Every person experiences transitions throughout their life. For Peter Jones, he is gaining the skills and confidence needed for his biggest transition to date – living outside of his parent's home.
Peter is 28 years old and has Down syndrome. He has never let his disability get in the way of accomplishing his goals. His parents, Norma and Peter Jones have helped him throughout his journey.
Norma sees her role in Peter’s life now as a support person for her son’s ambitions and dreams. She says making that transition from raising her child to being his support person was not easy.
“I often find myself falling back into that stage of raising him. He’s a grown man, and I respect that,” said Norma. “I’ve learned that boundaries are important. Every day he surprises us with something new. He is continuously learning, and we never want to put limits on what Peter can do.”
The progress Peter impresses Norma with the most is his online classes that are through a program she found based in Las Vegas, NV. Their activities include cooking classes, book club, yoga, science experiments, and dance parties.
“It is rewarding to see Peter take initiative with his online classes. He is motivated and does so many wonderful things,” said Norma. “It is rewarding to see him as an adult and being independent. He spends his own money and has his own debit card.”
Peter also works at the Palmer Home Thrift Store in Columbus, MS. His hobbies are watching sports, bowling, playing with his three nephews, and spending time with his family and friends.
“I have a lot of hopes for Peter. I want to see him become independent – to manage his money. I would love to see him have a family of his own one day,” said Norma.
Norma said her family is currently working to transition Peter into living independently outside of their home.
“We have a little house outside of our house and we are trying to transition him to move there so that one day he can go into supported employment. That has been the biggest adjustment we have had to make so far. He’s only ten feet from us but it’s so hard to watch him go.”
Peter said he has enjoyed staying outside of his parent’s home. “I like playing my games. It’s been fun,” said Peter.
Peter has the best support in the world, according to Norma. “We like to stick together and do what’s best for him and make his life as rich as we can. Someone is always on call to help him out and support him. He couldn’t have the life he has without the support of our tribe,” said Norma.
Norma said her biggest concern is what life will look like for Peter when she is no longer with him. “I’ve seen other people who are tossed around when their mother, family or primary care person dies. And that is my biggest concern. We want to have him in a place where he is independent before we leave Earth,” said Norma.
Norma views an advocate as someone who speaks for those who cannot speak for themselves. “I push Peter to speak for and stand up for himself,” said Norma. “I make sure he knows he has a team of support.”
Instead of going shopping for him, Norma said she lets Peter shop by himself to build confidence. “We let him clean up after himself. And if it is not perfect – that is okay,” said Norma.
Peter said he has enjoyed learning to cook, clean, and fold laundry from his mother.
Norma recalls when she received Peter’s Down syndrome diagnosis. “I got the diagnosis the day that he was born. I had never been around a person with Down syndrome before that,” said Norma. “It was a brand-new world. It was scary and intimidating. I was very afraid because I did not know what to expect.”
Norma advises new moms not to listen to the negative things people will say and to connect with other parents.
“I eventually learned to look at the things my child could do and not focus only on the things he could not do. There are so many things that our children do well and contribute to society,” said Norma.
Norma wants parents to know they are not alone. “So many people have gone through the same things you are experiencing. Along the way, people will help you. Don’t isolate yourself,” said Norma.
“Be open. Be vulnerable because you cannot do it by yourself,” said Norma. “And you will cry. You will cry for the child you thought you would have – not for the child you have. I love my son and don’t know what I would do without him in my life.”
Peter’s experience in the school system was mostly good, according to Norma.
“When we moved here from Chicago, I was expecting more inclusion. It was a journey, and each year it got better. Some of his teachers I am very proud of because they moved outside of their comfort zone to do things they have not done before, and Peter was rewarded,” said Norma.
“When Peter was in sixth grade, there was one teacher, Mrs. Broome, that pushed him to read. Because of that, he can function better in life. He can read the newspaper and keep up with his favorite sports. It took some pushing to get us to that level,” said Norma.
Peter participated in an inclusion class during school, according to Norma.
“Peter benefited but the kids in his class benefited just as much as him,” said Norma. "Because of that experience, those students are more receptive and open. The main thing is to educate people. More people would be accepting if they understood better. People are afraid of the unknown.”
Norma said many teachers thought she was being unrealistic in the things she was asking from the school. “I wanted the teachers to push him and help him reach his full potential. Academically, he did end up getting teachers that pushed him. In high school, they switched over to life skills and he got another great teacher, Mrs. Teague.”
Peter’s transition planning for life after high school – which starts at fourteen years old – was weak, according to Norma. “I did not know what questions to ask. We are still in the process of trying to make transitions because of that,” said Norma.
Norma advises parents who are in the process of transitioning their children to adulthood to start early, do research, and talk to parents who have been through the process.
“Transition needs to start when the child first enters school. Ask yourself, 'What do I see for my child’s future?' These are the questions that you need to ask every year, not just when the child turns fourteen,” said Norma. “I advise parents to start early and be fierce with your questioning to get things done.”
“The schools may see educating my child being just for that year. But I see the school as educating him for life. And this is what I mean when I say to start thinking about transition early,” said Norma. “Everything I see is going toward adulthood – not just to fifth grade or fourth grade. I don’t care about the grade that he’s in. I care about what the outcome is as an adult. What kind of adult are we building? How are we preparing him for life?”
