What Parents of Special Needs Kids Wish You Knew

Karla Zazueta's picture

Hard is hard, period. “We are not competing in the ‘Suffering Olympics,’” seminary professor, author, and mother to a special needs child, Dr. Sandra Glahn, often remarks. What she means is that in terms of trials, hardship, and heartache, we are not in a competition attempting to win the medal of “Life’s Worst Circumstance.” 

But life as a parent of a special needs child is unique. It contains daily nuances, challenges, and worries that are far from normal. 

My husband and I recently adopted our son from China. He has both medical and emotional special needs. I often find it hard to explain why my son needs this or that test, why he is not sleeping (still), why I’m not putting him in church nursery, why I cannot have anyone babysit him, and most of all—why I don’t share his hard moments on social media.

There are things, however, that I wish family and friends just understood. Already exhausted from sleep deprivation and giving all my emotional energy to our son, I often don’t have the additional energy to give measured responses to well-meaning questions that come from sincere hearts.

Thus, with a desire to educate others on the challenges a parent faces with a special needs child, I reached out to friends who have walked this journey for many years. After a seemingly landslide of responses from both biological and adoptive parents, the following is the wisdom gleaned regarding what a parent of a special needs child wishes their friends and family knew.

1. Please do not assume. Ask me questions and do not assume you know my answers. Questions such as the following are helpful to ask a special needs parent:

  • Can you please tell me what you want me to know about your child?
  • Can you tell me the best way to help him or her?
  • What food is okay to give your child? For many children, eating just one food item that contains dyes, preservatives, gluten, or lactose can cause challenging behaviors for days or weeks.
  • What activities are okay to do with your child?
  • What does your child enjoy? Asking an open-ended question such as this focuses on what the child can do versus what he or she cannot do. (e.g. Why can’t she read? Why can’t he walk? Why doesn't he speak?)
  • May I show physical affection to your child? Newly adopted kids, for example, have to learn who are their primary caregivers (i.e. Mom and Dad) and usually struggle with indiscriminate affection. “Stranger danger” is what adopted parents strive for with their children versus what seems to be outgoing behavior. Outgoing behavior initially means that the child sees every adult (even strangers) as an acceptable caregiver.
  • How are you doing? This is the best and most appreciated question of all. Please ask without problem solving, comparing, minimizing, or judging. Just listen and then listen some more. 

2. Please maintain my child’s privacy. Many of the reasons why my son struggles are related to his medical and adoption history, and those details are private. Although I understand people ask with good intentions, asking private questions makes for an uncomfortable situation. On this issue both adoptive and biological parents stated: 

  • “My child’s stories/needs are his or hers to share or not.”
  • “If I share details about my child’s journey, please hold those details confidential and do not share them with others.”

3. Please respect my methods of discipline. Children from hard places, with special emotional needs, sensory processing disorders, and/or trauma (even life-saving medical trauma) do best when disciplined in a non-authoritarian manner. To be more specific, they do best when not disciplined according to Dr. Dobson’s methods, but rather according to methods such as Trust-Based Relational Intervention®(TBRI®).

Per the Dr. Karyn Purvis Institute of Child Development website, TBRI® is defined as an “attachment-based, trauma-informed intervention that is designed to meet the complex needs of vulnerable children. TBRI®uses Empowering Principles to address physical needs, Connecting Principles for attachment needs, and Correcting Principles to disarm fear-based behaviors. While the intervention is based on years of attachment, sensory processing, and neuroscience research, the heartbeat of TBRI®is connection.”

