by Band Back Together | Dec 4, 2010 | Asperger's Syndrome, Autism, Childhood Bullying, Coping With Bullying, Fibromyalgia, How To Heal From Being Bullied, Parenting, Rheumatoid Arthritis |
A couple of weeks ago, we finally got an official diagnosis for Alana, one of my twins. The doctor confirmed our suspicions. She definitely has Asperger Syndrome. According to the doctor, there are changes in the works in the medical community to eliminate the separation between Asperger’s Syndrome and Autism by referring to them all as Autism Spectrum Disorders. That’s just a dressed-up way of saying our family has yet another mountain to climb.
I guess the formal diagnosis shouldn’t really change much in our lives. We’ve suspected for several months and we’ve already taken steps to try to help her. We’ve eliminated red dye from her diet, learned to remove her from situations at the first sign of sensory overload, and tried different coping methods to work through the inevitable meltdowns.
But somehow, having the words written that will forever label her…well, it does change things.
Last night, I went through my nightly routine of teeth-brushing and face-washing, and then I checked on the kids. They are five and two, and I still can’t go to sleep without checking on them, making sure they’re breathing, and saying a little prayer over each of them.
I got to Alana’s bed last. I sat there on the edge to watch her sleep for a minute and give her a kiss. As I looked at her, the reality of her diagnosis hit me.
Sure, we expected it. And just like I do with my health issues (RA and Fibro), I’m constantly doing research, trying to find tips and tricks for handling this. I’ve thrown myself completely into figuring out what’s going on in her brilliant mind and helping her through her struggles. But I don’t think I’ve let my heart in on the process. And last night it learned what was happening and screamed in protest.
“THIS IS NOT THE WAY IT’S SUPPOSED TO BE FOR HER!”
She’s not supposed to have to struggle to make friends. She’s not supposed to get so anxious over a picture she’s drawing that she starts crying because she messed up and thinks other people won’t like it. She’s not supposed to have a compulsion that makes her chew the skin on her fingers until they bleed. This should NOT be happening to my child!
There are so many things that are much worse than ASD. I know that and I thank God every day for the health of all my children. But I think every parent can understand that I had a vision of how things are supposed to turn out for my kids. They’re all going to grow up and have plenty of friends, go to college, have a great career, get married to their soul mates, have beautiful healthy babies, etc. And while I know that they will ultimately forge their own destinies, I guess the common thread in what is supposed to happen is an absence of pain.
Pain is part of life.
There’s no question about that. As much as we want to protect our children from it, it’s going to happen. Our job is to be there and help them through it. And while I watched her sleep, I realized that she’s likely to be dealt much more than her fair share of pain. There seems to be new stories every day about children with autism being abused or bullied. The last few months that Alana was in daycare proved that it starts early. The four-year olds didn’t understand her anxiety and meltdowns so they would pick on her about it. It brought me to tears.
As much as I worry about her in social situations as she grows up, I am constantly amazed at the gift that Asperger Syndrome has given her. We always knew she was very smart. As I home-school her, though, I’m seeing evidence every day of just how different Alana is by comparison.
For instance, a few weeks ago, she got her Hooked on Phonics Kindergarten Level 1 book and started reading it to me. She sat for an hour and a half straight going through the last seven lessons in the book. No DVDs, just her. I feel like I’m not even needed now when we work on reading. We’ve completed one-quarter of Kindergarten and she’s reading every one syllable word she comes across.
Beyond scholastics, she understands things on a deeper level than even I do sometimes. Since our last appointment with her doctor, she and I have talked a little bit about what makes her “different” than most other kids. I told her that the symbol for Autism is a puzzle piece because we still don’t know much about it and we’re trying to fit the pieces together.
A few days later, she brought me a piece of paper with a few colored pieces glued on randomly. She said, “Mommy, this is your puzzle. Every day when we figure out something else about me you can glue on another piece until we have it all put together.” Just one of the many things that surprise me coming from a five-year old.
I admit, I had a rather weak moment last night, sitting there on Alana’s bed.
I try hard to be positive and look for the bright points. But sometimes the worry, the pain, the fear all break through and dark clouds roll in. Then, Alexis giggles while she wrinkles her cute little nose, or Avery tells a 2-year old version of a knock-knock joke, or Alana says something really profound.
Then the light comes back, reminding me of just how blessed I am and how much I have to be thankful for.
by Band Back Together | Dec 3, 2010 | Abuse, Adult Survivors of Childhood Sexual Abuse, Child Abuse, Coping With Anxiety Disorders, Coping With Depression, Generalized Anxiety Disorder Resources, Major Depressive Disorder |
wall. hit it. check that off my list for today.
trying to get them to school on time–wrong
trying to get them to eat–wrong
trying to get them dressed–wrong
trying to get them clean–wrong
zipping the jacket–wrong
having them not show up to school late–wrong
waking them up–wrong
waking up–wrong
words–wrong
My silence in my home is the only acceptable form of me to the three who need me.
