Tuesday, March 31, 2020

Designer Genes Adventures

March is International Disability Awareness month and I would be remiss if I didn't bring a bit of awareness to our littlest guy, who I have been referring to as Blueberry on this blog.  To be honest, it's been hard to write this post calling him Blueberry.  I keep putting in his real name.  But hopefully I'm catching them all! 

Most people have 2 copies of each of their 23 chromosomes for a total of 46.  Our little guy has an extra copy of his 21st chromosome.  This is called Trisomy 21 or more commonly, Down syndrome.

My little Blueberry is a little sweetheart. He has the BEST laugh.  It's infectious and genuine. He gives the sweetest hugs, complete with a back pat!  But he also is going through the terrible twos and the associated tantrums.  He can throw himself on the floor with the best of them (that "always happy" stereotype is not true... he has a very rich emotional life in the best and worst ways possible).  He is master of the eye roll (adolescence hitting early, I guess). 

He loves animals, toy cars, camping, Batman and bowling. His favorite color is yellow and his favorite word is no.  His favorite hobbies include putting stickers on my walls, sneaking tastes of his play-dough and coloring on his hands. He goes to a (typical) Mom's Day Out program once a week and loves to play with his friends and do all the crafts and songs.  He especially loves the songs!  Everyday when he comes home he wants me to get his craft out of the bag so he can point to it and loves it when I hang it on our fridge or wall. So saying that he's just like any other young child is very true.

My little man loves food...he gets it from me.  His favorites are: yogurt, graham crackers and any type of noodle.  Doesn't matter the nationality.  It can be USA Mac & Cheese, Italian Ravioli or Japanese Yakisoba.  When he sees a morsel of food that he is delighted to eat, he gives an evil sounding little laugh and shoves it in his face.

He has a curious and adventurous soul.  He is always excited to visit a new spot, to experience a new activity, and to meet new people.  My Blueberry is super friendly.  He gets disappointed when strangers at the store do not wave back at him.  Our family loves to camp, hike, travel and visit new places.  He is always up for anything. Though he is a bit passive in certain ways and really enjoys sitting back and watching all the people going about their activities.  He's a people watcher.  He gets that from me, too. 

Of course, Down syndrome does come with challenges.  It takes my Blueberry longer to learn how to do certain tasks than it might take a "typical" child.  Each person with Down syndrome has different strengths and challenges.  He walks with the aid of a pediatric walker...gross motor is his biggest challenge. But, there is a lot that he can do and he is learning new things every day. 

Blueberry really just wants to participate in whatever everyone else is doing. Sometimes this requires scaffolding.  For example, since he walks with a walker, his hands aren't free to hold things. After dinner his brother is required to take his plate to the sink. So he wants to do this too. I hold him and he holds his plate. A child has never been so proud on a daily basis to help clean up the table.  He just wants to be like everyone else because he is like everyone else. 

I believe that inclusion at a young age is why so many people with differences are excelling in society today and why it's so important to continue to figure out how we make sure every has the opportunity to participate in schools, clubs, activities and work.   This is not only good for the individual but is good for everyone.  When Blueberry is included he teaches his typical peers about differences in abilities and how to be more accepting of all types of differences.  Children learn from each other and helping their peers learn a skill, re-enforces and solidifies the information for the typical child.

Whenever little Blueberry accomplishes something that is hard for him to do, a huge smile breaks across his face and his eyes beam with pride.  He claps his hands and looks around to make sure we are clapping too...and will stare/glare at us until we do.  He is inviting us to join him in his joy in that moment.  And in this way, he is teaching me to appreciate and understand the happiness and pride that comes with accomplishments big and small.

I think that Blueberry is a homesteader at heart.  He always wants to try to do everything by/for himself, he loves to take care of animals and he wants to be outside all the time no matter what the weather is!

My Blueberry is a silly, giggly, determined, inquisitive, spunky, driven, able, loving smile bucket and unique individual. He just wants what everyone wants: acceptance, love, the opportunity to reach his potential, and the ability to impact his community and his world in a positive and powerful way.

He is living a great life...a life worth living.  My Blueberry and all other people with different abilities or other differences are all created in the image of God the Father and are perfect in the way that He has designed.  At the end of the day, the most important thing is for my children to know the saving grace of Jesus Christ and make it to Heaven.  I know that I will help my boys and that they will help me.  And that is really the only thing that matters in the eternal sense.

No comments:

Post a Comment