What I’ve Learned as a Pediatric Developmental Disability Nurse

• Working as a developmental disability nurse is not for the faint of heart. 
• There are great days, but like any nursing specialty, there can also be not-so-good ones. 
• These nurses can work in either an in-home care or clinical setting. Think you have what it takes? Check out what I have learned over the course of my 25 years in the field!

As a pediatric nurse who has worked in residential facilities as well as in-home care, I have had the privilege of being able to work closely with pediatric patients with developmental disabilities. 

The children in these healthcare settings can range in age anywhere from infants all the way up through early adulthood.  

Some were born prematurely and will grow and thrive, adequately developing and eventually graduating from nursing after meeting milestones. Others will become dependent and require full care throughout the continuum of life due to chronic issues.  

Sadly, some children enter hospice and pass away at a very young age, either unexpectedly from complications related to their diagnoses, a terminal condition, or an accident with subsequent complications resulting in a change in status.  

As I meet people in the context of my day-to-day life as a developmental disability nurse in pediatrics, they often ponder how I could possibly be a nurse in long-term care for children with special needs, as to them, at face value, it sounds quite sad.  

I always smile and tell them that it is truly quite the contrary.  

Pediatrics with Developmental Delays: What I’ve Learned

As a pediatric nurse to those with special needs, there is so much to learn beyond a child who requires nursing care.  

I remind myself often that children do not read the medical manuals. They do not follow timelines, stress like adults do about ‘time left’ and in some cases, long outlive their lifespans. 

They live for each day and do not worry about tomorrow. 

Children with developmental delays, significant seizure activities, cancers, tracheostomies, central lines or feeding tubes who are thriving and can live safely, attend school with nurses who are competent in their care needs, and not just survive, but have an amazing quality of life.  

Over the course of my career, I have learned so much from this profession; more than I could ever begin to share in one blog.  

Here are just a few!

Teamwork Makes the Dream Work

Pediatric developmental disorder nurses work alongside therapists and many other specialties, in both in-home care and long-term facilities, including occupational (OT), physical (PT), and speech therapists (ST).  

These therapists provide direction related to each client’s needs such as mobility, range of motion, eating and swallowing, and communication modalities as well as any restrictions that a client may have.  

Nursing works in tandem with therapy, as ordered, to determine and provide what a child best needs to help maintain their ability to move, participate and communicate.  

Of course, those on the healthcare team also try to make these sessions as interactive and enjoyable for the child as possible (for example, using fun-colored themed cups with specialized straws for drinking, playing with scented playdoh, blowing bubbles, using adaptive bikes and gait trainers to develop ambulation skills, etc.).  

Teamwork in facilities, between the medical doctor, CRNP’s, and the nursing/nursing aide team is integral to providing the best care at baseline and being able to emergency intervene with a sudden and detrimental change in status requiring life-sustaining intervention. 

There Will Be Days That Are Harder Than Others

Working in a pediatric long term care facility can be very demanding, however, it is also just as rewarding as well.  

From my own personal work experience, I have worked with my patients who needed intensive care.  

I have seen babies struggle with stimulation and touch as well as being unable to self-soothe when upset. On top of this, they often had many and frequent nursing order changes to their plan of care as well as necessitating a higher level of acuity when ill.  

Others, have had issues beyond extreme prematurity, including issues with birth/health status due to maternal drug use as well as lack of prenatal care, so these infants were very compromised while withdrawing and weaning off medications (including inconsolable irritability as well as fighting the ventilator).  

Although these patients have had medical needs since birth, not all of our patients are this way. 

Failed suicide attempts, shootings, car accidents, abuse, and lack of adult supervision leading to a substantial injury, a pediatric developmental disability nurse will see it all; and it can be emotionally tolling. 

Many of these children had an abrupt change in status and often had neurological devastation that led to brain injuries and subsequent dependence on enteral feedings and mechanical ventilation.  

Pediatric facility nursing can be challenging as children can compensate status-wise for a short time and then really deteriorate quickly. 

Pediatric facilities may also be a transitional place, where children with medical needs are placed, while caregivers are able to spend time learning more about necessities including care needs such as adaptive equipment, transfers, medication administration, feedings, tracheostomy/ventilator care, and emergency procedures from nursing and respiratory care staff, therapists, etc. before bringing the child home. 

It Takes Nursing Skill

In-home care for a pediatric developmental disability nurse prior nursing experience and skill.  

In my experience the nurse-to-patient ratio is usually 1:1.  

The nurse may have a pediatric client who has basic care needs, for example enteral feeding, respiratory treatments, or diabetes.  

Of course, these children cannot stay home with a babysitter, non-competent layperson nor a sibling due to their diagnoses and medical needs.  

Skilled nursing is often authorized for specific times, days and needs via insurance (often for school, daycare or to cover parent’s work or sleep needs).  

Skilled in-home nursing care is generally for pediatric clients who are unable to provide care for themselves and whose needs might require emergency intervention.  

An example of this might be a client who has grand mal seizures which cause him or her to become apneic and need emergency medication administration and vital sign/cognitive status monitoring post-ictal.  

Other clients may be more compromised and less responsive. If they are strictly dependent upon invasive ventilation or have a central line for infusions, they will need a more skilled in-home nurse.  

Empowerment and Education are Key

For nurses, primary caregivers play a large part in pediatric healthcare.  

Not only is the care directed toward the client, but a lot of education is also focused on the caregiver’s ability to learn and care for the client when a nursing team is not present; these might be biological, adopted, or foster parents, grandparents, siblings, appointed guardians, etc.   

It is up to the healthcare facility and its employees to empower and provide thorough education to caregivers prior to a pediatric patient’s discharge.  

Empowering the family to feel knowledgeable and confident in their ability to care for their child is one of the many responsibilities of the pediatric developmental disability nurse in the in-home care setting as well as the rest of the healthcare team.  

It is normal for caregivers to be scared or upset, and there may be learning barriers that will make it difficult for them to understand; it can take creativity and ingenuity to find ways to reach them.  

In my experience, having nervous caregivers practice techniques (such as feeding tube or breathing tube changes) on modified baby dolls first can be beneficial.

Self-Awareness is Essential

If a client can help themselves in any way, perhaps giving them some independence or a small part in the care process can help to alleviate some fear and loss of control that they might be struggling with. 

No matter at what level my pediatric client is functioning, I always talk to them and explain everything I am doing. I make sure to let them know if I am repositioning them, giving them an injection, transferring them, or doing anything that I myself would want to know or be told if I was in their position.  

Some of our pediatric clients have been long-term with an in-home care agency and have had the same pediatric developmental disability nurses working with them for years. Others have short-term care plans for one reason or another; some might be for good, or for worse. 

Regardless of their care duration, a nurse in this field should always put themselves in their patient’s shoes. 

The Bottom Line

Wondering if a career as a pediatric developmental disability nurse is the right choice?  

I might be a little biased, but I highly recommend and absolutely love working with this population of pediatric patients in both in-home care and the facility environments.  

As a young nurse who started out over 25 years ago seeking a job in geriatrics and falling unexpectedly into long-term pediatrics, I couldn’t be happier that I did.

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