When Jeff Emanuel, father of a son with autism, first heard of our idea to expand the How to encourage a special needs mom post into a book, he told his wife, Katie, “It sounds like you are building bridges instead of walls.” And that’s exactly my intention with writing this series.
We’ve spent the last three weeks hearing the amazing stories of these amazing families. We have heard their hurts, their frustrations, and their intense desire for community and understanding. They want to see bridges built between their families and the general population.
Before bridges can be built, walls must be torn down. And before walls can be torn down, walls must be understood.
Walls of Isolation
Isolation for so many special needs family is a given byproduct of the logistical and financial challenges of living their lives. Often, there simply isn’t the time to develop community outside of the family structure because of the time constraints of a cumbersome schedule.
Other times, the isolation comes because the needs of the child don’t mesh well with social situations. Meltdowns, social anxiety, aggressive or disturbing behavior – these things can be the everyday norm for the special needs family and can make it difficult in social situations where such things simply aren’t accepted well. Sometimes, the special needs child simply can’t handle the social situation that the rest of the family might crave and need. Pulling away from community is simply a necessity.
Isolation can come because social situations or community groups are unable to meet the needs of the child needs attending. A child with physical disabilities or one confined to a wheelchair might not be able to go over a friend’s house because it’s not accessible. Isolation can come because of feeding difficulties or food allergies. Children fed through a tube simply can’t meet their friends at McDonalds and sit down for a Happy Meal.
Emilee Roberts explains this feeling of isolation very poignantly:
Feeling isolated – feeling like “a flake.” We homeschool, so we’re blessed to have a flexible schedule. I plan activities based on the “good hours” of the day when all three are generally functioning well. Yet, more often than not we have to cancel or leave early because someone ends up having a meltdown or is overwhelmed. When in public, it can be embarrassing. I feel like I can’t teach them to cope well, though, because *I* can’t cope. I can’t handle the meltdowns because of my own sensory issues or because stress causes my Fibro to flare up, and I feel exhausted, and I just have to leave. I would love so much to get together with others at our home or theirs – an environment that is more controlled and with friends that understand. Even days at home are exhausting. Right now I am mom, teacher, and therapist. It can be overwhelming. When one of them has a bad day, it trickles to everyone. The dynamics are challenging. Often, we choose to just go places alone because we know that if something happens and we have to leave early we won’t be ruining anybody else’s time.
Walls of Misunderstanding
Emilee further explains, “I really don’t have many friends, and having special needs children is part of the reason. It’s hard to have friends when you feel like nobody understands. People don’t invite us anywhere because they figure we’ll say no, or they actually don’t want us there.”
Another way in which walls are built, especially between moms, is in the realm of offering advice. There are many reasons why advice from a friend to a special-needs mom would be bothersome, frustrating, or even hurtful. Sometimes the comments made are well-meaning but simply ignorant of the situation. Often, tried-and-true parenting methods for this or that problem simply cannot work for a child with special needs. Other times, the advice given contradicts what the parents are being told by their doctors and therapists. Sometimes advice comes across as though the offeree knows better than the mother of the child who lives and works with that child daily. Or sometimes, as well-meaning or even good as the advice might be – when slapped on top of everything her child’s doctors, specialists, and therapists are telling her – it’s simply too much for that mom to mentally process.
Katie Emanuel has expressed to me that she actually does appreciate advice from close friends, if the relationship is solid and the friend truly has a heart of understanding that the mom knows best. She says of advice from people that has frustrated her that “…it is not coming from their heart, it’s coming from their head.”
Walls of Discomfort and Disbelief
For families whose children have very visible special needs, their simple presence amongst typical families genders stares, whispers, rude comments, or innocent but hurtful comments because their child looks different from what is the accepted norm. Most of these people that I have met personally are brave. They let the stares and whispers roll off their back like water and continue to risk social discomfort for community. But I’m sure it’s not always that easy.
Families whose children have needs that are more mental than physical, more invisible than invisible, may have the opposite problem. Katie Emanuel mentioned to me that sometimes she feels that because her son’s needs are less visible, they aren’t given the same grace that other special needs families might receive – as though their needs aren’t as valid. Sometimes families who have children with invisible needs have to fight just to convince people that there is a serious problem with their child because people don’t believe them, or think that they are being over-dramatic.
Walls of Ignorance and Denial
Sara Fleming says it this way:
One thing I deal with is people who have no clue about autism or feeding tubes, etc… even though they think they do. It is very frustrating when people aren’t educated about what certain special needs are like. [We have] family [that] falls into the category of being ignorant. …When people don’t really understand, they come up with their own ideas or make assumptions that are usually wrong. Then that false information is spread around, which creates hurt for the special needs family.
The other issue is denial. If someone isn’t comfortable with your child’s special needs, they want to pretend they don’t exist. They will shy away from anything to do with it, to the point that if you even mention it, they walk away or change the subject. They can’t accept the situation, so they act like nothing is wrong. This happens with my family on a regular basis, but has happened with others, including people in my church. For me, those are the biggest “walls” that I wish would be knocked down!
Walls of Comparison
There are two ways in which comparison ruins friendships between families with special needs and families without them. And they are both damaging.
The first is when comparison invalidates or downplays the struggles that the special needs family faces. Comments meant to be sympathetic such as “My child does that too!” or “Oh, I totally understand!” really demonstrate to the special needs family that the commenter doesn’t have a true grasp on the difficulty of their situation.
Comparing comments that “one-up” their situation are downright harmful (such as a parent of a typical child comparing milestones by saying, ”Oh, my child did that months ago!” when the special needs child has fought long and hard to reach that milestone).
On the other hand, inflating the needs of the family to the point that their normal-ness (for lack of a better term) is lost can be just as damaging. When the mom of a typical feels like she must walk on eggshells around her friends because her life is SO much harder, walls can be built just as high.
Sometimes, the special needs family wants desperately to be treated like a typical family – like they are NORMAL. They don’t want to be defined by the special need of their child. They want to be loved and treated with respect for who they are. And when people view their child’s needs and their situation as so hard that they just can’t relate to it, so why try, the walls go up.
In the last few posts of the series, we will be delving into these issues more deeply – attempting to share practical advice for how these walls can be torn down and true community can be created.