Friday, July 22, 2011

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.


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.

1 comment:

  1. Youre brilliant as always Priscilla. Not giving up on your dreams for your child is so true. I can't tell you how many times Alexs pediatrician uttered those exact words to me. Its not an easy road but it's a fulfilling one.