2010 in Review

On December 11, 2009, the CEO was diagnosed with ASD (Autism Spectrum Disorder) and I felt like our little family unit was silenced with the diagnosis.  I remember hearing the doctor say autism and feeling the blood rush to my head.  The roaring sound of my blood silenced most of her words.  Key words struck like lightening; non-verbal, self-abusive, MR.  I couldn't understand.  What did she mean institutionalize?  My senses were heightened.  It was cold out.  My nose could smell the eminent snowfall, my skin had goosebumps from the chill.  My eyes watered continuously from the bitterness of the air and the bitterness in my heart.  I went home and I could barely speak into the phone and explain to my husband what the doctor had said. He was at work, about to go on the air. My voice kept cracking.  I cleared my throat several times before I could mutter the word, Autism.  I couldn't say anything more without sobbing and my husband had 40 seconds left before the song ended...We hung up with that word hanging between us, Autism.

Things moved so quickly after that.  I remember certain days with a clarity that is striking in the details and some days are a blur. 

On December 25th, my husband and I woke up early to listen to his coworkers' children take over the air waves for the holidays.  It was one of the nicest events of the year.  Since our children had been born, we were waiting for the day that we could hear our little future DJs do their first break.  We were able to appreciate it for about 25 minutes before the reality that our daughters, Bugabuga and the CEO, did not speak and very possibly may never speak.  We held hands each time the mic was opened.  Holding on for dear life.  We needed to turn off the radio but we just couldn't take that step.  Each word fell with the impact of a knife in the heart.  We whispered to each other...next year, next year...they will talk next year...

The frenzy of doctor visits commenced.  I had to check my notes to confirm that I was bringing the right child with me to correct appointment.  January 15th, and a psychologist is meeting with me and the girls.  Four hours later, the psychologist is gone and I'm making another call to my husband.  "Honey!  Autism, both of them."   He had to do a break.  I hung up and cried.  Our three daughters had Autism.  Where do we go from here?

I started picking therapists brains.  We didn't know what they needed and we couldn't even say the word Autism.  Denial and anger were a constant companion.  How do you ask for help if you can't even admit what is wrong?  

We needed everyone but we couldn't say a word.  To admit that we were devastated was unacceptable but we expected everyone to know and support us.  February 1st, we send our girls to a special Autistic Program -school- for the first time.  We loaded them on the bus and got on it with them so they would be comfortable.  The Baby looked curious and a bit scared.  Bugabuga squeezed her eyes shut for the whole ride.  She shook continuously.  The CEO screamed and cried.  We soothed and she screamed louder.  We were sweating by the time the bus arrived at the school 20 minutes later.  We helped the staff unload the kids and sat in the lobby.  We listened to the girls scream for the entire two hours. We stood at their classroom door and saw the CEO slamming her little body against the floor and Bugabuga shaking in her seat.  The Baby sat quietly with her chin resting against her chest.  Tears were silently plopping onto her shirt.  We could barely stand the pain that we heard.  We held hands and ignored the tears in each other's eyes.  We ignored the fact that my husband had lost his job that morning. We could do this.

April 9th, Handsome was diagnosed.  This time my husband was home and we could deal with this together.  We held each other tightly and started the process to get him help.

Our girls are finishing their program next week.  They are graduating into preschool and they are doing wonderfully.   Better than all the doctors expected.  They can call me Mommy now and they have a nice little arsenal of vocabulary.  We are so proud.  They worked so hard to be able to get to this point.We worked so hard.

I was reading the initial intake paperwork recently and I was struck by the CEO's first goal. " X will show emotion and smile and laugh appropriately."  I look at her now and watch her sing a Barbie song on the top of her lungs. Smiling and laughing, falling on the floor in a fit of giggles.  We did it.  They are going to be okay.

What would I tell parents that are facing a possible diagnosis

People ask me what they should say to their family members about a diagnosis. They ask me what to say to get them to get the children tested if the parents don't see any issues.

I don't know exactly what to say but I know what NOT to say.

DON'T Say:

*Something is wrong with the child.

