Parents of children with special needs have a unique challenge with regard to determining their children’s need for urgent care to alleviate pain. Often, due to developmental delays in expressive and receptive speech, a child may be unable to tell his mom or dad that he is in pain. Even if a child has the ability to express herself verbally, she may not be able to accurately identify the part of her body that is hurting if she does not have an accurate mental image of her body.
While “neurotypical” children intuitively understand their own bodies, how they move in space, and the sensory link between actual body parts and their corresponding mental representations, this is not always the case for children with special needs. Children with physical and developmental disabilities may lack this ability, and may need therapeutic interventions to acquire these skills. It may take years of such intervention before a child with special needs is able to “tell” a parent through words or actions how he is hurting.
In the interim, parents must practice “precision parenting” as best they can to identify and respond to any disabling pain that may impair a child’s quality of life and signal the presence of serious medical problems which need to be addressed.
PAIN ALLEVIATION BEST PRACTICES
Your Child’s “Normal” – Know It (Priority #1): Stephen Covey’s directive to, “Seek first to understand, then to be understood,” is good advice for the parents of children with special needs who often must overcome major communication challenges to get a true sense for their children’s relative well-being at any given moment. To this end, parents must pay close attention to a child’s “everyday” profile, and become intimately familiar with it. This is what will best enable them to quickly identify and respond to changes in baseline temperament, physiology, behavior and reactions to environmental stimuli. The more the parent knows the child, the easier it will be for him or her to figure out whether that the child is experiencing real physical distress.
Priority #2 – Identify Medical Problems Linked to Your Child’s Special Needs: When children have a variety of special needs, it can become easy to attribute unusual or unexpected actions/reactions to “behavioral” issues or developmental delays. In fact, several types of special needs (even those considered to be mainly developmental in nature) are known to be linked to certain physiological challenges that may only become evident to a parent over time. In focusing on the more urgent diagnostic priorities, medical practitioners may not think to alert parents to related medical issues associated with the primary diagnosis. For example, children with autism and ADD/ADHD often experience a wide range of gastrointestinal problems caused by extreme constipation, food sensitivities, “leaky gut,” and other factors that may cause pain and require extensive treatment. Parents should query the medical providers who work with their children to find out what types of physiological conditions are most closely associated with the special needs which their children have.
Priority #3 – Rule Out Physical Pain and Abnormality as Triggers of the “Unusual:” Changes from baseline which may be signs of potential pain include increased anxiety, irritability, crying, whining, inconsolability, or tantrum frequency. Other symptoms are increased hyperactivity, increased impulsivity, excessive grimacing or straining during bowel movements, increased aversion to eating, bowel movements, or other activities which are usually well tolerated. Before medicating the child for anxiety or attempting behavioral therapies to fix the perceived problem, parents should pause to consider whether there is a physiological basis for the child’s “unusual” actions and reactions.
Priority #4 – Take High Pain Thresholds and Counterintuitive Pain Signals Seriously: Parents must be particularly alert to the fact that when children whom they perceive as having relatively high pain thresholds indicate that they have pain, that may be a signal that the underlying physical cause may have advanced to a more urgent state before the child’s discomfort became apparent to the adult, making medical care a more time-sensitive priority.
Counterintuitive pain signals may include unusually high expressive language use as compared to baseline usage. Both positive and negative factors (such as intense physical pain) can create emotional intensity for a child which may enable him to perform tasks at a developmental level that is above his baseline. For example, if a child who pragmatic language challenges usually preclude his making conversational observations says, “I think I need to go to the dentist,” in a grave tone, the parent needs to take such a statement very seriously, probe further, and have the child evaluated by the appropriate medical professional.
Priority #5 – Check the Wheel That Doesn’t “Squeak:” Financial and time constraints may cause many parents to triage their efforts to meet their children’s treatment needs. And, parents often have a myriad of nutritional supplements, medications, therapies and other interventions prescribed by medical professionals which they must manage and coordinate. So, it’s understandable that a parent may not think to routinely check those body systems which appear to be working properly as they prioritize the “squeaky wheels” in a child’s developmental and physiological profile.
However, just because a “wheel” isn’t “squeaking” doesn’t mean that it’s problem-free. Vision and hearing are just two examples of body functions which need routine examination to identify medical problems. Changes in a child’s pattern of responding to visual and auditory input may not just be a sign of processing problems, but also of physiological developments that warrant attention. And while vision and hearing problems may be less associated with physical pain, long-standing gastrointestinal problems may actually be causing a child pain that she does not realize is abnormal because she’s always had it, making a routine review of body functions a crucial step in pre-empting and alleviating pain.
