by Band Back Together | Sep 20, 2010 | NICU, Post-Traumatic Stress Disorder, Special Needs Parenting |
The first time I saw a brain, a real brain, suspended in some greenish liquid at the front of my gross anatomy lab, I stood there, staring at it for a good long while. I was long past being disgusted by the organs of the human body, and seeing the folds of the creamy white tissue struck me only with a sense of wonder. This was it, right there: all that you were, all that you thought, all that made you you was right there in that innocuous looking organ.
Really, it could have been a football for as glamorous as it looked.
But to know how it worked, studying the nuances of neurology, that is poetry. All of the mysteries that we still do not know about how the synapses fire to make one person want to maim and dismember and one person want to paint the Sistine Chapel, that is beauty. The smooth folds folding seamlessly into each other made up separate and distinct parts of the brain and instinctively I rattled them off in my head as I examined the brain in the jar: the cerebral cortex, responsible for how we are feeling, our emotions. Those that make someone laugh or weep, smile or scream, right there.
The parietal lobe, which is how we use all of our senses at once to make decisions, the back of the head responsible for sight, the very sense I was using to examine the brain I was so enthralled by. Without it, I wouldn’t be able to drive a car, see the deep brown of my son’s eyes, the bright red of the fall leaves outside of the classroom. One by one, I observed all of these structures on that brain, carefully preserved in formalin in a jar labeled ABBY NORMAL.
How could something that looked like a Nerf ball be so mystifying and so shockingly resplendent in it’s simplicity at the same time? Something that made each of us who we are should have looked unique, special, like a jewel and somehow, the more brains I saw, the more I realized that they all looked pretty much the same.
Maybe it’s what we do with those hunks of white matter that contains the beauty, because with the exception of the cerebellum (which is surprisingly beautiful), it’s a highly understated organ, especially when compared to something flashy like the kidneys.
When my daughter was born with part of her brain hanging jauntily out of the back of her head, the doctors pretty much shrugged their shoulders when we asked what that meant about her future. While she showed no signs of neurological damage, she could be profoundly normal or profoundly retarded, it simply wasn’t something that could be determined by a blood test or an MRI.
Up until she was a year old, Amelia was followed by Early Intervention, who came every couple of months, tested her, declared her normal and left. When she turned a year, I figured it was probably time to let them close the case on her for now and promise to make a call back if something changed. I know the drill with special needs kids well enough, and her medical diagnosis is an immediate qualifier for assistance.
It’s taken me until now to realize that there is actually something wrong with her beautiful brain.
Amelia has no words.
She has no words.
No glorious words, the very thing that I make my (pathetic) living from, she has none. I’ve always derived so much happiness in putting together combination of words to titillate, horrify, or move people, and she has not one word.
She’s had words before, they’ve slipped out of her mouth for a couple of days until it appears that she forgets them and goes back to shrieking and grunting to get her point across. In many ways, this terrifies me more than seeing my mute autistic son did, because it seems as though she has words, then loses them again.
It’s time to call the specialists back in and help my daughter find her words.
For good, this time.
I have a lot of delicious combinations to teach her.
by Band Back Together | Sep 9, 2010 | Reactive Attachment Disorder, Special Needs Parenting |
I am the mother of a RADish.
A RADish is a child with Reactive Attachment Disorder (RAD). RAD is an attachment disorder that results from a traumatic event in a child’s early life. Elle was adopted from Russia and spent the first nine months of her life in an orphanage. Her birth mother delivered her, terminated her parental rights, and left Elle at the hospital. A month later, she made her way into the Baby House in Kursk, Russia.
The orphanage was nice, as orphanages go. It was clean, old and colorful in a Russian kind of way with fairy-tale murals painted on the walls. But an orphanage is an orphanage, with too many children and not enough warm, loving arms to go around. When I first saw Elle, she was expressionless. The eyes that looked back at me had no emotion, just a blank face. The only time I ever saw her laugh or smile was when she was walking. She didn’t particularly like to be held or rocked. She was independent at an early age.
I thought all of this was normal for a child, and for Elle. What did I have to compare her to? We started having problems with her when she was 5, the summer before she started Kindergarten. She would become sullen and withdrawn if things didn’t go her way. She started taking things…from stores, my room, etc. She would argue until the cows came home and dinner was a nightmare. When she was really angry she would mark on the walls with chapstick and rub Vaseline all over her bathroom.
When we adopted Bunny, she took Bunny’s things and hid them. All the while denying that she had done anything wrong. Then she started taking food. She would get up in the middle of the night and raid food out of the pantry. Not just chips and cookies, but powdered jell-o, baking chocolate, and sugar. We found leftover chicken and frozen salmon stashed away in her closet, along with things she had stolen out of my bedroom and office.
It came to a head when we decided to move a year ago. I received a call from the school’s safety officer. Elle had admitted to stealing two cell phones and an iPod. The iPod was hidden in her closet and I could bring it back to school. As you can imagine our horror, we could see a life of police stations, courts and jail in her future. We couldn’t understand it. She is incredibly intelligent and charming. What is wrong with our child?
