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3 pieces of advice you can ignore after a Down syndrome diagnosis

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In honor of Down Syndrome Awareness Month, I wanted to share my advice on advice you do not need to follow after receiving a Down syndrome diagnosis for your child.

I was 11 weeks pregnant when my daughter Mara was prenatally diagnosed with Down syndrome. I was shocked and terrified of the unknown. And do you know what happens when you are shocked and terrified of the unknown? You make decisions that you would have never made under other circumstances. If I could tell myself what 3 pieces of advice that I received over and over I could ignore, it would be these 3:

  1. Join a support group. Here’s the great news: if you need a support group, there are many that you will be able to find online with thousands of thousands of members. Chances are that, through the group, you will be able to connect with a few local families even. But here’s the thing for me: I did not need a support group. I felt exhausted and as if my energy was being stolen every minute I spent in those groups. So, obviously I left. While I did connect with a couple of local moms that I still keep in contact with today (and I am their kids’ cheerleader for life), in hindsight, I would not join those groups again. I simply did not need to and maybe you don’t either. Join them if they are beneficial to you and only then.
  2. Connect with a family with a member who has Down syndrome. Once you start sharing the diagnosis, anybody who knows a person with Down syndrome would offer to connect you with the family. Again, it may be exactly what you need and that is OK. But let me share my experience with you in case you find it helpful. Through one of the support groups I should have never joined, I was connected to a family who had a boy with DS. The mom agreed to meet for lunch as soon as I contacted her. So was very kind and generous with her time. But I left our lunch terrified and feeling totally defeated. We had nothing in common. The approach I wanted to take had nothing to do with hers and I felt as if I was lying to myself and she was probably right because she had more experience than me (today, I know that we were both right because we both have taken the best decisions for OUR children). My point is, the fact that somebody’s kid happens to also have 47 chromosome does not immediately turn you into this tribe where everybody has the same needs and wants.
  3. Read X or Y book. When you are afraid of the unknown, it is only natural to want to find answers. This will happen after a Down syndrome diagnosis and, trust me, I felt like I needed to know it all. I wanted to be an encyclopedia. But do you know what? You do not need to know it all just like you do not need to know it all for your neurotypical child. You need to find the information that resonate with you. The information that guides you in the direction you want to take your parenting journey towards. All in all, you want to read materials that feel right to you. I ended up closing many many books 15-20 pages into them. They talked about Down syndrome, yes. But they were not for me. They did not resonate with me. So, no matter how many people told me about them, those books were simply not part of what I needed. On the other hand, I found many others that were exactly what I was looking for. Unfortunately, the narrative about Down syndrome tends to be quite negative. Do you truly want to spend your energy on that? That is your call. Just know that there is not “have to”.

If you just received a Down syndrome diagnosis, here is what I have to say to you: CONGRATULATIONS ON YOUR BABY!

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