I began running an early intervention group for babies with DS at our local Playhouse. Bright and early every Saturday morning, I watched moms bring their babies in carriers, with bags loaded with supplies for the tiny human, older siblings…sometimes toddlers and preschoolers…with their bags full of treats and preferred toys and activities to keep them occupied….sometimes Dad came too and was so excited to meet other dads and learn the things we were talking about.

 

The session was over in 45 minutes, but I could always count on being there much longer. Moms would catch me with questions…always seeming to start with “It’s probably nothing, but…,” “You’ll think this is dumb, but…, and my favorite, “Can you explain this again to me? I need to talk to my son’s therapist / doctor / daycare…” Each question prefaced with the belief that others were the expert, and mom needed permission to ask a question.

 

We tried to move the date to a different day of the week since so many moms were at home with baby and could use a Saturday off, but they unanimously voted to keep it Saturday morning so Dad could be involved.

 

The groups themselves left me breathless and sweaty as the moms took the info and created routines and plans with a passion resulting in big progress. By the end of the year most of the babies were moving up to the toddler group and I was shifting from baby to baby demonstrating crafty ways to position or play for neuroplasticity and accomplishing the next great feat of development. 

 

I realized that many of these women were barely 3 -6 months out from receiving one of the most life changing pieces of news they could imagine. I remember those early days … determined to make everything good for the family, keeping the hard thoughts in because one whiff of fear or uncertainty from mom would send the whole house of cards tumbling, the diagnosis and myriad of other health issues our babies may have had to deal with required our steady guidance – as if we knew anything – but we were Mom. The rock.

 

These people were mothers, partners, teachers, therapists, writers, business people, engineers, lawyers, and of course, women with hopes, and dreams, and jobs, and aspirations, and families. They were daughters of sometimes aging parents, partners who feared the way this news may affect their marriages or relationships, and in the cases of women whose partners left, women who now faced the prospect of doing this incomprehensible thing, alone. 

 

No time to self reflect or for self care. 

 

These women were still not even a year post-partum and were absorbing the emotional whirlwind of the family, still being mom for her other kids and now responding to appointments, therapists, and doctors. These moms spend their days making the day to day life seamless, and her nights reading everything she could, and adding all of it to her rapidly growing desire to learn more and implement it all for her child. 

 

She eats when she can, puts on whatever is clean (or passably so), and throws her hair in a ponytail. She may find herself having difficulty being with her old social groups, and not ready to accept her place in the new social groups in the world of Down Syndrome. She’s scared and tired, and sad, and angry, but also in love with her new baby, determined, and loyal, and brilliant.

 

Worst of all, she does not allow herself the space to grieve. She absorbs the fear and sometimes prejudices of those closest to her, and makes it her mission to make it all OK. 

 

And if what we do to ourselves is not cruel enough, here comes the barrage of literature telling us things our children may never do, limitations we can expect, and abysmal outcomes of current systems. 

 

We have dear family members and friends send us notes of “encouragement” telling us how strong we are, and how special we are. We want to cry but that is way too vulnerable…if we start, we may not stop.

 

For years, DSAP was my refuge. If I learned something that could be helpful, I wrote and talked about it so it could benefit more than just my son. I always knew that part of my purpose for doing so was to better the way our children developed and learned.

 

After all this time, I realize that I got way more out of DSAP that I had ever given. The moms became my “group.” We would all dive in headfirst to an issue posed by another member, we would all add things we did that were successful, things we learned, hacks we tried, ways to reimagine our daily routines to maximize things for our children.

 

I banged the drum (still banging!) about refusing to believe the narrative that limitations are a given the day of their birth…and using all the knowledge and experience to create environments for development. 

 

I also was passionate that it was not a group to “vent.” We all intimately know what life can look like sometimes. I wanted DSAP to be a place that was positive and inspiring. I am proud of DSAP and will be forever grateful for that one day I clicked “Create a New Group” on FB.

 

I firmly believe the action plans we are putting together for our children are changing the world. For real. I hear things in conversations that I had never heard 17 years ago as a therapist. We are a force.

 

But, what about us? 

 

Our dreams become inextricably tied with our dreams for our child. Our mental health depends upon how our children are doing.

 

A True Action Plan needs to include our needs as well.

 

The future endeavors of DSAP will remain steadfast in its mission to our children, but it is also determined to meet the needs of women who have children with Down Syndrome. Our mental and physical health, our goals and potentials, and even our own brains demand such a place. 

 

DSAP can not just create potential pathways for children with DS without creating the same possibilities for us as mothers.

 

I value each and every one of you and look forward to new thoughts, new opportunities, and new action plans, that lift us all. I can’t wait for the community to gather around.

 

I reject accepting the New Normal and embrace creating our New Extraordinaries!

 

Best,

Geralyn