Parenting a Child with Unique Needs… A Special Journey

“I have learned, and grown, more since Dylan’s birth than any other time in my life.  You learn patience, and you get to witness miracles that you otherwise would have been too busy to have noticed… You learn acceptance, you realize you have been wrong to judge, and you learn that there is a thing call unconditional love” (Hickman, 2000). These are words of a mother whose child was born with spina bifida and other disabilities.  The birth of a child with a disability can have profound effects on parents’ personal and parenting experiences.  Parenting a child with unique needs presents an unplanned journey that begins with a mix of emotions, some very intense and overwhelming.  And yet, the majority of parents in this situation are able to find the stability and strength to adapt to living with and caring for a child with unique needs.  In today’s blog we will discuss the most recent research trends in the prevalence of developmental disabilities in US children, explore the GGK tools and resources to support parents in coping with their emotions around their child’s developmental challenges and needs, and we will conclude with a few tips you can use during home visits to support parents in making their journey more manageable.

In 2011, The Centers for Disease Control and Prevention (CDC), in collaboration with the Health Resources and Services Administration (HRSA) published a new study revealing that 1 in 6 children in the US had at least one of the following conditions: attention deficit hyperactivity disorder, autism, blindness, cerebral palsy, moderate to profound hearing loss, intellectual disability, learning disorders, seizures, stuttering/stammering, and other developmental delays. The study also revealed that developmental disability has increased by 17.1% from 1997 to 2008.

Developmental Disabilities include a diverse group of severe chronic conditions that are due to mental and/or physical impairments. Children with special needs may present a broad range of challenges that can range from food allergies to terminal illnesses. Developmental disabilities can limit major life activities including language, mobility, learning, self-help, and independent living (Boyle, et al., 2011). Most of us have known a child with unique needs, either as parents, siblings, extended family members, friends, neighbors, or in our role as professionals.  If so, you have likely also seen the strength and the astounding personal growth this experience can stimulate in families.

Let’s explore some of the Growing Great Kids Curriculum’s tools and resources around this topic.  The Growing Great Families component includes a whole module on this area – Unique Needs: Being A Parent of a Child with Special Needs. This conversation guide incorporates three main topics to support the following:

  • Feelings Typical to Parents of Children with Unique Needs – to normalize the prevalence of children with unique needs, explore feelings typical to parents of children with special needs, and support parents in coping with their emotional responses to their children’s developmental challenges and needs
  • What I Love About My Child – to focus parents on the strengths of their child with unique needs, and to build parents’ self-esteem by acknowledging their love for their child and the care/developmental support they are providing
  • Parenting Support for When a Child Has Unique Needs – to explore GGK curriculum tools such as GGK Child Development Activities, GGK Daily Do’s, GGK and GGF modules, and to develop a plan for targeted support for the child

This module also includes a couple of parent handouts:

  • Feelings Parent Have…When Their Child Has a Unique Need: to support parents in talking about their feelings and how they have been dealing with them
  • You Are Unique and Absolutely Lovable: to help parents identify the things that they love most about their child and the many strengths and traits they see in their child

Additionally, the Growing Great Families component includes several modules to support parents in building communication and problem-solving skills that will result in parents feeling more empowered and less frustrated. Some of those GGF modules are:

  • Becoming Your Own Personal Coach
  • Problem Talk
  • Communicating Effectively…Another Stress Management Tool
  • The Power of Appreciation
  • Supporting Your Child’s Development
  • Growing Your Support Network: Strengthening Protective Buffers

The GGK/GGF conversation guides offer parents insights into their personal and family assets, support them in building skills for reducing stress, While creating motivation for growth. Remember to partner with parents in identifying the modules that are of interest to them and those that will support the development of parenting skills to meet the unique needs of their child.

Here are a few additional tips and reminders:

  • Assist parents in finding out about local information and early intervention services
  • Help them locate community support groups
  • Recommend they read materials (and literature) written by and for parents of children with special needs – There are plenty online and public libraries usually offer plenty of options at no cost
  • Talk to them about keeping daily/weekly/yearly personal and family routines as normal as possible
  • Remind parents to take care of themselves and to reach out to their lifelines when needed
  • Remind them not to be afraid to show their emotions and to share them with family and friends
  • Remember to use Accentuate the Positive during your interactions with families

Remember that the emotional support you provide to families is essential for recharging their batteries and enabling them to grow with their child during their special journey!

Works Cited

Hickman, L. (2000). Living in my Skin: The Insider’s View of Life with a Special Needs Child (p.211). San Antonio, TX: Communication Skills Builders

Boyle CA, Boulet S, Schieve L, Cohen RA, Blumberg SJ, Yeargin-Allsopp M, Visser S, Kogan MD. (2011). Trends in the Prevalence of Developmental Disabilities in US Children, 1997–2008. Pediatrics. Retrieved http://pediatrics.aappublications.org/content/pediatrics/early/2011/05/19/peds.2010-2989.full.pdf

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