I thought it would be hard to find real life non-online community support. I had never known anyone with Down Syndrome and I assumed it would be very hard to find families and resources. I was nervous about meeting others. I still didn’t want to be swayed in my determination that Henry would be uniquely him. Unlike anyone else. I didn’t want to see limitations… I wanted to see limitless possibilities for him and I was afraid meeting people would damper my excitement.
We had links to support before we were discharged from the hospital though I could not reach out to the support groups just yet. James went to a new parent breakfast when Henry was just a few months old but I had started back to work and truly was still not ready to connect with anyone but Henry. We did initiate his early intervention immediately. Henry began interventions with the state and evaluations for private early intervention when he was 2 months old.
We were contacted by the local Down Syndrome network within 3 months to welcome us into the community. I feel so very blessed that this will be Henry’s home. Henry will be raised in one of the most amazing communities that has held a huge positive track record of including children with Down Syndrome in all activities. People with Down Syndrome are active participants in educational, social and recreational activities. They are included in the typical education system and take part in sports, music, art programs and any other activities in the community.
Through Henry’s early intervention classes we’ve slowly met other families and we’ve found our special needs friends. Some of whom have become part of our family. It takes time to connect. Maybe more time for me than most. I didn’t want to connect at all at first. Then all at once I realized I was ready. Through hours of watching each other’s kids struggle and achieve goals we’ve bonded in ways I could have never fathomed. I was certain no one could know the complex innermost parts of my mommy heart: the sublime happiness, dark fears, small but rich delights, and unique pains. Joy and peace fills me up knowing our families will grow together.
In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down Syndrome. You can find a list of groups at http://www.ndss.org/Resources/Local-Support. Some other great resources include:
Now for a cautionary warning: there are some pretty intense mom groups out there. This is true for typical mom groups too but especially for DS or disability mom groups. Online parent groups can scare the Hell out of you. You can find the most extreme success stories and the most devastating tragic journeys too. It was so important for me to remember my baby is his own person. I had to make a conscious effort. Taking hope in the triumphs I saw and carrying knowledge and caution away from the tragedies. I had to continuously keep in mind that our journey together is ours alone. No one else’s.
To new parents: The characteristics and developmental path your baby travels may be different than these stories you see and that’s okay. Take in what you see with a grain of salt. You’ll also find amazing tips and links to awesome products and tricks and therapy. Make your decisions about parenting after some research and follow your gut. I believe in listening to that small feeling in your chest that screams yes and no. It’s there for a reason. Every time I’ve ignored that feeling I have come to regret it. Your decisions and journey may be different than the online mom group.
Online groups can get especially ugly- maybe it’s the cyber world that allows us to type things we would never even think to utter to a real life person or maybe it’s just the world of mom groups in general. Know that there is always judgement even in these special groups but don’t get disheartened. Mom shaming doesn’t end in the typical moms. Someone will always be there to post a snarky comment on your search for or current choice of milk, clothing, technology, therapy, specialist MDs, vitamins, vaccination schedule, baby food, car seat, and nursery color preference. For real, nursery color preference! I stumbled onto a heated discussion about how different colors affect mood, ability and gender identification after a new mom posted that she wanted to use a “calming color” in the baby’s room. I was blown away. I could not believe some of the things these parents were saying to each other.
I had to take break from social media when Henry was young. I would get so much anxiety from scrolling through the groups… I’d feel guilty for how healthy Henry was from reading the hospital extended-stay stories. I’d feel shame if Henry was behind developmentally or health-wise than the successes posted. I’d feel like a failure when someone would post their incredible “mom game” of homemade organic baby food, dedicated learning program, breastfeeding wonder success, or some other amazing super mom thing. I would begin to sink into anxiety and depression.
I was barely able to keep my head above water as a new mom period. It’s a huge adjustment to have a tiny human completely dependent on you. There were days I didn’t even shower- I couldn’t. I would hear those pitiful phantom cries in the running water even when I knew they were just a figment of my mind. Henry would be napping safely with James exactly where I left them 2 minutes and 38 seconds ago, but I would still have to jump out just to check, only to start crying myself in relief that he was alright. Many days I questioned my mind. So I had to distance myself- self preservation and caring for Henry was number one priority. So do you. Do what is best for you. If you gain positivity from the groups, keep searching and posting. If you feel anxiety from the online groups, then take a break. It’s alright!
And recently I’ve dipped my toes back into the social media waters… then waded in. And it’s still too much. You can get lost scrolling. It’s like I get caught up in a time warp and suddenly the minutes got sucked away. Minutes that I should be playing with my two loves or keeping the house from being overtaken by dirty clothes, bottles, dishes, and diapers. I get invested and my heart becomes bombarded with it all. And I come away from a FB session feeling emotionally drained. So I am going to be backing up a little bit.
I pledge total safety in this blog. Ask the questions. I will honestly answer. Our decisions and journeys may be different, but that doesn’t mean we stand in direct opposition and judgment of any different decisions or path. We are all trying our best. We are all fighting for our sweet ones.
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