilt. The few family members we told were the opposite of supportive. They told us we were making a mistake to say our child had “mental illness.” They blamed us for her “behavior.” They screamed and cried at us to the point where we couldn't discuss the situation with them anymore. When a child is diagnosed with Autism there are support groups and therapies. That is not the case with mental illness. There's no one to call when she doesn’t sleep for days at a time. It's just me. There’s no one to call when moods are cycling faster that a mom can keep track of. It’s just me.
Two years after Jewel’s initial “light diagnosis,” as they called it, she was having weekly visits with a therapist and monthly visits with the psychiatrist to check her medications. I was having weekly visits with her therapist, monthly visits with her psychiatrist and weekly visits with my husband and a marriage counselor. Like mothering, I wasn't especially good at marriage--and neither was he. It seemed like we were always at therapy. It also seemed like it did not help enough.
Out of complete desperation I took Jewel to an integrative doctor in our area. She had chronic migraines, constipation that landed us is the ER on multiple occasions, and did I mention I was desperate? He ran lots of blood work, and started her on lots of supplements. He was very knowledgeable about so many things but specialized in Lyme disease. Lyme disease is a tricky illness with outdated tests to confirm, complicated political connections and not great treatment plans. Jewel ended up testing positive for Lyme disease. Chronic Lyme disease is a controversial diagnosis with varying treatments. I believe in the next 10 years it will become an accepted diagnosis among physicians and the CDC. Lawmakers are currently working to make it an accepted diagnosis that will be covered by insurance. Currently though, it is not a diagnosis covered by health insurance.
Symptoms of chronic Lyme disease differ from person to person. Jewel’s symptoms are chronic migraines, digestive issues, Lyme rage, fatigue, body aches, neurological skin pain, brain fog, distraction, and sleep issues to name a few. Jewel had been having daily headaches for many months and I didn’t realize they were migraines. When I realized that we added in three times weekly chiropractic adjustments.
The treatment for Lyme varies. We started with supplements to support her immune system and then immunotherapy. Similar to allergy shots, immunotherapy tries to reteach the body to recognize Lyme as an intruder and attack the Lyme disease rather than the body itself. Jewel received a “shot” under her skin every eight weeks. It hurts as much as a bee sting. The doctor and I gave Jewel the choice of having the immunotherapy in shot form or in a liquid form she could swallow. She ask which one would work better. When the doctor told her the shot would work better she chose that even though it hurt immensely. Every eight weeks she would ice up her arm and we would go and get her shot. She would bravely hold out her arm for the RN to administer the medication. As much as I wanted her to have a bit of relief from her neurological and physical symptoms she wanted it even more. Jewel continued these treatments for the next 24 months. We saw improvement in her rages, concentration and nerve pain. Near the end of the two years she started developing new negative symptoms and we’ve currently taken a break from immunotherapy. I do believe it has improved her symptoms, but there’s always that voice in my head that says “maybe we're just seeing maturity.”
Life is not cut and dry or black and white. Sometimes it isn’t clear what is working, but it’s impossible not to continue fighting. At our house we are warriors.
When Jewel was 10 I noticed if I would touch her it helped her stay focused better and I began to consider she may have sensory processing disorder. I took her to the pediatrician and asked about Autism. Her pediatrician asked me why I thought she might have that and we discussed the SPD signs, the tantrums and anxiety. The pediatrician said she didn't see Autism at all in Jewel but she did refer us to a therapy center for evaluations for speech, occupational therapy and physical therapy. The testing was difficult to watch. I realized Jewel had regressed in some of her fine motor skills and gross motor skills. The child that could write her name at 3 years old couldn't follow a printed line with her pencil. The child that could run and kick a ball at 2 years old couldn’t walk on a line on the floor. She was unable to coordinate bouncing a ball with a consistent beat. The evaluations confirmed Sensory Processing disorder and gross and fine motor regression. For three months Jewel had twice weekly occupational therapy sessions to calm down her nervous system. I learned to implement a sensory diet at home. A sensory diet is planned sensory activities for a child with SPD. They help the body to calm down and lessen meltdowns. I learned that often Jewel’s tantrums were not tantrums but meltdowns. She was overwhelmed by her surroundings and did not know how to manage the overwhelm. With the sensory diet I saw a calmer Jewel emerge. She had been crying for an hour before every shower. After implementing the sensory diet that stopped. She’d been refusing to brush her hair. After the sensory diet she would willingly brush her hair. We added an indoor trampoline to our living room. Then exercise balls. And then a swing attached to the beam in the ceiling. After about three months of twice weekly private occupational and physical therapy sessions Jewel joined a socialization class that met once a week for a year where they worked with the kids on interacting appropriately. Because of the SPD, if someone bumps into Jewel it feels like a push. If someone touches her it feels like a hard poke. Her response to this is often to yell or hit. These were things they worked on in class.
