Eight-year-old Jacob Murasko began his presentation to his classmates at Menominee Elementary saying, “Hi. I’m Jacob, I am 8-years old and I was born with Down syndrome. Did you know that I have one extra chromosome? No, you can’t catch Down syndrome from me.”
His mother Marla added explanations so that every child could begin to understand how children with Down syndrome are both the same and different.
The presentation was part of getting the word out about Down syndrome during Down syndrome Awareness Month.
Marla Murasko said, “Down syndrome (Trisomy 21) is a chromosomal abnormality where children are born with three copies of the 21st chromosome.” She explained that chromosomes make up genetic material that determine what color eyes a person has, what color their hair is, and how tall they are.
Jacob’s mother also helped him tell the children in his class about his feelings. He said, “Sometimes I get tired in class. There are times I get upset and don’t know how to express how I feel, so I hit, but I don’t mean it.”
Marla shared photos of Jacob and other children who have Down syndrome. She told them that people with Down syndrome may look a little different, many have health problems, and they learn things slower.
She went on to explain what surgeries Jacob had to make him stronger. She said, “When Jacob was born, he was having trouble breathing and eating. So he and I took a ride in an ambulance to a big hospital in Chicago, where he had a shunt put in to help him get stronger for his big surgery.” When he was six months old, Jacob had open heart surgery to repair tissues that he had with his heart condition.
Marla said she feels it is very important to educate our children about awareness and acceptance at an early age. She credits Heeren with the idea of speaking to Jacob’s classmates before he was promoted to her class. Marla said, “When everything fell into place, I approached Heeren and Wendy Bendy, social worker, about having Jacob do a morning announcement about October being Down Syndrome Awareness Month.” Although Jacob didn’t want to talk, his aide brought along other children to talk about “their friend Jacob”.
Jacob has a full-time aide with him during his six hours in school. Marla said, “She (aide) does a lot of reinforcing what the teachers are teaching, for instance, addition and number sense.” The aide is also instructing Jacob in reading using the Read Naturally program. As extra reinforcement, the aide attends his speech therapy sessions and all his additional therapies, as well as helping him during lunch.
As time goes on, Marla said she would like to see better resources for training and preparing teachers and aides. She said, “I feel that teachers/aides aren’t always prepared to handle children with special needs and it falls too much on parents to provide suggestions on how to educate.”
Marla said, “Jacob is making his mark on our community by spreading awareness, teaching that inclusion and acceptance of children with Down syndrome is “cool”, and I am determined to give him the voice and the platform to do that.”
Right now, Jacob seems to be gaining in school. Marla said she and her husband Paul have a goal to get him to start writing and leaning math. She said, “He is doing both and really doing well in reading, because of the wonderful suggestions from his teachers.”
They also have long-term goals for their son that sounds like those for every parent. She said, “My husband and my long term goals for Jacob are: “We want him to be happy and as successful as he can be in whatever he chooses. We want him to be able to have choices and to be as independent as he can be.”
Marla continues to share information concerning special needs in her blog “Special & Determined/ A Special Needs Mom at blog at http:www.special-and-determined.com. She said, “This blog is to give a window into the beauty of Down syndrome and to share our everyday life with all its special challenges.” “I look to share my perspective of why being a mother of a child with special needs is truly a blessing. I also share product reviews, special needs resources and parenting tips.” she said.
Marla spoke to how she hopes to share how financial concerns can be met. She said, “It’s important for families when they first learn of a diagnosis to find out what support services both for therapy and finances are available to them in their state. She said, “They need to get on whatever wait list for medical waivers and Medicaid as soon as s possible.” The Murasko’s have used what they term “lot of out of pocket” money to provide Jacob with therapies including OT (occupational), PT (physical), and ST (street).
At the end video at the school presentation, the message was easy to understand. It read, “Jacob likes to be with his friends. Jacob is just like you.”
Carol Anders Correspondent
