Heather Lanier’s new book details the first few years of her journey raising a special needs child. In the book, Heather weaves together several strands of storytelling. The first strand is her daily life experiences raising Fiona. The second strand is about her family’s spiritual values. The third strand is a series of anecdotes about disability rights history. This approach creates a unique yet universal tale.
If you love prose, you will love this book. As soon as I began reading, it became clear to me that Heather is not only a natural writer, but also an experienced one. Heather doesn’t hold this back from the reader. She tells about teaching college level writing courses before and throughout early parenthood. I highlighted many long passages while reading because of their lyrical beauty.
Many mothers reading this book will resonate with Heather’s experience job hunting as a new mom. She interviews for tenure track positions while breastfeeding and sleep-deprived. Longterm, parenting a special needs child hinders her job prospects. She pulls no punches about this in the book. As readers we know the even longer term outcome. Heather started a blog and got a book deal. Then she published a memoir reviewed by the New York Times as a critical read for expecting mothers. Heather’s writing career changed paths through raising a child with special needs. It didn’t fall away completely.
Parents of children with autism will be able to relate to Heather’s experience in several ways. Her daughter has Wolf-Hirschhorn Syndrome (WHS). WHS is a rare genetic syndrome. It has serious impacts on both physical and cognitive development. WHS is a low-incidence disability and autism is a high-incidence one. But there are still many parallels for parents.
Heather and her husband bring Fiona to a conference for families of children and adults with WHS. The non-uniformity in every attendee with WHS is striking to Heather. They have the same diagnosis as her daughter. But their individual ways of living with WHS are very different. Similarly, children with autism each impart their own way of being onto the world. They are not defined by their diagnosis. Heather’s writing insists on this value throughout the book. The world should embrace children with disabilities as individual humans. It should not categorize them according to characteristics of their condition.
Heather goes into detail about her experience interacting with the outside world. She describes encounters with parents of typically developing children in detail. In each encounter, she realizes again and again how much the other parent cannot relate to her life. Other parents complain about things she desires for her child, like talking too much. She details her unique difficulties breastfeeding. For example, night feedings continue for months longer than is typical due to Fiona’s small size. She notes how other parents complain about night feedings and rejoice when they are over. But they do this without any knowledge about what it is like for parents of children with special needs.
These comparisons on their own would be eye opening enough. But Heather takes it a step further. Included in the book is the story of how her second, typically developing daughter Petra is born. Again, Heather pulls no punches in describing the differences between the two girls. She acknowledges that Petra develops without hours of therapy and medical scares. She doesn’t have to always be working on something to help her development. But she acknowledges something else, too. By the time Petra is born, she has become at home in the world of Fiona’s atypical development. Thus, she is able to also be at home in the world of Petra’s typical development. She doesn’t feel conflicted or torn between the two. Instead, she expresses gratitude at living both experiences in the same household.
Heather’s experience with early intervention services will also be relatable. The same goes for her experience with special education. During the time covered in the book, their family moves from Ohio to Vermont. This is roughly the first five years of Fiona’s life. Heather is honest about the differences in services across the two states. She also goes into detail about differences across individual therapists. Her chapters on obtaining an AAC device are particularly interesting. (Read more about Augmentative and Alternative Communication here.) She describes their weekly speech therapist as cautious. She describes their AAC consultant as much more bold. The consultant helps find a system that unlocks Fiona’s expressive language skills.
Heather also provides a crash course (or review course) in disability rights history. She does this through short examples and quotes woven alongside her personal stories. She also addresses her own privilege as a white parent in a two income household. When Fiona requires more intensive care, Heather is able to stay home for a period of time. (Though she also describes the challenges that come with that role). Heather also addresses ableism in mainstream parenting culture. She names her own ableism and challenges overcoming it.
Some readers may find one aspect of the book surprising. Heather spends a significant amount of time describing her husband’s spiritual life. Her husband is an Episcopal priest who also trained in Zen meditation. She uses this narrative as a vehicle to describe her own inner journey. This journey is specific to coming to terms with parenting a child with special needs. This may be the most unusual aspect of the book. Heather herself seems to have a somewhat ambiguous relationship to faith and religion. Yet, she embraces her husband’s career in the church as an integral part of her family’s story.
The last quarter of the book speeds up a lot in comparison with the first three quarters. The first part focuses on Fiona’s first two years of life in great detail. The last part describes her development and the family’s journey from about age 2 through 5. Some readers may find this a little jarring. But the book is so well written that if anything, readers like myself will wish for more rather than less. I hope Heather publishes a sequel in a few years that does a similar deep dive into her daily life experience. Also, the reader follows Fiona to the point where she starts kindergarten. I was happy Heather included this in the book. If the book had stopped when Fiona turned two, it would leave the reader wanting more.
I loved this book, both as a parent and as a provider. Parents of children with autism will find this a resonant read. Parents of children who are typically developing will find it to be illuminating. I also recommend this book for other educators and therapists. They will find a new avenue for empathy in Heather and her family’s story.
Raising a Rare Girl
By Heather Lanier
320 pp. Penguin Press.
Courtney Gutierrez, M.Ed., BCBA, LBA Courtney is a behavior analyst, educator, and writer in the Pacific Northwest. She has over fifteen years of experience in the field of autism services, and over ten years of master’s level experience in classroom teaching and ABA therapy. Her areas of expertise include infant and toddler development, parent coaching, ABA clinical leadership and training, P-12 special education, and case consultation for children and young adults with autism and other special needs. Courtney lives in Seattle with her husband and two children.