Girl with special needsEvery pregnancy has risks, and in all our visits to the obstetrician, in birthing classes, and on the labels of every medication, there are warnings about side effects that can harm you or your baby.  Yet, despite all the safety precautions we may take, some things are simply out of our control.

This week’s post is from my interview with Janice, a Philadelphia mother who went to a “Mommy and Me” exercise class with her first born child, only to find that her beautiful and alert little girl couldn’t do what the other babies were doing.  The instructor and other moms told her not to worry; after all, the baby development charts are “guides” not edicts.  But Janice wasn’t sure.  Her baby tended to clench one fist and use her other hand.  That was definitely not in her baby books.

At her baby’s 9-month well baby visit, Janice said she needed to know if something was really wrong. The pediatrician agreed that the baby’s developmental delays were a concern and a trip to the Children’s Hospital of Philadelphia for an MRI revealed a little excess fluid around the brain.   A finding was made but what did it mean?

It turned out the fluid wasn’t related to anything, but a visit to a developmental pediatrician revealed that Janice’s baby sustained a brain injury at 26 weeks gestation.  This gave them a diagnosis—congenital cerebral palsy.

Janice and her husband were reassured there was nothing that could have been done to prevent this injury.  However, as for that critical projection of what the future would hold for the baby—would she be able to feed herself, walk, be mobile—this is where the answers got vague.

In retrospect, Janice realized all the answers to her questions really couldn’t be predicted at that point in her baby’s infancy.  The answers would be revealed as she grew up.  But Janice did have observations to pass on that would be of value to any mother, whether or not your baby has special needs.

  • Say “Farewell” to your preconceived ideal of your child.  Janice and her husband were very sad for a while.  Then they realized “We are capable.  We have faith.  We have a large supportive family. We have to get in gear.”
  • As soon as you know what you are up against, get help.  Early intervention was an amazing experience for the baby but also for her parents.  They got tons of assessments and therapies to match the assessments.  They had no idea of what could be done to help their daughter, but  an array of therapists in different specialties could break down any task—like eating, for example—so Janice and her husband could teach the baby how to chew and swallow food.
  • Have a high tolerance for ambiguity.  Janice says “You can’t predict where your baby’s going to be—it’s not what you think.”  Until she stops growing, Janice’s little girl will continue to have medical interventions to reinforce her physical strength and ability to walk.  As her education has progressed, Janice’s baby has demonstrated she is a gifted learner, though some schools and some of her peers have not been so “gifted” in their actions toward her.
  • Getting help and the services for special needs children is a job unto itself.  Janice was adamant, “NO ONE will advocate for your child like you.”

Janice took a course for parents at a local university so she could understand the law regarding education for children with disabilities.  Her husband continues to keep pace with research.  They have learned that about 15% of all births have complications.  About 1 in 9 children will require special education services and 1 in 6 will need special health care services.  This is no small number of children (about 9 million).  If your child falls in either category, Janice left me with this admonition:  institutions are there to implement the law; it’s up to you to make sure they help your child.