Supporting Families & Caregivers
“Anxiety is the best word to use for how I feel right now. My son will be turning 22 in March 2017 and I have no idea what supports will be there for him?? I have been told that there is a freeze on funding. I am looking at programs and trying to figure out what would be the best option for my son, But I don’t know what will be approved for him. He does not have a driver’s License; so he would need transportation to and from a program and a job if he obtains one. He needs a lot of help with socialization; so an adult companion would be needed. But again I have no idea what will be available in March when he turns 22. Very scary!”
The Inclusive Success of Tess
“My Tess turned 21 this year, a major milestone in most young people’s eyes. It was no different for Tess. She celebrated drinking her first cocktail with her inclusive friends and family. This is the normal age to have new dreams and life goals. This was no different for Tess.
We have done many vision boards where Tess created the life she wanted. The vision included living on her own, having a job she likes, having friends, hobbies, finding love and being happy. That was the same vision I had for her 21 years ago. But Tess has Down syndrome and celiac. How can this vision happen? Can I give her the support she needs? Who will give it to her when I am gone? So many worries, yet, we rose to the challenge. We worked hard to overcome all the limits put before her. We fought for her to stay in an inclusive classroom, we enrolled her in activities in the community such as hip hop class, pop warner cheerleading, babysitting classes. There were sleep overs, parties, volunteering with her therapy dog, bike riding, swimming lessons, etc.
Was this the vision? Yes. Was it easy? NO! It took more time and guts than we ever knew we had. It also required us to spend money we never imagined we’d have to spend in order for our daughter to have what was rightfully hers, a life. There were many obstacles, mainly the inability of the school districts and agencies to see and believe in her vision. But we persisted and Tess succeeded. In spite of being in and out of hospitals and months of recovery from an inflamed stomach due to celiac, she bounced back after long months of enduring pain. She wanted her vision.
In high school all Tess wanted was to go to the prom and graduate. And she did just that, she went to the prom and walked with her class at graduation. What followed were many empty moments and lonely times without a friend, without a job.
Tess attends Cape Cod Community College where she is enrolled in a yoga class and also takes dance classes in the community. But that was not enough to call a life.
Long ago we had a vision party where Tess, her friends and family talked about who Tess was and what she liked. She loved dancing, putting on shows, traveling, and cooking. She had great computer skills and liked being with people. With these interests and characteristics, what could she do that would create a life of her own? One day it came to us, Tess needs to start her own business, but what? It had to be something that would allow her to be active in her community. We thought of franchises, but we could not afford to buy one. We eventually looked into the Pampered Chef business. After all, Tess enjoys cooking, having parties and spending time with people. With a few accommodations and assistance of a job coach, Tess became a Pampered Chef consultant. She began a new career leading her cooking parties at people’s homes, business offices and through Facebook. She attends monthly meetings with other consultants and even traveled with them to the annual Pampered Chef conference this past July.
This is a success story, but it takes continued support to provide the guidance that Tess requires to maintain her business and her independence. When she turns 22 years old, her vision of having a real life will remain. We hope that she will be supported with resources that will help her continue to be out in the community to gain the life she wants and deserves. Her vision has not changed, she just may need a different kind of help to achieve a real life. This is what her parents have work so hard to give her. I pray that services will be there and new ones developed to continue to keep Tess and all kids like her on the path to be able to dream the vision of a real life and receive it.”
The Griffin Family’s Story
“My son is 16 and has a intellectual delay and autism. He is desperately lonely, and doesn’t know how to make friends with other kids his age. He dies not know how to be a friend, and although he desperately wants to have friends, he needs extensive interventions in the area of social nuances and exchanges. We have tried to use our small stipend for money to cover more than a couple trips for a couple of hours, per year.
Both my husband and I are disable, and our son is 6’5 and weighs 300 lbs. He recently had spinal surgery and was home and our of school for 9 weeks. We spent our stipend on having someone come into the house to stay with him so we could go grocery shopping and to the doctors for our selves. So this year there will be no recreational opportunities and no in home respite because we have already used all of that funding. We are trying to build our son’s independence and he can stay home for up to two hours at a time alone; however during that two hours he generally calls to ask questions or express fears, rational and irrational about every ten minutes. My son has no concept of either money or time, and is extremely niave. He has been the victim of bullying, emotionally and physically, and can not be in the community alone as people take advantage of him and potentially could physically harm him. I am the only person in our family that is able to work, and if anything happened to my husband, I would not be able to continue to work because my son needs full time car. I know from working in Human Services how lucky we are, but I also know that between therapies and additional costs associated with his disability, we are less than a paycheck away from homelessness. “
“With this year’s underfunding of Turning 22 money (even before today’s 9C cuts), I thought it might be helpful to send some photos of my son Isaac working at Project Search.
Although Isaac’s intellectual disability means that he will need support to work, he can work and he very much wants to work.
These pictures aren’t atypical – even though he also has a speech disability, he will frequently call me to tell me about work – it’s incredibly important to him.”