"I only have Down Syndrome sometimes"

Some of you have likely seen this blog link already, but if you haven't it's a FABULOUS reminder that our kids are not to be defined by this pesky and perky extra chromosome.

But we ALL can find some great encouragement through this post. The root argument is that for those of us who are prone to over-parenting ... don't. And don't put them in a box based on a diagnosis... or a character trait... or birth order... or whatever.

I'm definitely not saying you should have a boundary-less parenting philosophy. I think the key is having the wisdom to know when those boundary lines can be pushed out.

Thank you, Dave Hingsburger, for eavesdropping. You shared something we ALL need to hear.

They make, if not the best, a very serviceable eggplant parmigiana. We don't go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It's perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy's Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That's what I do.)

So, aside, aside, I listened.


It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.


'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'


They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

Ask Dr Trotter

Q: We have an 18 month old son with Down syndrome [DS] who we think is doing well. We read a recommendation on a DS website that all children with DS be screened for celiac disease. Our pediatrician is unsure this recommendation makes sense. Should we do this, and if so, how is it done?

A: Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. Children [or adults] who have celiac disease [CD] cannot tolerate a protein called gluten [found in wheat, rye and barley]. When people with CD eat foods or use products containing gluten, their immune system responds by damaging the small intestine, and they become malnourished due to the poor absorption of nutrients. CD is a genetic disease, meaning it runs in families, and can be triggered at any point in the lifespan. CD may be triggered – or become active for the first time – by the introduction of gluten to the diet [typically around 1-2 years of age] or by such diverse events as surgery, pregnancy, viral infection, or severe emotional distress.
There are basically 3 steps necessary for a child to develop CD. First, they need the genetic makeup that makes them susceptible to this disease. Second, the child needs to be exposed to gluten. Third, the “trigger” must occur that allows the immune response to damage the small intestine lining. CD affects people differently. The most common symptoms in childhood include failure to grow, weight loss, excessive gas, recurrent abdominal bloating and pain, and chronic diarrhea, and irritability.
So why is this disease of interest to the DS community? It appears from studies done in the last decade that people with DS are at higher risk to develop CD than the general population. In the United States the general population has between 0.5-1.0% risk of developing CD, while various studies have found a 4-7% risk for children with DS. With our understanding of the increased risk for children with DS, a good deal of discussion is taking place nationally regarding the wisdom of screening all DS children for CD at age 2 years. At this time there is no clear cut recommendation and a number of studies are ongoing.
One of the major problems making the screening recommendation difficult is the difficulty in making the diagnosis of CD. The only absolute way to diagnose CD is through a small bowel biopsy. In children this requires anesthesia and direct endoscopy. Since such a procedure is invasive, expensive, and carries some risk, it is not in the best interest of the child or family to do a biopsy on every child with DS. Recently, research has shown that children with CD have higher than normal levels of certain autoantibodies in their blood. These antibodies can be measured with a simple blood test. Unfortunately these tests are difficult to perform in the laboratory and difficult to interpret. They do, however, give us a reasonable device to identify those patients who should have an intestinal biopsy. The currently recommended tests for this screening include:
Immunoglobulin A [IgA]
anti-tissue transglutaminase [tTGA]
IgA anti-endomysium antibodies [AEA]
Until we resolve the controversial issue of routine screening, I certainly recommend testing all DS children who have any of the clinical signs and symptoms of CD. As CD is a very difficult disease to diagnose and the symptoms overlap with many other medical conditions [irritable bowel syndrome, Crohn’s disease, iron-deficiency anemia, intestinal infections, and many more], don’t hesitate if CD is one of the possibilities.
Treatment of CD is simple to prescribe and very difficult for children and families to follow…the complete avoidance of gluten. A gluten-free diet includes eliminating all wheat, rye and barley, as well as the many products that have gluten as an ingredient [read a few labels and you will see how prevalent this nutrient is in most of our diets]. I would only start such a diet with the help of a registered dietician

BAY AREA BUDDY WALK - 10/11/09

Hello Everyone!

Come join our Bay Area Buddy Walk at Heather Farms Park in Walnut Creek Sunday October 11th. Raffles, BBQ, Live Music and Games... Lot's of fun!!

Registration is from 10am to 11am. Walk begins at 11:30. 12:30 lunch and more fun!

Register on line at www.firstgiving.com/dscba and start fundraising by creating a personal webpage too.

See you there

Nancy LaBelle
Executive Director
Down Syndrome Connection of the Bay Area