The hardest thing about being a depressed mother? The odor. No matter how much relentless, caffeine-induced energy, forced enthusiasm, skilled application to educational crafts, or books read on development. No matter what care taken with my fragile mental health…taking my pills like a good girl every night so I wake up in the morning to do it all again. No matter how clean the kitchen sink, how nutritious the meal, customized the birthday presents, thoughtful the note in the lunch box. No matter how carefully I avoid repeating patterns of abuse and violence –no matter. I stink. It is as if my depression leaves a permanent, distasteful and toxic odor coming from my very being. No matter how much I dress it up, clean it off, put make-up on it, expose it to fresh air and aromatic therapies. I toss chemicals into it, paint it pretty colors, or force it into room-mommy scenarios.
It still stinks.
The fumes of depression seep out of every pore with the stench of decaying life and flammable, noxious fluids that lead to forensic evidence in my face–that my own mother chose my father over me and my father chose me over my mother. My children–they are bomb-sniffing dogs.They smell the little girl I was–discarded and thrown into the trash with the giant Gallo wine jugs. They smell the lack of basic import I have ever had on the mother, father, brother, and sister family of origin I fell into. They smell the dangerous mix of rage and intelligence that may combust at any moment. They smell despair and destruction. My kids smell my depression.
I stay vertical as to not hurt them more than I already have by exposing them to a life long…long life…with a chronically depressed mother. It goes like that…it is like that. New strategies on disinfectant, deodorant, dialogues on anti-depressants. Days like this are the scratch and sniff of it. These days scrape hard on my soul. And I reek of it.
They are out there…my kids are out there right now waiting for me to pick them up after school, as I do every afternoon in a dutiful attempt to assure them that my love is greater than the force of gravity on my heart. I am already dreading the predictable, palpable disappointment they will have when they get in the minivan and the smell of my mood reminds them I am not EVER going to be the bounce-house of distraction-filled fun that is their father.
They will never know he broke me too. Asshole. And I stayed for them, sleeping with one eye open and one foot out the door ever since. Seven years of a thirteen year marriage straddling suspicion and motherhood.
Against every fiber of my being to drive it off a cliff and enjoy the fall–I am getting in the fucking minivan, I drive on the right side…stop at all the red lights, avoid oncoming traffic whenever I can.
Joy gone. Independence gone. Creativity gone. Respect gone. The possibility of being touched by a man and feeling safe–he and my dad put the nails in that coffin, too. Yuck.
it is this always
i am barely, rarely, fairly ”good enough,” silent, and vertical.
and i smell like a martyr.
by Band Back Together | Dec 3, 2010 | Abuse, Anger, Child Abuse, Coping With Domestic Abuse, Domestic Abuse, Guilt, Loneliness, Sadness |
I picked up the key – my key – to the apartment my son and I would soon call home.
I tried to figure out just what I could take. If I took too much – or the wrong things – I feared the price we’d pay.
I made the reservation for a U-Haul, knowing that I didn’t have the money to pay for it, but that it was the only option.
I learned that my son had been suspended from school, on moving day – inappropriate language. I was hoping to protect him from the process of moving but now he would have to help.
I had $74.87 in my checking account that had to cover the U-Haul, gas, food, laundry and basic needs for the two of us for six days.
I was terrified.
I grieved the life I thought we’d have. The family I so desperately wanted.
I was convinced that he would see his abuse was the problem. That he’d seek help. That he would change. That we would be the family I knew we could be.
364 days ago …
The emotional damage I allowed him to inflict on my son became vividly clear within days of the move.The realization of just how damaged I had become would materialize much later.
It hasn’t been easy. Not a single day. I’ve tried to make the impact on my son minimal, but he has often had to do without.
I’ve had to apply for financial assistance to help offset the cost for him to attend church camp and youth fall retreat, sharing very personal information with complete strangers so that they could judge if we were worthy of their money.
I’ve had to file for bankruptcy, facing the public embarrassment of admitting I could not meet my financial obligations.
I’ve had to get food from a food bank, more than once – waiting in line for hours with those people – hoping I wouldn’t see anyone I knew, but never being quite that lucky. Feeling waves of humiliation and shame each time and never telling my son.
Many days I’ve felt like a charity case – a project for someone – not quite human.
Although we remain married, I suspect he will eventually find someone else who is prettier – smarter – more concerned with the image and the things so important to him. When that day comes, I’ll be faced with the reality I’ve been avoiding – even denying. The reality that confirms I wasn’t enough for him, and will never be enough for anyone – just like he told me years ago.
364 days ago …
It was the right thing to do. It was the only thing to do. But I’m ashamed to admit I didn’t do it for myself. If it weren’t for my son I’d have never left. I still believe that I don’t deserve any better. That settling is my only option to combat a life of loneliness. But my son? My son? He deserves better.
