How can a new parent sort though the masses of information about Down Syndrome and know what is important and what can wait? Everything seems so urgent!
After 16 years of sorting through info on Trisomy 21, both urgent and unimportant, I distilled everything I had learned into 15 topics, sorted in order of importance. I wrote these up for a family who had a new baby boy with Down Syndrome, and posted them on this site, in the blog.
Slow down. Not everything is urgent. The most important thing is to love your baby, and enjoy this little person who has joined your family. Everything else in this list can be tackled over the course of a year or two. So, consider this a course in parenting a child with DS.
1. Embrace Your Calling Having the right attitude is the most important step for new parents to take. And the most important attitude for you as new parents of a child with Down syndrome to know is that you are living in the midst of a calling from God.
2. Beware of Creeping Low Expectations The second important attitude is to fight the negative onslaught of low expectations. High expectations means having a realistic understanding of the obstacles, realizing the work involved, and then rolling up your sleeves and getting to work.
3. Acknowledge and Treat Gene Over-expression “Gene over-expression” means that because a particular gene has three copies instead of two, the cells make too much of the particular protein coded for on that gene. Unless you acknowledge the fact of gene over-expression, you will ignore the most potent tools to treat the cacophony of metabolic errors that is Trisomy 21.
This is the post which is going to make me unpopular. Vaccines are so doggone controversial, yet so much a part of the medical orthodoxy that questioning them is tantamount to heresy. Either this question is the earliest thing to research because the decisions must be made so soon, or the question is entirely irrelevant. But you won’t know unless you research the controversy for yourself.
5. Get a Neurodevelopmental Evaluation and Do the Program The typical therapist looks at some subset of your child and checks to see if one of the techniques in her bag can be applied. If your child doesn’t progress, it is not the therapists’ fault in their opinion, it is your child’s fault. Not so with ND.
6. Prioritize Behavior Good social behavior is the most important skill we can teach our children. An adult who is brilliant but who has poor behavior is not welcome anywhere. An adult with a severe mental handicap but with good behavior is welcome everywhere. The biggest handicap your child can have is poor behavior.
7. Pursue Speech, not Sign We look at four developmental skills that are necessary for good speech and language. These are auditory tonal processing, auditory sequential processing, social turn-taking, and oral-motor skill.
8. Don’t Wait for “Their Own Time.” I read this one often, especially on the blogs of the new mothers, “Children with Down syndrome learn everything any other child learns, just in their own time!” There is a reason that this hope-filled statement is not made by parents of teens and adults with DS. We know it isn’t true.
9. Learn to Build and Support the Immune System If you have a child with Down syndrome, you probably have a child with a poorly functioning immune system. Frequent sickness is an expected part of the “syndrome.” Yet it doesn’t have to be. Once you understand the “very good” design of the human immune system, then you can begin using tools to support that design rather than taking actions which undermine it.
10. Focus on Gut Health Constipation is a gut wrenching problem in our kids. Literally. If you spend any time at all on Down syndrome related forums and email lists, you will see this problem discussed. Yes, we moms actually get on the Internet and talk about poop.
11. Become Professor Parent, PhD The world of Down syndrome has been thrown wide open. In 1992, 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…
12. Begin Now with a Kitchen Makeover In order to thrive, and to avoid the unhealthy processed foods, you gotta learn to cook. Many years ago I decided that it must be possible to make a casserole without a can of cream of mushroom soup, and I went on a hunt. If you are saying, “That’s easy, Miriam, just use a can of cream of chicken soup!” then you need to learn to cook.
13. Aggressively Treat Ear Fluid and Upper Respiratory Infections Upper respiratory infections are an expected part of the “syndrome” of Down syndrome. If you care at all about language development for your son, treat these minor health issues with the seriousness that you would treat cancer. Ear fluid and sinus infections set up a cascade of physiological and neurodevelopmental responses that result in severely compromised speech and language in older people with DS.
14. Start Ginkgo Biloba Now The world of Down syndrome is changing. In my opinion, most babies born today will grow up to resemble little of the “syndrome” identified by Langdon Down—if their parents take advantage of the most recent research findings. This is a big “if” because it is up to the parent to seek out the research findings and not wait for the established support organizations to catch up.
15. Treat the Thyroid Many symptoms of low thyroid function—including mental retardation and slow growth—are eerily similar to those of Down Syndrome. Indeed, low thyroid function is a usual part of Down Syndrome, and yet most physicians are lax about this entirely treatable problem. It is quite likely that much of the “syndrome” named after Langdon Down is the result of low thyroid function, especially in infancy and childhood.
The topics of these posts distill what I would do if I were starting over again with a baby with Trisomy 21. Many of these are things I wish I had known and started when my daughter was young.
But don’t take my word for any of this. You, the parent, need to research this stuff for yourself and make your own decision about what is important to do for your baby. You are going to be the expert, the Professor Parent, PhD.