There’s no use denying that parenting a child is stressful. Nor is there any use in denying that parenting a child with special needs is exceptionally stressful. Of course, some of that stress could be avoided by living in a more understanding society—at least, in theory it could be. But some of that stress is unavoidable.
First, there is stress in meeting an immediate special need. For example, helping Willy cope with the immediate needs brought on by his having seizures has been enormously stressful. Of course, all parents experience the stress of meeting their children’s immediate needs. Parents of children with special needs experience more stress, because there are more needs, and often the needs are exceptional—meaning we usually don’t have readily available access to the experiences that would train us to deal with those needs.
Here I must point out that I am using “special needs” more loosely than the term is traditionally used. Traditionally, “special needs” is synonymous with disability, but if you think about it there are many “special needs” that have nothing to do with disability. For example, a child who has been abused or physically traumatized in an accident has special needs. A child who has experienced an emotional trauma, like the loss of a parent, has special needs, too. These kinds of special needs can, of course, overlap with the special needs of those who have disabilities. The point is, as we acknowledge our own stress, it is also important to acknowledge that other parents can have very similar (in quantity and severity) demands placed on them due to very different circumstances.
Second, there is stress in advocating for your child. While, in theory, the need to advocate could be avoided by living in a more understanding society, the only way we’re going to get a more understanding society is by advocating for our children (and later with them). So, considering the times in which we live, advocacy is unavoidable. We advocate for appropriate medical care. We advocate for appropriate education services. We advocate for appropriate supports. We advocate for appropriate opportunities. We even, upon occasion, have to advocate for appropriate recreation. Advocating is stressful whether our advocacy work is on a small scale, concerning our own child and our own situation, or on a larger scale, concerning many children in our local, regional, national, or international community.
Third, there is stress in meeting auxiliary and fall-out needs. Having a special need creates an immediate need. Again, I will use the example of Willy’s seizures. He has a need for medical or neurological stability. We have a need for answers as to how to attain this medical or neurological stability. But there are also auxiliary needs. For example, we have to answer the question: “How do we support Willy’s medical needs at home?” And, by the end of the summer, we’ll also have to answer the question: “How do we support Willy’s medical needs at school?” There are also fall-out needs. For example, “How do we cope with Willy’s increased anxiety?” “How do we provide Willy with emotional support?” All these needs add to the stress.
Fourth, there is stress to meet on-going needs. In my case, I have a household of six (including myself) to manage. Luckily, I don’t do that alone. But the point is that Willy and all his brothers, along with my husband and myself, all have on-going needs that don’t cease to exist because a new special need has arisen. Meeting these needs was stressful before, and it continues to be stressful now. In fact, with each new demand, the stress of meeting previous demands increases, because there are fewer resources to devote to those demands.
Fifth, there is stress to “catch-up” at home. This may seem minor in comparison, but when you’re so busy meeting new needs and ongoing needs and advocacy needs and auxiliary needs and fall-out needs, only to find that when you want something to eat your fridge looks rather bare and your cupboards aren’t much better, then the weight of household needs can seem pretty heavy. In any American household, there is a need to restock or shop, to clean, to pay bills, and the like. These needs don’t go away just because you have too much on your plate. The more you put them off, the more pressing they become, and the need to satisfy these needs can be its own stressor. (Of course, I can’t imagine this stress fairly compares with the stress of having to grow one’s own food, make one’s own soap, and perform all the household tasks with fewer tools and less resources, as many people still have to do, so it’s all relative.)
Sixth, there is stress to “catch-up” at work. Whether you make it to work or not, you’re not going to be at your best when a new need arises. In my case, I have some choices, but I also have contracts. Besides, any job that requires a high degree of concentration is going to be negatively impacted by a new special need, because it is more difficult to concentrate on work when you’re facing a new, unknown special need at home. It is also stressful to try to catch-up with all the tasks that you’ve neglected.
Seventh, there is stress to maintain relationships. People aren’t just a parcel of needs that need to be met, though sometimes it can seem like it. At the core, we are a series of interconnected relationships, and those relationships need to be nurtured and maintained. Performing these tasks well can help alleviate stress, but the need to perform them when under extreme pressure is another stressor—one that, unfortunately, tends to be neglected, which risks pushing those relationships to their breaking points.
Eighth, there is stress to help others with their own stress. As the parent, you have the responsibility (which you may share with a spouse or a significant other) to help others in your household and extended network of family and friends deal with their own stress. Ideally, this goes both ways, but it doesn’t always seem like it.
This obviously isn’t an exhaustive list, but I think I’ve covered all the major general categories. (Feel free to add to the list in the comments.) There’s a lot of stress. Somehow we need to learn how to deal with it. I’m still trying.