MERIDEN – Jason Blazejowski held his five-year-old son like rocket ship, spinning him around shouting “One ... Two ... Three ... Blastoff!”
It’s one of the methods he uses to get Jason Jr. to stop crying and distract him from the uncomfortable muscle stiffness caused by his cerebral palsy.
“He doesn’t really get to play around like normal kids,” said Blazejowski, who likes to mock roughhouse with his son so that he can experience playing like other boys his age.
At 45 pounds, Jason Jr. is not hard to tote around, but this will not always be the case. For this reason Blazejowski has started a online fund-raiser to raise money to buy a handicapped-accessible van for his son, which is not provided by insurance. He has already raised more than $1,500 with the help of the crowdfunding website, GoFundMe.com.
Although Blazejowski, a single parent with sole custody of his son, receives support from the state’s HUSKY health care program, according to David Dearborn, spokesman for Department of Social Services, a wheelchair-accessible van is not covered under the plan.
State Rep. Cathy Abercrombie, D-Meriden, said the Department of Social Services “currently does not supply vans for individuals with disabilities nor do they retrofit vehicles for individuals with disabilities.”
Abercrombie is co-chair of the Human Services Committee, which has oversight of DSS as well as the Office of Protection and Advocacy for Persons with Disabilities. Abercrombie said that, while some adults can receive funding for the necessary accessories to make a van handicapped accessible for work-related purposes, it is not a service available for the Blazejowskis because Jason Jr. is a child.
Blazejowski has to disassemble his son’s carrier in order to fit the base in the trunk, the other part in the front seat and Jason Jr. in the back seat of his two-door cavalier. That can be difficult, Blazejowski said, but “it’s going to be even harder when he grows more.”
Dr. Toni Pearson, a pediatric neurologist and assistant professor of neurology at Mount Sinai School of Medicine in New York, said cerebral palsy is a general term used to describe a range of different diagnoses relating to non-progressive brain injury.
Meriden neurologist Dr. Hamid Sami said cerebral palsy is a non-progressive brain disorder that can occur during pregnancy, childbirth or up to the age of three. Symptoms include difficulty with communication, spasticity in the arms and legs, cognition problems, seizures and epilepsy.
According to Sami, “if you have significant problems with mobility it’s a medical necessity to have adjusted vehicles.”
Pearson said that, once it becomes a physical struggle for the caregiver to lift the person, a handicapped-accessible vehicle becomes a necessity.
“It would save me in lifting, that’s for sure,” said Blazejowski.
Blazejowski said Jason Jr. suffers from spastic cerebral palsy, meaning that his range of motion is limited and he has little control over his muscles. He cannot walk and is completely dependent on others to get around. He spends much of his time strapped into a special chair, which keeps him in an upright and more comfortable position. Blazejowski said that most of the doctors he has consulted have said Jason Jr. will likely need a wheelchair for life.
Frequently, Jason Jr.’s legs will tense up and he will begin to cry loudly.
“I feel like whenever he stiffens up like he’s in pain,” said Blazejowski. “Every muscle in his body just stiffens and I don’t know what to do.”
Pearson said patients with cerebral palsy sometimes experience discomfort from being in the same position for a long time. Other times, their posture “is a kind of visible reaction in response to whatever is making them upset.”
In order to manage Jason Jr.’s muscular discomfort, Blazejowski gives him up to 50 mg a day of Balcofen, a muscle relaxant. “It helps a lot,” said Blazejowski.
However, a side effect of the medication is restlessness. Blazejowski says that when he isn’t working nights at his security job, he sometimes doesn’t sleep because Jason Jr. will wake up in the middle of the night screaming.
Crying is one of the only ways Jason Jr. is able to communicate. “He can’t really talk, he can’t say sentences, he can’t tell me what’s bothering him,” said Blazejowski, who resorts to rattling off a list of questions to try to determine if what his son wants is food, a drink, a car ride or a diaper change.
“It gets frustrating at times. Sometimes I have to walk away and then walk back and do what I got to do,”Blazejowski said, “but that’s just part of being a parent.”
Despite the sometimes difficult job of caring for Jason Jr., Blazejowski said his son is the light of his life. When Blazejowski is having a rough day, all Jason Jr. has to do is crack a smile to turn it around. “I love him to death and I just want to do as much as I can for him,” Blazejowski said.
The Blazejowskis reside in the home of Cynthia Cole, owner of Cindy’s Cafe on West Main Street. Cole said the two will often come into the diner for free pancakes when money is tight. She said Jason Jr. “is a lot to handle and (Blazejowski) doesn’t have a lot of help.”
Cole said Blazejowksi is “a wonderful person and I want to see him get any kind of help he can get for his son,” adding, “he deserves it.”
Abercrombie said she gives Blazejowski credit “for not standing still and understanding how important this is for his child to be able to be mobile,” calling his efforts “fabulous.”
Those wishing to contribute to Blazejowski’s cause can do so through the website at http://www.gofundme.com/2jtv1k.
Jason Jr. was born in 2009 on Valentine’s Day. With a chuckle Blazejowski said this gives him a lifetime exemption from the holiday. He gave his son a tap on the arm and said “just me and you, right?”