I wish I could have done it for me.
by Band Back Together | Dec 3, 2010 | Grief, Help For Grief And Grieving, HIV/AIDS, Loss, Parent Loss |
I’ve been thinking a lot about my dad lately. He was my hero.
My dad was the kind of guy who can get through Ivy League med school by drawing cartoons in the back of the class, and still somehow graduate in front. He wore a necklace that read, “War is not for children and other living things,” and took my family to Peter, Paul and Mary concerts.
Dad never read me bedtime stories. Instead, when I was four, he began explaining the theory of evolution in nightly increments. Tom Petty was often blasting in the car, and he used to do a weird hand-clapping maneuver that involved taking his hands on and off the steering wheel which I found exhilarating. He was lucky not to have been pulled over, but it made him the coolest person in the world.
Dad took me to Washington for our last trip. We sat in on an NPR recording and toured the White House. I didn’t understand why on Earth he would pack in THAT many museums visits into one trip. Turns out, he wanted to cram in a lifetime’s worth.
Dancing was the same thing. My father loved to dance with us whenever he could. One day, he had my sisters and I wear dresses, and gave us all a long, special dance to our favorite music (three-year old Carrie, and seven-year old me picked blended folk -too embarrassing to mention. Our favorite Hebrew album was included in line-up. Luckily, my youngest sister was still too little to talk.)
I never understood why he danced with us that day until years later, after he was gone, when I finally learned what a wedding was.
I could go on and on about my father, about what a wonderful guy he was, how he told us if he had to do it all over, he would have been an architect instead of a psychiatrist…
I can generally pull off humor in the most dire of situations, but when I write about my father, it’s hard. I’m still angry at the doctor’s mistake that caused him to hemorrhage and receive an HIV-infected blood transfusion two months before they started screening blood for HIV/AIDS. My dad was gentle, funny, and brilliant – a wonderful human being. I’m angry that my grandmother lost her only son, and I’m angry my mother was left alone with three kids. It’s a miracle my mother never contracted AIDS from my father, thus everyone else in my family is healthy. (We think my mother has Delta 32, making her resistant to AIDS.)
Still, this kind of thing is not supposed to happen.
On World AIDS Day, I want to look back, to smile and thank him for the presents he gave ME.
To the baby born on January 14th, 1952 at Beth Israel hospital in Newark, NJ, weighing 7lbs 11oz, and to the 42 year old man who stood at 6’4, thank you, Dad, for teaching me that no one is infallible. For teaching me that, regardless of race or socioeconomic status, we all are equal.
HIV/AIDS was still relatively new back when my father was first diagnosed. There was still enough stigma that, even in his obituary, my mother wrote he died of cancer because she was afraid of what the people in our small town would think if she told the truth.
Thank you, Dad, for teaching me the importance of being real and speaking the truth. Thank you for showing me firsthand that we all deserve a voice, especially those sick or marginalized.
I always told people the truth about my father, regardless of what people might think of me or my family. I lost friends, as did my mother, but I always wanted people to know that AIDS can happen to anyone.
I stopped believe in miracles that February. But I started believing in the ability of words to transform people’s lives.
Thank you, Dad, for having a bigger impact on my life than anything else in my twenty-five years. If I could give you all the presents your heart desires, I would.
That you lived gave me enough to last a lifetime.
by Band Back Together | Dec 3, 2010 | Anger, Anniversary Reactions, Breakups, Coping With Losing A Child, Grief, Help For Grief And Grieving, How To Cope With Post-Traumatic Stress Disorder, Livng Through A Miscarriage, Miscarriage, Post-Traumatic Stress Disorder, Sadness, Spotlight On Baby Loss |
Today is when our baby was due.
Today is when we would’ve met our child and become parents.
It’s hard writing those words, but even harder thinking about what they actually mean. We never knew if our baby was a boy or a girl, though we’re convinced our little one was a tiny princess. We named her, though only we know her name. I try to look at our faces all the time and imagine what she would’ve looked like. There is an emptiness in my heart knowing our family isn’t complete, that there’s someone missing.
I posed a question to people a while ago. I asked if they would consider someone a mother if their child never made it into their arms, and as would you expect, the answers were divided. I’m half in the park that “I am a mother,” and half in the “I’m not” as well. Without having her here in my arms, I feel like I don’t deserve the title of ‘mother,’ but I can’t deny she was here, even if only for a short time.
Her initials are CG, and I wish I could tell you her name, but somehow it doesn’t feel right. I’m tired of her being our secret though, and I want the world to know I should have a daughter here. I’m angry, frustrated, and hurt. I want people to know about her, I want others to miss her, I want others to care.
Today, I should be a mother, holding our little angel, breathing her in and going over all of her little features with the awe only a new mother can have.
Today is a lot harder than I thought it would be.
