For this post in #29DaysofAwareness, I thought it would be a good idea to share with all of you just a few resources available here on the internet for new parents.
There is a wealth of information out there for new parents of children with Down Syndrome.
We are lucky.
We can google. We can visit the library. We can buy books on Amazon. We have support groups. We can read blogs. We can use hashtags to search for up to the date information on studies and follow influencers who understand the advancements of medicine and technology and the implications on raising a child with Down Syndrome.
Immediately after I came home when I gave birth to Gelli, (and she was still in the hospital) I stayed up all night, pumping, reading blogs, and sending links of books that I wanted my sister Nicole to purchase for me from Amazon so she could bring them here to Manila. I read some of the reviews, not all. I searched and was drawn to the books with the most reviews, those that were listed at the top of my search, and I searched for stories of other mommas. I asked my sister to buy at least 4 memoirs in my list of 11 books that I felt would help me start my journey of raising Evangelina.
I felt armed with information. To be honest, it was probably way too much information. But at least I have the books that I can use and reference, or even pass on to someone who might need and want them now.
When I first signed on to twitter, my whole world opened up. With one search of a hashtag, I could suddenly read all the up to date information on everything related to Down Syndrome.
Through the years, I have found a few blogs that I really enjoy reading. I follow them and their Facebook pages pretty closely. I look for the new information they share. I like watching their kids grow up. Most of all, I like the way each of these bloggers make me think…
5. Manila Mommy
7. Confessions of The Chromosomally Enhanced
9. Down Syndrome, A little bit extra
These are the sites I would suggest to new parents. They give you a ton of information. You need these sites after you go through the roller coaster of emotions that accompanies your child’s diagnosis.
1. National Down Syndrome Society
2. National Down Syndrome Congress
3. Down Syndrome Diagnosis Network
4. Down Syndrome Prenatal Testing
5. Down Syndrome International
6. International Down Syndrome Coalition
7. Down Syndrome Association of the Philippines
Other resources
1. Unexpected-Downloadable PDF for parents who just received a diagnosis. Collaboration of stories put together by DSDN.
2. For doctors-Another great resource from DSDN. I think EVERY doctor in the position to give a diagnosis to ANY parent should read this.
3. The Down Syndrome Diary-Started by the momma of Ben. She has graciously included The Philippines in her soon to be book. Similar to Unexpected but handwritten by parents and siblings complete with photos. TDSD is Unexpected in an “old school” way. It’s for those of us that still LOVE pen and paper and the cracking open of a leather bound journal.
4. Yoga for the Special Child-One day, I hope to certify in this type of yoga. I think Sonia Sumar is wonderful for putting together this program for her daughter and sharing it with everyone.
5. The Parent’s Guide To Down Syndrome:
This is a new book for parents, by parents of kids with Down Syndrome. I haven’t read the book yet, BUT all the online reviews give it a thumbs up. Will be looking for this book to add to my collection.
These are just a few sites and resources that I have found helpful.
Do you have an sites that you would like to share?