Dental Pain – Avoid Need for “Emergency” Care (Priority #6): Routine dental care is also very important. A child’s regimen of nutritional supplements may require the use of honey or other sweeteners that increases the likelihood of tooth decay. Likewise, parents must be careful to have a child’s teeth examined and cleaned regularly if he is frequently ingesting supplements such as Pediasure to ensure that no tooth decay develops. Tooth decay in baby teeth progresses rapidly and can quickly reach the nerve, causing significant pain that adults can barely tolerate, much less children with special needs who may have the added distress of not being able to articulate their need for pain relief.
After diligently addressing a child’s many other medical needs, a parent’s discovery of deep cavities that cause require root canals and crowns can really be shocking and demoralizing. This can be particularly true when he considers how much dental pain the child has had to endure. What can be even more distressing is the fact that a child whose special needs require that dental procedures be performed under general anesthesia and/or in a hospital may have to wait for weeks before getting pain-alleviating treatment. This is because the dental problems of children who require hospital-based procedures do not constitute “emergencies” unless the dental problem presents a major risk of infection in the short term.
RESOURCES FOR RECOGNIZING PAIN AND RESOLVING IT
“Unusual” Symptom Recognition – Reference Books: A great guide for identifying symptoms of physiological problems that manifest as behavioral, developmental, or “unusual” in some way is the book, “What’s Eating Your Child,” by Kelly Dorfman http://whatseatingyourchild.com/ . The book contains information on a variety of physiological ailments that present themselves in ways that may seem atypical.
Another great reference tool that includes helpful real-life examples and simple explanations of complex problems is “The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet” http://www.amazon.com/The-Kid-Friendly-ADHD-Autism-Cookbook/dp/1592332234 . This is another excellent tool for identifying symptoms of medical conditions which may be causing a child gastrointestinal pain and other pain that manifests in “unusual” ways.
Functional Medical Evaluations: An evaluation by a pediatric medical doctor who practices functional medicine would be another good starting point for identifying pain-causing physiological problems. Dr. Pamela Compart http://www.heartlighthealingarts.com/compart.htm and Dr. Richard Layton http://www.allergyconnection.com/ are great local resources who see patients from Maryland, Washington, DC and Virginia. They are both familiar with a broad range of physiological and developmental special needs. Dr. Compart is a developmental pediatrician, and Dr. Layton is an allergist. While their specialties differ, they are experienced practitioners of functional medicine, i.e., the practice of identifying biomedical deficiencies and excesses which can cause illness and dysfunction that manifest physiologically and behaviorally. Dr. Compart is also the co-author (along with local nutritionist Dana Laake) of “The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet”
Dentists Who Perform Hospital-Based Procedures Under Anesthesia: It’s a good idea to develop a relationship with a dental practice which has hospital privileges before your child needs a hospital visit. Children’s National Medical Center in Washington, DC, does perform dental procedures http://www.childrensnational.org/departmentsandprograms/default.aspx?Id=385&Type=Dept&Name=Dentistry . The wait time can be long for any procedure requiring general anesthesia which is not considered a true emergency. And a child’s level of pain is not considered in determining whether a dental problem is a true emergency. CNMC does, however, accept patients who have special needs and are fourteen years old or younger for routine dental work.
The practice of Dr. Robert Camps http://www.funsmiles.com/ offers a more time-sensitive alternative for the special needs patient. Because the practice has approximately five dentists who perform surgery on a regular basis at Shady Grove Hospital, the practice can be much more responsive to urgent pain issues. The practice accepts pediatric patients who have special needs: parents should be sure to mention the need for any special accommodations, e.g., private examination room, when scheduling appointments.
Parent Support Groups: It’s impossible to practice the “precision parenting” that the special needs child requires without making mistakes from time to time. To discover belatedly that your child has been experiencing pain for years due to some previously unidentified condition that seems to have been obvious in hindsight can shake a parent’s confidence in his ability to meet and anticipate his child’s needs. That’s why it’s important for parents to participate in formal and informal networks of other parents with whom they can share information, successes, failures and lessons learned. The “waiting room” network can be an invaluable resource for parents who want to identify and connect to the various support systems which would be most helpful to them. Parents should not hesitate to reach out and ask other parents for help.