As a mom of 2 beautiful girls, one with Down Syndrome and in remission from Leukemia, Jocelyn Joiner doesn’t skip a beat. With the foundation she started, she inspires inclusion and acceptance for children with special needs in schools.
Jocelyn candidly shares her journey that led her to launch her foundation, how she discovered that her younger daughter has Down Syndrome and how her experiences helped her live a more fulfilled and purposeful life.
Tell us about yourself and what you do.
First, I am a mom of my two girls. Alyssa is 3 and Kendall is 9 years old. I run my volunteer-based nonprofit foundation called SNAP, which stands for Special Needs and Abilities Project. I started SNAP in 2009 after Alyssa was born. She has Down Syndrome and was diagnosed with Leukemia. She inspired me to start this foundation.
We mostly work in the Long Beach Unified School District (LBUSD) to facilitate the Best Buddies and the Best Friends Programs in as many schools as possible. We work for children with a wide range of special needs. I named it special needs and abilities so it will have a very broad range to include children who are experiencing medical, physical and mental issues.
I knew there was a need for programs that inspire people to be more accepting of children with special needs and to bring awareness to the belief of inclusion which brings them together in school classrooms instead of sending them to a different school or to the other side of the campus.
How do the Best Friends and Best Buddies Programs work?
The Best Friends Program takes the class of special needs children and they bring them into the class with the typical children. They have their buddies or partners and it is a one-onone program. They play games and do crafts together, build friendships, sing songs and/or go outside to the obstacle course. It’s mainly for the kids to get to know each other and reduce the fear that children feel about people with special needs. The program really develops their friendships and from their friendships, they become more accepting of each other. They discover they have more in common than different.
The Best Buddies Program was started by the Shriver family, Maria and her brother, Anthony Shriver. They do the same thing, but at the college level and it’s now in the high schools in LBUSD. However, they have their own counselors and programs. We just try to facilitate with them and bring more awareness to the program.
Share your journey to what led you to start your non profit.
When I was pregnant with Alyssa, I did not know she had Down Syndrome. I didn’t want to take any of the tests because of my age. I was over 35 years old. I knew about the risks, but I didn’t believe any diagnosis would change my mind. So I just thought I would wait and see. When Alyssa was born, I honestly didn’t know she had Down Syndrome. I couldn’t see it in her physically, probably because I was so exhausted from labor or just because I was filled with love for my newborn baby. The next morning, her pediatrition came in and she noticed certain physical characteristics. In addition, Alyssa had some issues with feeding and they ran some tests. After the results, she was diagnosed with Down Syndrome.
After her diagnosis, the responses I received from people were interesting. Instead of congratulating me, they felt bad for me and kept saying they were sorry. I thought to myself, that she was healthy and so beautiful and meant to be in our loving family. There’s no need to be sorry. I was confused by that. I see it as more of a gift for myself, my family and my older daughter. So then I started pondering on the reasons why people have this attitude, because I didn’t really see it as a problem.
Since I had past experience as a teacher for children with special needs, I was exposed to that world. That made me really think that I needed to do something to change people’s perception. There was so much in the special needs world to focus on, but I wanted to focus on acceptance and inclusion. Since the world of elementary school was the environment I knew, I contacted LBUSD and told them about SNAP. Once they were on board, I worked with the Best Buddies program to spread the word out to schools and parents.
The schools are so overwhelmed right now and class sizes have gone up along with the teacher caseloads. They love the idea of the programs, but it’s the workload involved that scares them. However, my vision is to help the teachers and facilitate the programs in the classroom and not make it a big ordeal like field trips and parties. It is a very simple philosophy. One-on-one during lunch period, playing games, making crafts, listening to music, etc. Simple.
We need volunteers that want to do projects or help at events, such as the silent auctions, security, selling tickets, helping the bands get on and off the stage. I love volunteers. I welcome anyone who wants to come and help.
What top advice would you give a mom who just found out they have a child with special needs ?
I think accepting help would be the first bit of advice. Also, to educate yourself on what the child’s rights are as far as getting them services and early intervention. Get in touch with their local Harbor Regional Centers as soon as possible to get their child evaluated. A lot of people want to get the tests done and the paperwork started for the necessary services such as occupational therapy, physical therapy, speech therapy and respite care starting from birth to three years old.
