Special & Determined | A Special Needs Mom Blog

Loving life and all it's special challenges, giving a window into the beautiful world of Down syndrome

Special & Determined | A Special Needs Mom Blog - Loving life and all it's special challenges, giving a window into the beautiful world of Down syndrome

Holiday Gift Idea For New Parents Of A Child Diagnosed With Down Syndrome

Jacobs book cover 199x300 Holiday Gift Idea For New Parents Of A Child Diagnosed With Down Syndrome

Jacob’s Journal – My Journey Home

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.

journal collage1 1024x512 Holiday Gift Idea For New Parents Of A Child Diagnosed With Down Syndrome

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.

So What Exactly is Down Syndrome or Trisomy 21?

What Is Down Syndrome?

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:

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Special & Determined Down Syndrome Awareness Week 1 Winner

We have announced our Week 1 Winner. Congratulations Jillian! You will now be entered into our Grand Prize contest that will be announced at the end of the month for the $50 prize pack. That contest will be chosen by the public.

Please make sure to enter our contest to help spread awareness about all the special things our determined children with Down Syndrome can do.

Visit: http://www.special-and-determined.com/down-syndrome/down-syndrome-awareness-month-down-syndrome/down-syndrome-awareness-month-campaign-specialanddetermined/

We will be drawing a winner ever week.

Down Syndrome Awareness Month Campaign #specialanddetermined

specialanddetermined DS horizontalFB Down Syndrome Awareness Month Campaign #specialanddetermined

Here is our Down Syndrome Awareness campaign – “Is Your Child Special & Determined?”

All children are unique in their own individual way. As a mother of child with Down Syndrome I feel so blessed.

When my son was born with Down Syndrome (Trisomy 21) and a congenital heart defect, my husband and I agreed very quickly that we weren’t going to let our son’s disability get in the way of him experiencing life. We wanted him to enjoy the world just like any other child.  So we encouraged him to try new things. We wanted to allow him the opportunity to grow and learn.  We wanted him to find his potential.

So with this campaign “Is Your Child Special & Determined” we know the answer is “yes”, but we want you to share your child with us.  This is your opportunity to bring awareness to individuals with Down Syndrome and show how beautiful, how accomplished and determined they are.

Take a moment to fill out the form below, and please make sure to add only one picture of your child, and please only enter once.  Make sure to read the rules of the campaign.

At the end of the month a winner will be announced.

Enter Contest Below

  • CONTEST OFFICIALLY STARTS OCTOBER 6, 2014 AND ENDS OCTOBER 31, 2014. You have to be 18 years or older to participate. * Please submit one picture of an individual with a Down Syndrome and tell us why this individual is Special & Determined. * Each week my son will pick the "Honorable Mention of the Week", and their picture will be uploaded to my Facebook page. * At the end of the month (October 31st) I will ask the public to vote on the winner of this campaign. * The winner will then receive a gift basket worth $50.00
 

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We look forward to seeing all your special and determined children.

Summer Camp For A Child With Special Needs: Learning New Things, Meeting New Friends & Trying Something You Never Tried!

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.

 

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