Jakob Nicastro. Photo by Nick Shepherd.
Standing on the front porch of his home in Rogersville, Jakob Nicastro is wide-eyed. The wind has picked up, and he is pointing it out to his mother, Misha.
Misha brings her hands to her eyes and tells Jakob she sees the wind. He stares for a few more moments with the wonder only a child has before turning and heading inside.
Jakob is like a lot of 6-year-old boys. He loves to swim, likes playing on the iPad and enjoys being outside. He is curious about lots of things and loves cupcakes.
But Jakob is also different from other 6-year-olds. He was born deaf and has been diagnosed with severe autism.
“We finally got the diagnosis when he was three and a half or almost four years old,” Misha said. “It takes awhile to go through the whole process of OK, yes, now his sensory issues have changed and it has become autism.” Jakob was born deaf due to a rare genetic disorder called Pendred’s syndrome. His mother and father were both carriers for the disorder.
Misha had Jakob at a later age than usual. She had two boys already, and both were 14 when Jakob was born. She said she had complications during the pregnancy because of her age, and she knew before the doctors told her that Jakob was deaf.
Right after his first birthday, Jakob received a cochlear implant to restore some of his hearing on one side. He did so well that he got an implant on the other side six or seven months later.
Around the age of 3, he started to change. He refused to wear his implants and began to exhibit behavior associated with autism, like meltdowns and sensory issues. Misha said she knew before the doctors concluded their tests that Jakob had autism.
Being deaf and autistic means a lot of appointments. There are appointments with doctors, therapists and many others. Jakob also attends the Tennessee School for the Deaf in Knoxville. Misha said she spends about five hours a day in the car driving Jakob to his various appointments. People jokingly refer to her as his executive assistant.
Jakob travels to the University of Tennessee once a week for therapy. A couple of times he has run away from his mother and headed straight for the road. Once, some students caught him, and another time he actually went into the road.
“You can’t explain to him that you have to hold my hand because we’re by a busy road and a car can hurt you,” Misha said. “He doesn’t get it. He has no safety awareness.”
For these reasons, the Nicastro family is on a mission. They are trying to raise money for a special kind of dog that will help Jakob.
The family has connected with a nonprofit organization called 4 Paws for Ability, which trains dogs for children with autism. The dog will provide a number of benefits for Jakob.
Because of the autism, Jakob sometimes has meltdowns. When he does this, he is not pitching a fit in the way a normal child would. He simply can’t handle certain things and goes into sensory overload.
He yells, cries, hits, kicks, bangs his head on hard objects or throws things. If he had a service dog, it would be trained to disrupt this behavior. When Jakob would start his behavior, the dog would nudge, kiss, snuggle or apply deep pressure, which will decrease his anxiety and increase his social interactions.
If Jakob gets out of the house — and Misha said they have woken up a few times and he has been outside without them knowing — a service dog would alert the parents that he was outside.
Jakob would also not be able to run away from his mother anymore because the dog would be tethered to him when in public. This would prevent Jakob from running into the road.
A service dog like this costs 4 Paws for Ability $22,000 to train and place the dog with the family. While some of this cost is already taken care of through the service, the Nicastros still have to raise $13,000 on their own.
The family has already raised $2,000. Any money that is donated goes directly to 4 Paws for Ability and doesn’t go to the family.
Donations can be mailed or made online. If you wish to donate by mail, make checks payable to 4 Paws for Ability and mail the check to 253 Dayton Ave., Xenia, Ohio 45385. If you wish to give online, go to www.firstgiving.com/fundraiser/JakobNicastro/4jake. You can also keep up with Jake’s progress through the website and leave notes of encouragement for the family.