Monday, 11 March 2013


My concern this week has to do with the EI/therapy issue that many bloggers are talking about recently. Something that many parents with kids with DS are realizing is that therapy and early intervention is not a magic panacea that will make our kids"catch up" or be "normal".

My views on EI have changed greatly since Phoenix was born. At the beginning I took every available service offered to me. I felt like I needed to do this to give Phoenix the best possible start in life. And I don't think this is an unusual feeling to have. I think it is a very common to approach after our children our born - to mitigate the damage the extra chromosome does to the body. Our children have surgeries to fix hearts, to fix intestines and colons, to remove tonsils and adenoids, to put tubes in their ears. All in the hope to mitigate the effects of the extra chromosome. Why wouldn't we engage in EI to mitigate the developmental delays?

What I have discovered in the last 3 years is that nothing we do in EI mitigates the developmental delays. Nothing. Our children will be delayed, but they will get to each milestone in their own damn time. Some earlier, some later. And all the damn therapy in the world won't get them there sooner.

So why are some many parents killing themselves to fit hours and hours of therapy into their day?

I'm not sure. Mommy guilt? A subtle innuendo from moms whose children are not as delayed that this is the magic bullet to ensure milestone are being met? Pressure from EI organizations and therapists  themselves that children need to be constantly working on skills? I really don't know, but it disturbs me when I see parents of newborns asking about how they can sign their children up for expensive neurodevelopmental programs that have never been back up with any research.

I guess since backing away from therapies, and seeing Phoenix flourish regardless, that I have become a little disenfranchised with this push for EI. I have been very, very, grateful to have the DS team to go to to get tips about how to work with Phoenix or new strategies to try to improve her eating. This type of support has been wonderful so that I am not at home spinning my wheels. I find that all it requires of me is to be a bit more mindful during my interactions with Phoenix to try to extend her language or make an effort to show her how to do things for herself.

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