Chareen Monk and her husband Stanley have four children ranging in age from 11 to 19. Their third child, Myles, was diagnosed shortly after birth with Downs Syndrome. The Monk family works as advocates for the Down’s community.
Q: Myles is your third child. Did you know before he was born that he had Down syndrome? No. I had a level three ultrasound, because I had a high risk pregnancy, and was told that everything was “normal” and fine. The night he was born we had been sent home from the hospital and I had him in our car. At the hospital the staff had a hard time getting his temperature regulated, and they suggested that we do a test for Down syndrome. It takes six weeks to get the results back. When we found out that he was positive for Downs at first it felt like a death sentence. We went through all the stages of grief. We had to rewrite the book we had already written in our minds for this child.
Now, though, we feel like we were chosen to have him. Myles was placed in our lives and family for a reason. We have been able to meet so many people we wouldn’t have otherwise without him. We’ve been able to help other parents too, by guiding them through the early intervention programs. I think I showed up at the Partnership for Children when Myles was two weeks old. Of course they said, “He’s not quite ready for our services yet,” but when he was old enough they helped us navigate the programs.
Our whole family and extended family has become advocates for children with Down syndrome. My children are very supportive of Myles. Jacob, our 11 year-old son, is in the same grade as Myles and loves having him at his school.
Q: Is Myles in a traditional classroom?
No. He’s in a self contained classroom at Riverwood Middle School. We’ve had a really good experience with the Johnston County Schools. I’ve worked closely with Mr. Lee the principal and as an advocate for my son. The only problem we see in the public schools is the high turnover for teachers of exceptional children. But I understand that. It’s better for them to leave before they become burned-out.
My husband and I need breaks, too. There is a really high divorce rate among couples with children who have special needs. My husband and I know what we are up against and we take time off. We’ve been married over 20 years and do whatever it takes to provide each other with a respite and time away.
Of course we always say that having Myles is a cake-walk compared with our other typically developing teenagers. (laughs)
Q: What kind of things does Myles enjoy?
He is a typical 13-year-old boy. He likes family time and movies. He loves to eat out. He wants to be treated like any other 13-year-old boy. Sometimes we think “Why me? Why us?” But I am always reminded what a blessing he is. Myles makes you appreciate the little things. He and other people with Downs are much more like the rest of us than they are different.
He will do everything that every other child does, it just takes him a little bit longer.
Q: I know that sometimes people in public can be unkind. How do you and your family handle that?
Recently we were in a restaurant and a family was staring at Myles. We just told him they were staring at him because he’s so cool. He gave the family a big thumbs up. He doesn’t hold a grudge and there is not a lot of hate in his heart. As a parent though, I always appreciate it when people take the initiative to come up and meet Myles. It’s a great learning experience for typically developing children, too. I always say there are a lot worse things in life than having a child that wants to hug everyone he meets.
Q: Mrs. Monk, you and your husband are co-chairs of the Triangle Down Syndrome Network (TDSN). What does your group do?
We try to support and educate families of children with Down syndrome. We raise money for research and for a planned inclusive living facility for adults with Down syndrome and special needs called HopeSpring Village. As our son, Myles, gets older, Stanley and I have had to start thinking about his new life stage and planning for his future.
Q: What would HopeSpring Village provide for people like Myles?
It would act like an assisted living facility with banks and a grocery store where adults with special needs like Downs can live fully and safely among friends. Additionally HopeSpring Village would include housing, social and spiritual programs, vocational training, and adaptive technologies that bolster confidence, develop life skills, and provide opportunities for employment.
We raise money in several ways including an annual golf tournament and a Buddy Walk in October. Chris Burke, the actor from “Life Goes On”, will be there this year and he and his band will play.
We are also selling a 2013 calendar now, and will have the 2014 calendar ready to sell in October. Myles will be featured on a page in the calendar.
Q: That’s great – how did that come to pass?
We were contacted by the person putting the calendar together and they suggested that Myles apply. The calendar features children of all ages, up to 21, with Down syndrome. It costs $15 and can be ordered at the Triangle Down Syndrome Network website, triangledownsyndrome.org.
Correspondent Holly Lock