I’m Sad.

14 02 2014

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I need to start by saying we’ve had a change in our family. Not an actual change, but a label change. Our son with SPD has become our son with NLD… If you haven’t heard of that, don’t feel bad; I hadn’t heard of it either until my son was diagnosed with it, and I’m in the field of special education. NLD is Nonverbal Learning Disorder (or Disability), and it’s very similar to Asperger’s Syndrome (AS). The way I’ve been trying to explain it to people is that NLD and AS are the same soups with different spices. Both soups have the ingredients of attention issues like ADHD and sensory issues like SPD, but where kids with AS typically have good visual skills, kids with NLD typically don’t. When we told Cameron about what his neuropsychologist said, which he was begging to know, we explained first what Asperger’s is, since he has a friend whose brother has AS. After that, he said, “Oh! I think I have Asperger’s! I have four out of the five things you just listed!” We explained NLD is similar, but not the same, although in my reading it seems to depend on who diagnoses the child as to which label he/she will receive. Other deficits that we’ve discovered with the help of our most amazing neuropsychologist is that Cameron’s information and visual processing are s-l-o-o-o-o-w… I mean slower than my free college dial-up Internet slow… Also, he lacks in motor planning, executive functioning, and working memory. I could go on and on here, but I think my story today needs to be less about what to call him and more about who he is, which honestly can be a struggle to accept sometimes.

But who is Cameron? When you first look at your newborn baby, you think of how much love you have for this person you just met (at least I did). When you hold him you may think about the teenage years when he may hate you and it’s going to be really hard, but you don’t think about all the struggles you may have beyond that, which is all I’ve been able to focus on lately.  It doesn’t really help that Cameron has started struggling with behavior at school, his handwriting has actually not improved at all since first grade (according to one of the many assessments), he argues with us about everything (Love & Logic is great, but doesn’t work for all kids all of the time), and he is, at times, painfully socially awkward. Watching him in a group of kids and seeing their reaction to him, knowing that he doesn’t pick up on their cues, is pretty much terrible. I was always the quirky “weird” kid, but I knew that other people thought I was weird so I tried to avoid those people. Cameron just goes in for more and more without ever realizing that A) They are annoyed; B) They are a bit weirded out; C) The arguments that may or may not ensue are partially, if not mostly, his fault.

So to answer my own rhetorical question, with a cliché answer, Cameron is Cameron. I don’t know anyone else like him. He is an avid reader (even though reading is typically difficult for kids with NLD) who loves History but gets so overwhelmed by too much on a math paper that he cries and is literally unable to do it. He is a very, very sensitive and affectionate person who loves tickles and snuggles and hates change to his routine. He is a smart kid with an extremely disorganized brain that reflects his desk and closet. He is a hoarder of things he cherishes, which is almost anything, and these things muddle up his room, which seems to muddle up his brain even more. He is a loving but extremely bossy brother and a sweet but extremely argumentative son. And because he’s a mix of so many juxtapositions, he’s hard to figure out and very hard to parent. There isn’t a baby book that tells a new mother that her new baby boy who talks so early and seems so smart may not be able to write so anyone can read it by 4th grade, even if he can give facts verbatim from a book he’s read. In What to Expect When You’re Expecting, there isn’t a chapter on how a seemingly typical child can still be atypical in his neurological development. I’m pretty sure I never read that you may expect to give your nine-year-old step-by-step directions on how to brush his teeth properly every single time he brushes his teeth.

And as Cameron’s mom, sometimes I struggle a lot. Sometimes I’m so overwhelmed with the fact that he will seem to be doing better, arguing less, listening more, having fewer meltdowns, needing less direction. Oh my gosh, maybe we’ve turned a corner! Maybe we’ve finally figured out what works! Then BAM! HaHa. Nice try. We’re back to square one. Which, clearly, is where we’re at right now. And you know what? I’m sad. I am constantly feeling guilty for feeling so frustrated about our family’s struggles, when I have so many families I work with who are parenting children with much more significant struggles. But today I’m giving myself permission to feel sad about it. Just for one day. It’s really, really hard to put so much time and effort into teaching strategies and going to therapists and changing diets and reading books, but still not feel I am doing any better at parenting and accepting Cameron exactly how he is than I was three years ago. So just for a few hours-just this once-I’m letting myself cry for the things I can’t change no matter how hard I try. I will cry for the strain these struggles put on my marriage, to the most loving and amazing husband in the world, who is equally as frustrated. I will cry at the ineptitude I feel on days when I hit a wall and let things crash down around me. I will not give up, but I will let myself feel. Just until I have to put on my big girl panties and get my amazing boy off his school bus, where he doesn’t really fit in, and I can bring him home, where he does. 

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