While my parents applied Dr. Dobson’s rules of parenting to my childhood and those tactics worked well (I think I turned out ok!), I will be using a different approach with my son. More than likely, the majority of special needs kids need an approach that differs from that of their parent’s childhood. On the subject of discipline, special needs parents wish their friends and family understood:

  • “I am not being permissive or coddling. My child requires things to be done differently.”
  • “What works for your kid might not work for mine.”
  • “The Dobson cause/effect/behavioral therapy does not work with kids with processing disorders. These kids often cannot easily connect behavior with consequence.”
  • “I wish Christians would get away from the mindset that authoritarian parenting is the one-and-only true, biblical way to parent. This has implications for all parents but can be especially detrimental for parents of special needs kids.” 
  • “Some popular Christian parenting authors say things like, ‘If you don’t spank your children, then you aren’t following the instruction of God’s Word.’ But most of the time their justification comes back to a few simple phrases taken from the book of Proverbs about the ‘rod.’ Building a whole theology [of parenting] from just one or two proverbs is problematic....” The book of Proverbs is part of the Bible’s wisdom literature. The proverbs are neither promises nor prescriptive methods, but rather general truths for godly living. 

4. Please do not assume I have superpowers. While I may look like I have it all together, most days I am hanging on by a very thin thread. Other parents agreed and commented as follows: 

  • “Many days I feel wholly inadequate. I need your support, not your negativity.”
  • “Emotionally I feel alone, I feel nobody understands what I am going through.”
  • “I don’t like it when people tell me, ‘Oh, you are so strong.’ I didn’t know I had another option. I need to be strong for my kid but what anyone cannot imagine are the countless nights without sleep just concerned about my child’s health, his future…”
  • “Please know I will go through cycles of grief in this journey. While I may have previously come to terms with my child’s disabilities…when a new life event happens…I can experience grief all over again.”
  • “I had never heard of Post-Adoption Depression Syndrome(PADS), let alone imagined that it would affect me.” 

5. Please offer me help.This is where the church—the body of Christ—can be the hands and feet of Jesus.  While I personally am used to “going it alone,” God never intended for that to be the way I operated. Our adoption agency offers these suggestions for how the church can encourage and support adoptive families, and I believe these ideas apply to any special needs family, biological or adoptive.

  • Pray for us. We crave prayer support for restful sleep, supernatural emotional bandwidth, health insurance approvals, surgeries, test results, and financial provision.
  • Offer to do household tasks.These tasks include laundry, errands, meal delivery, yard care, pet care, or babysitting a family’s non-special needs children. Many parents commented that they feel guilty for all the time their special needs child requires and their other children often suffer.
  • Initiate the help.Tell a family, “We want to do __________ for you this week,” instead of asking, “What can we do?” Asking for help is hard, especially when help is needed long-term as a child’s special needs are usually lifelong. Be the initiator.
  • Give gifts cards.These gift cards can be to favorite restaurants, grocery stores, museums, coffee shops, or parks. Consider even giving frequent flyer miles or hotel reward points. Many times travel is required in order to obtain the best medical care. 

For additional ideas, please consider watching this video from adoption agency, Lifeline Children’s Services. The ideas given are helpful for both biological and adoptive families.

Equipped to Love Module 1: How to Support and Encourage Adoptive & Foster Families from Lifeline Advocacy & Education on Vimeo.

In summary, we—parents of special needs kids—need less advice, less assumptions, but an abundance of grace.One mom who is fifteen years into her special needs journey with her son wrote to me, “There will be good days and really low ones, but by the grace of God, we will always have some hope, and that hope keeps us going.”

God’s grace does not disappoint, and you—family and friends—can be vehicles of His grace.


Acknowledgements:

Thank you to everyone who gave helpful insights for this article. I have kept your comments anonymous, but the Lord knows your contributions. I could not have written this much-needed blog post without you. May the Lord bless you. Dios le bendiga.

Photo by Ben White on Unsplash.

Resource Recommendations:

The Connected Child by Dr. Karyn Purvis, Dr. David Cross, and Wendy Sunshine

Heartfelt Discipline by Clay Clarkson

The Lifegiving Parent by Clay & Sally Clarkson

Karyn Purvis Institute of Child Development (includes a list of resources)

Parenting Your Internationally Adopted Child by Patty Cogen

Toddlers and Self-Control

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