Misdiagnosis

Remember last month, when Gideon tested positive for autism at the Kennedy Krieger institute and my sister's world crumbled around her? (No? Click HERE.)

Since Gideon's diagnosis, our family has been crazy proactive. We've read books on how to teach him, completely changed his daily routine, removed overstimulating toys from his collection and replaced them with educational ones, and devoted time daily to working with him. He's also been going to speech therapy twice a week for an hour at a time. In just this past month, these changes have had a huge impact. Gideon talks nearly all day, everyday now. Sure we still don't know what he's saying half the time, but he's engaging in conversation constantly. And those words he'd said before (hello, thank you, uh-oh, etc…) are now being used regularly at the appropriate times. He's using utensils to eat now and capable of matching colors, numbers, and shapes in puzzles or on command. And he's listening to directional cues (feed Elmo a cookie, go get the ball, turn off the train, take off your shoes, etc…). He hardly even misses the electronic toys that kept him occupied before.

Both of the speech therapists Gideon sees nearly laughed at the report Kennedy Krieger gave my sister, which stated that Gideon's abilities were no greater than a six month old baby (which means he was virtually doing nothing on the learning scale at all). After even just one session with him, they told my sister they weren't going to treat him as an autistic patient and rather a speech delayed boy. They advised my sister to take into consideration the fact that Kennedy Kreiger gets state funding based on the number of kids they diagnose per year and that a true autism test is a three hour session (which they didn't preform). So Rachel decided to get a second opinion through the early education program here in our county (they actually do the three hour test).

Yesterday Gideon had his second evaluation. Cognitive, receptive, social, and adaptive skills (motor skills) put him on par with a 24-30 month year old (he's 24 months old this week) and communication skills put him about 15-18 months (which means he is behind in speech, but that's it). While the early education program can't technically diagnose kids with autism, they said it's very unlikely he is autistic, just speech delayed. Because he's behind, he still qualifies to continue the speech therapy he's currently receiving and those therapists he's working with a sure it's just a matter of time before he catches up.

Basically, Gideon's a little flower that we failed to water. Now that we're dousing him with water, he's growing at a rapid rate. It's hard to admit, but we'd failed him until that terrifying news last month. And while it put a hard strain on our hearts worrying about his future, only now to find out it's unlikely it was ever really an issue at all, it was good we had that motivator to push us into doubling our efforts so he didn't fall further behind because of our own ignorance.

This news comes as such a relief to my sister and at just the right time. With another son on the way, she needs to reduce her stress level and enjoy motherhood. Yesterday was an answered prayer that was spoken by many. We're feeling rather blessed today in the wake of it.

I am more confident than ever that Gideon will continue to excel and that if/when Rachel has him tested again, they'll wonder why they ever diagnosed him autistic to begin with.

Thank you to any of you who have been sending positive thoughts and prayers about this for the last month. It means so, so much to us. 

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12 Responses to "Misdiagnosis"

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  1. edgyauthor

    June 21, 2013 at 9:40 am

    Oh, this is such fantastic news! Glad to see this is merely a speech issue and not an autistic one. I can only imagine how relieved you and the rest of your family are feeling right now!

    • SarahWhisted

      June 29, 2013 at 1:42 am

      Definitely a relief! A speech delay will still be a hurdle, but one that I think we’ll be able to work hard to overcome with him. :)

    • SarahWhisted

      June 29, 2013 at 1:42 am

      Definitely a relief! A speech delay will still be a hurdle, but one that I think we’ll be able to work hard to overcome with him. :)

    • SarahWhisted

      June 29, 2013 at 1:42 am

      Definitely a relief! A speech delay will still be a hurdle, but one that I think we’ll be able to work hard to overcome with him. :)

  2. edgyauthor

    June 21, 2013 at 9:40 am

    Oh, this is such fantastic news! Glad to see this is merely a speech issue and not an autistic one. I can only imagine how relieved you and the rest of your family are feeling right now!

  3. edgyauthor

    June 21, 2013 at 9:40 am

    Oh, this is such fantastic news! Glad to see this is merely a speech issue and not an autistic one. I can only imagine how relieved you and the rest of your family are feeling right now!

  4. littlemermaid

    June 24, 2013 at 3:57 pm

    I’m so glad it turned out it wasn’t autism. This is why it’s always important to get a second opinion/evaluation. You guys must have been so relieved when you heard the good news! Oh, and congrats to your sister for the baby she’s got coming on the way! :)

    • SarahWhisted

      June 29, 2013 at 1:45 am

      Yeah, having the second opinion in this case not only gave us a sense of relief over a misdiagnosis, but also a better idea what exactly to focus on to make sure he succeeds as much as he can. Second opinions are a definite must, in my opinion. Thanks for the congrats on my sister’s second son! I’m so excited to have another nephew, especially if he’s anywhere as awesome as Gideon (which I’m sure he will be). 😉

    • SarahWhisted

      June 29, 2013 at 1:45 am

      Yeah, having the second opinion in this case not only gave us a sense of relief over a misdiagnosis, but also a better idea what exactly to focus on to make sure he succeeds as much as he can. Second opinions are a definite must, in my opinion. Thanks for the congrats on my sister’s second son! I’m so excited to have another nephew, especially if he’s anywhere as awesome as Gideon (which I’m sure he will be). 😉

    • SarahWhisted

      June 29, 2013 at 1:45 am

      Yeah, having the second opinion in this case not only gave us a sense of relief over a misdiagnosis, but also a better idea what exactly to focus on to make sure he succeeds as much as he can. Second opinions are a definite must, in my opinion. Thanks for the congrats on my sister’s second son! I’m so excited to have another nephew, especially if he’s anywhere as awesome as Gideon (which I’m sure he will be). 😉

  5. littlemermaid

    June 24, 2013 at 3:57 pm

    I’m so glad it turned out it wasn’t autism. This is why it’s always important to get a second opinion/evaluation. You guys must have been so relieved when you heard the good news! Oh, and congrats to your sister for the baby she’s got coming on the way! :)

  6. littlemermaid

    June 24, 2013 at 3:57 pm

    I’m so glad it turned out it wasn’t autism. This is why it’s always important to get a second opinion/evaluation. You guys must have been so relieved when you heard the good news! Oh, and congrats to your sister for the baby she’s got coming on the way! :)

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