Beyond Denial

Originally posted Tuesday, August 25, 2009

There’s so much excitement once the baby is born, we sometimes forget that there is much we still do not know.   She was a quiet, well-behaved baby.  Never made a mess with food; didn’t have difficulty eating with a fork on the first try; not a sound in church.  She was, and still is, adorable.  But who knew?

I took the doctor’s advice and I had the speech and hearing test done. She could hear – that wasn’t the problem. The challenge was the speech part. Watching the professionals do their job was enlightening and yet disheartening. For the child, it’s all fun and games. As the parent – I suddenly realized what gaps existed. Simple instructions and questions go unanswered.

In my own world of joy, I failed to realize how much was passing my child by or simply not being acquired. The good news was that the development was like a star with points….there were places where she was way ahead and there were places where there were developmental delays. I was still very naïve so I left relieved and committed to taking the hearing test just to be sure that there were no problems there.

Hearing test was fine…she could hear the noises and respond as required.

Being satisfied with results that make you comfortable could be a mistake.  Because I was really not sure what I was dealing with I tried to find a place that could give me a broader and more specific assessment. I was in luck…Johns Hopkins University is the home of the Kennedy Krieger Institute (KKI). You really don’t know what you don’t know until you make a discovery. Kennedy Krieger was a discovery of immense proportions. Not only did I learn about the range, scope, and quality of the work they do, but I also learned about a condition I had only heard of in passing – Autism.  Now I became worried…what if this was the diagnosis, how would she survive in this world? How would I survive?

The developmental assessment was eye-opening to say the least. Sometimes it’s not just about the money.  It was costly but I had to have answers. Some kind of guide to what the future might hold.  If you want information, you sometimes have to find the money to get at least a hint at the answers. Let’s not even talk about what is covered by the insurance and what is not.

The testing session, like others, featured games and simple requests for my daughter to complete. The first couple of questions seemed pretty harmless and she kind of answered. Reality struck when the practitioner simply said “put the block on your nose?”  It seemed easy enough to me so why was there this blank look. I knew the look…it meant ‘what are you saying?’.  I’d seen it before but it had never registered as an indicator that things just weren’t connecting. My heart sank…it only got worse from there. Simple requests…draw the pattern, finish the pattern, complete the pattern…..nothing. Then there were the questions asking for information and nothing could be produced.

While my heart sank, the godmother who was with me affirmed and encouraged my daughter.  I may have done so but I remember most the sense of awe at how far behind she was

The diagnosis – well, she’s not autistic. (That’s good news, or is it?) She’s got PDD-NOS….pervasive developmental delay not otherwise specified…and it manifests as a speech delay. What does this mean?!  I understood clearly that at 36 months her language skills were at the 18-month range.  I could do the math enough to know that represented an 18-month lag.

And so began a new and different journey in parenting. Something stole the joy of being a mother and replaced it with confusion, anguish, fear, concern not only for my child in the present moment but also the future. With this diagnosis, what kind of future could she have?

Getting past or through the denial is the first step in a long journey. But, there is life, hope, joy and triumph once you get beyond denial.