It seems like every day there are more social media pages, new websites, and just general stuff on the web. When we are trying to find information to help our child, it can be really overwhelming!
Let’s use my daughter’s primary diagnosis as our example:
Her diagnosis is hypoxic ischemic encephalopathy (HIE). That looks scary! More simply, it means a brain injury due to lack of oxygen. (That sounds much easier to deal with, right?!).
When I type those 3 words into Google, I get back about 492,000 pages!!! When she was born in 2006 there was not much out there at all about this topic. So this number blows my mind.
How do I know which sites to click on and which to ignore? Since HIE is a birth trauma, a lot of the sites appear to be helpful and full of great information. But many are not what they seem. When you dig a little a deeper, you find that a lot of the sites are actually lawyers who are looking for clients to file medical lawsuits.
One of the first pages that shows up in the lists is an HIE page on www.cerebralpalsy.org. That sounds legit. One would think it’s a great resource and place to start. However, as soon as you open it, you see in the top left corner that it is a legal firm’s site. This one at least makes it obvious as soon as you open it. But not all are this clear about who they are.
I suggest one of the first things you do before trusting any new-to-you site is to find the ‘About’ page. It may be hidden and you may have to search down at the bottom of the page to get a link. But somewhere you should be able to find an ‘About’ button. That page will tell you who is providing the information. Lawyer, medical professional, parent, 3rd party product retailer. You see this a lot with medications or inaccurate claims about medications that are trying to sell their alternatives.
Many sites pay a lot of money to show up on that first page of Google results. Especially for phrases that receive a lot of searches. That’s not always a bad thing. However, sometimes you will find more reliable links further down in the results. Less popular, more specific searches have fewer, if any, paid placements.
There is nothing wrong with reading data from lawyers or other people who may not have your best interest in mind. The data may still be helpful. And you don’t have to provide them with your contact info. Just do your homework before you put all of your faith into information you find online. Be sure the source is valid and accurate.
This site—NavigateLifeTexas.org—is one of the best resources for familiar with kids with disabilities. It is written for parents and all of the technical information is vetted and approved.
One of the best resources is connecting with and asking other parents.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.