The below is from the mother of a daughter with Trisomy 21.

>>I think what impresses me most is your confidence applying information you’ve read in books internet or other research. I don’t have that confidence. Although I may see the logic in a particular therapy eg., I’m often suspect about the possible unpublished side effects long/short term). ANd I haven’t found any doctor that is well versed enough in both conventional and non-conventional worlds, without having an agenda to push, that I find reliable. Do you know what I’m getting at? I’d like to know with whom, in Israel, you have consulted that you feel comfortable with. Thanks.<<

This is an interesting question and basically it is, how do you make a decision without the approval of an authority figure?

There are many wonderful trained professionals out there, both conventionally and alternatively trained.  There are also plenty of professionals who are mediocre.  But no matter how good their training or how knowledgeable they are, they can’t know everything.  And no matter what, no one – NO ONE – cares more about my children than I do.  A parent has a level of motivation and concern that you can’t pay anyone to have.  

What helps me to be open to learning and applying new information is to look around and see who is getting the kind of results I want to have in my life – I don’t know if it’s ever been someone doing what everyone else around them is doing.  When someone has a high quality of life in any area of life, it’s because they’ve been willing to look to their inner compass and take steps outside of the mainstream despite their discomfort or fear.

Reading books or doing online research is only part of my decision making process for Yirmiyahu although that has been significant.  I began my online research specific to Trisomy 21 when Yirmiyahu was 2 days old and in the NICU.  During those first few days, I spent my time in the hospital pumping milk, spending time next to Yirmiyahu’s incubator with my hand on him (wasn’t allowed to hold him at first) and thirteen hours a day on research.  I was a research maniac, trying to cram huge amounts of material in a short time to become conversant with the important points.  Once he was out of the hospital my time spent daily on this dropped to about two – four hours for probably his first year.  I still read a good bit and the more you learn, the more you understand there is to learn but I don’t feel I have to spend as much time on it now as I did then since I’ve gotten a decent understanding of various issues involved.

For most decisions I’ve made, I’ve discussed my concerns with alternative and conventional physicians.  Sometimes they didn’t have an opinion because they weren’t familiar with what I was asking about.  You have to know who to ask about what – you can’t go to the hardware store to buy milk!  In addition to traditional doctors I also take Yirmiyahu to a naturopath and osteopath and I ask them both certain kinds of questions.  His osteopath can explain the specifics of facial bone structure and how it’s affected by manipulation whereas others who aren’t knowledgeable in this field would say this is impossible or unproven despite the long history of this work.

I’ve spoken to therapists about different approaches.  I’ve been in touch with those who aren’t certified but have become experts in different areas by studying every possible bit of information relating to their child’s area of challenge.  I’ve been in touch by with one such mother about T21 and another regarding thyroid issues.   I’ve been very fortunate to find two wonderful resource people in the US who have helped me interpret the results of Yirmiyahu’s bloodwork.  Everyone has different expertise and experience that they draw on.

There are consequences to taking action.  Hopefully they’re positive but of course there’s always the possibility that they won’t be.  At the same time, we too often get caught up in our desire for security and forget that not taking action also has consequences.

To illustrate this, I’ll share the following that is specific to Yirmiyahu, which I’ve written about before.  Yirmiyahu began having breathing problems when we introduced dairy formula that didn’t resolve until months later when I was finally able to convince the doctors he needed dairy-free formula.  When we introduced soy formula he began throwing up repeatedly after having just six ounces and had to be hospitalized.  But technically he has tested allergen-free on allergy tests and I was told by a pediatric allergist there’s no reason not to give him either of these things.  If I had chosen to be passive out of fear of doing something differently, he would still be having dairy formula and require regular steroids and nebulizer treatments twice a day to deal with the side effects.  

Knowing that Yirmiyahu was born with a weak digestive system that was further compromised by high doses of antibiotics in his early days, I chose to give him supplements that included probiotics early on (probiotics started at four days, vitamin supplements started at 8 weeks).  I also decided not to give Yirmiyahu gluten when he began eating solids.  He tested celiac free on every blood screen so it seemed I was being unnecessarily restrictive; more than one doctor told me Yirmiyahu has no issue with gluten and I could give it freely.  I didn’t believe it and continued to give him many other foods but not those containing gluten.   This decision wasn’t validated until recently when I sent his latest labwork to someone with alternative health training, who said the results clearly indicate an area of concern since he doesn’t eat gluten and yet his test results still are showing antibodies – that’s significant.  Two pairs of eyes looked at the same information and came to two opposing conclusions .

I’m giving these examples to show that just because you ask the professionals and you go along with their opinion doesn’t mean the results for your child will always be positive.  No  matter what, there will be different opinions about every single decision you need to make for your child.  No  matter who you listen to, you risk doing something wrong that could have consequences long term that you can’t anticipate.  So what do you do?

You strengthen your inner compass one decision at a time. You look into an issue as much as you can, you ask those who are knowledgeable for their opinions, you take it all into account, you ask God for help in doing the right thing for your child and then you make the best decision you can based on all of that.  We’re all doing the best we can with the information we have.  We have no guarantee that our efforts will bring us success, but we can be fairly assured that if we don’t make any efforts that success isn’t going to result.

My vision for Yirmiyahu’s future is one that medical and therapeutic professionals who are traditionally trained would probably say isn’t realistic.  Some of you would say I’m dreaming also.  That’s okay.  I’m not looking to anyone else to tell me what I want to do is reasonable or acceptable.  I’m looking to my inner compass.

Avivah