How did you discover that your child had special needs?
We had a great doctor at Lexington Medical Center, Dr. Mariya Spasova who realized the day that Josephine was born that there was something different. Dr. Spasova ordered genetic testing along with a barrage of other tests while Josephine was in the hospital. After all the testing, including genetic testing from Greenwood Genetics, Josephine was diagnosed with chrondrodsplasia punctata type II. What that means for Josephine is that she has a skin and bone disorder. Her left limbs were less development and pulled to the right. She did not recognize the left side of her body. Since her left side of her body was underdeveloped, she had trouble feeding. Her skin had thick, glassy scales on it. Her condition makes Josephine at a high risk for cataracts. Josephine also has a heart murmur and a small hole in her heart. Josephine is seen by a host of medical specialists, including a cardiologist, dermatologist, orthopedist, and an ophthalmologist.
How did you learn about Easterseals?
Easterseals was a choice on a list of early intervention providers from Babynet. Someone recommended Easterseals because of their commitment to helping young children with special needs.
How do you feel your child is doing now in comparison to when they first started their Early Intervention journey? What are they able to do now that they weren’t able to do before?
It is a night and day difference in Josephine. When she first started, her let side limbs were drawn up. She would not use the left side of her body and her body was curved. She had severe torticollis, meaning she only turned her neck to the right. She could not keep food down because muscles on the left side were weaker. To go for that to see her standing and walking and keep up with developmental milestones is amazing. As she grows, she is able to use her body, balanced on both the left and the right. She is able to eat both bottles and cleared to eat solid food. She is weaning of formula and feeding herself. She wouldn’t be hitting her milestones without support from Early Intervention and all the therapy she is receiving.
What kind of supports have been most helpful to you and why?
Josephine is receiving great therapy- her physical therapy, occupation therapy and speech therapy has helped Josephine to learn to use both her left and right sides. Early intervention has also been great. The support Early Intervention provides in navigating the resources available to Josephine and our family has been helpful. Because Josephine needs so much, the fact that the therapist and early interventionist come to the house is helpful. Learning how to integrate what the early interventionist and therapists are doing into our everyday environment is the most helpful.
Josephine’s mother, Serena, has this advice if someone mentions Early Intervention services for your child. “Don’t hesitate. Allow them to help you. Don’t be too proud to accept the help for your child and your family.”