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 he had it until he was two weeks old because I didn't get any other testing until then. I just chose to be "blissfully ignorant" for a while longer since I didn't want to experience any bad news. Now, of course, I know that I didn't have to be afraid to find things out and I actually could have done some great things to be prepared. But, I didn't have a guide at that time, so I just put my blinders on to have a more peaceful pregnancy. Fortunately, you do have a guide...
You've probably heard about the "extremes" of Down syndrome including such negatives as: slow development, language impairment, mental retardation and a whole host of possible health problems and perhaps even the rather silly notion that all of our kids are happy-go-lucky, excessively loving and super friendly. Some people strongly feel that the DS diagnosis is a blessing. Each of my children is a blessing and I consider none of their diagnoses as a blessing.
I know that you have also 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!
This blog has been created to support you so you can better advocate for your child to get the proper care needed. Most 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 neuro-typical child! Here's a post with videos of him so you can see for yourself.
Even though all of our kids share the T21 diagnosis, each of our kids are created differently. About half have had heart surgery, like Jett; a third have a co-diagnosis of ASD; 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.
In my blog, I share with you 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 do appear until we find a way to prevent them. There's new research everyday! This is an exciting journey and I'm happy to guide you and to learn from you as well.
These blog posts were created 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, 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 take a 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 researching. (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.) Feel free to share your experiences and solutions you may have privately or as a comment for others to see in the forum.
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Let the empowering begin!
A note to new parents: Please do not feel that you have to give your sweet little newborn with his/her delicate tummy lots of vitamins and supplements right away! 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 and some babies can't tolerate anything until 6 months old. All is not lost! It's most important that you attend to his/her basic baby needs plus extra stimulation. Your love and attention is 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.
Our Purpose & Values
Research and personal experience to help you best care for your loved one who has a little "extra"!.
Research and personal experience to help you best care for your loved one who has a little "extra"!