She had been in therapy for a few years, but we weren’t making any progress. It was finally suggested that Elle’s issues were beyond our therapist’s experience and we needed to look for a different one. Life was unimaginable in our house, Elle was out of control and I wasn’t seeing much joy or hope. We took her to another therapist who diagnosed her with bipolar disorder…based on a 50-minute discussion with us.
No, something wasn’t right with this. Consequently, we never went back and kept looking for an answer.
I finally stumbled across it while searching the internet. Reactive Attachment Disorder. It gave a list of behaviors and almost every one fit Elle to a tee. We read, and read, and then read some more. Could this be it? Fortunately, there were a couple of therapists in town who specialized in RAD. A couple of phone calls later and we had a new therapist.
The therapist began working with Colby and I. The first behavior to change had to be ours. We needed to learn to parent differently and be a rock-solid unit before we could even tackle Elle’s issues. Then we started to work on Elle. We learned about the Circle of Trust and how with Elle, her circle had been broken.
When “normal” babies cry, their mothers respond and meet their needs. The baby is happy and learns to trust that mommy will always be there to provide for them. Not so with RAD children. Their circle has been broken. Elle cried, but because of multiple caregivers, her needs were not met. She learned she couldn’t trust anyone would meet her needs, so she learned to provide for herself…because she was the only one she could trust.
She carries around a lot of anger and abandonment issues. You may never see them, but they are buried deep behind her brown eyes. RAD children target their mothers. For years she has stolen and destroyed my things and directed her anger and resentment at me. She adores her daddy, but she can’t bond with either of us. Especially me. For years, friends and family have wondered what was wrong with me. She was a charming child, why was I so hard on her? Why couldn’t I give her a break? My anger and resentment spilled over to my relationship with her, with my husband, with my family, with Bunny and with myself. I couldn’t take it anymore.
But when Elle was diagnosed with RAD, maybe, just maybe, there was a light at the end of the tunnel. We got help, and finally, things started to get a little better. Elle was in a different school, one that worked with us and understood why we took her out of school every Friday afternoon for therapy, and why we are taking her out of school for a week to go to a RAD camp.
We have come along way, but we still have a long way to go. Elle has built a brick wall around her heart and won’t let anyone in. The wall is so strong she hides behind it anytime she has to deal with an emotion she doesn’t want to deal with. She doesn’t know how to love. She doesn’t know how to trust. But we are working on it. We are working to chip away at the wall. I have fundamentally changed my life in the last year. Colby and I have fundamentally changed the way we parent in the last year. Elle has made some progress, but she still has a way to go. We have a way to go.
But we will bring the wall down. One brick at a time…together.
Elle, I know you are reading this post. You know I love you with all of my heart. Together, we can do anything.
by Band Back Together | Sep 7, 2010 | Maple Syrup Urine Disease, Special Needs Parenting |
Before I became a mom, I had a certain expectation of what motherhood would be like. We would have a healthy baby, she would have so much in common with Lance, my husband, and I. She would be an avid reader, unable to put a book down. She would be well-spoken, and involved in theater and maybe even debate club. She would be musical, marching in the band or playing in the orchestra. She would have a regular spot on the honor roll.
When Anna was born, she was healthy. The fact that she scored 9 on the Apgar scale was a point of pride. Then, after a few days, our world slowly started to turn upside down.
When she was diagnosed with Maple Syrup Urine Disease at eight days old, a whole new definition of motherhood was thrust upon me. I had a very sick baby, with a disease with a weird name about which I knew very little, and who was potentially brain damaged. I was introduced to a world that I never knew existed.
I never knew what leucine, isoleucine, and valine were, or how much my daughter would be allowed to have within a day.
I never thought I’d be in an emergency room watching a doctor and a group of med students smell my daughter’s diaper.
I never knew how terrifying a simple stomach bug could be.
I never thought I’d have to use my entire body weight to hold down a screaming child so the nurse can insert an IV that will save her life.
I expected to use our blender to occasionally make margaritas. Not to blend a foul smelling medical formula at least once a day, every single day, for almost 13 years.
I never expected to burn out 3 blenders during those almost 13 years.
I never thought I’d have to poke my daughter’s heel/toe/finger to bleed it out on filter paper, or check urine samples to see how cloudy they are when mixed with DNPH chemicals.
I never expected to have to explain my daughter’s disorder to everyone.
I never thought I’d have to patiently re-explain when someone would say “she can’t eat meat… but she can eat chicken, right?”
I never thought I’d throw my “what to expect’ book against the wall because she was not meeting developmental milestones like the experts “expected”
I never thought I’d know what an IEP is.
I never expected to be cheering for her as she competed in the Special Olympics.
My version of motherhood never included all of these challenges. This was not what I signed up for. Yet, despite all of these challenges I’ve faced as a mom, I wouldn’t trade one of them. I will face all of those, plus whatever else MUD throws at me, because that is what it means to be Anna’s mom.
And that is a blessing I thank God for every day.
