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Supporting Special Needs Parents

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Parenting is hard work. Parenting a special needs child, however, amplifies everything. There’s more exhaustion, more overwhelm, more expense, more need for advocating and intense research to advocate further. There are also limitations: lack of equipped childcare options, lack of time for self-care, developing a healthy work/home life balance, enriching a marriage or spending individual time with other children in the family who do not have special needs. Perhaps the biggest challenge of all is simply being misunderstood by the broader community. Here in no particular order are things that special needs parents want you to know.

  1. We’re different, but we’re not. You might not understand all the intricacies of our daily routines—all the therapies and specialists, elimination diets and demanding protocols—but you could (and you would) do it if you were in our shoes too. Deep down we want the same things for our children: We want them to thrive. And as parents, we’ll do anything to help them get there, even if it requires much of us.
  2. We need extra grace. Please don’t put us on pedestals or hold us at a distance. We’re not superhuman, and we have the same needs as anyone else. If anything, we just need extra grace. Having a special needs child can bring about immense guilt and grief that we’re constantly working through. Our time may be limited, so don’t take it personally if we can’t accept every invitation you send, but please know it means a ton to be invited!
  3. Hard is hard. There’s no prize for having the most difficult special needs situation. So please don’t compare our situation to someone else’s in an effort to either make us feel more noble or make light of the challenges our child faces. Statements such as, “I don’t know how you can do it! I could never do what you do!” or “Well, at least your kid can fill-in-the-blank!” aren’t helpful to our daily reality. Likewise, please withhold irrelevant advice and cliche comments. If you don’t know what to say, silence is golden.
  4. Seen and unseen disabilities are equally painful in different ways. Children with physical disabilities wear their struggles on their sleeves and can be on the receiving end of awkwardly long stares, confused glances and well-intentioned but hurtful statements. Oftentimes, parents of children with physical disabilities feel pitied. Children with hidden disabilities, such as spectrum disorders and intellectual disabilities, face their own fair share of public scrutiny when strangers, family and friends wonder why they can’t seem to just “get it together” and act neurotypical when, in fact, they’re not. In this case, many parents feel blamed or shamed for their child’s behavior.
  5. Odd behaviors are not the result of bad parenting. Children with special needs may moan, groan, yell, clap or engage in a stimming activity to self-soothe such as rocking, rolling or swaying. They may make a ruckus if overwhelmed or overstimulated because they don’t have the ability to communicate otherwise. Special needs children are not making a show for attention, and their behavior isn’t an indicator that they’ve not been parented well.
  6. Parents aren’t the only ones impacted by life with special needs. It’s natural for sibling rivalry to occur between brothers and sisters. But when one child requires the majority of the family’s time, energy and resources, it can cause a mix of emotions for a non-special needs sibling such as guilt for being well, anger or resentment for feeling unseen or shame about peer response to the family dynamic. Our special needs child then isn’t the only one with unique needs. Our other children need friends and special supports to better equip them for the dynamic present at home.

Ways you can support a special needs parent

If you have a friend or loved one with a special needs child and you don’t know how to help, here are some great starting points.

  1. Ask. One of the greatest ways to show care to special needs parents is to simply ask what helps them the most. Not only do degree and severity of special needs differ, but so do the needs and temperaments of special needs parents. Just simply stating, “How can I help the most?” is a great starting point and a gift itself.
  2. Learn. Do your due diligence to become better informed regarding the special need your loved one is facing. Watch a documentary, take a class, read some books or listen to podcasts that help you become better informed so that you can more actively engage in kind and appropriate ways during your next interaction.
  3. Babysit. Childcare for special needs can be incredibly limited, not to mention expensive. It’s a huge gift, then, when a loved one makes the effort to provide respite care for any length of time, be it an hour, a day or a weekend. If you find that providing childcare for a special needs child is outside your comfort zone, consider offering these alternative services instead:

4. Pick up the tab. Special needs can cost a bundle, and many parents let their own needs go. Thoughtful gifts like restaurant gift cards, grocery delivery, spa services (haircut, massage, pedicure, etc.), or a gym membership can go a long way in helping Mom and Dad feel loved.

5. Accommodate. When planning an outing that includes your loved one’s child, make sure the venue will accommodate their needs, for instance access at an optimum time of day, wheelchair accessibility, a sensory friendly room and a menu that covers dietary restrictions.

6. Be there. A good friend doesn’t have to have all the right answers or provide all the right resources. Sometimes it’s as simple as sending a text of encouragement, leaving a note on the doorstep or offering to go on a walk. Presence truly can be one of the greatest presents.

Lauren Greenlee is a boymom of four neuro-creatives ranging from teenagers to toddler. She writes from her Olathe home.

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