The topic of today’s webinar “Supporting Your Members with Mosaic Down Syndrome” seems perplexing to some. And I wonder why… Some group leaders have asked how we would address the needs of a person with mDS differently than a person with T21. I mean, isn’t it the same overall? Don’t they have the same needs? I couldn’t help but write about this today because the answer is yes and no.
I would wonder myself if I had not had a family move into my region whose grandchild had mDS. I mean…ok, he has Down syndrome…does it matter what kind? But after talking with them at length, I realized it does matter. #1 – this young man did not LOOK like he had Down syndrome. In essence, expectations were higher and teachers and peers wondered “What was WRONG with him?”. I equate that to the many stories of my friends whose children have autism. “Why does he/she act that way?” “What a brat.” I could go on and on. And #2 – this young man excelled at some things and struggled with others. Another thing that made people question his need to HAVE special services. Such challenges are not what MY child with T21 had ever faced. And so I called on IMDSA for some help. And they were there to help me understand those challenges and better support this family.
And that is why having this webinar today is important and why someone from every organization should attend. What if your child with DS had not been diagnosed until they were a toddler? Yes, it is different. What if other parents looked at your child and said “Well, they don’t really belong in this toddler class because they are not like our children.”? Understanding mDS is halfway to supporting your families – all your families. I hope to see many of you on the presentation today…because if you don’t think you need to know about it as a leader…I’m here to tell you that you do.