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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13 responses

14 02 2014
Kelly

Do you know where else Cameron fits in? With us, at our house. And that is where I think you and your family need to spend a weekend or two this summer. A little R&R. I am going to send you some dates to make it happen. I love you!

14 02 2014
ktonette

You’re so sweet. I appreciate it more than you know. Yes, let’s make it happen!

17 02 2014
Megan

Katina
I love your blog. I’m crying and laughing because I feel like you are describing my life with my son. We feel so lost in this process and overwhelmed and not sure where to turn. Thanks for sharing.

18 02 2014
ktonette

I am so happy you are finding some solace in the blog, as that is one of the reasons I write– to help other families! I think one of the hardest things about having a child with NLD is that some days he seems to fit in and be a regular kid, while other days it’s like a switch flipped and he’s unreachable, if that makes sense. It helps to feel you’re not alone on those days. I wish you more good days than bad. Thank you for reading!

28 05 2014
Full Spectrum Mama

What she said and what She said…

17 02 2014
Marnie

Wow, change the name to carter and this is our story. I’m surprised by how similar the stories are. Except on Friday I was just given his new diagnosis. We too thought it was SPD. I am feeling so overwhelmed by information, frustration and my desire to do everything I can to help him.
Thanks for this. Helps to know someone feels exactly the same.

18 02 2014
ktonette

I am so glad you are finding that you are definitely not alone! It does feel like it sometimes, though, since Cameron is the very first person I’ve ever met whose been labeled with NLD, and I’m assuming the same goes for you and Carter. I hope you are able to help him succeed in life while still being who he is; that’s what I am striving to do! Thank you for reading!

18 02 2014
Anonymous

Katina,
I love reading your posts. Same story, different kid, many similarities. There will be kids Cameron fits in with, just wait. It has started to happen here, and I never thought it would.
We sure miss you at Butler!

19 02 2014
ktonette

Thank you for that. I look forward to watching him find his “people.” I miss Butler too!

19 02 2014
Anonymous

We are just beginning our journey … Cameron provides the rest of us a gift – he has forged a path that may make our journey just a bit easier 🙂

19 02 2014
ktonette

That’s such an eloquent way of thinking about it. Thank you for that!

14 05 2014
Jennifer

The Sensory Spectrum is hosting a special blog hop of posts from bloggers in June and we’d love to have you participate! Just imagine a list of bloggers sharing their stories about what it’s like to have sensory challenges and what it means to have a sensory kiddo! Read more here: http://www.thesensoryspectrum.com/sensory-bloggers-blog-hop-information/

Joining in on this blog hop will undoubtedly get your blog more exposure as people will hop from one blog to the next to read the stories. I will also be tweeting everyone’s stories during the month and highlighting some on my Facebook page.

I hope you’ll join us!
Jennifer @ The Sensory Spectrum
(and you can find me @ The Jenny Evolution, too!)

24 10 2014
Theresa

My heart is heavy for you. Above all, I’ve realized two things. First, I truly believe that God knew I would be the ‘perfect’ parent for my child, even with my imperfections. My kids didn’t need some pinterest mom, a syrupy sweet mother who would enable them. They needed me, gentle, caring and tough when they need to be pushed to be better. Second, my epiphany this year has been, my kids who have come so far, have done so Because of me, not in Spite of me. You love Cameron Passionately and in years to come, when you can start to see the hindsight, you’ll realize the difference you’ve made in the man he’ll become!

Cameron is always welcome here. Jenny and Preston enjoy playing with him. Preston would get so broken hearted when you weren’t in town, or he wasn’t home yet. He just stopped calling, because he doesn’t take rejection well.

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