When I think about how much we have experienced in a year since Boogie’s diagnosis, I feel as though we have lived 10 years in the space of one. So much has happened that I haven’t taken the time to write about. If you have been following me from the beginning, then you know about the diagnosis, the insurance complications, finally starting ABA. There have been many blog posts about these things. There have been a few blog posts about day to day life. Even with all that, I have left so much out— all the in betweens.
I believe I wrote a bit about Boogie’s lack of sleep as a baby. This is what I personally believe triggered the gene responsible for autisim. That, however, is really a post for another day. This is about how her lack of sleep created a lack of sleep in me. I have always been one who needs little sleep. I dealt with (and still do) insomnia for years. So, five hours of sleep has always been about enough. I could routinely function on three or four, even two hours for a few days. Boogie, however, slept in thirty, sixty, and ninety minute cycles. So, I would get the baby to sleep —-which typically took around 2 hours— and then I would pump. (Why was I pumping? Because after my c-section, we allowed the nurses to take Boogie for a bath. Mr. Boogie and I both crashed. We had been awake for over thirty hours, and prior to that had only been asleep about three hours. So, we crashed. And the nurses fed Boogie a bottle. I was determined to breast feed. When Boogie proved to be either over stimulated —and thus unable to focus to nurse, or under stimulated— and thus too sleepy to even latch on, I chose to pump. It mattered to me that my child be breastfed.) Pumping took about thirty minutes. And so once I was done with that, if Boogie was still sleeping, I would lay down to sleep. And my mind would be afraid that if I managed to fall asleep, I was so tired, I might not wake up when Boogie woke up. So I would drift in and out of sleep. This went on for almost two years. When Mr. Boogie was home, I would sleep. When my Mom was able to come and take over, I would sleep. Otherwise, I shuffled through, existing in this strange state of never getting even two hours of straight sleep, of always being half awake even when I was “sleeping” and of always, always being terrified that if I actually fell asleep, I might not wake up when Boogie did. I could see it in my mind, my poor, already too sensitive, easily upset girl, laying in bed sobbing and her Mama not coming to her. I could not allow this to happen. It was my worst nightmare— not being there for my child.
This lack of sleep created issues for me. I had constant migraines. I couldn’t wear contacts anymore because it felt as thought I was putting glass shards in my eyes. I was overly forgetful, and I would repeat myself often. Sometimes, I would awaken stiff and sore, and the soreness wouldn’t leave for days. Boogie needed to be held constantly. Sometimes, even the holding and the rocking and the walking and the bouncing wouldn’t calm her. But, I felt that at least she would know her Mama was trying to comfort her. Holding her for hours, my arms would go numb. I became a total klutz. Knocking into things, bumping into walls, dropping things. I chalked it all up to being tired, and continued on as best I could.
In the spring of 2013, just before Boogie was diagnosed, we were down at the beach in our neighborhood. After swimmimg, we were letting Boogie play on the playground. Mr. Boogie said something to get a rise out of me, and when I punched him in the arm, he took off running. I flew after him. He had the advantage with long legs, but I was fast. Just as I almost caught up to him, I tripped on a tree root, twisted my left leg and the whole left side of. my body and went flying. I landed face down, like a belly flop onto hard green grass. I ended up with several minor injuries and a lot of pain. So, I was given a prescription pain med. And suddenly, all the aches and pains I had been experiencing for over a year, were dulled. The pain I had been in, the pain I hadn’t even realized I was experiencing was suddenly and wonderfully reduced to background noise.
I eventually made an appointment with my doctor. It was an appointment that I would cancel and reschedule many times. We had so much going on. Boogie was in full challenge mode, just getting her dressed was an exercise in patience and perseverance. Then there was a diagnosis. Then there was the discovery that Mr. Boogie’s employer was a self-funded, federally regulated health insurance plan. And so, they wee exempt from the state mandated autism coverage. Then there was the realization that we were not going to get the company to adopt coverage anytime soon. Then there was the fight to get myself and Boogie removed from the health insurance plan outside of open enrollment. Then there was the switching of insurance, and knowing that if I went to the doctor, I could not afford to have a preexisting medical condition because if and when we switched back to the company provided healthcare, Mr. Boogie did not need two dependents being charged for preexisting conditions. Then there was the realization that the new insurance had
lied to us, the freaking jerks misled us, and they were, in fact not contracted with anyone but the awful ABA provider who I would never subject my child to in a million years. Then there was the pushing and fighting to get the center we wanted added to the insurance. Then there was the driving an hour each way, five days a week to ABA. There was the constant fatigue, almost like a layer of tiredness wrapping around me and digging it’s hooks in so deep, it was a fight each day to not fall asleep in the middle of conversations, driving, swimmimg, even walking. And finally, finally, I couldn’t do it anymore, and I kept my doctor appointment.
I am not much of a drama queen, not like I was back in high school or college, but I was really afraid that something was really wrong with me. My doctor is seriously the best doctor I have ever met, and that includes my daughter’s pediatrician. She is very real, and so incredibly non-judgmental. And so, I told her everything, including my fears that I was really really sick. And then Dr. S diagnosed me with fibromyalgia. And so began a new chapter of life, one of being a mommy and homemaker, one of caring for a high needs child, but also one of caring for myself.
I was lucky, incredibly lucky that we had a child care giver who would be able to help me daily. And when we chose to enroll back in the insurance provided by Mr. Boogie’s work, she was able to take Boogie to ABA and watch and learn, so that when January rolled around, she and I would be providing ABA for Boogie.
Since my diagnosis I have had bad times and good times. I’m blessed with a husband who understands, a nanny/ABA therapist who is wonderful and helpful, a doctor who is fantastic, an osteopathic pain doctor who has done wonders for me and a physical therapist who is helping me learn new ways to take care of my body.
So, since I have started this blog, a lot has changed in our lives. I’m learning to slow down, to stop and take care of myself. I’m trying to control my obsessive need for things to be neat and perfect. Life is messy. Life with autism and fibromyalgia is really messy. And so, Mr. Boogie, Boogie and I are learning together how to live this wonderfully messy life.