If you didn’t read my blog post from last week, make sure to check out Part 1 of the story. With World Down Syndrome Day coming up, I wanted to answer a few questions (and maybe bust a few myths) about what is and what isn’t hard about Down Syndrome. From a Mom’s point of view. (Sidenote: These are all from MY point of view. I realize that this is not every mom’s/families’ experience. And every person with Down Syndrome is not the same. I am also no expert. I am simply another Mom of 4 that has experiences of her own to share.)
Lifeline (our adoption agency) prepares you big time for the reality that bonding could be a big struggle. Almost to the point that it feels overwhelming. For a lot of kids who have been displaced or separated from their birth families, bonding is a very hard thing. Lifeline tries to prepare you for the worst case scenario, as much as possible in your training leading up to adoption completion. Thankfully, for me, they also had a Mom that shared about how easy and peaceful their bonding was. It was good for me to hear both perspectives. For us, bonding was very easy and peaceful and everything just felt so natural. Like we had always belonged to each other. I think in Ethan’s case, having Down Syndrome helped make attachment easier, from both sides. Ethan’s capacity to love is soooooooo big and free and unguarded. It’s one of his greatest qualities.
There were definitely things we could do on our part to help with bonding and Lifeline gave you lots of tips and tricks. Fulfilling needs, play, and eye to eye and skin to skin contact. However, I believe that no amount of tools could have affected Ethan’s ability to bond with us. Part of that, I think, was just God’s provision and sovereignty over it all. The other part is those special things that I believe God set in him that make him who he is. And part of who He is includes this extra special gene that gives him a larger capability to love people unconditionally, regardless of the walls he should have built in the first 3 years of his life. Regardless of the hurt he may have experienced he chooses love over all. He chooses love first. There is nothing hard about that.
The language barrier has been a little hard, but not near as hard as we expected. When we first got Ethan, he used more sign language than anything else to communicate to us. His family at Shepherd’s Field equipped him with all of the signs he needed to be able to communicate his needs as best as he could to us. They encouraged us to learn the basic “Baby” ASL Signs. With those, and some good ole fashioned creative communication, Ethan had no issues letting us know what he needed. Sure, there were things he said that we did not understand, and that is still the case today as he learns new words. However, Ethan has a great ability to improvise and SHOW us what he is saying as long as we take the time to listen. Language and Speech is still something that we work on as a family and is engrained in Ethan’s education plan at school everyday. Currently, Ethan leaves off many of the beginning consonant sounds of words. He does not have any physical abnormalities that cause this. He is learning to properly position his mouth and tongue to work together to make these sounds. Honestly, we understand most everything he says. It’s kind of like when your toddler starts speaking for the first time and you seem to have your own little language that the rest of the world has a hard time understanding. When Ethan learns a whole new word, sometimes it takes us a few good times to catch the pattern and interpret what he is saying. He continues to amaze me at how hard he works to improve his speech and make sure we, and others around him, understand him. Since we all understand the situation and slow down and pay attention, and also have a team of excellent educators and speech therapists, language issues really haven’t been so hard.
I didn’t necessarily make the assumption that the education side of Down Syndrome would be difficult. Just different. I knew it would be different from what I had walked with our 3 biological children. I definitely would not say it has been hard. We call Madison, Al home and all of our children have been enrolled in The Madison City School System their entire school-aged lives. We currently have a Senior and a Freshman in High School, a 5th grader, and Ethan in 1st grade. Two of my older children received speech services for a total of 7 years between the two of them. Ethan has received state/school provided services in this system for 4 years now.
