Special Children, Special Parents Part 1

Posted on 02/05/11 by erynwicker

 What defines a “special needs” child? Perhaps the better question and answer is “What makes a child special…their needs.” Of course all children have universal needs, but some also have a set of unique and challenging ones, and these ‘special’ needs often require special parenting skills. 

First off though I think we need to clarify what constitutes ‘special needs’. This, I think for most people, will require a broadening of their definition. According to the Ministry of Children and Family Development, the term “children and youth with special needs refers to those children and youth up to 19 years of age who require significant additional educational, medical/health and social/environmental support — beyond that required by children in general — to enhance or improve their health, development, learning, quality of life, participation and community inclusion”. Another way to look at it is to think of ‘special needs’ as an umbrella underneath which a staggering array of diagnoses and conditions can fall. These can be further divided into the following categories: medical, behavioural, developmental, learning, and mental health.

Let me briefly expand upon each of these to give you a sense of the breadth and range of their scope.

  • Medical Issues for children include serious conditions like cancer and heart defects, muscular dystrophy and cystic fibrosis; chronic conditions like asthma and diabetes; congenital conditions like cerebral palsy and dwarfism; and health threats like food allergies and obesity.
  • Behaviour Issues like ADHD, Fetal Alcohol Spectrum Disorder, Dysfunction of Sensory Integration, and Tourette Syndrome require specialized strategies that are tailored to a child’s specific abilities and disabilities.
  • Developmental Disabilities like autism, Down syndrome and mental retardation can create difficulties in caring for and educating a child, and may cause them to be removed from the mainstream.
  • Learning Disabilities such as dyslexia and Central Auditory Processing Disorder find children with these struggling with schoolwork regardless of their intellectual abilities.
  • Mental Health Issues can range from occasional panic attacks to bouts of depressions to serious psychiatric problems around mood disturbances, personality disorders, and psychosis.

But is a label or diagnosis important in the first place? Yes, a designation can be useful for things such as: getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family. But obviously each family has to decide for themselves.

Now, pick any two families with children who fall into one of the above designations and it might seem as though they have little in common. A family dealing with developmental delays will have different concerns than the one dealing with chronic illness, which will have different concerns than one dealing with mental illness or learning problems or behavioural challenges. Independent of their unique situation, there are some common concerns that link parents of challenged kids, including getting appropriate care and accommodations; promoting acceptance in the extended family, school and community; planning for an uncertain future; and adjusting routines and expectations. Potential hospital stays, numerous tests and assessments, expensive medication and/or equipment, difficult decisions regarding treatment options, and managing interpersonal relationships with the professionals on your team are just a few more of the realities these families may face.

So without a doubt not only do these families require a special skill set to help them forge ahead into unknown territory but they then become advice givers in their own right as people who have come through the tunnel and into the light. Stay tuned for next week’s article where I will highlight some of the qualities that these families need to help increase their coping capacity, as well as sharing some of the lessons they have learned along the way.

I will leave you to ponder this quote and I encourage all of you to decide whether you want to live according to the former or the latter: “There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle” (Albert Einstein).