So when I heard the words, Down syndrome, I immediately scanned my memory of all the people I knew at the time that have Down syndrome and the fears crept up based on my limited knowledge and assumptions.
I frantically searched the books and tried to find it.
Find the part of the book that would tell me what Jack's life would look like, who he would grow to be, and if our lives would ever be 'normal'. I thought 'normal' was no longer an option. Our lives would forever revolve around those two words, Down syndrome.
Every time I saw a person with Down syndrome when I was out and about, I asked myself if that is who Jack would grow to be.
And after many, many books, articles, blog posts, conversations, meeting other children with Down syndrome and their families, I finally found it. I found someone to answer my questions about what our lives would look like. (Would we be okay?) And guess who answered them?
You see, Jack is his own person. He is not Down syndrome. He HAS Down syndrome. Approximately 400,000 other individuals in the United States have Down syndrome too. Maybe that is why people think they can generalize and put Jack in a box. They haven't had the opportunity to learn from those that also have an extra copy of the 21st chromosome and understand that when you have met one person with Down syndrome, you have met ONE person with Down syndrome. Each person is unique. Every time I meet a 35 year old woman, do I assume they are just like I am? Or a 5 year old boy and make assumptions that he learns, talks, moves, and behaves like my oldest son? Why do we do this with people with Down syndrome? Does environment not play a part in a child's experiences and development? How they were disciplined or lack there of? Does that then give me the right to say, "Oh 5 year old boys are always..." For some reason when people talk about individuals with Down syndrome (maybe it's just me) but it's almost as if the word 'THOSE' is that much louder. My child is no longer who he is...he is referred to a group of people.
Yes, there is a common fact about people with Trisomy 21 (Ds). They have an extra copy of the 21st chromosome. So when you meet someone with Down syndrome, please see the person and not the diagnosis.
I often think of MANY things I would write in a blog post, but managing (aka. playing and keeping these kids alive) three children under the age of 5 has made my opportunities to sit down very minimal. Most days I am a hot mess so it might be frightening to read a blog post if I wrote something midday. Yikes. Lately, I have been asked how Jack is doing and what he is up to. For the first year of his life I had more opportunities to sit down and write about his daily life. Which led me to this blog post of sharing some of Jack's favorite things and a glimpse into his day! So let me reintroduce you...
"Hi, I'm Jack!"
I love to sing and dance! My favorite song is hard to choose between Taylor Swift's Shake it Off and Bruno Mars' Uptown Funk so my mom's phone is something I work hard to find...and once I get my hands on it...I rock it out!
One of my favorite things to do is read books. My mom often finds me in my room flipping through my books. We're Going On A Bear Hunt, The Little Blue Truck, My Truck is Stuck, and all the books that have buttons with noises are ones you will find me clinging to.
I go to play with my buddies when my mom is at MOPS and I get to be with my peers in MOPPETS and also when I see them in my Sunday school class. My teachers get excited to see me and say I am doing awesome in class! I am learning so much and imitate skills I see others doing! I am making good friendships as my mom and her friends set up fun playdates for us kids and I love it! We have all grown so much together!
I got my tonsils and adenoids out, and a new set of tubes in December. I sleep so much better and have much more energy to play during the day as I was waking up a lot at night before surgery. My mom says that the recovery was rough on her and doesn't wish that on anyone...but says it was worth it (besides my bad breath) as I have done so well since then! Plus, I can hear better which means I am talking and chatting much more!
I go to see the Endocrinologist every 3-4 months as I have a hypothyroid which was discovered when I was 4 months old. I am developing very well and thankful for the research that has been done in the past so there is medicine to help regulate the function of my thyroid.
I go to private speech twice a week, along with occupational therapy and physical therapy once a week. My whole family loves going as we know how amazing my therapists are and to have such a cheerleading squad to watch me meet my milestones makes me work harder! I am working on going up and down the steps without support, riding a tricycle, coloring, stringing beads, and working on jaw support, blowing bubbles, feeding exercises, and sounds that come with my words. I can say about 20 words and use sign language for over 40 things I know. I'm a quiet talker probably because everyone else in my house tries to get their words in. :) My ECSE (Early Childhood Special Education) teacher comes out once a week and she is the best. She creates fun activities for me and I awe her by following her two-step directions and of course, my dance moves. In the fall I'll be going to preschool three times a week and I am very pumped about going to the preschool that my big brother attends along with the local school district ECFE class.
I use the potty at least 3-4 times a day and my mom says that once summer comes I'll get to wear big boy undies that have my favorite Paw Patrol characters on them! Whoop, whoop!
I am absolutely obsessed with hockey and I get very frustrated when my mom takes me home before the end of the hockey game for my bedtime. I love to sit and watch the players skate down the ice and also see the Zamboni clear the ice. Watch out...once those tunes come over the loud speaker, I bust a move! I told you I love music!
I am learning so much from my siblings and as you can see from the pictures, I was so excited for Christmas! I got these cute pjs from my uncle who just happened to get himself a grown up matching pair. I sure do love that guy!
So...you will see here that I have had my fair share of timeouts lately. I am a typical toddler that is working on sharing, playing nicely with my brother, obeying, listening, and following the directions. Often times you will find me in a time out after I have been throwing my plate, cup, or food on the floor...pinch or bite my brother. Ouch! I know that I will grow to love my brother, but lately I have loved getting under his skin by crashing his towers, taking his cars, and yelling loudly. :) Ha!
I love to take care of my little sister. I love to rub her back and then grab her hair or ears. She doesn't seem to like that very much but I know we will grow to have a great friendship and help take care of each other.
As you know I love hockey, I often play floor hockey in the entry way with my dad and brother. I also love playing this pinball/air hockey game. It's the best. I love to score goals, how it makes so much noise when I do...and sometimes on my own goal. Oops.
Another favorite toy of mine is my remote control car. I enjoy watching my car move around and run into the walls and down the steps. I could play with that remote control car for hours.
My dad is one of my favorite people. We are two peas in a pod. He is my biggest fan and my hero. As you can see I want to be just like him. #twinning
My mom says that meal time is her least favorite time of day and my dog's favorite time of day. (See timeout description above) My favorite food is pizza. I also love to eat pasta, yogurt, and granola bars too! Basically anything with carbs and not a vegetable...load me up!
Often times throughout the day we sing songs, learn new signs, read books, and listen to stories on CDs. Oh but don't let me fool you...I watch my fill of my favorite shows which include Paw Patrol, Bubble Guppies, Mickey Mouse, and Sesame Street. My mom walks around the house sometimes with guilt of how many shows we watch but I have noticed that now that my sister naps longer and less needy we are watching less TV. Bummer. Well anyway, here is a little song that I love to do...
Well...thanks for catching up on what I have been up to lately.
I am working on introducing myself to others when I greet people. Saying, "Hi, I'm Jack." So when you see me, introduce yourself and I'll introduce myself.
Finally, can I ask you a favor? Tomorrow, March 2nd, is an important day (besides being my Papa's birthday). It's Spread the Word to End the R-Word. Can you commit to refraining to use the r-word? It's hurtful to me and people who love me. Choose a different word because the word that describes me best is...JACK.