Lastly, maintain a positive attitude by speaking to other moms who can share with you their ideas and journeys or reading other people’s blogs or starting your own. There are a lot of great books out there. I read a book called Babies with Down Syndrome. It goes through the type of medical issues they may have, what to look for, what to monitor, doctors, physicians and centers you can go to for help.
What do you say to your older daughter or family members on how to handle other people’s perception of Alyssa?
I talk to Kendall a lot about other people’s perspections of Alyssa, because she has only seen the positive reactions. I tell her that some people might be afraid of Down Syndrome, because they really don’t understand it. Other people may act in a mean way towards Alyssa and that is when she will need to protect her in some ways. I also tell her that she may need to educate her friends and tell them that Alyssa has Down Syndrome, which means she is just like them except that she may look and talk different, but inside she is the same.
I have friends of mine with typical children who have told me they’re really happy that their child gets to grow up with Alyssa, because they won’t grow up being afraid or have that negative attitude when they see someone that may be different than themselves.
I think now it is better than when we were growing up, but I think in the special needs community there are still some fears or prejudices that people have. They don’t see with education, people with special needs can become so much more than what they have been labeled with. With Down Syndrome, just like Autism, the spectrum range is so huge. I have friends with children that have Down Syndrome who are not verbal and I also have others with children who are reading and writing and functioning just like a typical child.
One thing about Alyssa. She doesn’t have a problem having Down Syndrome, but a lot of other people have a problem. Alyssa has no issues with who she is. She is a very happy, confident and out going girl who is friendly to everyone.
When was Alyssa diagnosed with Leukemia?
When she was 18 months old. People with Down Syndrome have a higher probability of being diagnosed with Leukemia. Fortunately now with all the funding for research, people who have been diagnosed with Leukemia can live a lot longer. One of the doctors told me that when people were first treated with chemotherapy, they were afraid to try it with people who have Down Syndrome because they already had low immunity to begin with. They thought treating them with chemotherapy would kill them, because it is so hard on the body and it basically just wipes out any immunity that you have. Interestingly with the type of Leukemia Alyssia had, which is called AML, people with Down Syndrome do better during treatment, not necessarily with the outcome of survival, but during treatment they don’t’ have as many side effects. So when Alyssa was treated, she did lose her hair, but she was not nauseous, she had a good appetite and she was not physically wiped out. She was up at 6:30 in the morning until 6:30 at night with no nap. At that time, she was not interested in TV in the hospital. So it was 12 hours of providing continuous entertainment for her. She had a lot of energy.
Alyssa lived in Millers Children Hospital in Long Beach, CA for 6 months when she was treated for Leukemia and she had a great time there. She was surrounded by nurses, doctors, therapists and staff who were so positive and loving towards her. They were all phenomenal. Currently, Alyssa is in remission.
What is your biggest challenge as a mom of a child with special needs?
Time management is hard to balance with my older daughter’s activities which are swim team, dance and homework and the daily routine of preparing meals and the activities with Alyssa throughout the day and evening.
Another big challenge for me is keeping myself organized and not overbooking. I tend to take on too much. I do PTA for my older daughter’s school. Once a month I go to Miller Children’s Hospital to meet with a social worker for a foundation called, Parents Against Cancer where we meet with newly diagnosed families and talk to them about the experiences, because when your child is newly diagnosed your world as a parent changes in an instant. You are forced to make medical decisions and change your home life. A lot of times, a parent will come and live at the hospital with their child and if there is a second parent, that parent will need to run the household on their own.
So how has your perception on life changed because of Alyssa?
Huge. I think probably the biggest change for me was to not be so hard on myself as far as setting goals, achieving everything and trying to being the best at it all. I was so overwhelmed and lived in a state of hyperactivity by being constantly on the go. I have learned so much more from Alyssa than she could ever learn from me.
I have learned to be much more patient, kind, forgiving, honest, strong, sympathetic, apathetic, loving, affectionate and she has also given me the determination and confidence to start my foundation. She has opened my eyes to a new world and to see life from a different perspective. I am able to be more accepting of other people and see where they are coming from. I listen more and don’t judge people. I am so very lucky to have her and if I had a magic wand I wouldn’t use it because I wouldn’t want to change anything about her!
