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Amelia's Success Story
by Katherine L. - Cheektowaga, New York
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In the summer of 2007 we had our fourth child. Disabilities come in many forms. Nobody wants to hear that their child has a birth defect. We were given the news right in the delivery room; "There is a problem with your baby".
Amelia was born with a birth defect called Bilateral Coronal Synostosis, a condition where several of the sutures of the skull were fused at birth. Amelia had both coronal sutures fused prematurely, creating a flat, elevated forehead and brow. Genetic testing was done for various syndromes. Amelia underwent a full cranial vault and orbital reconstructive surgery at 9 months of age. This 8 1/2 hour operation was performed at Strong Memorial Hospital in Rochester. She has developmental delays as a result of this condition.
...Amelia started receiving Early Intervention services at 7 months of age and received services until she turned three in 2010. During Amelia's time spent in EI she faced a gamut of potential medical problems; from the possibility of having one kidney, to problems with her muscles. Amelia spent a year in a stand up wheel chair.
Our pediatrician was not very familiar with Amelia's condition. It was through E.I. that we were introduced to some wonderful therapists. From 9 months of age to about 22 months of age we were not sure if there might be some other things wrong with Amelia. Our weeks were filled with PT 2x per week, OT 2x per week, speech 2x per week and countless doctor appointments. Amelia's physical therapist was extremely knowledgeable about coronal birth defects and how they can affect and delay the gross motor skills. She helped us find additional aquatic therapy and an Orthopedic Doctor to further help Amelia achieve her PT goals. The time we spent in E.I. could be divided in to several categories; pre-surgery, post-surgery, pre-walking and post-walking. Amelia did not start to walk till around 24-26 months of age. During this time frame we saw so many specialists and Doctors. The journey that we have been on with Amelia has not been an easy one. Our E.I. therapists were very much the needed support people for us during this time. They literately became like family members to us!
The ways in which Amelia's E.I. Team went above and beyond in their work with our daughter are immeasurable. They worked directly with our daughter at great length to help her achieve her goals. When Amelia came home from the hospital after her surgery, before we started PT back up, her physical therapist came over to see her and talk with me. When you're home all day with a sick baby recovering from major surgery, you feel so alone. Our therapist always made us feel like she genuinely cared. We were always able to reach her by phone...When Amelia was finally walking we often would have our PT sessions at the playground. Amelia's physical therapist also meet us at the town pool on numerous occasions. I can't not express to you how much of an impact E.I. had on our family during this difficult time in our lives. It is my intention that by sharing with you some of what we went through with Amelia, it will bring a glimmer of hope to another struggling family. Everyone has their "fill in the blank" situations of life. Sometimes it is nice to hear your not alone and E.I. helped us to not have to figure things out all on our own. We were so blessed to have to have such an excellent program for our daughter.
We owe a debt of gratitude to The New York State Early Intervention program.
E.I. has been a GREAT help to Amelia!
Amelia will be seen by her Pediatric Plastic Surgery team every year till adulthood to evaluate all areas of development and determine if more neurosurgery is needed. More genetic testing is still recommended and she still needs regular follow up care...Being a parent of a special needs child I have learned that you have to advocate for your child's needs and good communication is key. So much of being a part of any team is good communication and having the correct facts. My daughter spent 29 months involved in Early Intervention. I worked as part of a team with her EI service coordinator, Medicaid coordinator, PT therapist, OT therapist, speech therapist, swim teacher and a whole team of doctors. Being on my daughter's team has been, and will continue to be my number one job. It has been a huge commitment and I have had to ask a lot of questions, and seek out a lot of information. I've needed to rely on my daughter's team of Doctors, therapists and teachers for their advice, and have invested a great deal of time seeking out the best direction for her care. For me, working on her team has been about getting the best people to be on her team alongside her family.
Those older people who talk to us in life and say "The time goes by fast!" are right! Most recently we celebrated Amelia's fourth birthday... I want to thank you for the work you do equipping families with children with special needs and again share with you how much Amelia has benefited from her time spent in the Early Intervention program.
