Tuesday, September 11, 2012

Hitting the jackpot

I really should start playing the lottery, something with a huge jackpot and low odds. I think I'd have a great chance of winning.

I have three children aged five and under. My first two children have special needs. My daughter has Prader-Willi Syndrome and my son has Duchenne Muscular Dystrophy. The odds of having two children with these two genetically unrelated disorders – both have random mutations – are 1 in 52,500,000. Baby number three (above) does not.

Now consider that I am a special education teacher and my husband works in the field of special needs. What are the odds that one family would include two special needs professionals and two children with unrelated, rare disorders? Some folks would say it’s nearly impossible.

You would be right to think that I take comfort in statistics and science. But the day that I received my daughter’s diagnosis, science shook my world. The doctor leaned across a table and said, “I have a diagnosis for you,” as if she was offering an unusual appetizer. I listened numbly as the doctor talked about chromosomal deletions, genetic testing, percentiles and DNA.

After meeting with the doctor, my husband and I sat in the hospital food court, holding cups of cold coffee and trying to process the news. We looked at the papers the doctor gave us. I now know we were in shock. What does Prader-Willi Syndrome mean?

We clung to our coffee cups and stared around the hospital food court. Everything – people walking by, the bright lights, the shiny tables – had a surreal quality. The world as we knew it had changed. What would this diagnosis mean for our family? How would we tell our relatives? What kind of life would my daughter have?

Our daughter was upstairs in the neonatal intensive care unit. She was 15 days old and had a feeding tube that ran through her nose and into her stomach. She was in the NICU because she couldn't feed and became dehydrated shortly after she was born. My daughter was a pink, floppy, blonde-haired, blue-eyed beauty. We found out later that fair complexion, low muscle tone and initial failure to thrive (inability to feed due to low tone) are traits of infants with Prader-Willi Syndrome.

Soon it was time for my daughter’s scheduled bath. I raced upstairs to the NICU to give her a bath. Bath time was an important ritual for both of us. It was the only time of day she came alive. The water and rough towels stimulated her muscles so she looked alert and more like a typical infant, instead of a floppy rag doll. Her eyes were open and she looked around. Bath time was the only way we connected.

Soon a slew of specialists were involved in our lives – occupational therapists, dieticians, speech and language pathologists, pediatricians and home nursing when my daughter was an infant. The professionals would weigh her, measure her, assess her motor ability and compare her progress with other children her age. At first I memorized the numbers and rankings, believing that she would “catch up” with typical peers.

I wanted her to be the best child with Prader-Willi Syndrome out there. I would tell people that my daughter’s gross motor ability was at the second percentile. That meant that she was better than one per cent of babies her age. I was deluding myself with science and statistics – because ultimately it doesn't matter.

In the land of special needs, things happen differently, and if you don’t look for them you will miss them completely. My daughter is nearly three now and still cannot walk. She spends her day bum-shuffling around, a devoted mother to a dozen baby dolls, giving them bottles and naps and changing diapers. If her baby brother holds still long enough she will change him too.

If I spent my time focussing on what she can't do, I would miss everything that is truly exceptional about her. She does not speak clearly, but can tell knock-knock jokes. And she loves to laugh. She can't walk, but can dance. She moves with a rhythm and style all her own. She has a strong sense of fashion, and loves stylish clothing and accessories. She makes people happy, reaching out to strangers and truly bringing out the best in people.

There is no percentile chart that can measure this. It took us a while to realize that the things that truly count cannot be measured.

In that sense, I think we already hit the jackpot.

What’s my advice to parents dealing with a new diagnosis?

Hug your child, spend time with them and remember how special they are. Make time to connect with other parents who are going through the same thing or who are just slightly ahead of you on the journey in the land of special needs. With the Internet, the world is truly a small place. You are never alone. You can always connect with me on Twitter@specialneedmom2.

Angela is a special education teacher and special needs parent who blogs at Half past normal.


Great advice. Great post. Love it and love your outlook.
See you on Twitter ;-)

Great post -- thank you for sharing your wisdom.

since our son's disability issues, I have heard so many examples of surprises that come up at birth, that I now feel that having things work out is more of a miracle (as said in a recent post here) than having things be complicated is a rarity; wow, you have really risen to the occasion and are a great example for others