She breezed out the door with a kiss and those words tossed over her shoulder to me. Something in me glittered and sparkled.
E. is my light and dark child. She is a study in extremes of emotion; peaks of giddiness and cavernous depression. Her life is dramatic and full of pitfalls she has overcome. My other children call me Mamma, but not E., she has her own name for me–Mamma Jo or Mommy.
The official diagnosis for E. is BiPolar NOS. with “Aspergers traits”. They won’t tackle the Aspergers Syndrome possibility until they get her fluctuating and dangerous moods under control. They do note many traits but not enough to meet the criteria for diagnosing Aspergers at this time. We have had Behavioral Therapy for her, with the focus being on Aspergers world weak points : social communications (eg: facial and verbal cues, how to answer a phone appropriately, how to make an appropriately handled phone call, how to make a new friend etc); physical movement , use of language; repetitive behaviors (eg: watching a movie six times in a row, allowing nothing but the food network on television) ; flexibility in expectations (eg: when a sudden change occurs having the coping skills not to melt down and to be able to fluctuate and move with the changes more easily such as schedule changes, or changes in how we set up for dinner etc). The BA came to our house once a week for a year and what an amazing set of coping skills E. learned during that time frame. She bonded with E. like no one else has since.
E. finally divulged during her breakdown at 10 years old that she was seeing and hearing things that may not be there in reality. She always had “imaginary friends” but I never understood that she really saw them or heard them. I thought when she was very small she had a quirky and morbid imagination (“Mamma, set a plate for Reesa, my friend, ok? She has a boo boo on her head ” “Link has an arrow in his neck” etc). I didn’t want to break her imagination but I was a little concerned about the morbidity of the “friends”. But she didn’t appear unhappy or afraid of them, so I tried only half-heartedly to turn her imaginary friends into li’l balls of sunshine….she would get belligerent and let me know that that’s not how it was AT ALL (her little hands on her hips). But the reality is from the first memory that she has, she has seen disfigured gory people who speak to her in languages she doesn’t understand. Sometimes they would talk to her and she couldn’t see them, other times they would plead with her for help. She started becoming afraid, she said, when she began to understand that others didn’t see them, too.
At this past Christmas, we had a frightening blowout of epic proportions. The difference in her usual meltdowns was pronounced and scary. E, her doctor and I had been discussing the drawbacks of the medication she was on and the possibility it wasn’t working well for her since early †October. She always was having trouble with compliance (which wasn’t really non-compliance so much as severe mania and losing track of what she is supposed to be doing) so we decided to discuss it after the holidays and she agreed to be better about taking her medication when I told her to do so, and not to fight me about “In a minute”. Well, the meltdown occurred before this could be attained. There were a lot of tears on E.’s end and on my own by the time New Years rolled around. State Troopers were called to bring her home from her father’s house. It was frightening. I spent many late nights just writing, cleaning and researching to keep busy and not lose my mind.
She agreed to speak with her old BA, “MK” only. She refused any other therapist etc. I was flabbergasted, I had no idea how to reach MK at all. No one would give me the info, it was private (obviously and with good reason). I called at 8:15 am to the clinic she and I both use that Monday to speak with her doctor on my way to pick up the custody papers that prove I have custody of her. The doctor was out, they transferred me to another person who has known me for many years. I told her the situation and she took the message down for Dr. but said, I will call you back by lunch time. I got my paperwork by some kind and generous people who found a way through red tape for me to get the legal papers, and came home . I had my coat off and was talking with E. when the phone rang and it was MK!! The person who said they would call me back did me one better, they found MK and gave her the story! MK spoke with E. for a moment and spoke with me, made arrangements to be her therapist on a weekly basis and got an appointment with her doctor.
E. went to her first therapy session with MK, then the next morning to see Dr. M, where MK joined us to help E. discuss some of what she is feeling and seeing. I talked about what I saw happen and she talked about what she saw happening and what she feels happened over Christmas. I asked about family history not only playing a part in diagnosis but in medication choices, I talked about the medication treadmill I had been on before they found Lamictal for me. The difference in my life, in my ultra rapid cycling, has been immense. He said that his next choice was Lamictal because it is a mood stabilizer, not an antipsychotic and he also wanted to know my med history.
She has been on the new medication and weening off Abilify for only a week now but the difference is slow and gentle. they said on average two weeks for change, but just the small dosage she is on and the lowering of the Abilify has slowed her ravenous appetite (she was eating, literally, every hour and it would have been more if I hadn’t put down hard and fast rules….which was one of the reasons for the huge meltdown int he first place), her mood is smoother changing and she is sunny without being over the top outrageous. Just to hear her say “Ok, let’s make a deal then…I will do the dishes you asked right now, afterwards can I go on my computer and watch a movie?” or to ask “May I cook an egg for breakfast?” may not sound like much to most people but when you live with an adolescent with egg shell mood fluctuations, it means the world to see them smoother. I can handle disagreements, I raised two other kids and was a nanny for a few families, I can handle kids. I know head butting and disagreements of who what where when and why. But to watch your child be so angry they break things, so sad they think terrible thoughts or so busy with the energy they can’t sleep or speak slowly enough to be understood is so saddening. Their whole quality of life is muddled and flighty. I want her to be able to feel more moments of clarity and contentment. I want her life to be less turbulent and more exciting.
So to have her blow out the door with her friend on their way to a birthday party and toss the words “I love you” to me of her own volition made my core glow.
I love you , too, Baby.
†December 7, 2016 Addendum: When this was written we were unaware of the true nature of E’s break down. The pieces now fit together, the combinations of what this child went through all these years and how strong she truly is and has been is remarkable. While, yes, she has a mood disorder, mild as it is, and is on the spectrum, has been bullied, these things were managable and dealt with … Mr. R. preyed on her, tipping her life over the edge. She has never had another bout of hallucinations since her first medication a year before the October written of, administered right after Mr. R. moved in, her initial suicidal time. She is no longer on any medication, hasn’t been since speaking out about her trauma. She knows her red flags and has the tools to go for help if and when she should ever need it. – C.