Whether you are given a prenatal diagnosis or discover at birth that your little bundle of love has an extra chromosome, there usually arises the question, “How is this going to change our lives?”
When we discovered at birth that our second son has Down Syndrome, we had a discussion with the wonderful NICU nurses how every new baby brings their unique challenges and has their own struggles as they grow. Babies with Down Syndrome tend to have lower muscle tone, which can make a lot of those first year milestones a bit trickier to master. However, we then learned all the many resources available to help children with Down Syndrome and felt lucky we had a bit of a road map to follow in helping our son develop and stay healthy. Here is a broad overview of what you can expect in the first year of your baby’s life.
Keep in mind, this post is a very broad outline of the first year. Each baby has his or her unique developmental timeline, health concerns or no health concerns at all. Finding doctors who you trust and following their advice through discussions you have, is always recommended to meet the individual needs of your child.
Speech Blubs will help you as a complementary speech activity once your child starts speaking. Every child is unique, but here’s a story about Daniel who made breakthrough:
Due to possible complications that can occur with an extra chromosome, there are a lot of specialists that want to make sure your baby is healthy in that first year of life. Usually, at birth, their heart is checked, with a follow-up with a cardiologist around 4-6 weeks, if needed. This is to make sure there are no holes or abnormalities that occur in about 50% of babies with Down Syndrome.
Due to an increased chance of hearing loss and vision issues, it is recommended that hearing and vision be checked around 6-12 months, followed by checks annually.
Some parents find it helpful to meet with a geneticist to discuss the type of Down Syndrome your child has, as well as what that means for your family in the long run. We, personally, did not find this appointment that beneficial, but we know many who have gleaned good information from their visit.
If you or your child’s pediatrician are concerned about Sleep Apnea (which is common in individuals with Down Syndrome due to low muscle tone, smaller airways, larger tongues, tonsils and adenoids), appointments with a pulmonologist and ENT are arranged to have a sleep study done.
Regular well-child visits, with annual blood-work to check the thyroid and any abnormal cell activity is also recommended.
It seems like a lot, especially when you are in the thick of it, but take heart that the first year of what seems like never-ending appointments with this doctor or that therapist is the busiest. Usually, after a year, most children with Down Syndrome only have a couple of extra appointments, outside of their well-child visit.
Due to the extra squishiness that comes with an extra chromosome, many highly recommend getting Early Intervention, as soon as possible. Early Intervention is a team of therapists (Speech, Occupational, Physical and Developmental), that work with you and your child from 0-3-years on ways to help them reach all the milestones. Usually, they will come to your house, perform an assessment and then set up times to come work with your family, according to the needs of your child. Most are little to no cost.
We found Early Intervention extremely helpful in keeping us on top of what we should be working on with our son and how to help him strengthen his muscles, make those neurological connections through simple games or activities and to better understand how he was developing.
In our experience, it can be discouraging at times to see babies born around the same time as your little reach milestones with ease. Whenever we would get into this funk, we would look at our son and all the progress he had made, celebrate those moments, and move forward. As with any child, comparison is the thief of enjoying the journey.
Check out this Eva’s amazing first year journey
Usually, within months of having a child with Down Syndrome, someone from the local Down Syndrome community will reach out to you. If they don’t, I highly recommend reaching out to them. Being able to connect with others who “Get it,” can be so helpful. As with all communities, there will be some families you click with, and others you don’t. The point is to give you the opportunity to meet families who have loved ones with Down Syndrome in order to know you have support whenever you may need it. Many local Down Syndrome organizations have get-togethers, classes on Down Syndrome development in general, schooling, financial planning for the future of your child with Down Syndrome, and many other helpful resources.
This is to remind us that we truly are lucky to have these children in our lives and to celebrate those everyday moments and milestones with them.
Although the first year can seem overwhelming as you adjust to many facets of having a child with Down Syndrome, take time to enjoy that little baby. I can’t tell you how many times I would get caught up in the worry, then just snuggle our son and feel all the worry melt away. There is a common tag used by many in the Down Syndrome Community, #TheLuckyFew.
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