Monday, April 18, 2011
I take a deep breath and close my eyes. My mind is always racing but I keep breathing deeply, waiting to fall asleep. In that moment when my muscles twitch and I'm in that silent minute before sleep claims me, I can hear them.
"Mom! Let's go shopping!"
"Mom! I'm hungry, whatcha got?"
"Mom! I got a job!"
"Mom! I'm getting married."
My dreams are filled with visions of the future. The Baby twirling in her wedding gown. Bugabuga opening the refrigerator and grabbing anything she wants. My handsome boy talking about his first job, and the CEO offering to take me shopping. I smile so much in my sleep that my face hurts when I open my eyes the next morning. I am filled with a sense of purpose and hope. It will be a good day because we are getting one step closer to making those dreams a reality.
"Ma-Ma! WAKE UP! Momma!"
"Mom! You awake. Wake up Mom. Mom, I want you wake. Mom, mom!"
"Milk, Mommy. Miiiiiiiiiiiiilllllllllllllllllkkkkkkkkkkkkkkkkk. Miiiiiiiiiillllllllllllllllkkkkkkkk!"
"Ma, ah, ma, ah. Bus, school, Sylvia."
Every morning, I wake up to my son staring into my face. His little nose scrunches up and he squints his eyes and bares his teeth in a smile. "Mama!" I will never get tired of hearing that word. I waited for it; I worked for it. Months after months, I held their hands up to my mouth when I spoke. "Mmmmmmmmm Ma! Ma! Ma! MMMMMMMMMM" I moved their hands to their mouth as I stared into their eyes, "Your turn, MMMMMMMMMM"
Every day I stared into their tiny faces for 30 minutes at a time and made them stare into my eyes. I worried that pushing them to make eye contact was like abuse. They hated eye contact. So I made it fun, we danced, I sang, we tickled-all the time staring into each other's eyes. Only once in a while, when the need was too great, I would make a request, "Please say Mama, please."
I remember when the diagnosis started coming in, all the psychiatrist and doctors remarked on their fantastic eye contact and I knew that was because of our hard work. So every day I spoke until my voice was horse. I played with sounds, and encouraged them to try it as well. I created a game using my pointer fingers connecting with theirs to teach them to point. I never stopped. And only once in a while, when I was at my weakest, I would say, "Please say Mama, please."
And then one day, the kids were sleeping except for Bugabuga. We were sitting on the couch doing our daily stare and tickle. She laughed so hard that she was snorting, I laughed along with her. "Mama!" And then she pointed at me. My breath caught in my throat. I grabbed her into a hug and exhaled. My hands shook as I called my husband. I was crying so hard that my voice was broken, "She...she...Mama. She called me Mama."
I waited for over two years for that word. I cried on the phone to my husband. He needed to go. I hung up and did the only thing that made sense. I picked up the phone again.
"Mom! She called me Mama!"
Saturday, April 16, 2011
The girls' diagnosis hit us so hard. My husband and I are Type A personalities. We work hard. We play hard. We are exacting in our careers and take pride in doing a great job. We try to do the absolute best job possible in our respective fields. But suddenly, it seemed that we were cursed. Our daughters weren't thriving so I walked away from a career that defined me. I never realized how important my career was to my well being until I had to walk away.
I took all of my passion and poured it into my children. Every day I feed, changed, sang, tickled, read books. My children were going to be the overachievers. They would read at a young age. Walk, talk, paint, sing by 9 months! They would be the best at everything because I never stopped until I was the last one standing.
It was shattering to me that I could not help the girls' reach their milestones. I wasn't good enough. It was January 28th, 2010 and the Early Intervention officials were coming to our house to conduct meetings for the girls so that therapies would increase dramatically to support their needs now that they were labeled Autistic. The meetings began at 10 am. We worked straight through until 3:30, stopping only to feed a baby, change a diaper and bathroom breaks. We spoke in heartbreaking detail about each girl.
"She doesn't care that I'm here."
"She broke the wall because she rocks so hard."
"She retreats into herself and looks so sad."
Our goals for each child tore at my well being.
"Baby A will acknowledge her parents."
"Baby B will laugh appropriately."
"Baby C will produce spontaneous speech that is not echolalic."
I was a failure as a mother. My children needed 135 hours of therapy per week in total to function. I was overwhelmed by the turn our life was about to take. Six different people would be in our house from 7:45 am to 2:00. We had 30 minutes to feed the girls before they needed to get on the bus for their center-based therapy. They would get back to the house at 5:45. I wanted to weep that the girls needed one-to-one care for almost every moment that they were awake. Professionals were taking over for me.
I woke up early on February 1st, the first day of therapy, to get the girls' dressed on time. My husband helped make the bottles. He shook the first therapist's hand when he came to the door and left for work. He looked so sad to miss the girls' first day of school.