All of my Special Education services experience is limited to pre-school through the 5th grade. So, I can not speak to the higher levels in our area. But, this is where I brag about our school system….We have had WONDERFUL experiences in Special Education in our system. All of the professionals from the City School Board to the Administration, Teachers, Aids, Bus Drivers, and Therapists have been AMAZING. We have had some bumps in the road around normal things in school but everything has always been handled in Ethan’s best interest and with love and respect. We did initial evaluations shortly after Ethan came home and he began receiving specialized services for Physical Therapy, Occupational Therapy, and Speech Therapy at no cost to us in the schools he would be attending in the future. We continue to have annual Individualized Education Plan (IEP) meetings to assess his progress and the plan moving forward. Additional meetings are available to me as needed. E currently spends the majority of his day in a “Self Contained Classroom” where he receives more focused attention with a smaller Teacher/Student ratio around core learning. He has an assigned “Typical” class that he spends inclusion time with for things like art, lunch, PE, and recess. As far as I have seen, Ethan is so loved and cared for and valued in his classroom and peer setting and in the school at large. We have had no issues with him being mistreated or picked on. The administration in our system has a huge heart for inclusion and encourages all students to respect and care for each other across the board. Our schools and educators have been a blessing to us and have made this new different a breeze for us.
{This is E with one of his teachers from last year. She is the best and we have all become good friends even outside of school.}
There are so many medical conditions that can come along with Down Syndrome. It is something we tried to prepare ourselves for. Thankfully, so far, Ethan has only been diagnosed with Hypothyroidism. This is very easily manageable with medication. He also wears glasses to improve vision.
LANGUAGE: Language isn’t hard for us as a family, but I do feel like it is a consistent small battle that he works so hard to win every day. Ethan wants so badly for the other people/students around him to understand what he is saying. He has to conquer this barrier everyday and will have to continue to do so as he moves into mainstream classroom settings. This is where his stubborn trait does him so much justice. This kid just doesn’t give up and he tries and tries again and again with little to no discouragement. Again, he continues to amaze me by how hard he works.
Teaching healthy boundaries is something we have to be super consistent about and build on everyday. For instance, in the beginning, Ethan did not know the difference between the sidewalk and the road. It took a lot of teaching consistent healthy boundaries around crossing the street safely, and all the things that go along with that. He can have this down to an art for a whole year and then all of a sudden, a neighbor friend calls him from across the street and he is so excited that he forgets the rules. When that happens, we have to be super strict and consistent about hammering in on the boundaries for the several weeks to re-ingrain them in him. Ethan also does not understand giving people ‘Space’. Quite frankly, Ethan doesn’t want space and wants to be as close as possible to everyone. And he still loves skin on skin. It simply takes consistency to teach him that others do want space and how to respect that.
This is a hard one for me. Since Ethan needs consistency, it is really helpful for him to have a very structured day. I am a free spirit. I am no good at structure. I fly by the seat of my pants all the time. And I like change. I have to constantly remind myself that his behavior is better when his life is more ordered. I have to balance it with the fact that I think it is important for children to have some UNstructure in their lives as well. Unstructured free time feeds creativity and imagination. I am a planner, but to me a plan is just a jumping off point. This isn’t hard for everybody and if you love structure it probably won’t be too hard for you. When we were in the process of adopting, we had to fill out this very daunting form that basically narrowed it down to what we were willing to sign up for, when it came to special needs. It was by far one of the hardest parts of the process. This document had hundreds of ‘disabilities’ or ‘medical abnormalities’ with a box for yes and a box for no. Will you consider accepting a child with this (?), ‘yes’ or ‘no’. There has never been a form that felt so wrong or hard or yucky to me. Every ‘no’ we checked felt as if you were saying that these children weren’t good enough for us. That wasn’t the case, but it sure felt like it. There were boxes for what seemed like the simplest of things like anemia, small and fixable heart conditions, missing appendages. Things we have incredible resources for in our country. Then there were boxes that seemed so overwhelming to us. We had to weigh what we felt equipped to handle in our family. Down Syndrome was one of those boxes. Saying ‘Yes’ and checking that box was one of the scariest things I have ever done. It was also one of the greatest.
If you are considering adopting or fostering a child with DS, are facing Down Syndrome with a birth child, or know someone whose life touches someone with Down Syndrome somehow and just want to know more… I hope this has been helpful and encouraging.
Yes, some moments are hard and some days are hard. But that is the case with everything. We take the bad with the good. That’s true to all of life. If we chose to miss the hard, we would miss the good too.
Many Blessings,

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