Tuesday, December 4, 2012

Twenty Seconds


It's time for Handsome's meeting.


We're holding hands as we walk into the room.  It's time to hear what he needs.  It's time to objectively look at the reports and adjust goals accordingly.


I look at the teachers with the kind smiles.  I listen quietly as they discuss his lack of safety awareness.

They are satisfied with his progress but he needs help to continue on.  He needs help with his fine motor skills.  He needs help processing his emotions.  We need to work on his tantrums.

She's saying that he has a receptive delay.  It takes him 20 seconds to process what I said.  I feel like the teacher has punched me.  I just thought he was ignoring me but it's worse... he doesn't understand me.

I take a deep breath.  The teacher is smiling and saying that we are doing all the right things.  It's time to actively focus on potty training.  I'm excited but heartbroken.  My baby will be trained before Bugabuga, my oldest.  I take another deep breath.  I can't think of the other kids right now.  I can't think about their needs.  I have to focus.  Oh God, I can't do it. She's not trained yet.  She doesn't even care.  I can feel the emotion starting to choke me.  I want to get out of this room.  I need to leave.

I smile at the teacher.  "I'm so glad to see he is progressing so well."  She looks relieved that I am satisfied. "Let's discuss the 5%."Her smile fades.  This conversation is not going to go as easily as she had hoped.

"Physically, he has progressed to 19 months old. It's great progress." I appreciate her ability to spin this into a positive.  I leave the fact that he is 46 months old unsaid.  It's more than a two year delay.  He's physically functioning better than 5% of children his age.  The teacher is still talking but I've hit my limit.  I'm signing the papers.  I'm nodding but I'm done.

We quietly make our way home.  We walk into the house and Handsome comes running-arms extended (for balance?) I prefer to think it's for a hug.

"Hi Handsome!  How are you?  I missed you!"

He's staring at me.  I'm silently counting.


"Hi Mommy!  I missed you too!"

I give him a huge hug.  I wish I could hug his teacher.  She gave me a huge gift.  Twenty seconds.  I can help him understand.  I can wait 20 seconds.

No more frustration, just understanding.

Wednesday, September 12, 2012


There are times when I close my eyes, take a deep breathe, say a prayer, open my eyes and smile.

I read an article once that said that if you smile while unhappy, you can trick your brain into thinking that you are happy.  Why the hell not? It's worth a shot.

My work gives me a true sense of joy.  I love it.  It's therapeutic and  logical.  I can watch my numbers sing and I  lose myself for hours in market trends.  I call this my nerd-gasm.  It doesn't matter how my day started or ended; I can walk through a bookstore and watch people pick up a book, disregard it and buy another.  I try to see a pattern in their choices.  My numbers usually support my observations.  I feel so satisfied with giving the consumer a great reading experience.  I'm proud of what I do.

I'm good at what I do.

I throw myself whole-heartedly into my work during the day.  I can never explain it to co-workers.  I doubt that they would understand the importance of work for a special needs parent.  A job for some people is just a means to an end but for me, it can be my salvation.

There are days that are so difficult.

"Bugabuga! Bugabuga!  I need you to come here now!  You have to go to school!"

"Ahhh!  I don't want to go to school!  I'm tired!"

I walk her over to our spot so that I can start dressing her.  She doesn't have the balance to put her clothes on herself.  When she's tired, she can barely stand and I hold on to her body weight in one hand while trying to put on her diaper with the other hand.  She's not trained yet.  I try not to think about it anymore.  I have to hope that she will get it soon.  I have to hope...

We struggle through the morning ritual.  I'm slowly combing her hair.  She's crying by this time.  I feel a huge lump in my throat.  I'll never understand why things are so hard for her; I'll never stop wishing that it was easier.

"Mommy! You're hurting me!"

She swings around and punches and pinches my arm.  I feel the skin bruise and I feel so, so sad.  I close my eyes.  I must remain calm. I open my eyes and try to reach her.  I try to explain the pain, I'm not sure that she feels pain like I do.  She doesn't care either way.  She's stimming now.

I grab her hands to stop her.  I used to think it was so cute when she put her hands to her face.  Her skin feels funny, I look down and see that she is getting a callus on one of her knuckles from biting her hand.  I want to cry.  Her beautiful little hands are getting affected.  She struggles with me.  I win.  She's ready for school.

