Tess Connolly talks with Deena Dyson, LCSW who is raising a teen with Treacher Collins syndrome (TCS) is a rare genetic disorder characterized by distinctive abnormalities of the head and face. Craniofacial abnormalities tend to involve underdevelopment of the zygomatic complex, cheekbones, jaws, palate and mouth which can lead to breathing and feeding difficulties.

• Deena talks about the initial stresses of having a special needs child with TCS and what she and her husband had to do during those early years; how they reset with the birth of their special needs child, the changes their family had to make and the mindset shifts
• Her view on the movie Wonder and what it meant for her as a parent with a child with TCS
• The importance and value of their family of having a happy home life and that being the priority over everything else
• The advantage of being a parent with a child with special needs and having a different perspective
• The specific challenges of having a special needs child during this phase of adolescence
• Deena talks about some of the “traps” of having a special needs child
• She discusses the importance of having community supports and organizations, such as CCA (Children’s Craniofacial Association: https://ccakids.org/) 
• We talk about the challenges of teaching her daughter independent living skills at this age 

Deena Dyson, LCSW is a Clinical Social Worker, Mother to a teen girl with TCS. You can reach out to Deena on Facebook. 

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