*The child is delayed.

*The child will speak if they speak more to them.

*It's a cry for attention.

Instead say:

*The child is very quirky and then point out a hard marker like rocking.

*The alphabet seems to be a bit hard for the kid, maybe he/she needs to take it a little slower.

*The child is quiet.

*You're doing your best.

*Does the doctor have any strategies to deal with that behavior? They are professionals. They have experience with all types of personalities.

DON'T SAY AUTISM!

This is definitely a case of killing the messenger. The best thing to do is support the parent. Babysit. Don't criticize. Trust me, they are baffled as to why things seems so hard. Their child is perfect in their eyes. And ultimately, a parent needs to make peace with the fact that no matter how hard they try, no matter all the things they pay extra attention to to make sure that their child doesn't cause a disruption and be an active part of the family, they will need a professional to help them understand their child.

That's the hardest part. I remember listening to the first therapist telling me that Bugabuga was functioning at a 0-3 month level in speech and she was almost 14 months old. I couldn't understand her words.

I remember walking into the neurologist's office and hearing her say, "Yes, I agree. Hypotonia. Developmentally immature." I remember nodding and being too ashamed of my lack of knowledge of the terminology to ask questions. I remember the shock of being given a follow-up appointment. Why did she need to come back when she was fine?

"I guess that's a standard practice." Denial is beautiful in its intensity.

I remember coming back for a 4th visit and her mentioning the phrase spectrum disorder. She didn't say that she had it but she just mentioned that it may be a possibility.

I remember thinking that she was way too pretty to be on the ball. LOL. Anger is vicious, although she is pretty. LOL.

I remember the CEO waking up one morning silent after speaking simple sentences without a problem. I remember the paralyzing fear that she had a seizure.

I'll never forget the pediatrician's expression when I ran into his office without an appointment, crying that something was very wrong. I wasn't ushered back to the waiting room with the triple stroller. I was escorted into a room and the doctor followed right behind.

He checked her thoroughly and made the medical assistant get a neurological appointment for the same day.

I don't remember the hours between that meeting and walking out of the neurologist's office. I remember she was wearing a green shirt, black skirt and black boots. She ordered a battery of tests and referred me to a behavioral neurologist, or as I like to call her, a special specialist.

She called me Mrs. Moronta that day. All the other meetings, she was friendly and caring. On this day, I saw the doctor stone face that medical professionals get when they aren't ready to tell you something but they know or have an inkling of something.

She said AUTISM is a distinct possibility.

I remember nodding and holding a stack of referrals. I remember looking down at the CEO and watching her rock her little body back and forth so hard that the carriage was about to tip over.

I was in shock. She was perfect.

I remember 6 months later bringing Baby in to see the neurologist to show the therapists in the house that she was okay. I remember walking out with paperwork saying PDD-NOS.

I remember the doctor taking my hand and asking if I was okay. I remember looking at her and saying, "No, but I will be."

I remember coming to see her with my son. I saw him rocking and I was so frightened that I could barely breathe.

I remember playing it so cool but she knew. "I am so sorry. Let's discuss the types of therapy that will be the best for him at this time."

I remember my hands shaking when taking all the paperwork. There is so much paperwork. That was the only outward sign of my emotion. "What's another one, right?" I said to make a joke.

I remember her giving me a hug. "It'll be okay. You'll see with therapy, he'll do just as well as his sisters."

She was right.

There is nothing more scary than the idea of something you don't know or understand. The most important thing to realize is that a diagnosis is not a reflection of you, your spouse, your family or your child. It is not giving up the dreams for your child. It's learning how to make all your dreams come true in a way that is meaningful to your child.

I thought for a time that my dreams for my children were dead and broken but they are not. Many people describe autistics as living inside a box, everything needs to be orderly and symmetrical. When I felt that my dreams had been shattered, it was because I was afraid to think outside of the box myself. Once I was willing to think of ways to accomplish our goals, I realized that they are going to do everything they hope to do because my husband and I, along with their team of talented doctors were going to help us find a way to make them happen.

Their potential is limitless, just like always.