She tells me that she doesn't want to be my family anymore.  I tell her that I love her anyway.  She tears at my heart.

We walk to school and I hug her as she pulls away.

"I love you, Mommy!  Have a wonderful day!"

I watch until she is through the doors and out of sight.  I roll my shoulders to release the tension.  I check my work email and immerse myself for a few minutes-just enough time to regain my composure.

I travel to work shaking off the rough start.  I walk into the building and smile.

It's time to lose myself.

Tuesday, July 3, 2012

Dear 50 Cent

Dear 50 Cent, You took my breath away today. I have no ill feelings toward you. We have no beef. But you hurt me. I was taking a moment for myself, reading twitter and Facebook. I was so relaxed and then I read your tweet. "You look autistic." My four children are autistic. They can speak and interact socially. They love music. They are gorgeous. We've had many people ask us to start modeling careers for them. we didn't choose that road. We choose to spend 135 hours a week with therapists in our home. Things that you take for granted-like swallowing and smiling, we had to teach our children. I forgive you for your ignorance to what autism actually is; I honestly don't believe that you meant any harm. I ask that you think before you use the power of words. Words can have so much power-I know because I waited over 2 1/2 years to hear the word, "Ma." I watched in horror as one of my daughters lost her ability to speak during a regression and work constantly to speak again. Words have power. I'm writing this letter so that you can hear another voice, so you can understand how hurtful your words were to parents that work tirelessly to remove the stigma associated with their children's diagnosis. Sincerely, A Proud Mom

Wednesday, February 8, 2012

Mommy's Miracles: I want to run.

Mommy's Miracles: I want to run.: "I want to have Ariel hair." I slowly brushed Bugabuga's hair. We were alone in the bathroom. "I don't have friends, mom." "Of course ...

I want to run.

"I want to have Ariel hair."

I slowly brushed Bugabuga's hair. We were alone in the bathroom.

"I don't have friends, mom."

"Of course you have friends! What about Krystal?" Krystal is her parah.

"Ooohhh! Yes! Krystal loves me. I'm adorable, you know!"

"I do know. You're a great little girl."

"I'm a little girl. I can't run like CEO and Baby. They run and jump and I'm too little. I'm still a baby. I want to be a big girl. I want to run."

I stopped brushing her hair and turned her to look at me.

"You're a big girl, honey. You just can't run yet. Not everyone can run and jump. It's hard work! Right?"

"Oohh, it's very hard. I try every day but my feet can't do it. I get so tired."

My throat felt tight. My baby girl is starting to see her limitations. She's feeling bad about it. I need to make this better. I need to make her able to run. I need to find a cure for hypotonia.

The reality is there is no cure.

The reality is that she may not run. The reality is that I am over the moon that she can walk as well as she does right now. The reality is that she will more than likely need physical therapy 5 days a week for the rest of her life.

"I don't want you to get tired. Everyone is different and special in their own way. The CEO can sing, Baby can dance and you are very smart. You can write your letters and numbers so well! You can beat the Angry birds game! That's really great. You don't have to run to be great."

My husband walks over. "What are these life lessons that I'm hearing?"

"Bugabuga wants to run." I look at him helplessly.

He looks at Bugabuga, she looks at him with her usual hero worship expression.

"I can't run, Bugabuga. I hurt my leg a long time ago and I can't run anymore. It's okay though."

"YOU can't run, Daddy?" Bugabuga looked shocked. We watched her work through the thought that her Daddy couldn't do something.

"It's okay if I don't run. I'm like Daddy."

Wednesday, February 1, 2012

Mommy's Miracles: Panic

Mommy's Miracles: Panic: "It's okay. We're okay. They are going to be okay." When the diagnosises of Autism started pouring in during December '09 and January '10....


"It's okay. We're okay. They are going to be okay."

When the diagnosises of Autism started pouring in during December '09 and January '10. I was overwhelmed...and scared, so fucking afraid. Was our life, our dreams over as we knew them? Every marker I saw filled me anxiety. The conversations with psychiatrists about their potential and struggles, scrapping money together to get them to next great specialist. Choosing to pay co-pays over buying food, fainting because I skipped one too many days of eating. Thinking the worst thing that could ever happen after all this was my husband losing his job. God couldn't be so cruel.

And then he did.

My hair started falling out from the stress. We depleted our savings, I kept making doctors appointments. Handsome started rocking. He was diagnosed in April 2010. Seventy-three specialists in all.

