Every October families, individuals, organizations, schools and more celebrate Down Syndrome Awareness Month. A chance for us to spread awareness, advocacy and inclusion for those individuals diagnosed with Down syndrome.
Each day in October, I plan to share with you something specifically related to Down syndrome. I ask that you share with others, and please fill up your social media outlets with positive information about Down syndrome.
Source: Mayo Clinic
As a first-time “older” mom and someone who went through her trials and tribulations when it came to infertility, I was so happy. I knew that I wanted to keep a “birth journal“, I had read that somewhere. I wanted to document “our” journey, so that one day I could share it with my son when he got older (this was way before social media!).
I knew that I was a “high risk pregnancy” and that there was more risk for me and for my baby than normal. That’s why when I learned of my son’s diagnosis when I was four months pregnant, I knew that this journal will also help me document all the information, medications and tests that he was going to have to endure. I knew there was going to be a lot of information that I was going to have to digest and it was going to be easier for me to keep it all straight by writing it down. There was also something cathartic about keeping a journal, I was also able to share thoughts and feelings that I was having during all of it.
Jacob had his first surgery (Blalock-Taussig shunt) at 16 days old. I can remember Jacob and mine’s first ride in an ambulance. The long wait in the waiting room when Jacob had his first surgery. There was so much happening, so many plans that had to be made, so many feelings that we were feeling, I remember looking at my husband and saying “I think I need to write a book”. Of course he laughed, but I was completely serious. If there was anyway I could help another family out that might go through what we went through to help them better prepare, I wanted to do that.
So I sat down in the hospital chair as my son was hooked up to all these machines ringing loudly in the background and started to write. Soon “Jacob’s Journal – My Journey Home” was created.
This story is unique in the way I wrote it, since I chose to write it as if my son was telling the story. This story will take you on an incredible faith-filled journey as a family enters the world of having a child with special needs.
This book is a recount of what Jacob went through the first 6 months of his young life, and the unique thing is I wrote it as if Jacob was telling the story, because in fact it is his story. I also created a glossary of terms so that families can understand somewhat some of the medical terms that were being thrown at us.
I hope that this book brings some peace to families as they receive that frightening news of their child having Down Syndrome, and to rejoice in their blessing of having a child with special needs.
Here is a testimonial from a customer who purchased the book:
I finished the book and OMG I cried, I laughed, I loved it. I felt like I was right there going through all of it with you and the family. Jacob is such a little fighter. ~ Doreen Devereaux Wixom
I loved writing this book and I hope that you or someone you love will enjoy reading it.
I first started the presentation out with Jacob introducing himself and telling them that he has Down syndrome. [Read more…]
First off, lets start by getting to know what it is and how it’s caused. Down Syndrome occurs when there is abnormal cell division that results in extra genetic chromosomal material. This is responsible for the feature and developmental characteristics. Research has thus far determined that there are no known environmental factors.
Did You Know There Are Three Types of Down Syndrome?
There are also three types of Down Syndrome:
Celebrating life and the beauty of Down Syndrome with all it’s special challenges and many opportunities. Jacob’s Journey a boy’s journey with Down Syndrome. Advocating for inclusion, awareness, acceptance and understanding.
Follow us on Youtube at: https://www.youtube.com/user/specialjacob0322
When April starts approaching, Moms around the country start getting nervous about how we are going to keep our kids entertained over the summer. Different day trips, vacations and camps start entering our minds.
If you are fortunate to live in a town where they do Kid’s Expos you can gather up all the information of what is available for your child over the summer. Everything from performing arts, music, educational, sports, to environmental, historical to faith-based camps are available (and that’s not even touching the surface of all that might be available).
However, if you are a mother of a child with special needs choices can be a lot more limited. But don’t be afraid to ask. A lot of camps may encourage inclusion for children with special needs to take part in their camp activities with their typical peers.
We were very fortunate to have found Springhill Camps. A faith-based camp based in Michigan, that came to a local church for the week. This was our first time attending, as the church is trying to grow their special needs ministry.
Wow what an amazing organization. They were top-notch from the very beginning. After I signed my son up and expressed the need for a one-on-one counselor, I received two phone calls. First to let me know they will be sending me another form to get to know more about my son’s needs, so they can pair him up with the perfect one-on-one counselor, and the second call was from the counselor herself, Sarah. She wanted to introduce herself, expressed her excitement about helping him and gave me some information about herself.
I was very excited about the first day. As always, I felt a few butterflies in my belly not knowing how things will go, but excited for him to experience new things.
The welcome to the campers was great. Very upbeat, smiles, music and high-fives – couldn’t ask for a better greeting. Sarah immediately came running up, excited to meet her new friend. After introductions, we went to his room with his fellow campers. A few we knew from school and our neighbor. Phone numbers were exchanged and off he went to experience summer camp the way camp should be experienced for a young boy.
Sharing this infographic from http://www.special-education-degree.net/
Many exceptional learners truly are exceptional, you just have to figure out how to reach them.
Like our favorite mouse would say “Hot Diggity Dog!” I’m Going To the Disney Social Media Moms On The Road Celebration in Chicago!
I recently found out that I have been invited to attend the Disney Social Media Moms On The Road Celebration in Chicago June 17, 2014. I am bouncing off the walls. I cannot tell you how excited I am to be able to attend this event for the first time. [Read more…]