Parent Resources, Uncategorized

Resources from the Down Syndome Diagnosis Network 1st Annual Rockin’ Mom Retreat

On Saturday, September 12th I had the privilege to speak at the 1st Annual Down Syndrome Diagnosis Network Rockin’ Mom Retreat in Minneapolis, Minnesota. Unlike other conferences focused on parent education, this one was all about nurturing mothers who shared a common bond – a child born with Down syndrome.

Attribution: Ellen Snow
Attribution: Ellen Snow

While I do not have a child of my own with Down syndrome, three of my 5 siblings do. My husband Peter and I have two sons and our oldest was diagnosed 5 years ago with Tourette syndrome. I’ve also had the honor of listening to hundreds of diagnosis stories from the many families I’ve met while practicing as a speech-language pathologist (SLP). My morning session blended my experience as a sibling, mother, and professional as I shared the very personal ways I grew and changed because of my son’s diagnosis.

The following links are resources/voices/supports I’ve either benefited from myself, used in my professional practice, or generally found useful.*

Abundant Mama – I cannot sing the praises of author Shawn Fink enough. She is a calm and encouraging voice when life feels chaotic. I’ve completed her Rise and Shine program which helps mothers intentionally think about self-care before the rest of the family is awake. (Yes, I’m a morning person. If you’re a night-owl or have a new baby, you may want to avoid this challenge.)

Taking Care of Your Marriage – Six months into my son’s diagnosis I had a huge wake-up call. My husband gently brought to my attention that I’d spent the six months post-diagnosis “doing” and “fixing”… but our relationship was crumbling to pieces. With love, patience, and many conversations we made things work again. In starting down the path of a child’s diagnosis, sometimes we neglect those closest to us. Communicating openly with our loved-ones about what we are feeling, needing, and/or thinking about is at times a struggle. However, the alternative, shutting out the ones who love us the most, prohibits us from moving forward together.

One Word New Year – The One Word New Year is an alternative to the traditional resolution. Instead, each person chooses a word that speaks to them to use as a mantra or intention through the year. I wrote about choosing the word NOURISH in 2014 and the inspiration it provided.

WP_20140107_003The Fulfillment Pyramid – Paralleling the One Word New Year, life coach Rachel Cole helps identify everyday practices that create a well-nurtured life and encourages writing them down in a pyramid or hierarchy. I filled my own pyramid and placed it on our fireplace mantel as a daily reminder to nourish my heart, body, and mind.

It Takes Two to Talk – This research-based language program is aimed at increasing communication between parent and child. As an SLP I firmly believe that getting to know your child is the most important thing a parent can do. ITTT teaches parents how to engage their child in such a way that helps him understand language and then use it when he is ready.

The Quiet Struggle – This article in Working Mother examines ways mothers of children with special needs consider the benefit of self-care.

DSDN I Run 4, 5k Attribution: Cory Dahlkamp
DSDN I Run 4, 5k Attribution: Cory Dahlkamp

Heart Strides – As a runner who has fully experienced the mental health benefits of hitting the pavement, this organization speaks to me! Heart Strides mission is, “to support Moms during a time when they are least likely to make their health a priority. To achieve this mission, we provide new running shoes to Moms caring for children with a critical/chronic illness or a special need.”

What helped me find my balance after our son’s diagnosis may not help you. I love reading, running, yoga, and quiet mornings. Each of these things helped me process and heal after feeling like my heart was shattered.

There are many ways to provide self-care. Do you have an online resource that’s spoken to your Mama heart since your little one’s diagnosis? If so, please share in the comments!

*Disclosure: I’ve received nothing to endorse any of these sites. The viewpoints expressed here, and in the sites themselves, are not intended to treat or diagnose. They are provided for informational purposes only.

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