We are the Hamilton family and welcome to our page! My name is Shanon and I am the luckiest person to walk this planet. I am the adoptive mother of a very energetic, loving, beautiful 2 year old son named Jackson. My wife, Sara, carried Jackson full term with no problems during the pregnancy. He was our 5th try and we are very grateful to be parents. We want Jackson to lead a healthy, fun, loving life...
Very early on we noticed that Jackson was very delayed in reaching all his milestones. We were, and still are, very concerned parents and our pediatrician is right there along side of us. She had us get an evaluation from Missouri First Steps when Jackson was 6 months old, but he wasn't delayed enough to receive their services. So then our pediatrician recommended that he see a PT (Physical Therapy) and OT (Occupational Therapy) at Children's Hospital at 8 months. After receiving PT and OT for several months, the OT recommended a speech evaluation and felt that we should try going through Missouri First Steps again. This time, Jackson was delayed enough to qualify for that program and he started receiving OT and DT (Developmental Therapy) at home. He now receives ST (Speech), PT, and ABA (Applied Behavior Analysis) as well.
Then our pediatrician recommended we see a neurologist. The neurologist gave Jackson a diagnosis of PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified) and GDD (Global Developmental Delay) which are on the Autism Spectrum. We received this diagnosis in October 2010. We asked the neurologist if we should have Jackson tested for Fragile X, but the neurologist frowned upon it saying that insurance typically doesn't cover that type of test and why would it matter because the therapy is the same. We did not agree with the neurologist and insisted Jackson be tested. (By the way, most insurance companies do cover this test). A few months later in January 2011 we received a phone call from our pediatrician and Jackson has a Fragile X syndrome.
It has been a long frustrating journey of various doctors and therapist to be told, I am not sure what to tell you. I am so thankful for our pediatrician because she has been so proactive and hasn't settled for those types of answers. As hard as it is to be a parent and receive diagnosis after diagnosis, it was a relief to finally know the underlining cause of Jackson's delays. Yes, many of the therapies used for children one the Autism Spectrum are the same; however Fragile X is an inherited cause of mental impairment. Since receiving Jackson's diagnosis we have seen a geneticist. Sara and her father are both carriers. There are other family members who may be affected by Fragile X in some way and we have shared this information with them so they can pursue being tested as they choose.
Since Jackson's Fragile X diagnosis we have done a lot of research online which put us in contact with the Fragile X resource center of Missouri. We have met so many wonderful families who have been through many of the struggles we have faced. We also went to the Fragile X Clinic in Chicago and met Dr. Berry-Kravis.
We are so very proud of Jackson and his accomplishments thus far. Jackson is currently a preschool student at Howard Park Center and he absolutely loves it. He receives some therapy services at school and still some at home. He uses some sign language to communicate with us, mostly when he wants a cookie, a drink, or for us to push the vacuum around. LOL! We know our journey will not be easy. There will be good days and great days, there will bad days and worse days, but with all the love and support we have from family and friends, we will overcome everything together.
Thank you so much for reading our story…
Knowledge is power! Don’t give up, never take no for answer! Be persistent, you are the advocate for your child!
I can’t say it enough, if your child has been diagnosed with developmental delay and/or an autism spectrum disorder, have them tested for Fragile X syndrome.