Welcome! I'm glad you've found us. I'm Andi, mother to Jett, seven years old, who has Down syndrome — also called T21. While we did have the head's up that Jett may have T21 early in my pregnancy, we weren't 100% sure until he was two weeks old. I declined an amnio, choosing to be "blissfully ignorant" since I didn't want to experience bad news while pregnant. Now I know I didn't have to be afraid of information and could have done some important things to prepare. But I didn't have a guide then, so I just put my blinders on for a more peaceful pregnancy. Fortunately, you do have a guide...
Plus, every challenge is a beautiful opportunity for growth. I have learned so much through my children and can’t imagine who I’d be if they were born differently.
I created this blog to support you so you can better advocate for your child to get the proper care needed. Almost everything you have heard and read previously is probably about children who grow up untreated for T21. But with proper intervention — physical, nutritional, neurodevelopmental, medicinal, and environmental — your child's future will be full of opportunities instead of obstacles.
In fact, at four years old, Jett went through five hours of testing before he started 4K, and he did not qualify as having an intellectual disability, nor did he need speech therapy. He read at a 5th-grade level with comprehension at 2nd-grade. No, these results are not typical — not even for a neurotypical child! Here's a post with videos of him to see for yourself.
Even though all of our kids share the T21 diagnosis, each of our kids is created differently. About half have had heart surgery, like Jett; a third have a co-diagnosis of ASD, like Jett; almost all have hypothyroidism, like Jett, and a few have extra challenges that Jett has not faced. Regardless of where your child is at or what s/he is working on, there are definite things you can do to support your child's health and well-being.
You likely have been told to lower your expectations for your precious baby in subtle and not-so-subtle ways. But, in actuality, the biggest handicap that your baby has may be your lowered expectations! I do not believe that Down syndrome means cognitive impairment; instead, our kids have difficulty expressing their intelligence because of movement and speech issues. And I will help you find creative ways to remove those movement and speech blocks by strengthening the brain-body connection.
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| Jett's baby brother is recovering from CP. |
In my blog, I share a proactive plan of action to deal with your child's root causes to prevent many of the symptoms of T21 from surfacing and how to help with the symptoms that appear until we find a way to prevent them. There's new research every day! This is an exciting journey, and I'm happy to guide you and to learn from you as well.
I designed these blog posts so that you can find your own way and create your own path but if you would like me to help you create an action plan in a more personalized way, you can contact me for my services, which can include an hour Skype, a phone call and or follow up emails, depending on what you would prefer.
Through this site, experienced parents, open-minded physicians, and forward-thinking researchers will share vital information. And I will explain what I have done and am doing with Jett to help him reach his potential. This information can help you to give your child the opportunity to flourish.
If your loved one is not young, I welcome your wisdom and have plenty of tips for you as well! Please look at the various posts and guides by topic, stage, through the search box, or with a question in the forum.
It's natural to feel overwhelmed... There's a lot of information here. You can't learn and do all of this in one day (or week or month...)! I'm hoping to save you the time and anguish of sorting through all the information that's out there on T21. I want to allow you to spend quality time enjoying and nurturing your child rather than spending the time that I already have going through piles of research. I am open-minded and update blog posts according to my latest findings, but I do have specific beliefs about what works best and what doesn't, and I only share what I either endorse or am still open to and research. (I do have a post on Prozac that I keep updated because so many parents want information on it, even though I only support its use when given in a specific way and for a short time.) Feel free to share your experiences and solutions you may have privately or as a comment for others to see in the forum.
Keep up-to-date by subscribing in a reader to this blog or sign up to get each new post automatically sent to you by entering your email address in the "Follow by Email" box on the right of your screen. You can friend me on Facebook as well where I share DS related news and let you know when I've updated posts.
Let the empowering begin!
A note to new parents: Please do not feel that you have to immediately give your sweet little newborn with their delicate tummy lots of vitamins and supplements! My Jett couldn't tolerate anything other than breast milk for the first four months, and he's turning out very well. Some babies can take a vitamin from day one, while others can't tolerate anything until six months old. All is not lost! It's essential that you attend to their basic baby needs, plus extra stimulation. Your love and attention are what he needs most during his precious early months! Please see the Prenatal/Newborn Page or Baby Page for details on what you can do now.
Update:
Jett is thirteen years old and loves to write poetry. He wrote over 500 poems in 2022, although most were haikus. He is still a voracious reader and wants to be an etymologist (one who studies word origins) and a bard when he grows up. He loves dribbling a soccer ball and dancing. Here he is at twelve, on the soccer field.
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