This post is part of a continuing series, The Top Fifteen Things a New Parent Should Know which was written to the parents of a particular baby boy who has Down syndrome. These are the things I wish I had known from the beginning when my own daughter was born.
There was a time when parents were parents and professionals were professionals, and the two didn’t mix. We could confidently go to the family doctor for answers to our questions. We could go to the therapists and they implemented a plan that we simply accepted. However, if you want to change your son’s future, you must become the expert on everything related to Down syndrome.
Welcome to the New World
Most new parents of a child with Down syndrome are sent the warm, engaging article by Emily Pearl Kingsley, “Welcome to Holland.” I like this article because of the comfort, and order and peace that it communicates from an experienced mother. However, I’ve come to realize that my own experience with Down syndrome is not described by Kingsley’s article.
The world of Down syndrome has been thrown wide open. Sixteen years ago, when my daughter was born, it was an ordered, comfortable world of expert professionals and compliant parents. That world is gone forever. Three things have happened. First, the Internet. Parents now have the ability to do research for themselves, and more importantly, to network with one another. Second, the Human Genome Project. In 2000, the complete mapping of the 21st chromosome was published. For the first time ever, we actually know what genes are triplicated in Trisomy 21. We can then postulate specifically what that triplication is doing in the bo
dy. The next obvious step is to do something about it. The third thing that changed the old world was the development of a genetically modified Down syndrome mouse. This allows researchers to actually try stuff, and then crack open the skull of the mouse and see what happened to the brain. Our world is now uncharted territory.
It is like we have arrived in a previously unknown continent. Some came because of the love of challenge, and some were forced to come against their will. Nevertheless, we are here, facing a world of bounty, but also of extreme danger.
Some of us are explorers, and like the explorers of old, are looking for things that may not exist. For decades, explorers in the New World searched for a Northwest Passage. They never found it, but in the process that guy Mackenzie mapped half of Canada. Others looked for the Fountain of Youth, and again never found it. But they mapped Florida. New discoveries are happening all around us.
Some parents are more daring explorers than others. Some came and stopped at the east coast. And that was enough—and awesome for them. Some pushed west. Some are mountaineers who brave the dangers but benefit in the awesome beauties. Some, like Lewis and Clark are pushing all the way to the Pacific and opening a continent before us.
Some of those tied to the power structures on the old continent have attempted to set up shop in this new world. On many of the forums and email lists, one can find them limiting discussion. “Watch out for that freedom of speech! It involves dangerous ideas!” Old power doesn’t give up easily.
This isn’t the Europe of the 18th and 19th centuries with the stifling power structures that hindered innovation. This new world includes the Wild West. It is dangerous, but exciting. There is life and riches, and gold and beauty… and danger.
In this exciting new world of Down syndrome, parents are the drivers. The collection of parents on many of the email lists is a far better source for expert information than the professionals in their towns. I don’t say this with arrogance, but simply as a statement of fact. Only a rare physician has the time to stay abreast of the fire hose of rapidly changing information relating to Trisomy 21. We parents force ourselves to take the time, because someone we love is depending on us.
To prosper in this world, you, the new parent of a baby with DS, have to know more than the professionals. We do need them for their advice about our choices. They have important wisdom and resources to offer. But they no longer provide the only choices, nor the only information.
Is it overwhelming? Yes. But take it step by step. Join the Einstein-Syndrome email list or one of a few others where open discussion is encouraged. Parents research and share the results with one another. Parents help newcomers learn the lay of the land. Parents explain the hard stuff to one another. Professionals join in, not because of their superiority, but because they also benefit from the exchange. It’s a new world out there.
You are Your Child’s Case Manager
I talked this week to a mom whose child (whom I’ll call Jacob) is medically complicated. Linda* is dealing with ongoing heart issues, a new seizure issue, and on top of that Jacob’s thyroid is out of whack. She just wants someone to take all the medical information, the best research, and then combine it with her goals and priorities for her son. Then Linda wants that someone to tell her what to do. Sadly, she realizes that the mythical someone doesn’t exist.
She has to get into the thyroid literature herself and understand the thing. Thankfully, there are websites devoted to helping regular people master this gland. For help she is emailing all the parents she knows who have had to try unconventional approaches to the thyroid, just to get ideas on what might work.
Meanwhile there are the seizures. What is causing that? Linda is not sure, but she needs to find out. So, several long sessions with Google are on the agenda. Plus more contacting of parent experts. The neurodevelopmentalists at ICAN have been helpful, with pointers for her research.
Linda is just a mom. But in Jacob’s eight years she has become an expert on chemotherapy, on nutrition, on genetic over-expression, on oral-motor and feeding weaknesses and their remediation, on heart function, on neurodevelopment, and now on thyroid. All because one little boy is depending on her for his life.
Begin a Medical Notebook
An early step to help the little boy who is depending on you is to begin a medical notebook. I didn’t do this at first, and I greatly regret it. Begin now and build a comprehensive medical notebook of everything related you your little guy’s health.
If you get blood work done, get copies of the lab reports for yourself. On the lab sheet, or in a dated format correlated to it, record dosages of any drugs or supplements he was taking at the time those labs were drawn. If you see a specialist, get copies the those records. Specialists seldom tell you all that they observe. But it is in their notes.
Keep a sickness log. Write down the duration of any sickness. Write down what treatments you used.
Record milestones or changes in ability and learning. Later you’ll be able to see patterns, and correlate those with supplements, or treatments or therapies.
To prosper in this new world, you the Professor Parent PhD need to keep the records people used to trust the professionals to keep for them. Those records give you, the expert case manager, important data for making wise choices.
*name changed to protect privacy
Filed under: attitudes, Down Syndrome, medical Tagged: | Down Syndrome
Thanks for the invaluable information and advice. As a parent of 4-year-old identical twin boys with Down syndrome, identifying a new source of information to help me muddle through is a life-saver.
Great post, Miriam!
The sad fact is that Parent Professors have limited time to pursue therapy options. So, my advice is to put that limited time into those things that build for good speech.
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