It is generally accepted that kids with DS will experience a cognitive disability. Wikipedia gives the stat of 99.98% of people with DS having a cognitive disability. So it is most likely that Phoenix will fall into this category. It is possible that she will be 'brighter' than this, it is just not likely. It's ok. Really. It is what it is. It the past, this used to be referred to as mental retardation. "Mentally retarded" is generally no longer used. Instead we say "intellectual disability or cognitive disability or delay". Why does this terminology matter? Because unfortunately the word 'retard' or 'retarded' has been commonly adopted as a slang word equated with something negative, bad or unacceptable. My daughter isn't something negative. She isn't unacceptable and she isn't stupid. She has a cognitive delay.
Lauren Potter from Glee puts it rather nicely here:
Can you see why the disability community is working so hard to get people to stop using the "R" word?
Please, spread the word to end the word. For Phoenix. For her friends. For our families.
Back to my story. What does a cognitive delay look like?
Well, children with DS learn more slowly than their typically developing peers. It takes longer for information to be processed and to be remembered. It takes more repetition to learn concepts and remember information. Children with DS can learn, just at a slower pace.
What will this mean for Phoenix? Long term, I have no idea.
Short term, it means that she qualifies for a great EI preschool that my school district offers. She'll go to school in a partially integrated classroom with a spec ed teacher, some EA's and an OT and SLP. I'm super excited for her to go.
I'm secretly hoping that with all of the early learning that I am providing that she might be one of the most impressive children with DS they have ever had the pleasure of working with.
Well, I guess it's not a secret now.
As she grows up she will be fully integrated with her peers for elementary school. This is great for a few reasons. First, for many kids with DS social skills are a strength. Second, it helps reinforce for other children that having friends and classmates with disabilities or differences is normal. It is normal. It takes all kinds of people to make a great society and the more this realisation becomes part of the common psyche, the less likely it is that people with disabilities will be set aside or seen as unacceptable. As flawed.
In terms of learning, children with DS tend to be visual learners and learn better by seeing than listening. Single word reading is a strength for many kids with DS, so that learning to read is totally expected. And there are many parents in the DS world who are doing early reading programs with their kids - quite successfully, I might add.
Children with DS also take to sign language really well. Sign language is a wonderful bridge for children who will be language delayed. It allows them to communicate their feelings, needs and wants before their little mouths and tongues are able to articulate. I consider it a second language. I am teaching Phoenix a second language not only to help her communicate better with us, but to give her little brain a second way of thinking about the world. To provide new neural pathways and more brain plasticity. To allow her to communicate with other children and adults who may be hearing impaired. And because she LOVES it.
For those not in the DS community, there is a signing program called Signing Times. There are books, flashcards and videos that all teach sign to hearing children. We have been watching the videos since Phoe was just over a year and she is obsessed with them. She requests to watch them all the time and is so animated and engaged while it is on. She signs right along with them.
Learning to sing has also helped her speech. I have noticed that many of the words she says are words we frequently sign, and she always does them together. She's learning 2 languages at once.
The problem with thinking about Phoenix as being 'mentally retarded' is that it doesn't allow space for her to be smart, or bright or capable of learning. All of which she clearly is.