by Vicki Davis

Created on: January 23, 2009

When a parent finds out there child has a disability there is often a period of grief and loss. Not the loss of your child whom you of course love and cherish, but a loss of the expectations you had for your child's future.

I was lucky enough to diagnose my daughter with Fragile X Syndrome in utero. Being 20 weeks pregnant this was a frightening and confusing time, but it allowed me to learn and research this genetic disorder before my baby was born.

Fragile X is a spectrum disorder and it is difficult to determine what range of symptoms my daughter would present with, from minimal learning delays to severe retardation and autism. I was able to short through my feeling about having a child with a disability before she was born, and learn about what services she would need and qualify for, and get in touch with a support community.

Once my daughter was born I had moved past grief, and found acceptance of whatever life may bring. I was a type-A driven person who had expectations of College, Career, and could see me as the type of person who pushes my child. Now I have no expectations, and while I work with her and teach her, I see every moment and every milestone as a gift and take advantage of nothing, and notice every accomplishment.

I was lucky, so far at ten months my daughter's delays seem minimal, but I won't know for sure until she is a few years old. But in learning about this disorder I have read stories from so many parents who instead of being able to get help and intervention for their child right away they spend years searching for answers, wondering "what's wrong" with their child, and fighting the system to get services because they don't have a diagnosis.

In my case I had an appointment with my regional center 2 days after my Daughter was born to receive an assessment at 6 weeks. By the time she was 3 months old we were working with an infant development specialist, occupational therapist, and physical therapist weekly. As my pediatrician says, these types are services should be available for all children, the disabled, and the typically developing because they teach parents about how your child is developing and how your play can help them, and that is what we do, play.

While I am in some sense hyper aware of the milestones she is meeting or delayed on, in other ways I am much less aware because I am not constantly comparing my child to other children. By knowing she has this disorder, I have accepted that she will develop on her own time, in her own way. In some cases she developed certain skills months earlier there her peers typically would because her therapists showed her how to do these things, and I am lucky that she is an active learner and problem solver. In other skills, she is behind, but I now have the skill to help her learn and reinforce a skill and practice as we play. Sometimes it is so simple to help your child learn, but you would never think of the little things if you didn't have someone to help you.

By getting an early diagnosis, in most cases I am able to keep my child around typical development, and find her the resources she needs to succeed in life. The early intervention resources we receive are invaluable and will give her a head start. As she graduates into the school system at three, getting services becomes more challenging and complex due to a lack of resources and funding, but by educating myself I will be able to continue to learn how to help my child with the tools I am learning now.

In life I have always been proactive rather than reactive, anticipating upcoming obstacles, and I feel blessed that in this new journey I can continue on that path.

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