- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
“How in the world will we raise our developmentally disabled kids that get so overwhelmed by almost everything? Will they have to live with us forever? Will life ever calm down? Will they ever be able to hold down a job or live independently? We have no idea how to parent kids with special needs! We have never even known anyone with special needs kids!”
That was how my husband, Neal, and I felt after our girls were both diagnosed with the full mutation of fragile X syndrome when they were just toddlers. They were significantly behind in every area. Fragile X is a little known syndrome, but it is the most common cause of inherited intellectual disability and autism. Symptoms of FXS include delays in speech, language and motor skills, as well as behavioral and sensory problems and low IQ’s.
They have jobs, are
active in church and
have a full social life.At ages 25 and 23, our girls, Cassie and Tammy, moved into a townhouse one mile from our home. They have jobs, are active in church and have a full social life. The girls walk three miles round trip to their jobs and regularly use the bus and light rail to get to Special Olympics practices, doctor appointments and the mall. A huge part of their success is due to their “facilitators” who are funded through Medicaid. The facilitators help them with their chore charts, menu planning, grocery shopping, cleaning, laundry and errands. These facilitators are role models, mentors and friends to our girls.
Our desire to share some of our story comes with the hope and prayer that it might encourage other parents that find themselves on this journey. We, too, have experienced much discouragement and feelings of hopelessness, but have learned much and experienced many blessings along this path as well. Having special needs kids has been compared to planning an exciting trip to an exotic land but then landing in a totally different place which happens to have its own charm. Our journey is not what we planned but God has guided and blessed it and we have found this road with its challenges and successes to be a wonderful adventure – one that we feel blessed to have taken.
Our first lesson was that we are not alone. As we enrolled our girls in special preschools, we met other parents sharing similar struggles and many amazing teachers and professionals who showed us so much compassion, hope, encouragement and direction. Also, we would pour our hearts out daily to God concerning our frustrations, disappointments, feelings of being incapable and overwhelmed, as well as, unrealized dreams and hopes. God knows the “big picture” and guided us every day in the big and little details and difficulties with our girls. We learned early on to follow up on every lead for professionals, programs and opportunities. This led us to amazing doctors, specialists, therapists, schools, teachers, tutors, facilitators, funding sources, programs, recreation, camps and Special Olympics.
We learned to watch for their
successes and to celebrate
each accomplishment.We learned not to compare our girls to those of our friends who were developing normally. It was easy to feel discouraged and hopeless by all that our kids were not able to do. We learned to watch for their successes and to celebrate each accomplishment. I am sure you could hear us celebrating from miles away when Cassie finally walked at 18 months or rode a bike without training wheels at age 9 or tied her shoes at age 12! Those accomplishments represented hours and hours of frustration and hard work by the girls and by the many involved with them!
We tried to give Cassie and Tammy enough support to build success and not discouragement. We encouraged them to make phone calls independently to invite friends over or to do an activity with our family but it was a challenge to be sensitive to limit the rejections they might receive. We made a big deal of birthday parties to try to encourage friendships or at least kids that might be nice to our girls and say hi to them at school.
Focusing on their strengths led us to Special Olympics. God blessed the girls with healthy bodies and high activity levels. Special Olympics helped channel their enthusiasm and energy. It is an incredible program that built many social, athletic and independent skills in our girls, as well as, providing wonderful social peers, friends and mentors. As we cheered our kids on, the other parents blessed us with friendship, shared circumstances and resources. We even learned of a vocational school for special needs young adults that Cassie attended in New Mexico.
If a new opportunity came up and we wanted them to try it, we learned not to give them a choice. Since they are not risk takers, they needed to be pushed, or they would not have tried anything. We would say, ”Tomorrow we will do such and such” instead of, “Do you want to do this?” Slowly they learned to make their own choices. They are visual learners and needed to be able to picture what they were choosing. This was especially true with Special Olympics. We encouraged, transported, cheered and even coached while they tried 17 out of the 22 different sports that are available in Colorado. Later on, we let them chose their favorites, which turned out to be sports Neal, and I knew very little about. (Neal and I started local teams for skiing and track but the girls chose figure skating and gymnastics! So…new opportunities for us, too!) Special Olympics also provided amazing opportunities for them to go to Ireland and Japan to compete in the World Games. Those 10 days of traveling with their teams and not their parents, greatly contributed to their growth in learning to be on their own.
Our girls are extremely social and love people. Coaches, volunteers, bosses, etc. are much more important to them than the actual activity, task or job. I tried for several years to interest Cassie in tennis but she would have nothing to do with it. My mistake was to introduce her to the activity and not to focus on relationships. However, when a favorite coach from skiing started a tennis team, Cassie could not wait to participate. The same has been true of other sports and of bosses. At times we have been blessed by patient bosses who gave very clear and simple directions. In those cases, Cassie would do well and enjoy the job. However, management changes would usually result in less patient managers and her needing to look for another job.
As early as possible,
build responsibility.As early as possible, build responsibility. Even when they were very little, we tried to let them choose between two shirts or two meal choices or two activities. Caring for a pet also builds responsibility. As soon as they were partially capable, we expected the girls to set the table, empty the dishwasher and to feed and clean up after our dogs. We even designated each girl as the owner of each of our two dogs, which helped them to feel entrusted with a great responsibility and to receive amazing unconditional love!
Helping them to develop independence is also key. Encourage them to walk or take the bus to school, instead of driving them. You can also ask a neighbor kid to walk with them until they learn the route and can be successful on their own. As soon as you are comfortable, start leaving them alone for short periods of time with supports and build from there. As they succeed in little things, you can add more responsibilities. And, of course, make a huge deal about each accomplishment!
Keep a look out for good role models. Because our girls are such visual learners and excellent imitators, this was extremely important as we considered potential babysitters, friends, tutors and facilitators.
In 2008, Cassie and Tammy moved out! This was a step that we had not even considered a possibility as they were growing up! They had been out of high school for several years. Cassie had spent one year of living away from home at a special needs college with a lot of supports. After years of practice and support from us, both girls were responsible with their chores at home and their jobs out of the house. We involved the girls in everything from choosing the townhouse and choosing their rooms to choosing the flooring and paint colors and actually painting (with help) and cleaning it before they moved in. This helped them to process the fact that this would be their home!
Even though the girls are living on their own, we talk daily with them and with their facilitators. We handle all of their finances, social security, disability, much of their schedules and some transportation. Neal and I are enjoying getting to know each other again!
In closing, the biggest key to my sanity and the girls’ progress has been trusting God and remembering that God is in charge, not me! He truly knows what is the very best for all of our kids. He planned their lives and futures before they were born. God chose you to be their mom or dad. Regardless of how ill equipped or unprepared you may feel, He knows that you are exactly what they need!
Copyright © 2014 Fran Davidson.