More Q&A with Professor Iona Novak

Fri 21 Jan 2022

Question: What would be your intervention for a family who only focuses on functional goals for their child that might not be met? 

Iona's Answer: There are a number of important steps to take in this scenario:  

(i) validating this family’s hopes and dreams for their child, as these are natural parental aspirations. Having a child with cerebral palsy is stressful.

(ii) asking the family compassionately if they can identify what skill they think their child might learn next, and frame their answer as the next short-term goal that could be worked on.
(iii) asking the family what they understand so far about their child’s prognosis.
(iv) providing evidence-based, prognostic information in a compassionate way, framed around the importance of working together to protect and foster your child’s personhood and identity.

Ask questions such as: What are your child’s interests that we can foster? How can we ensure your child is fully included? How do we strike a balance between wanting to help and your child feeling accepting for who they are? 

For more, check out our YouTube Channel for our full conversation with Professor Novak. 

Tue 16 Jul 2024

By Kim Greene Season of Confirmation With his affirmative comment and now wondering if indeed I had a neurological issue, I googled what I knew about my history. I knew that I had been adopted and born eight weeks early and had to be kept in the hospital until I was stable and weighed more […]

Wed 10 Jul 2024

A green background with black rectangle across the bottom. In the left are the colors of the disability pride flag to the right white text reads "Hosted by" the the CPARF and CVI logos. Above, text in dark grey reads: CP & CVI Now: A Community Discussion followed by July 25, 2024 from 5:30-6:30 pm ET.

Cerebral Palsy Alliance Research Foundation (CPARF) and CVI Now (part of the CVI Center at Perkins School for the Blind) are hosting a joint event on Thursday, July 25 from 5:30 pm to 6:30 pm ET. Launching CPARF’s new “CP &…” series, the event will dive deep into the connections between cerebral palsy (CP) and […]