Best of All – Jasiah!

Jasiah is three years old and has been attending programs at GiGi’s since he was an infant. Jasiah was born during the height of Covid, thus it was a time of isolation from family, friends, and community.  Fortunately, we learned about GiGi’s Playhouse from Jasiah’s developmental pediatrician. I remember reaching out to Lizz (I believe I left a message) telling her that I recently had a baby with Trisomy 21 and was referred to the Playhouse. When Lizz called me back, I immediately felt her warm and inviting energy, passion, and excitement about supporting individuals with Trisomy 21 and their families.  I told her all about Jasiah and she excitedly shared with me age-appropriate programming that Jasiah could participate in.  The first program Jasiah attended was LMNOP with Ms. Amanda via Zoom. She and all of the volunteers were so very welcoming and supportive.  I can remember feeling nervous, yet very relieved that we found a community for Jasiah outside of our immediate family.

Jasiah and I learned a lot of sign language from LMNOP.  I really feel that the program jumped start our journey of incorporating signing into Jasiah’s daily routine. Jasiah has also participated in GiGiFIT with Ms. Erin and her volunteers.  In addition, Jasiah was fortunate to participate in a speech session with Ms. Libby.  More recently, Jasiah has been regularly attending the Leaps & Bounds program. We have truly seen lots of leaps in regard to Jasiah’s development since participating.  His attention span has increased for joint attention activities.  His observation of the other kids helps him be confident in his motor and language abilities.  

Jasiah currently attends preschool through the Bedford City School District. He receives all disciplines of therapy via IEP.  He loves going to school!  Jasiah is a very fun-loving, sweet, smart, adventurous, and helpful little boy.  He has a determined personality and is always willing to try something.  On the contrary, he will sometimes shy away from more difficult tasks and/or activities, but with prompting and encouragement, he will try to perform the task. He is a lover of all people; when he first meets someone, he will carefully examine the person, checking out all details of the person. He loves the outdoors, going to the park, watching Ms. Rachel, and yogurt for snack.  

I would say getting the opportunity to interact with the staff, volunteers, and other kids and families have been my most memorable experience.  Also, during snack time at Leaps & Bounds, Jasiah was provided with a cup of water.  I didn’t think that he would drink from it since he prefers cups with a sippy spout, however, he surprised me and picked up the cup and began drinking from it independently.  It was a proud mom moment for sure! My husband and I have many big proud and happy moments in Jasiah’s journey like walking at 16 months, but we mostly focus on celebrating the small things and steady progress that Jasiah exhibits every day.  We are a family big on celebrating, so there are lots of high fives and dance parties at home to show Jasiah positive reinforcement.  

Jasiah is a God-sent blessing and we believe he is destined to do great things and change the way people view individuals who are different.  He is by far the biggest blessing that we have received and the love of our lives!  What we have learned from Jasiah and his journey thus far and what we want others to know is that he is no different than anyone else. Yes, it may take him a bit longer to master a task, but with practice, encouragement, and determination he will accomplish and master it. Jasiah has taught us to never rush things in life and to cherish each moment with loving patience and understanding.  He has definitely helped us slow down and has awakened a mindful sensory-based approach to life that I never knew or connected with.  We are in awe of him for all that he has overcome and excited for what’s to come.  

One fear that I had early on was whether Jasiah would be accepted by his peers because of his differences.  Bullying is a very real and common practice, and I really struggled with this thought for a long time.  I also worried and was fixated on the future and the “what ifs”.  It took a lot of prayer, therapy, and internal work for me to get past those thoughts and to focus on the “now” so that I could enjoy every precious stage because they truly go so very fast.  

As a clinician in the medical field, I already knew a lot about Down syndrome and associated health concerns.  I had to learn to be a mom to Jasiah and not the clinician who knows the medical side of what Trisomy 21 entails.  As “mom” I can focus on my son and not let my medical knowledge override my parenting.

My hope for Jasiah, as his mom, is for him to be healthy, happy, independent, confident, and successful at anything he wants to do in life.  

One thing I would tell other families is to be patient and give yourself grace along this journey. It is a beautiful journey so embrace it and take things one day at a time.  You are your child’s biggest advocate, so be bold in your pursuit to help your child or loved one be the best version of themself. 

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