by Laura and Mike Freville
11/1/2009
We did not know that our son Brandon would have a disability until the day he was born. His umbilical cord was wrapped around his neck four times, and he had meconium aspiration (difficulty breathing caused by inhalation of amniotic fluid and other material). He also had several seizures shortly after birth. The doctors told us they did not know what the extent of his disability might be - "it could be very mild, or he possibly may not walk or be able to hear."Brandon stayed in the NICU for 13 days before he could go home. Family time with him was very limited. For the first six months of his life, he took seizure medication every 12 hours. We watched for signs of something; it was overwhelming. Brandon was later diagnosed with cerebral palsy - the result of damage to the motor control centers of the developing brain. Doctors performed a battery of tests to determine the extent of his disability. The tests revealed that he could not hear some sounds, so he began using a hearing aid at a very young age. When Brandon was about 6 months old, we noticed he was neglecting his right hand and leg. More tests determined he has muscle spasticity of the right arm, hand, leg and foot. He also has comprehension challenges. Taking Action
Once we understood that Brandon was going to have a life-long disability, a neighbor recommended a pediatrician she knew who also had a child with special needs. This physician took our family under her wing, helping us find the doctors and specialists who could care for Brandon. He was enrolled in speech, occupational and physical therapy, where he always tried really hard.  |  |  All parents are faced with big decisions when their children reach 18, but it's a little more complicated when your child has a disability. |  |  |
Brandon also participated in medical studies to treat his spasticity, improve his range of motion and manage growth spurts. One treatment was having electric shocks pinpointed to muscles in his arms. He also wore braces with rubber bands, designed to pull his fingers back and stretch his muscles. At age 4, Brandon began Botox injections, which can help relax certain muscles so surrounding muscles are strengthened. He still receives Botox injections at Arkansas Children's Hospital and amazes us with his courage. When he was younger, he had to be sedated for the shots, which involve having a long needle pushed in and out of different parts of his muscles - something most children or even adults couldn't tolerate. Now, Arkansas Children's Hospital uses Brandon to teach new doctors how to administer these shots. He always comes home with a smile on his face. We think he understands he's helping make it easier for other children that have to tolerate similar injections. Finding a Supportive Environment When we moved to Little Rock in 2000, Brandon was 8. He was enrolled in the resource program at a local elementary school. We managed, but he struggled with learning and keeping up. There were many late nights at the kitchen table trying to get homework finished. We realized his homework assignments seemed to be taking as long as the school day. He was struggling with concepts.
|
