Tips to care for your child with extra medical or behavioral needs

Lately when I ask my son to make a choice or do anything he considers difficult, he says, “Bus number twenty three.  Number twenty three.  Bus number seventy nine.  Number seventy nine.”

He memorized not only the words but the exact cadence of how buses are announced at his school and recites this script instead of screaming.  If you know David, this avoidance tactic is creative, a little annoying, and downright funny.  In fact, now when I ask my husband to unplug his guitar amplifier, change a poopy diaper or turn his music down, he responds, “Bus number twenty three.  Number twenty three.”

Finding someone who appreciates David’s idiosyncrasies is challenging and retaining a reliable quality caregiver is next to impossible.

If you have a child with extra medical or behavioral needs and want to work, I suggest the following:

  • Work less if you can afford it especially when your child’s needs are high. I was working as a moonlighting physician when my son was 2 years old.  I could arrange my schedule to accommodate his therapy and subspecialty appointments and various medical tests.  Not exactly a forward step in my career, but I never would have trusted a nanny with such important matters.    According to a survey conducted by the Maternal and Child Health Bureau: “A change in employment status is more apt to occur in families who have a child who is more severely affected by his or her condition. The parents of 47 percent of children whose activities are affected usually, always, or a great deal by their conditions report cutting back on work or stopping work completely to care for their children.”  The higher the needs of the child, the more likely the family is to suffer financial hardship especially if they are uninsured.
  • Ask family or friends for help even if all they feel comfortable doing is holding down the fort while your child is asleep. Everyday errands will be more feasible if you can leave your child at home.
  • Find a nanny, sitter, or neighbor who is willing to do some extra training prior to watching your child.  Interview candidates preferably with your child.  David brings out the best and worst in people.  Their immediate reactions easily forecast their comfort level and skill.  After a little practice, I could pick out the rare and divine super human combination of kindness, openness and dedication.  If your child is in school, the teachers or aids might offer to help instruct a potential caregiver.  I paid folks while they trained at the school or learned about David from me in my home.
  • Consider asking an educational aid from the school if she might be looking for extra employment.  She could assist with before and after care, on weeekends, or vacations.  Traditional before and after school programs do not provide adequate supervision for most children with significant needs and summer camps are not always inclusive.
  • Advertise at a local college or graduate school because students studying psychology, nursing, speech or occupational therapy might be looking for some real life experience and a little extra money.  They could fill in an hour here or there.
  • Ask the daycare center where your typical children attend if they would trial your special needs child for part of the day.  David attempted my daughter’s daycare for a couple hours on a few occasions, but the teacher despite her best efforts could not redirect him and the children did not know how to engage him.  He retreated to a corner and spun objects or opened and closed doors.
  • Visit a prescribed pediatric extended care center to determine if it is a good fit for your child.  I think of these centers as nursing homes for children.  They are managed by registered nurses with some therapists and teachers on site.  The centers bill medicaid or private insurance directly for their services.  The center in my locale is owned by a large for profit home health care company.  It provides before and after school care, full daycare and sometimes transportation.  Children who attend have complex medical problems and may have significant cognitive impairment.  When I explored this possibility for my young autistic son, insurance refused to pay because he did not have enough medical needs to justify the cost of the setting and the staff did not have adequate training to successfully teach him.  If your child’s needs are mainly behavioral, this is not the correct setting.
  • Visit a local daycare that embraces a philosophy of all comers. In my community Redwood, a center that serves children and adults with disabilities as well as typical children, is a wonderful example of how a non-profit with the right mission and dedication can help families.
  • Try your county board of developmental disabilities. While they seldom provide services, they can give you tips on how to find someone and may provide funding.

Be prepared to look a lot and often.  Be realistic and ready to shift your priorities as your child’s needs evolve.

And if none of that works and your outraged at the injustice of the system, try this relaxing chant:

Bus number twenty three.  Number twenty three.  Bus number seventy nine …

“dr_som” is a pediatrician who blogs at Pensive Pediatrician.

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