Friday, July 24, 2015

A New Twist to Hansel and Gretel


 Hansel & Gretel Children's book with Down syndromeReading is a passion of mine. It's one I have somehow passed on to most of my children.  So when I find a book that includes my other passion, Down syndrome, I sit up and take notice.
Recently, I was given a free children's book, Hansel & Gretel, to review.  What makes this book different from all the other Hansel & Gretel Books? Hansel has Down syndrome.  

The first time I read the book, it was by myself because I didn't want to expose my children to something inappropriate by accident. At first, I was a little bit sensitive about how Hansel reacted and his family's opinion of him, but then I realized that that was the point: depicting some of the misnomers, or poorly conceived notions much of society has associated with Down syndrome. 
Then, toward the end, Hansel became a smart, independent thinker with a big heart who was easy to forgive and see others for who they were.  Hmm.  Sounds about right. 

I examined the illustrations, which were actually felt depictions of each scene.  Those were absolutely breathtaking and worth examining again.  The details were...wow.  You've gotta see it to believe it.  Whoever made the felt scenery is amazingly talented. 

Finally, I presented the book to my 6-year-old daughter.  There was too much wording on the pages to maintain Jacob's attention, but Courtney LOVED it.  She sat with me as I read the book, then took it from me and "read" it a second time by herself, checking out all the photos. 

As a parent with a child with Down syndrome, I would recommend this book.  It's not only entertaining, but it's an interesting twist on a classic story that is sure to open many opportunities for dialogue regarding Ds, and to show the world that Trisomy 21 doesn't equate uselessness.  

Camping, Leashes, and Socialization.

Last week our family went on our much-anticipated family reunion trip to Montana.  This was more than 9-months in the works and was intended to celebrate the 60th wedding anniversary of my husband's parents.

Extended family drove as much as 20+ hours to be a part of the week-long event which took place in a massive KOA completed with log cabins, RV spaces, and tent sites.

KC and I had discussed, and fretted over how Jacob would react to being in the woods with so much family, away from his structured activities at home, and anything familiar.  I'd recently discovered that Jake was a runner, who doesn't look back and won't stop until something stops him, or he runs into a literal wall.  The thought of him roaming freely in nature without walls to stop him terrified me.

Despite my apprehension, we made it to Montana and pitched our tents.  On day 1, Jacob ran from me twice.  And I'm talking down the gravel road, up the hill, and nearly to the bathrooms before I caught up to him and drug him home.  It's a good thing there were no cars driving around.  Then, it was a matter of, "Jacob, don't touch."  "Jacob, give me the knife."  "Jacob, don't throw rocks at the cars."  "Jacob, don't turn the spigot on full-blast and splash everyone around you."  "Jacob, sticks aren't for poking people."....  You get the picture.

The fist few days were exhausting.  Then I got sick.  I was cramping something fierce, and they seemed to be getting worse with each passing day.  I was taking every chance I could get to lay down, hoping the pain would pass and leaving the stresses of Jacob to the rest of the family.


After one particular break, I re-emerged to be informed that Jake had gotten through the electric fence designed to keep the wildlife out of the KOA and one of our family members had to go under it to retrieve him.  Wow.  Just, Wow.

So, out came the leash.  I had already spent the last 4 1/2 years promising myself I wouldn't become that parent.  You know, the one who has their kid on a leash in public places like an animal or a pet.  I, surely, could find a way to keep Jacob safely within arms reach, right? Nope.  There comes a time when a person must accept the fact that she is wrong, and realize that sometimes it is better to keep your child from being electrocuted than worrying about whether or not they look like a dog on a leash.

Surprisingly, I discovered that Jake liked the harness too.  He'd bring it to me in the morning and have me put it on him.  Sometimes, I'd follow him around, and others I'd let it dangle like a tail trailing behind him.  That darned harness was a lifesaver.  I'm not going to lie.  I'd do it again.

The other epiphany I had while camping was realizing I haven't been socializing Jake as well as I should be.  How incredibly easy is it to just say, "Nope. Let's just stay home today." Or to have the older kids stay with Jake and Courtney while I go out and run errands.  But keeping Jake locked up in our home - whether intentional or not, isn't doing that little boy and favors.  How will he learn social boundaries, how not to touch everything around him, or even how to socialize properly with strangers if he never has opportunities to have those experiences?

We had chances throughout the week to explain to his cousins that he is different and why he is different.  It was an opportunity to educate, enlighten, and show them that though he is different, Jake is still very much the same and likes to play just like every other little kid.

In spite of being sick and having to eventually go to the emergency room, I feel as if the trip was a good one.  I learned a lot, and Jake (I hope) learned a lot and was able to enjoy the experience with his extended family and loved one.  It certainly was an adventure no matter how you look at it!