Talking with friends and family helps alot. I pray. I accept help. I try and find the little things in life that help me be more organized. I eat healthy and maintain a healthy lifestyle by going to the gym, walking to the park with Alyssa and getting a good night sleep. I have to have my sleep! I mostly like to read about health or education and to find the best ways my children can learn.
One of the most important things you can have to maintain your life is your faith, whatever that may be. Having faith in a higher power, something that is bigger than you that has good energy or vibrations can help tremendously.
When I went through my journey with Alyssa, I really felt that God gave her as a gift to me because he saw me heading in a path that was a little more egocentric and I was missing out on things that counted more.
by Stefanie Ryan
(Photos courtesy of Grace Photography)
I am married and have 2 kids. I work a job and am involved in lots of activities around my kids and community. I am a leader for one of my daughter’s Girl Scout troop and my other daughter is actively involved in her troop. I am on the Children’s Hospital of Orange County’s (CHOC) Parent Advisory Committee and I volunteer there. I am also on the board of the Community Advisory Committee (CAC) for Newport-Mesa Unified School District.
Tell us about your special needs daughter.
My daughter has Spina Bifida. She goes to school with a one-on-one aid that I trust now after quite a long time. She also attends a good after school program that is available until 6:00 pm, which is important to me. If I need to work until that time, I know she’s in a good place.
I started a chapter for Spina Bifida and had a walk two weeks ago. I set up volunteers for it. I also work for New York Life Insurance where I am able to run my own business and work 1 or 20 hours. That flexible schedule allows for other activities and I am able to work and fit in what’s important.
So what is Spina Bifida and what does that mean for you and your family?
Spina Bifida develops in the first month of pregnancy. It is the number one defect at birth and because of it, my daughter is in a wheelchair.
When she’s with me, I call it the rubber band effect. The rubber band doesn’t stretch too far because she doesn’t like to be too far from me. When we’re at home, she has chores, does what she can at home, puts away silverware and puts towels away in the laundry room. The other day I asked her why she didn’t take the plate off the table. She replied that she didn’t want to pick up the plate because it’s made of glass and she didn’t want to break it. She’s very funny.
She has a medical procedure that has to happen every 3-4 hours every day and procedures every other night as well. It makes it hard to plan family outings, because we need to be conscious of her medical schedule. We have to plan things out and not let it hinder what we’re going to do. I’ve worked with her medical doctor to ensure that she can be involved in an activity without being hindered by her medical procedure. Sometimes they’ll tell me about new medications or procedures and they say a certain product can allow her to go all day. So now she can go on school field trips.
She is very knowledgeable of the world and how to make her life easier. A while ago we went through and made things easier for her in the kitchen. Everything has handles so she can do the day-to-day things. We really wanted to keep it functional but pretty too.
Once the kids are in bed, 9-11pm is my time since my husband works the night shift. I like to read and make jewelry. My oldest daughter and I make jewelry together. It’s one of those things that allows us to spend time together.
People often ask me how I handle it all. It is a lot of work, but when I have a bad day I think about my friend that has children that don’t speak or others that have more physical disabilities. I put myself in their shoes and think my life is not that bad. It’s pretty good. Everything’s a gift.
If we lighten up a little bit and don’t have to be a perfect mom or wife all the time, I think we’d all be a little bit happier. We don’t have to be Mrs. Cleaver!
Each person needs to take 10-15 minutes to breathe. To do things that make you happy and what satisfies you at the end of the day, such as getting a massage or doing yoga everyday. We’re unique and we have our own thing that will let us relax and not have our mind in overdrive. I like to have my time at night so I can sleep better after I’ve relaxed, instead of running around the house right before going to bed. When I do that, it takes me so much longer to fall asleep. That’s why I read and calm things down before I go to bed.
What advice would you give moms who are struggling to find balance between their work and home life?
My daughter has allowed me to focus on how precious everyday is and to not let the small things get to me. Sometimes people drive around and get so angry. If someone cuts me off I just think to myself, “I hope they get to the hospital a little bit faster.”
Look at things through someone else’s eyes and maybe your situation isn’t as crazy and hectic. Life can really be simple if you let it be.
(Photos courtesy of Grace Photography)