If you got a chance to read last week’s post about Autism then you know that this week I will be sharing one mother’s story of how she has learned to embrace the diagnosis and love her son through it. Before I get into the story I just want to say that nothing will ever prepare you to care for a child with special needs. I hope that the insights shared will serve as a starting point.
This story begins Christmas Eve 2003 when Nicole Roberts became very ill. She suffered through the holiday and went to the emergency room the day after Christmas. They ran all kinds of test and could not find anything wrong with her. Then finally, her family doctor asked her if she could be pregnant. She didn’t think so, but decided to take the test just to rule that out. Sure enough, she was six weeks pregnant. She experienced a normal pregnancy, she took her prenatal vitamins and went to her scheduled appointments. Then on September 3, 2004 she had a baby boy, Courtney, named after his father. Courtney Jr. or C.J. weighed 8lbs and 9oz. The delivery went well except he had a huge head and they had to use a vacuum and forceps to deliver hm. He tested great and all was fine.
C.J. was 6-8 months old when his maternal grandmother noticed that he wasn’t developing like he should. At first Nicole didn’t want to believe that something could be wrong with her child and so she ignored the fact that he was 11 months before he began to crawl. He began walking at 13 months, but he was very slow and uncoordinated. He also didn’t say da da or ma ma or try to talk at all. Instead he would squeal and make noises. She shared her concern with her husband and he said, “There is nothing wrong with my son.” Instead of getting him tested they decided to take him to church and have the elders pray over him. C.J. received lots of prayer that year but nothing was changing and Nicole was beginning to get worried. In the meantime, she became pregnant with their second son Jacob and it became painfully obvious that C.J. was different. Finally, at two and half years of age, C.J. was diagnosed with Autism Spectral Disorder (ASD).
In 2006, Autism was still a relatively new disorder and there was little to no research on it. His doctors really had no explanation as to what caused it or how to treat it. Her husband, Courtney Sr. was still in denial and her church kept saying, “He’s healed. Don’t worry.” After many months of frustration, Nicole finally went in search of someone who could help her help her son. The Children’s Home Society and The Center for Autism and Related Disabilities came to her rescue. She was able to get a speech therapist to come to her house 3 times a week and an occupational therapist to come 2 times a week to work with C.J.
Nicole and her husband had a third son a year ago. It was during this pregnancy that she found out that she was a carrier of the Fragile X gene. The Roberts now know that C.J. also has Fragile X Syndrome. This discovery helped them to understand C.J. better because the Autism diagnosis did not fully describe his condition. The past 8 years have been sort of a trial by fire for the entire family, but Nicole has come to embrace his abilities as oppose to obsess over his disabilities. If you suspect your child may have some developmental disorder or has been recently diagnosed with ASD, Nicole has some advise for you.
- Patience is the number one thing you must develop. Not only will you need patience with your child but also with your spouse and most importantly with yourself.
- Family counseling is critical to keeping your family together. Having a child with special needs can be a strain to even the best marriage. It’ also hard on the other children in the house.
- Find and use all the available resources in your community. You don’t have to go through this alone. There are support groups and programs dedicated to helping families of children with special needs.
The Little Things You Can Do Today
- Get Evaluated – If you suspect something don’t hesitate to have your child evaluated.
- Check Family History – Ask your parents and grand parents if there is any history of developmental or genetic disorders in the family. They may not have ever been diagnosed but knowing that a great-uncle may have had traits of mental retardation goes a long way toward deciding if you should undergo genetic testing to see if you are a carrier of certain traits.
- Focus on your child’s abilities and strengthen them.
When Nicole looks at C.J. she sees a very intelligent little boy who has excellent recall, loves to count, and is a very loving child. When asked what is one thing you want people to know about Autism, Nicole responded, “They are all different with their own personalities. They think and dream like any other child.” She describes C.J. as a loving, happy, delicious little kid and she wouldn’t trade him for nothing.
Until Next Week,
Nicole D. P. McLaughlin
- The Faces of the Autism Spectrum: Meet Hannah! (mypicturedmoments.com)
- What is Autism? – Baby – Development (everydayfamily.com)
- Light It Up Blue (thelittlethingseveryday.wordpress.com)