Knowing Jesse, by Marianne Leone

When Marianne Leone and her husband Chris Cooper had their first child, they could not have imagined what the next years of their lives would be like.  Jesse, born 10 weeks early, had cerebral palsy and epilepsy.  He would have very limited ability to speak.  Yet his life was an inspiration to them and many others.  Ms. Leone's memoir is an inspiration to me and other parents of children with special needs.

Leone writes in way that connects the reader to her family.  As she told her family's story, I saw many parallels to my family, and loved the way she put into words what families of children with disabilities experience.  Besides his severe physical limitations, Jesse was, for the most part, nonverbal.  Yet, as any parent of a nonverbal child can tell you, that does not mean he could not communicate.  Leone writes, "Having a nonverbal child means learning to really look and listen.  The rewards of nonverbal communication are as deep and subtle as the song of a whale, as complex and yearning as the trumpet of Miles Davis."

Having a nonverbal child is challenge at home, but turns into a huge obstacle at school.  Many educators don't know what to do with a child who can't speak, often assuming low intellectual ability.  Leone recognized that "even though the light of intelligence burned through Jesse's entire being, a nonverbal child has to prove that he's not an 'idiot' to the world again and again and again."  Early on, she decided that "our son was brilliant and we would raise him that way."

He would eventually prove her right, but she went through many battles with the educational system along the way.  She turned into a forceful advocate for full inclusion, that is, allowing Jesse to participate in school with typical kids in a mainstream classroom.  He ended up thriving, making good friends, and made excellent grades.  As our family has been through a similar fight, including hiring a lawyer to bring pressure to the school district, I was cheering for Leone all the way.  Her efforts not only enhanced Jesse's educational experience, but paved the way for other children to receive similar treatment.

Leone's passion as a parent, as an advocate for her son, and as a hero for her family make Knowing Jesse an inspiring, emotional read.  She and her husband are familiar to movie-goers and TV viewers, but there is no Hollywood facade in this memoir.  They are parents, whose love for their beautiful son is deep, whose hearts for his thriving is inspirational, and whose grace and hope in light of their grief is admirable.  This is a wonderful story, wonderfully told.

(By the way, she reads the audiobook, adding a personal, dramatic dimension to an already terrific book.)