I couldn't sleep.

The nightmares were horrific. Everyone died except me and I was helpless. The fear that I couldn't control anything was overwhelming. I walked through the house continuously while everyone slept. I checked their pulses and listened to them breathe. I couldn't sleep for more than 15 minutes at a time. My body was in agony. I was exhausted.

I had chest pains.

I laid in a hospital bed listening to the doctors discuss my heart. It could be a heart attack or a panic attack. My history of heart failure during the triplet pregnancy was chaining me to that bed. I fell asleep and the doctors saw me have a nightmare. They asked me what made me so afraid.

"My life."

I went home many hours later. The CEO was screaming, Bugabuga was leaning against the couch because she didn't have the strength needed to stand without getting tired. The Baby was repeating a tv show verbatium. Handsome was laying inert in his swing, just like a newborn except he was 15 months old.

He needed help.

Early Intervention said that he didn't have enough delays. They refused to give him therapy. I cried. The state worker filling out the paperwork said that I wanted him to be autistic. I understood the meaning of rage. I pray about her often. I don't pray for her soul. I pray one day she understands.

We sued the NYC Early Intervention Program.

Handsome was re-evaluated. The reports said "Borderline mental intellect." I'll never forgive that state worker for making me get another evaluation; for making me see those words. It haunted me. I was so afraid of the unknown. I began to get anxious going outside. I was terrified when I was separated from the kids and my husband.

We won.

He was given full therapy.

We found our rythm. The girls prospered. Handsome made a complete turnaround and no longer has a cognitive delay. We keep trucking'.

I got a job. My hair stopped falling out in clumps. I started sleeping a couple hours at a time.

My husband worked with Handsome tirelessly while I toiled away. A year passed. It's time to find the right elementary school. It's time to get the label of Autism removed, they made enough progress.

"I still think the diagnosis stands."

I numbly listened to the neuro. The diagnosis still stands."Integrated classrooms. High functioning."

The diagnosis still stands.

I started to mourn the dreams that were on hold in my mind. I stopped sleeping again. The nightmares started again.

My poor hair.

The NYC Department of Education can't promise that the girls will be in the same school. "They have to be fair."

As we search for a spot for three autistics while most others search for one, I'm struck by the lack of help, the lack of caring for us as a family.

The lack of fairness.

As we run into wall after wall, my sleep diminishes and I feel the razor focus of a mother bear fighting to save her children's life. I'm not tired. I'm not hungry.

I will fight to the bitter end.

I'm terrified.

Saturday, January 28, 2012

Mommy's Miracles: A lesson learned- Our search for the perfect Kinde...

Mommy's Miracles: A lesson learned- Our search for the perfect Kinde...: It's time to look for a school for the girls. They are scheduled to start kindergarten in September. Right now, Baby is by herself at a pres...

A lesson learned- Our search for the perfect Kindergarten

It's time to look for a school for the girls. They are scheduled to start kindergarten in September. Right now, Baby is by herself at a prestigious private school that has an integrated program. I think the hype is overblown and honestly, I think she would have learned more at Bugabuga and the CEO's school but this was her chance to be normal. And we needed that, so we jumped at the opportunity.

We walked in to the little nursery school and were met by the social worker. Her smile was fake and her ego was palatable.

"We only have one spot available. I know when we spoke, an hour ago, we had two spots but someone else took one." She shrugged like she was cute and charming.

"How is that possible? You told me that we had the first appointment."

If you're looking for a spot for all of your children, we will not accommodate you. If you can't accept that, we'll cancel the appointment. Pick one to be evaluated, only one."

I looked helplessly at my husband. OH my God! She was making us choose which one was higher functioning. I hated her in the instant and two years later, I still seethe when I think of her. The Baby was exceptional of course and was accepted. We sent her on her merry way and any time we have any contact with the social worker, I deferred to my husband. He takes her calls. He is their primary contact. I can barely speak to her without wanting to vomit.

My handsome was accepted there too but they wouldn't bring him in until after the Baby graduated. It was like that school had a one child limit for our family in particular.

We let the spot go and Handsome started school with Bugabuga and the CEO early, like we wanted. He is excelling.

Each morning we put the three of them on the bus and Baby sadly sits and waits for her bus. Come hell, or high water that won't happen to her in September. Even if we have to sue the New York City Department of Education, they will be together.