“You know that higher pitched voice people often use when talking to a 4 year old? People will use that same voice when speaking to me, even though I’m an adult. It makes me feel patronized almost like they are putting themselves above me. For some reason, there is this assumption if I have a special need, then I also have the intelligence of a child. This can even be true for those of us with a physical disability. And while some neurological diagnoses can hamper verbal processing, this is hardly true for the vast majority. I wish people would talk with me as they would any other adult.”
Sensory Processing Disorder is when one or more of a person’s senses is either heightened (more sensitive) or dulled (muffled). While a light touch on the hand may feel painful to some, it may not be noticeable at all to others. Smells could seem unbearable or unnoticeable. What many of us would consider a busy and loud room, a person with SPD could experience as painful, unrecognizable, or thundering and he or she could desire to leave the area. What’s truly important is to realize that everyone senses the world differently and to varying degrees. Consider the sensory input in your present environment and the responses of people around you. What might you do to help those with SPD feel more comfortable?
When a baby is crying, we never assume the baby is bad. We wonder if they are hungry, tried, gassy, or simply want to be held. Our response soon is forgotten as the child grows, but the reality is all of us react and “make a fuss” due to indirect causes. We may snap at a person and in truth we probably wouldn’t have if we had gotten a full night’s rest.
Before judging or reacting to behavior you find incorrect, always try to see what the “why” is behind the behavior. Could it be the person is tired, vulnerable, hungry? Could a past trauma be driving their current behavior? Could their history or how their mind and body works be different from yours?
For all parents, there are times when we want to apologize for our child’s behavior. For parents with children who have a special need, apologizing is a tricky subject. While apologizing may be warranted due to harmful or disrespectful behavior, having a parent or child apologize for their child’s special needs can communicate that their physical or neurological uniqueness is a bad thing and is an intrinsic burden to others. This can damage the child’s self-worth. Before seeking an apology from a family for the child’s behavior, ask yourself, “Is the behavior directly tied to the child’s neurological needs or physical ability?” If so, how can we enter these conversations with abundant grace?
To many, elopement doesn’t mean running away and getting married. It’s a term for when a person wanders or runs away from an area due to fear, overstimulation (such as too much noise or activity in the area), or curiosity. In cases with fear or overstimulation, it is often perceived as the best course of action to get to a safe place.
Even if a person is in a safe area, he or she may elope when they perceive it isn’t. Anytime a child elopes, it is very scary for the parent or care provider. What ways can our church be perceived as safe? What scenarios could be anxiety-inducing for a new person or person with special needs?
There is a parable that goes if you were to go to a monkey, bird, dog, and a fish and tell them to climb a tree, it is obvious which of them would do well and which would struggle. Now imagine if you told them that they all had to live in the tree together and be a healthy community. The environment that is the tree is hardly conducive to the wellbeing and the strengths of the dog and fish.
Those of us with special needs have different physical and neurological make-ups with our own gifts for our community and the Kingdom. Unfortunately, these gifts are not always seen since we are often asked to climb a tree, when we are much better at swimming. How can we make our “tree” a place where all can thrive?
“Walking through a forest, you may see the forest, but I see every leaf, its shade, every root, whether it will likely trip me, and every rock. My brain takes it all in.
I am often taken for being distracted or not paying attention. In reality, I am. I am watching TV, playing on my phone, and eating dinner while having a conversation with you, but that does not mean that I am not listening or paying attention. Most likely I am paying attention and probably actively participating in the conversation. However, if you want a specific answer, I need to know you are talking to me, especially in a group or in a space with a lot of noise. It takes massive amounts of concentration for me block everything out, like catching a specific snowflake while standing in a blizzard.”
Ableism is the belief that a person’s value is directly connected to what they can presumably contribute to the community. Unfortunately, it is heavily and subtly entrenched in our culture and even in our churches. For example, ableism can be as discreet as only offering serving opportunities to the fully able-bodied. In this way, ableism is a lack of accommodation and imagination. What areas do we lack accessibility? That’s where we have allowed ableism to discriminate. At College Wes, we are seeking to eliminate these obstacles and instances of ableism so that all might find meaningful contribution within the community of Christ.
“Because our culture does not often keep in mind how my mind and body work, I use self-regulation. Self-regulation can mean a lot of different things to each person. It could mean I have to walk around during a meeting or doodle while you are talking to be engaged with the conversation. Walking around can be distracting and doodling can seem like I’m not paying attention, but I actually AM engaged and listening. For those of us with anxiety, twisting our hair in our fingers could mean the difference between joining in the conversation or needing to step out of the room. Whether it’s not making eye contact or walking around during a meeting, don’t see it as being rude. I’m simply self-regulating so I can BE and WORK with you.”
Whether it’s out of the brokenness within our human nature or simply how we as humankind categorize and identify the world around us, we tend to identify others first by how they are different from us as though the difference is most relevant. This happens far too often in the area of special needs. We mention a person’s disability or diagnosis even when it’s not relevant to the conversation. For example, if you are recommending a hairstylist who happens to have ADHD or a prosthetic leg, mentioning the disability isn’t really relevant to their skill as a hairstylist. That fact is neither relevant nor respectful. A simple guide for the future is to ask yourself, “Is this information really relevant to the conversation?”
When describing a person who has a disability, the descriptors we choose can be thoughtful or hurtful. Here are some more thoughtful alternatives to use when describing a disability:
Words can be one of the most powerful ways in communicating dignity to each other. When it comes to the area of special needs, always put the person before the diagnosis. For example, rather than saying, “special needs people,” say “people with special needs.” This kind of person-first phrasing can give dignity to a person with special needs. Also, whenever you are able, use their name. You would rather be known by your name than by your haircut or shoes. No one wants to be known as “the balding man” or “the long-legged lady.” Next week’s article will get a little more in depth on this subject.
What I want you to know about being a parent of a child with special needs is that they have beautiful things to offer you and the rest of the world. It can be exhausting advocating for my child and educating others on their gifts and needs everywhere we go, not just school, but church, in the community, and even with our friends. It’s hard for others not to make assumptions when they see my child on the outside. These assumptions can harm my child and make them feel less than. But it brings tears to my eyes when others welcome and enjoy my child in even the smallest ways because I love my child and hope you enjoy them too.”