I was so overwhelmed by the sheer amount of work and paperwork that was involved with therapy. I hear a baby cry in one room and I rush in that direction to console. I hear the CEO throw a toy at the therapist in another room. The sound of hard plastic smashing into flesh made me wince. I should have mentioned that she does that. My son was rocking back and forth in his highchair and one of the therapists asked if he was also getting therapy. Huh? No time to process that, I continued moving. The CEO at this time was in full tantrum. She was slamming her head against the therapist's body. Punching and kicking with all her might, she was looking to injure her and I think she was getting close. I molded my body around her and started playing with the toys the therapist presented. She couldn't move anything other than her hands and my hands were over hers. My clothes were wet from exertion. It was only 9:45 and I wanted to scream. The only thought running through my head, "Oh God, please help me. I can't do this alone. Please help me."
The phone rang at 10:14. My husband was on the line. He lost his job. I started laughing hysterically and sobbing at the same time. I couldn't breathe. I didn't have a spare room to hide my reaction from these therapists. Every room was in use for therapy. "Come home. At least you'll get to see them go to school for the first time." I walked into the kitchen, shut the door and started punching the wall over and over and over. I didn't feel anything other than pain in my hands. Seven minutes later, I walked out and started working on the girls' paperwork again. I didn't have time to feel, I had to help my babies.
It took me a year and 2 months to cry again. I don't know if it was a defense mechanism that caused me to shut down or just sheer exhaustion but when I did it was shocking and a relief. I began to feel almost human again.
Saturday, April 2, 2011
LIGHT IT UP BLUE! World Autism Awareness Day is an anniversary of sorts for us. We came out to the world. Last year, our daughters had been diagnosed a few months earlier and our son was showing some of the signs. We had never admitted the diagnosis to anyone other than family. I was so worried that people would think that I had special needs if I admitted that all of my children had special needs. With my heart pounding, I typed the words, "Please LIGHT IT UP BLUE for our three Autistic daughters and our son who is showing the signs." on my Facebook status. I waited to see the response. So many people were struck by the magnitude of us having more than one child with special needs and I suddenly realized, it was so hard!
Instead of being seen as a special person, I was suddenly viewed as tough and determined. I was a mommy on a mission to save the world and ensure that my kids were accepted and loved by everyone. And to a certain extent that was true but in another way, that persona that I still have as a no-nonsense woman that can handle the reports and notes home, the violence and silence was a sham. For the longest time, the idea of crying and taking a deep breathe was frightening to me. I would memorize the reports so that I was able to sprout out statistics about each child at the IFSP meetings. I learned quickly that focusing on the positive accomplishments of the kids seem to make the Early Intervention Official less likely to approve a greater amount of therapy.
The first IFSP that I attended for Bugabuga was jarring. We didn't know what to ask for and were so thankful when they offered us 30 minutes of speech therapy twice a week. They also wanted to get a physical evaluation. After 4 months of calling our service coordinator and realizing that she didn't care about setting up that evaluation, I contacted the Commissioner of the Department of Health. I found her email address on one the papers that I had signed and figured that it was worth a shot. An evaluation was completed two days later.
Every meeting I walked in focused. I needed to get the maximum amount of therapy so that they would get better. They had to get better. I would speak passionately and my eyes would fill with tears at the right moment to drive home a point. My voice would break at a pivotal moment. I worked it but I didn't feel a damn thing. The things written in the reports were so abhorrent to me that I couldn't bear to accept that the reports were about MY children. It became a movie to me, a mother had to deal with this, how should she react, what was appropriate. To the world I modeled what I thought I should act like but at home after these meetings, the words would run through my head when I closed my eyes to sleep. My nightmares became so intense that I just stopped sleeping. I couldn't bear to close my eyes unless my husband was right next to me. And even then I woke up every 15 minutes terrified. I became a master of crying silently- my breathing doesn't even change anymore. I was so angry. I worked for years to get pregnant and then I had to face the idea that my children may never speak, may never have a normal life. I would occasionally walk out of a room and close the door. Alone, I would punch and kick the wall until I broke a sweat. I needed my babies to speak. All the therapists recommended that we delay our responses so that the children had to speak to get their needs met. So many times, I heard crying, grunting, meowing but no words and I knew what they wanted but I held back. It went against every instinct that I had as a mother. I waited and let them cry. I kept an encouraging smile on my face and waited.
"Ma.....ma! I wan ocolate milk!" "Aaaaaaaa, chicken, aaaaaaa, rice" "Ooooo, food, alright, okay!" "Give me food, Mama!" Their sentences are beautiful. Every single thing they say, every word they use motivates me to motivate them. It's like a balm on my soul. It was worth the fight. It was worth having 135 hours of therapy a week, every week. They are so worth it. "Ah ove you!" "I love you too, babies." Happy Autism Awareness Day.