Diagnosis

Gideon turns two next month and still speaks very little. Of the few words he’s said (hello, thank you, dad and deon (for his name), duck, etc…), he’s rarely said them again or on command. It’s not to say the boy doesn’t make noise, he walks around mumbling something to himself almost all the time, but he doesn’t talk. He’s not communicating his needs or desires or engaging in playful dialogue with his peers. And for all these reasons my sister has been increasingly worried that he may be autistic.

But I’d worked with autistic kids before and none of them, even the mildest of cases acted anything like Gideon. Gideon’s a ball full of happy giggles, totally okay with broken routines, amicable around strangers, and it’s not like he’s a mute. Is his attention span a little difficult to hold? Yes, but what toddler’s isn’t. Is he behind in speech development? Sure, but this is also something that boys in particular are often behind in. None of his behavior indicated autism to me.

Yesterday Gideon was tested for autism at Kennedy Krieger (one of the best institutes in the country for this test) and met all the criteria to be diagnosed with it. While they did say it’s too early to diagnose the severity of it (they can’t know this until ages 4-5), he is still classified as autistic.

My sister’s whole world crashed down around her over the news. In her 28 years here on earth, I don’t think I’ve ever seen her cry so much – it’s just not in her nature. My sister is strong to the point of coming off cold. She has a skin so thick she seems unbreakable in situations that would destroy a regular person. She kept saying things like: “What if I never hear my son say I love you?” “What if he’s aware of everything around him, but trapped in his own mind his whole life?” “I don’t want him to have to struggle; I want him to have a normal life.” and “This just isn’t fair.”

To see her fall apart so horribly unhinges my heart. I hate that I don’t know how to comfort her right now because I know all the positive, proactive things to say and do – I worked with kids with autism, I know what needs to happen next to correct any learning disabilities early on – but right now the pain is too fresh and these aren’t the things my sister wants to hear. Her fear for not just Gideon’s future, but the baby in her belly’s too now has completely consumed her.

As sad as it makes me that Gideon’s been labeled autistic, I am optimistic. I know that my family will do everything we need to do to educate him every day. I’m confident that after some actual one-on-one time, targeted to his weaknesses, that we will see improvements in his communication abilities. I feel like with work, he may completely test out when he’s tested again at 4 or 5 years old. And I know my sister will get to this positive place one day, but right now her worst fears for her child have come true. She can’t see past that at the moment.

When I was in college, working with special needs kids, I used to tell my mom that I thought I had such patience with them because God was preparing me for having my own special needs kid one day. Since there doesn’t seem to be a child in my future, I’m starting to think God prepared me for helping my nephew and I’ll gladly step up to the plate to teach my sister and nephew everything I know. I want her to have hope, to believe this won’t ruin his quality of life. And I, too, want Gideon to believe he’s just like every other kid one day. I just know that worrying about the ‘what if’s’ years down the road doesn’t help him today.

If you’re the praying type some supportive prayers for my sister’s family would be appreciated. Happy, positive thoughts are also welcome for those that don’t pray. My sister needs all the strength she can get to move onto the next stage in this diagnosis.
 

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6 Responses to "Diagnosis"

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  1. edgyauthor

    May 17, 2013 at 10:11 am

    Aww, your poor family! No wonder you’re sad. :(

    As sad as this is, your sis and nephew are really lucky to have you in their lives. Not everyone facing this diagnosis knows someone with the knowledge/experience you do. That will definitely be a big help, and I’m sure your sister will appreciate it greatly once she’s had more time to cope. Even if Gideon can’t test out eventually, hopefully he’ll at least just end up having a less severe form of autism. Life-altering doesn’t have to be life-shattering, so I’ll keep my fingers crossed that that’ll be the case here!

    • SarahWhisted

      May 17, 2013 at 2:48 pm

      Many thanks, Heather! You have no idea how much harder this whole thing has been because some friends and family members are already being judgmental and condescending, instead of being supportive. I guess it’s times like these when you learn who really matters in your life.

      I went to visit her again yesterday and she was already calming down and getting busy changing around their house to accommodate his educational needs. This will be a long, hard road – an adjustment for all of us, but I’m still confident the struggle will be worth it in the end.

      • edgyauthor

        May 17, 2013 at 10:52 pm

        Oh gosh, that whole condescending/judgmental thing really hits home. It’s been a whole decade since my diagnosis, yet we still have relatives who’ll blame my mom for my diabetes, amongst other nonsense. (And from more than just relatives, too. Ugh.) There’ll never be a shortage of narrow-minded people like that, so good luck to you guys staying strong! Your patience will no doubt be tested a lot over the years by people who simply refuse to understand…

        • SarahWhisted

          May 19, 2013 at 10:50 pm

          Yeah, I guess you do know something about that, then. I think this is a lot of what Rachel’s the most afraid of, people treating him cruelly for something that wasn’t his choice. I keep trying to remind myself that while we can’t control how other people react, we can control how we let it affect us, even when it’s really hard not to believe their uncalled for meanness.

          Thank you again for your support. Despite the ignorance of some, it’s good to still have people like you who care and uplift.

  2. onegrapeshy

    May 22, 2013 at 1:01 pm

    I agree with Heather that your family is lucky to have you, and I agree with YOU that God has prepared you, Sarah. Sending prayers. (((HUGS)))

    • SarahWhisted

      May 25, 2013 at 9:53 pm

      Thank you, Jeannine! This past week we’ve acquired a ton of books to study up on the best ways to educate him. And already he seems to be making improvements in my eyes. She’s not completely at ease yet, but it’s reducing my sister’s stress level some. Prayers are so appreciated!

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