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Treating Down Syndrome
Let me be clear – Down syndrome (T21) is not something that can be “cured”. When people ask things like, “How severe is her Down syndrome?” I’m tempted to respond, “Well, you could say that it’s as severe as possible. It’s also as mild as possible.” A person either has it or they don’t. (This leaves out of the equation the types of Ds, but for our purposes we’ll assume it’s Standard Trisomy 21, which is what most people are familiar with, and also makes up over 90% of the Ds population.) It’s true that there is a broad range of manifestations and a range of symptoms (for lack of…
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Flash Cards and Simple Books
One of the things we do with Lily is to select simple books that have the same words repeated throughout the book. As I’ve posted about before, I first make flashcards from all the words in the book. I put the word on both sides of the card, using a different font on each side. Not only does this make it easier to flash the cards, but it also helps her recognize the same word can look slightly different. If we already have a flash card for any particular word I don’t make a new one, but depending on how long ago we reviewed it, I may pull it out…
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Fast Flashing to Teach Reading – Flash Cards
Even before we started Lily on a neurodevelopmental (ND) program through ICAN, I was using flash cards with her. This is one area that I think is confusing for parents new to an ND program. There are a few different types of flash card activities, such as receptive picture cards, language cards, and word cards, with various interpretations and even different names for these card activities. Picture cards – you are just rapidly showing pictures and giving the child a word to associate with each picture. The goal is to build vocabulary, not teach them to read. You are not showing words, just pictures. This is a fast flashing activity, done in short, frequent sessions each day. I…
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Powders, Pills, and Liquids, Oh My! Our Supplement Routine
I have three kids. All three take supplements. My 4 year old and 3 year old both have theirs mixed in with a morning smoothie. In an effort to make our mornings easier I pre-prep morning smoothie packets, as I’ve posted about before. I do the same thing with supplements. For my 11 year old, I pre-sort his into a 7-day pill sorter. He can then just open the correct day and take his own vitamins. For my youngest, I use these 2 ounce food storage containers. For Lily, who takes the most supplements as part of her TNI (targeted nutritional intervention) protocol, I use two of these 8 packs of 1 ounce dressing containers. This…
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Prenatal Diagnosis of Down Syndrome
Dear pregnant mom who received a prenatal diagnosis of Down syndrome, I’m talking to you… The mom who was devastated by the news that your baby has Down syndrome. I’m not talking to the mom who was barely fazed, though you are welcome to read on (and maybe you can give me some tips on how you keep so calm and cool.) I’m talking to the mom who was literally brought to her knees, thinking her life was over, that she might never bond with her child, that she would never feel happy again. The mom who cried for months, gut-wrenching sobs that wracked her body, sadness only hidden when her…
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Lily’s Reading Program
Recently I shared a video of Lily reading. I received lots of questions, particularly about how we reached this point, so I’m posting this to answer those questions. This video was taken shortly after she her 4th birthday. It is only within the past few weeks that we have moved from flash cards to reading actual books. This activity was added at our last ND evaluation when Lily’s program was updated. It’s been really exciting for us, and especially for her to realize that those flash cards can be put to use to read actual books! I’m not sure why I didn’t do this sooner. **Due to recent experience with stolen images,…
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Down Syndrome Awareness Month – Inclusion
What’s the point of Down Syndrome Awareness Month? According to a quick search, it’s about showcasing the abilities and accomplishments of people with Down syndrome. It’s about spreading a message of advocacy and inclusion. It’s about celebrating people who have Down syndrome. Not everyone is ready to “celebrate Down syndrome” or get involved in raising awareness. In truth, my family has never participated in a Buddy Walk. We’ve never attended any local Down syndrome events or joined any clubs. Initially it was because I was very much in the “not ready to celebrate” camp. As time progressed, it was because Down syndrome is such a minor part of our life.…
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Auditory Processing… On-the-Go
I recently read an awesome blog post on the very important topic auditory processing or sequential processing. This is something we have been working on since we began our neurodevelopmental approach to therapy. The organization that we work with is ICAN, and we love our therapist! Auditory processing is quite possibly the single most important skill that we work on. As such, it is on our program multiple times per day. The goal is high frequency, short duration. I keep a bag of Little People toy animals from her Farm and Zoo like these and these on Lily’s dresser so that we think about it (and hopefully do it) when…
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Speech and Language Cards and Tips
Lately I’ve gotten a lot of comments and questions about Lily’s speech and communication, and what we have done over the years to help her. While she isn’t keeping up with her typical peers in speech and language, we have seen great progress lately. I think it’s a combination of everything we’ve done over the years, beginning from when she was just an infant. I believe it’s all connected, and you can’t necessarily talk about speech without talking about diet and supplements or the gross motor piece, like crawling and running. However, to go into absolutely everything would make this post way too long. I’ll try to share in more…
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Lily’s Therapy Program and a Checklist
The majority of Lily’s therapy is an at-home Neurodevelopmental (ND) program through ICAN. Other programs are NACD and IAHP. Some suggested reading to learn more are How to Teach Your Baby To Read, Fit Baby, Smart Baby, or any of the Doman books. We chose ICAN because there was a therapist who travels to our area. I also appreciate that it’s a Christian organization. A couple times a year we meet with our therapist so that she can evaluate Lily’s progress and modify our program. Throughout the months between evaluations we are in communication via email or telephone, where we discuss progress and any changes that might need to be…
