In Part 8 of the series, “Every Family Has a Story,” Darla Johnson shows you how to arm yourself with good information as a caregiver.
Click here to read previous posts in this series.
Have you ever tried a new dish without using a recipe and it didn’t turn out so well? Or maybe you opened a box with a “some assembly required” toy or piece of furniture and didn’t use the directions and the results were less than desirable. Perhaps you set out on a trip and thought you were too keen to need a map, GPS, or directions and ended up getting “temporarily dislocated” (a.k.a. lost). What is the common thread through all of those scenarios?
It’s not a lack of desire, talent, ability, or intelligence.
It’s a lack of utilizing good information.
We live in an information society. Just about anything you’d ever want to know (and plenty that you don’t, like the constant barrage of updates on the Kardashians) is at your fingertips and instantly accessible. So when there’s a need to be in the know, there’s not always a good reason not to be. Sometimes you may need to dig a little deeper or try a little harder, but usually the answer is out there somewhere.
If you care for a child with special needs, then information can be your friend. I’m going to give you a few reasons why it’s to your advantage to educate yourself on the diagnosis of the son or daughter you care about. Having two children in our family who have a rare eye disorder, among other diagnoses, has made me a believer that knowledge is power.
The title of this post mentions a “surprisingly simple” way to help your special needs child. I didn’t it was easy, but it’s relatively simple to know how to seek out good information when we need it. And by growing in your knowledge of the child we care for, we in turn help the child.
One of the most important reasons to find out what you can about a disorder is so you can be the best advocate possible. Understanding how the diagnosis affects your loved one goes a long way to being able to provide care and knowing which specialists should be included in the care plan. You can search for agencies, foundations, groups, etc. that are relevant to the diagnosis and find assistance of all imaginable kinds.
When you’re an informed advocate, you have some power to influence others around the one you care for. One personal example is helping the people around my low-vision son know that he needs to hold things close to his face in order to see them. This goes for television viewing as well; it’s an “old wives’ tale” that being close to it will hurt his eyes. When I educated people about this need of his, they happily complied with helping him.
Another significant advantage of being educated is to be in better control of treatment options. If you didn’t know that a specific medication could help treat symptoms of your child’s diagnosis, you wouldn’t know to inquire about it. If you had no idea that certain hospitals help people with specific diagnoses free of charge (if they qualify), you may end up spending a lot of money needlessly. If you understood that physical therapy was an effective treatment option instead of jumping directly into the idea of surgery, wouldn’t you want to try physical therapy first?
These are vague examples, but if you understand what you’re dealing with, you may have more control over your treatment options. Here’s a more specific example: our son with the eye disorder also has autism. Had I not read (a whole lot!) about autism, I might not have known that ABA (applied behavioral analysis) therapy was even a thing, let alone that I could find a therapist as a resource. If we had not pursued that, we’d probably still be dealing with meltdowns during transitions.
When you arm yourself with good information about what you’re dealing with, you can expect a better possible outcome than if you just blindly muddle along every day, wishing there was a better way. You can have an intelligent conversation with healthcare experts. You can request specific testing, or even decline it (if you decide it’s unnecessary or repetitive). You can search for resources that you need or think might be beneficial (wheelchair or other medical equipment, financial assistance for therapy, assistive technology, orientation and mobility specialist, interventions from music therapy to equine therapy, the options today are endless).
If you have a child in school, you can enter an IEP (Individual Education Plan) or Section 504 meeting with more confidence in requesting accommodations than if you had no idea what to do. Personally, I believe our son with autism will have a much better outcome due to us searching for and utilizing multiple therapists, agencies, and resources than if we had just sat on our hands and wished for good results.
So how do you go about learning? It can seem very overwhelming at first! You can start with the one who rendered the diagnosis. That healthcare expert should have at his/her disposal pamphlets or print outs with some resources to contact. And those resources may lead you to more resources.
You can also try the Internet. As always, use common sense and if it sounds hokey, it probably is. Start with well-known agencies like the American Heart Association, American Academy of Pediatrics, the National Association for Down Syndrome, etc., specific to your situation of course. Check the yellow pages in your local phone directory. Ask around within the circles of people you know whether they have any experience with your loved one’s diagnosis. Word of mouth recommendations are sometimes some of the best because you can “weed out” the providers you might not jive with before you even begin.
Because it can be overwhelming at first, just do one thing a day until you feel you have better control of your situation. Make one phone call, research one agency, read up on one medication or treatment modality. And take notes as you go along, because the details can get all jumbled up after a while. Start slowly, but do start. Over time, you’ll feel less intimidated and more empowered. Link arms with a buddy, if you can, and share this journey together, because we were never meant to walk alone.
Photo: Flickr/Damián Bakarcic
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