Jewel’s life consisted of counseling once weekly, chiropractor three times a week, therapy for her SPD twice a week or socialization class once a week,
immunotherapy every eight weeks and monthly meetings with the psychiatrist. These things were on top of school, music lessons, church and friends. Our schedule was difficult. We were constantly packing up and heading to appointments. I spent all of my free time calling doctors, insurance, and pharmacies. At first I told myself “it’s a season of my life, it will pass.” But it didn't pass. Months turned into years. I got tired. I gained weight. I didn't sleep. I spent all of my time researching ways to help Jewel. I was fighting for her life. I knew the way she was currently, would not lead to a successful adult life. I felt it would lead to her being in and out of mental institutions or in jail.
I was fighting for my smart, beautiful, little Jewel; the child I had longed for; the one I had prayed for. She was barely 10 years old and it already felt like I’d lost her.
With documentation of SPD and regression I made what felt like a million phone calls and got insurance to approve an appointment with a neuropsychologist. As soon as we met I knew he could help. Finally. Three years, thousands and thousands of dollars, and more desperation than I knew existed, and we landed somewhere that said, “We’re here. We can help.” He wasn't overwhelmed by Jewel. He’d dealt with kids with early onset mental illness. He’d treated chronic Lyme and believed it was real. After six plus hours of testing and evaluations he diagnosed Jewel with...did you guess it? Autism. The thing I spent 10 years dreading, and guess what else? I was glad. Something I had feared so much became a relief. It felt affirming to hear someone “in the know” give a specific diagnosis, but it also meant that insurance would pay for more of the behavioral treatments that she needed. It also meant that it was OK that this was so hard. He was excited to tell me that Jewel had Autism and bipolar disorder which in 20 years of being a neuro psych he’d never diagnosed together. It feels funny to me to think about his excitement over that. Doctors seem to like it when they see things they don't see often or ever. I think a lot of specialists are just nerds. You would think this would be a crushing diagnosis. But it wasn't. I already knew these things about Jewel. I knew her mind was different than other kids. I knew it was beautiful in a way I didn't expect. The diagnosis wouldn't change what I was doing, but it would change how doctors and therapist treated my Jewel. With a legitimate diagnosis of ASD and specific mood disorder diagnosed by a reputable local doctor services and help became much easier to access. There were finally people to call and ways to get help.
It’s been just over a year since Jewel’s diagnosis of ASD and Bipolar Disorder. In that year Jewel has had weekly visits with a therapist and a behavioral therapist and continued her monthly visits with the psychiatrist. We’ve been able to lower the number of tantrums she has to nearly zero per week. We have plans in place on how to deal with certain behaviors and specific activities to help manage meltdowns. We have support from her therapists and psychiatrist. We've even been open with our families and found them open and supportive.
Every day is still hard.
We are constantly doing sensory activities, mindfulness activities, yoga, physical exercise, redirecting, socially coaching and practicing, medication adjustments, calling doctors, pharmacies and holding one another while we cry. Jewel’s migraines are all but gone. She only needs to see the chiropractor twice a month to keep them manageable. Her concentration has increased to the point she can usually complete an entire assignment in one sitting. This is the first year of school I can say that and she's in 6th grade.
I’ve given a lot of thought to what people will think about my sharing this and simply what people will think about this because of what it is. In my mind I’ve heard “Why would you share this? Why make public things that are so private?” After weeks of thought I have answers to those questions. My answer is, why wouldn't I share? If my child was diagnosed with Diabetes or Cancer, no one would ask me why I was talking about it. There wouldn’t be shame associated with sharing our experiences. To me, and to science, illness of the brain, or diversity of the brain, is the same as illness of the mind or diversity of the body. It’s well past time society catches up with science and accepts people who are different from them. I’m tired of people whispering “mental illness,” “mental health,” “counseling” and the like. All of these things have been a part of my life since I was an adolescent. They will be a part of my children’s lives from the beginning to the end. There's a mass of people whose lives are intertwined in a complicated web of illness and diversity and I’m tired of the shame. I’m here to start liberating those who are in the shadows and afraid to come out. Im here for those afraid of stigma, labels, rejection, the judgement and even job loss. Neurodiversity is something to embrace about ourselves and our loved ones. It starts by loving the things about ourselves that are not typical and finding the good in those differences. Without neurodiversity we would be lacking scientists, mathematicians, artists, musicians, and a beautiful array of colorful people in our lives. Maybe today embrace the differences in yourselves and in your loved ones without trying to change them.
Richard Rohr says we ought to appreciate people the way we appreciate trees; by simply taking in their beauty and not trying to change them. Let's all try that today.