Living and Thriving with Fragile X – A Family’s Success Story

Written by: Fran Davidson, Member of The Arc Arapahoe & Douglas Counties

Will My Kids Ever Have Jobs or Be Productive Members of Society?

Part 1: Vocational Preparation During School Years

My husband, Neal, and I have 2 children. Both are girls, who have the full mutation of fragile X syndrome.  This is a disability caused by a bent or broken X chromosome. It can cause low IQ’s and overall delays.  When they were first diagnosed, the girls were extremely difficult, strong willed, unhappy and loud toddlers.  Neal traveled almost 6 days a week, which left me pretty much on my own.  I was overwhelmed with just getting them through the day. We couldn’t even imagine or consider the future, let alone them ever having jobs or living on their own.  Getting through one day was challenge enough.  They did not at all fit in with or keep up with their typical peers at school, church or in the neighborhood.

Both Cassie and Tammy, now 34 and 32 years old, respectively, have severe math and learning disabilities, as well as ADD, anxiety, social challenges and overall developmental delays.  However, today, we are thrilled to report that they are both working and thriving at their jobs!  They live together on their own near us.  Since they do not drive, they either walk or take the bus each way to their jobs.  Dr. Hagerman, an internationally recognized clinician and researcher in developmental and behavioral pediatrics, has asked me to write about what has contributed to their success.  We would like to share some of our experiences with the hopes that it might encourage young parents of special needs kids.   It is not an easy road but one that can bring joy and success!  This article will focus on their school years and how to work towards independent job skills.

After working as a CPA with Price Waterhouse and controller of a large real estate company in California, we made the decision for me to stay home full time to care for our girls.  God quickly blessed that decision, as when I quit, my income was above Neal’s but within a year, Neal’s income had exceeded mine!  Being able to commit myself full time to the girls’ needs gave me at least the peace of mind that I was giving them all that I could.

Another decision that greatly contributed to the girls’ progress was Neal’s choice to prioritize his family over his desire to succeed in his career.  By moving our family from California to Colorado, when the girls were young, he was able to give up the constant travel required by his job and to decrease the financial pressure he had felt.  Neal’s increased involvement with the girls and his availability to support me with parenting and decision greatly cut back on the stress in our home.

EARLY YEARS

I believe vocational preparation should begin as soon as your kids can begin to make choices at home. Even before they start school, they can choose between two choices of what to wear or eat or watch on TV.   As they develop, they can begin to be responsible for small chores, such as setting the table, emptying the dishwasher and putting their own things away.  The director of the girls’ special needs preschool told us not to add to our kids’ challenges by allowing them to be disrespectful or disobedient.  They need to be held accountable at whatever level they are capable of.   When they start elementary school, they can take on more responsibility at school, such as carrying the attendance list to the office or passing out pencils.  As soon as the girls began school, I tried to support their teachers and to work with them rather than fighting and being adversarial.  Teachers appreciate parents who volunteer at school and will take more interest in their kids.

MIDDLE SCHOOL

At this point, after years of intensive academic training, tutoring, therapies, etc.,  it became clear to us that vocational training and practice would be more impactful long term than continued focus on academics.  This can be an emotional choice for parents.  It is difficult to accept that my child will not master all of the skills that most kids do. The parent of a special needs child must carefully consider their child’s abilities and potential.  We did not stop working on math and reading skills but we took some of the focus off of that in order to better prepare them for their lives as adults.

Each school vocational training program will have different focuses and opportunities.  Our girls were taken to a local ice skating rink and learned to pass out skates.  There were other volunteer job opportunities which helped to develop their independence and responsibility.  While I was volunteering at school, I learned that some students were working in the cafeteria, so I asked the cafeteria manager if this would be possible for our girls.  This took a lot of help and patience from the cafeteria supervisors and coworkers, but it was great experience for a first job.  It gave them a place where they felt accepted.  The free meals that they earned helped to build their confidence and to learn some job skills.

I also tried to help each girl fit into normal school, athletic and social activities but they really were not capable of keeping up.  They were good swimmers but not at a level to compete.  Track was the same way.  Cassie even tried being on the basketball team.  However, she was completely unaware of the frustration that she caused to her teammates who were all lined up, when she decided to tie her shoe instead of watching her teammate throw a free throw!  Every situation comes with challenges.

MONEY SKILLS

We worked hard at home to try to teach them to count money.  Due to our girls’ severe math disabilities, they have yet to master this skill.  We helped them to open bank accounts and to write their own checks in middle school.  I would write out the numbers and they would copy them. (Cassie still carries a list of how to write out the words for numbers in order to write a check.) They still cannot keep track of their money and I expect to continue to handle all of their finances as long as I can.  We have opened accounts that offer prepaid credit cards.  This allows them to buy their own groceries, go to the movies or out to dinner, but gives us limited exposure to them being taken advantage of.  The checks and credit cards have allowed them to feel independent and capable, even though their ability to count money is minimal.

SPECIAL OLYMPICS

This incredible no cost program provided friendships for the girls and support for us, and also skill development and exposure to many new sports, people and places.   The girls are especially averse to new and different opportunities.  They prefer routine and predictable situations.  This can be normal but theirs’ is to the extreme.  We had to push them to try new sports, even when they did not want to go.  I would go with them, volunteer and help the volunteers to know how to best work with Cassie and Tammy.  After the girls had tried 17 out of 22 sports, we then began to allow them to choose which sports they wanted to participate in.  For them, the other kids and volunteers and coaches were more of a draw than the actual sport!  This has been true of jobs, as well.  If the boss or manager is encouraging, patient and fun, the type of job or tasks becomes much less important.  RELATIONSHIPS are key for them!!

HIGH SCHOOL

At this level, the school programs begin to focus more on job skills.  As in every school, I would try to meet with every teacher to let them know that I was a supportive and involved parent and to communicate the girls’ specific challenges and best ways to work with them.  This presents other opportunities, since we, as parents, must be creative and always on the lookout for opportunities for our kids.

While speaking with Cassie’s gym teacher, I asked if she would consider Cassie as a manager of the girls’ volleyball team.  She graciously agreed.  This was a great chance for Cassie to develop punctuality, responsibility and even friendship and confidence skills.  As team manager, the kids recognized that she had challenges but did not judge her or make fun of her.  They actually really appreciated Cassie’s enthusiastic cheering for them, in addition to her help with balls, attendance, etc.  This was a natural fit with Cassie’s huge interest in sports!  Cassie was able to keep this role for several years, even after she graduated.

Tammy’s interest was in music and theater.  After joining the girls choir, she tried out for higher choirs and several school musicals, but was never selected.  The high school choir and musical director recognized Tammy’s strong interest and desire.  He created a unique role for her to be Assistant Student Director for several of the school’s musicals.  This was the highlight of Tammy’s high school years.  She took attendance and did any errands or tasks that they asked her to do.  She even got to go to the cast parties!  As with Cassie, this role enabled her to feel included while she also learned job skills.

Keep watch for my next article which will detail the continuing process, challenges and successes outside of school in their journey toward successful employment!