To start, let me just say that my husband has lovingly referred to me as “The Googler” as if I am some sort of villain from Batman (And let me assure you, I am Batman’s biggest fan so there’s no way I would be a villain in that comic) because I have a great ability to find online information very quickly. Maybe because I took a course in electronic information gathering as a journalism student. Maybe not.
Either way, I don’t know that “our” generation has fully realized how powerful the internet really is. Or at least not everyone gets it, and I am sure I don’t truly get the full implications of the web, either.
What I do know is that Google has been a game changer for our family. Things I would not have found so fast or possibly ever:
1. My original search about my little dude online was due to his puzzle skills and alphabet obsession. What I found was a bunch of stuff about autism and hyperlexia. At first, I was like, “No, no, I want to read about giftedness, computer! What is this weirdness you are spouting at me?”
But then I read the stuff and took a step back with a logical eye. I became almost certain my son was “hyperlexic. ” It’s not really a label someone gets diagnosed with– hyperlexia is sort of this umbrella term for little, little kids who learn and become obsessed with letters and sometimes numbers. Super early readers are sometimes looped in here, but not really if they are preschoolers or socially-adjusted. Hyperlexia is a term, as I understand it, used to describe someone with a sort of fanatic love for these things with a lot of autistic– social communication deficits and sensory issues (we’ll get to sensory things and how they apply to autism in time)– tendencies.
My point here… Would I have realized my son was on the spectrum without the internet? Yes. Would I have put the pieces together as quickly? Most likely not.
2. Okay so I got on my, “I think my son has…” horse and started galloping. I heard a few, “I don’t know because…” “Wait and see…” “Maybe…” responses. Nobody was like, “YES!” And my dude’s pediatrician was on vacation (I love this pediatrician, and we continue to keep our son in his practice despite our now one-hour commute there). I had to schedule an appointment three weeks in advance. So I started googling again… I found Autism NJ, and they have some great information on their site.
And golly gee, what did I see? New Jersey Early Intervention needs no referral, not one doctor’s note… just a call from a concerned parent and your child gets evaluated! I called, had his intake call done, and his evaluation scheduled one week before his pediatrician appointment. Perfection.
Again, would I have known this so soon without the internet? Maybe if I had talked about our situation to the right people. Would my son’s evaluation have been scheduled so quickly? Absolutely not.
3. EIS Eval happens. Autism is not diagnosed because that’s not part of it– deficiencies are recognized (If a child has a 33% delay in one area or two 25% delays, the child is eligible for services). My son met the criteria. I was told we should get autism “ruled out” … so the search for the right doctor to do THAT began even before we saw our pediatrician.
Let me tell you, developmental pediatricians are hard to schedule on short notice! And what’s more, the best of the best have at least seven month waits. I got around all this with a much shorter, but still not short wait… because of online research.
Now, most people would not have been able to maneuver what I did to get my son into his autism evaluation appointment because it had a lot to do with our daughter, but still, I would not have found any of the information leading me to get him in if it weren’t for — a NEWSPAPER article (what? the printed word is alive?) and Google and an online database.
4. This leads me to our daughter. Let me say firstly, my husband and I are not hyper-crazy-investigate-health-problem-zealots by any means. We’re pretty chill, earthy people. But there is research, very reputable research at that, suggesting that siblings of children with Autism Spectrum Disorder have a much increased chance of having an ASD in comparison to other children. Beyond this, while boys are often a bit more obviously on the spectrum, girls are sneaky because they are scientifically and generally more verbal, social creatures, even from the baby years.
I found a study tracking infant siblings of children with ASD, and we enrolled our daughter in it. It will keep a watch on our little (am I allowed to call a possibly 20-pound who-knows-how-long six-month-old little?) girl, and we’re pretty happy about it. We’ll get into this more another time, but not anytime soon.
Again, would NOT have found this without the internet.
5. We are now looking into more therapy options for our son. We’re not searching for medical options right now– we have medical concerns about our son that might relate to autism and might not, but they are for doctors to discuss with us for now– we’re looking for therapies. And wow, is there a lot to read! We would know some things because of early intervention, especially our son’s amazing occupational therapist, but there is no way I would have found some of our possible therapy ideas and plans without it.
6. Blogs. Oh how I love blogs by Moms. I have always loved blogs by Moms. I wrote one about being eco-friendly. And wouldn’t you know there are plenty out there by Moms of autistic children, too? What gold for others trying to understand if, what, how about their own children. Right now, I think there’s nothing more informative than hearing about the every day of a child and the struggles of those parents. Mom-written blogs are comforting, educational, and fascinating. Not possible without the internet.
7. As we are looking for therapy options for our son, we are realizing that no matter how great our insurance is, money ain’t a thing. And we can’t afford everything. But there are grants for kids on the spectrum. And wouldn’t you know you can find them online? Fabulous.
So Behold… the Power of Google.
**Google is great, but refer to health professionals for medical needs, please. This post isn’t to say that you can diagnose your child yourself. Doctors are important and essential. Good research and a prepared parent makes for better advocacy and questions– it makes your child all the better served.**