I recently sent out a request for the questions my Facebook friends might have about Ellie, Down syndrome, Ellie's health needs associated with having Down syndrome, early intervention or "anything else."
Here are a few of the questions I received with my attempts to answer:
1. How can the church welcome people with Down syndrome and their families?
I can only speak for my own family here, but I would guess I'm not alone. The things I want for Ellie aren't so different - I want her to serve, to have deep relationships and a deep faith. One way a church can be welcoming is to have high expectations for my child, and expect her to serve, to attend Sunday school, and to participate. At the same time, I want people to ask questions to ask respectfully but to ask when they don't understand something about Ellie, Down syndrome, or her particular needs. As Ellie gets older, I think the ideal community will also make sure other kids understand her differences and understand that she is okay, she just moves at a slower pace than some kids. I want the other kids in our church to be Ellie's friends, to see her as valuable in the eyes of God, and to see her as a person who has something to offer.
For parents, I can say first and foremost, I am grateful no one from our church ever offered to pray away Ellie's Down syndrome. Encouragement that God is present and good is the message I wanted facing a new diagnosis. "Special babies for special parents" isn't biblical. "God does everything for a reason" sounds trite when you have an infant facing major surgery. But... "God is present," "How are you doing?" and "How can we pray for you?" are all great responses. And check in with parents. Offer practical help during surgeries, but also for parents of older kids who might need a break.
Other parents, how would you answer this question?
2. What can you tell me about pre-speech oral development, therapy, etc?
Disclaimer: I am absolutely not an expert in this area, but I'll tell you the things we used and still use with Ellie.
First and foremost, we exposed Ellie as much as possible to a lot of words and conversations. I orally labeled everything I could as we went through our day. We also did some massage around Ellie's mouth, and made sure to use her spoon sideways when she started eating.
We started signing seriously by six months, and also allowed Ellie to watch Baby Signing Time DVDs. While she didn't start signing until much later (maybe 10 months?) she understood quite a few signs very early. At ten months, we started See and Learn "First Word Pictures" to help vocabulary development. I think this program is fantastic, it's research based, and it's specifically for kids with Down syndrome.
Ellie is a good eater, and we let her try a lot of textures and spicy foods and make a mess. The goal is to give her plenty of sensory input in her mouth, and I have no idea if that input has made a difference. Ellie still won't use utensils, but at 13 months gave up the bottle completely for her straw cup.
I'm always fascinated by the gaps and inconsistencies in Ellie's development, and I've noticed that when she's working hard on gross motor, her speech plateaus, and vice versa. Ellie received monthly speech therapy starting at six months, and every other week since she was about a year. She was late to babble, and learned to say "apple" before she learned to say "no." She's demonstrating speech skills a few months behind her cognitive level, which we are monitoring.
We are currently trying to add Spanish, with the idea that I'll speak English and Matt will speak Spanish. I have no idea if we'll stick with it, but we would like Ellie to be at least proficient. I'll let you know how it goes.
3. You've mentioned Ellie's physical therapy and speech therapy. Would she be receiving physical therapy if she didn't have surgeries? And did you do anything extra along with the therapies?
I'll answer the second part of the question first - we do a lot beyond the weekly therapies, but a lot of our ideas come from Ellie's therapists. At this age, the document guiding Ellie's services is family centered, so her therapists not only work with Ellie, they work with me to help me teach her. We also have incorporated See and Learn and Baby Signing Time (see above) and try to give Ellie as many experiences as possible. I think the NICU impacts different people in different ways. We felt like Ellie spent the first three weeks of her life so limited, we don't want to limit her experiences now.
As far as physical therapy, Ellie receives that service due to low muscle tone, which is present in almost every person with Down syndrome. (Low muscle tone, or hypotonia, can also be found in the general population.) Ellie qualified for PT because of her diagnosis, because it's hard to be "behind" at five weeks, which was her age at the evaluation. If she didn't have Down syndrome, but still had the heart surgery, she may have qualified for short term PT following recovery, if she showed significant delays in her gross motor skills.
My expectation is that at some point, we will drop physical therapy once Ellie can run, jump, skip, and ride a trike. At that point, she'd be in school and receiving either Physical Education as a class or Adapted Physical Education. I also need to consult with her therapist.
Any other questions? Feel free to leave them in the comments below, or email me... I'll do my best to answer.