Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Cubbyhole

with 6 comments

Now, some of you may have noticed that there is another little person in my life who doesn’t get as much of a mention as his big sister. There is a Cubby-sized hole in this blog. It isn’t right. He deserves his own write-up.

I’ve been putting off talking about him, because I don’t exactly know what to say. Every time I write a post on WordPress, there is a place for me to ‘tag’ my posts and this puts them in a category. I don’t know how I’d tag my boy, and I don’t know what category I’d put him in. I used to think Aspergers was a binary thing, you have it or you don’t, but Cubby is pint-sized proof that this isn’t the case.

When Pudding was diagnosed, Cubby was only five months old. At the time I was angry with myself (and the world) that I’d missed things in Pudding that were suddenly so obvious. I was determined not to miss anything second time around. But Cubby, like his big sister, hit all the developmental milestones. Just like her, he was born liking fans and lights, and tactile sensory-seeking. Just like her, he developed separation anxiety at a very early age, and seemed over-attached to me. And just like her, when I mentioned these things to the doctors, they told me this was normal.

Even Dr. P, Pudding’s excellent, perceptive, developmental pediatrician has yet to see the signs in him, but referred us to a sibling study to monitor his development.

We’ve had two sessions of the sibling study at the Kennedy Kreiger Institute. Each one is a grueling seven hour assessment, and both times we’ve had to split the session over two visits. The first evaluation found him to be developmentally on target, but with joint attention problems. Joint attention is where a caregiver shows something to the child, and he or she acknowledges this and responds accordingly. Joint attention deficits are considered to be the first indicator of autism. Cubby had some joint attention, but hadn’t mastered it. We went to work on this, and by the time his second evaluation had taken place, he had age appropriate joint attention.

We aren’t allowed to breathe a sigh of relief though, because this time around they found problems with his social communication, something that had been one of his strengths at the first visit. At age 16 months he knows and uses many words, he is developmentally ahead, even putting words together, but there is something about his use of words that is slightly off, or atypical, to use the word which frequently describes our children.  I’m working on his pragmatic skills, and teaching him some basic sign language, which enables both sides of the brain to be engaged in communication.  Perhaps we can get him back on track with this too.  Or maybe there will inevitably be another sign emerge, and then another.

Only time will tell.

For the moment, he makes great eye contact, shares his interests and imitates in play. Our local Early Intervention services will only provide therapy if he has a significant developmental delay, or has a formal diagnosis. Saying that I think he could be spectrummy just isn’t going to do it!

The A-word isn’t so scary the second time around, but that doesn’t stop me worrying about my baby boy. This time we know what challenges may be ahead, and how hard it is going to be to meet them, with our increasingly limited resources.

In January we’ve got our appointments for his assessments, perhaps by then things will be more evident. Until then, he just doesn’t fit into a cubbyhole, he can’t be categorized. He just is who he is, and we love him for it.

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6 Responses

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  1. Oh! He’s so yummy I could just eat him!
    But seriously- I completely understand where you are coming from. When my youngest was a baby, I told myself over and over again that he was “normal” and that he was just copying his big brother.
    Then I started to notice differeces in their quirks and habits and decided to get it checked out for my own peace of mind.
    Because my boy present SO differently with their ASD, it would have been easy to miss initially but a mother’s instincts are usually spot on.
    Having said that- I am not by any means implying that Cubby may be spectrummy but I am merely pointing out that it’s natural for you to wonder.
    But you’re right about one thing, for me- the “A” word was no where near as scary the second time aound 🙂

    fiona2107

    August 17, 2010 at 10:10 pm

    • Oh, he definitely may be. My instincts tell me he is, that he is just like she was at this age, with perhaps a little more language, but more sensory issues too. At least I forgive myself for Pudding now. It really is so subtle that the experts can’t decide either. And whether his is or he isn’t doesn’t make much difference at this point. I’ve learned what works with Pudding and use that on him, and we’ll just see what happens. He is the cutest most cuddly little creature though!

      spectrummymummy

      August 18, 2010 at 7:37 am

  2. Cubby sounds a lot like I did at his age–very verbal (but maybe a little atypical in usage) and sociable-but-odd? Now, at 25, I’m on the waiting list for an adult eval with our local autism centre. You’re doing everything right: whether he is or isn’t doesn’t matter so much as knowing how to teach him best and not being afraid to use the label if it will help him later in life. Your kids are super lucky to have you.

    Ali

    August 24, 2010 at 4:47 pm

    • Aah, thank you Ali. The truth is, it is easier being a parent to a child on the spectrum now than it was even a generation ago. Good luck with the evaluation- I hope it isn’t too painful. Pudding has developed a hatred of blocks because of how many damn towers they made her build- hopefully they don’t do that to adults too!

      spectrummymummy

      August 24, 2010 at 5:39 pm

      • I don’t think so! I had a quick introductory session with them and it was a lot of questions about how I make friends (awkwardly!) and communicate and sensory stuff. It’s definitely easier now than it was for my mom; no one ever really suggested I could have Asperger’s because it wasn’t even an official DSM thing until I was 9. By then they’d labelled me gifted, instead, and twice-exceptional wasn’t a thing then, either. I’m really enjoying your blog (I found you through the Hopeful Parents website after another blogger I like joined up there) and your kids.

        Ali

        August 24, 2010 at 8:17 pm

        • Thank you, please feel free to come by any time, it will be nice to hear your perspective!

          spectrummymummy

          August 24, 2010 at 8:53 pm


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