Down syndrome- Lessons Learned...Birth through 6 Months

I'm frequently asked for recommendations on things and before I loose knowledge, I thought it best to start documenting. Here are some things we learned early on that tremendously helped Porter. We hope you may find them helpful too! (In addition, I would encourage all families to become familiar with their local Early Intervention services and with The NDSS...they have many helpful resources for new parents).

• Low Tone & Positioning- When Porter was first born, we were concerned about his ability to keep his airway open in certain positions. We quickly realized that he wasn't strong enough for the bouncy seat or swing, as his head would tuck and it would become difficult for him to breathe. We wanted to help him grow stronger. 
• We learned about "midline" and  how kids with low tone tend to "splay" or let their arms and legs fall open. We also learned that Positioning (including side line) plays a role in helping to minimize splaying. 
• Tummy time is extra important for our kiddos. At first, they may not tolerate typical tummy time, so you can learn to adapt and help them grow. Position them on your own chest, or prop them with a rolled towel under the arm pits. Provide motivation (a sibling, a favorite toy, or your own face) to keep them focused. Here's a great resource with more ideas. 
• Feeding- Porter didn't nurse well at first. He took 45 minutes to drink two ounces of pumped breastmilk from a bottle. After working with OT and Feeding Clinic workers, we found out he was a disorganized eater. He couldn't suck, swallow, breathe in the proper pattern. He had reflux. We worked hard to help him eat better with lots of trial and error. Dr. Browns bottles worked best for Porter. By five months, he had eating figured out and became a champ at breastfeeding. I'm so glad we stuck it out! Here are some other things that helped us:
• Oral support made a big difference for Porter. Guidelines for feeding premature infants are often helpful for children with low muscle tone. This article includes a section on oral support, which helped Porter increase his milk intake during the first few weeks of life. 
• Oral motor protocol is huge for our kiddos. We were lucky enough to learn from other families of Talk Tools early on and to find a speech therapist who was Talk Tools certified. While your infant isn't necessarily ready for their protocols, now is the time to become educated. We had our first speech consult through EI around six months, only because we fought for it. Porter has relatively good lip closure and minimal tongue protrusion because of the protocol. In the infant stage, we did start to do some wiping of his face with a thick was cloth to raise awareness. We also did some "oral motor exercises" and Gum Massage with our gloved fingers inside his mouth at this stage (lip and cheek stimulation) that we learned from our speech therapist, before moving on to using the Summer Infant Gentle Vibrations Toothbrush to build awareness. 
• Here is a great Guide on Breastfeeding and Down syndrome
• Sensory- When he was first born, Porter needed some assistance to build sensory awareness. While he immediately took the the water at bath time, he needed help building body awareness and sensory exposure.
• Infant massage- We met Porter's PT while she was training in infant massage. The courses she took were based on this book. For Porter, massage was enjoyable and it helped build body awareness. When we started, he would pull away if you stroked his arm. After about a week, we eliminated that. He was able to relax and he was able to have more comfortable bowel movements. 
• Texture play- it's so important for our kiddos to experience textures. We read Fuzzy! Fuzzy! Fuzzy! by Sandra Boynton every day. We also received a cool set of sensory Touch & Feel Flash Cards that we've used from early on (they've become part of our speech arsenal as well).
• Mirror play- this kid never met a mirror that he didn't love. It's so motivational to see yourself. And, it builds body awareness. 
• Down Syndrome Groups- get involved! It's the best thing you can do for you and your family. Our locals Down syndrome Interest Group has been invaluable. We turned our diagnosis story into a story of hope pretty quickly with the help of some amazing families. We've learned so much from their experiences. We're inspired by their children. If you're not ready to get involved in person, find a group online. There are a number of Facebook forums that provide families with great information.