About our family and Apert Syndrome:
This is an article that appeared in the Goshen News on September 18, 2013 that was written about our family’s journey with Sarah: Beyond the Face
Disability Resources for Catholics:
I am a member of the Council on Intellectual Disability for the National Catholic Partnership on Disability. Its mission is to “affirm the dignity of every person, the National Catholic Partnership on Disability (NCPD) works collaboratively to ensure meaningful participation of people with disabilities in all aspects of the life of the Church and society.” Click here to visit their website.
Helpful websites related to craniofacial conditions:
Here is a non-profit organization called Children’s Craniofacial Association which assisted us with travel expenses for Sarah’s CVR surgery; they also sent a care package for both Sarah and Felicity. Please support them in any way you can!
Here is Riley Hospital’s Craniofacial Department Website. They have been absolutely superb in assisting us and in Sarah’s treatment, care and follow-ups. We intend to support them further and hope you will, too!
We recently heard about a non-profit organization called Heads Up!!!, which is located in southern Indiana and directly serves Riley Hospital’s Craniofacial Department as a fundraiser for them. Check them out.
This is an organization that actually fully funds surgeries for those with craniofacial anomalies, depending upon qualifications. They are called Fresh Start, so please check it out and refer someone you know who may be eligible and benefit from their charity.
Zofran Legal aims to reach as many people as possible who are seeking information relating to craniofacial conditions and provide education and quick access to further information on the topic.
Because Sarah has a complex genetic condition that affects her brain functioning, as well as her development, sleep hygiene is really important to our family. She has a diagnosis of ADHD, as well as an intellectual disability, which impairs her behavior during the day and causes sleep disruption at night. Here is an excellent resource for people with disabilities on how to manage their sleep hygiene.
Websites for Disability Resources in general:
Parents of kids with disabilities know how tough it is to make the right decisions about their eventual independence and transition into adulthood, especially concerning finances, legal care, and housing. Here are a few helpful websites addressing these topics:
Other blogs by Apert moms
Joyful Catholic Mom
Meet Beth Hersom, mom of Sarah (another Sarah!) who was born with Apert Syndrome. Hersom blogs here about her life and journey, but she also posts poignant and cathartic blogs about navigating the depression and overwhelming grief that grips all of us who are caregivers in the midst of crisis. Hersom is warm and her writing very approachable.
More Skees Please
Taryn Skees is a stay-at-home mom to four beautiful boys. Her second oldest, Aiden, was born with Apert Syndrome. Taryn is a cheerful, amicable, and approachable blogger whose style is a conglomerate of fresh, contemporary writing about the joys and challenges of parenthood. Skees is one of the first Apert moms I approached after Sarah was born, and she is an incredibly helpful and compassionate person. She also started the non-profit Apert O.W.L., which is a resource for families and kids who have Apert Syndrome. She blogs here.
The Bright Side
Mary Donatelli is a west coast mom to Bennett, a toddler who was born with Apert Syndrome. Her blog is fun, fresh, and friendly. She writes mostly about their family’s journey with Bennett (whose nickname is “B”) in detail that will be helpful to new Apert families. She blogs here.
I Am Not A Syndrome – My Name is Simon by Sheryl Crosier – A memoir about the Crosier family’s journey with their sweet son, Simon, who was born with Trisomy 18 and lived only a few short months.
Uncommon Beauty: Crisis Parenting from Day One by Margaret Meder – Meder’s son was born with Apert syndrome. She writes the book with some excerpts from her journal, but the crux of it is practical advice for parents and families on how to get through the daily crises that arise from raising a child with a rare disease. Excellent resource.
Overcomer: Discovering God’s Purpose Against All Odds by Dorsey Ross – Christian memoir of a grown man on what it has been like living with Apert syndrome. Helpful for families starting on the journey.
Finding Matthew: A Child with Brain Damage, A Young Man with Mental Illness, a Son and Brother with Extraordinary Spirit by Donna Kirk – Memoir of a mother whose son, Matthew, lived with several diagnoses that impacted his daily life but never dampered his spirit. Encouraging for those who feel overwhelmed as caregivers.
Life Not Typical: How Special Needs Parenting Changed My Faith and My Song by Jennifer Shaw – Christian musician and mom of a son with Sensory Processing Disorder Jennifer Shaw writes a memoir about how she discovered her son’s diagnosis and the wonderful therapists who helped him grow.
My Life Story with Apert Syndrome in My Own Words by Christine Clinton – Another memoir by an adult with Apert syndrome. Christine Clinton relays the social, emotional, and physical impact her disability had on her growing up but with positivity and honesty. The first book I read after Sarah’s diagnosis!
The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Kranowitz – Practical resource for parents, educators, and therapists who want to understand the physiological workings of how the brain operates to process sensory information, especially when it goes awry. Kranowitz explains in laymen’s terms how to both understand and help the child grow while living with SPD.