Taking the Scenic Route

Tuesday February 21, 2006

21st February 2006

Tuesday February 21, 2006

posted in Uncategorized |

A protected post, for those of you who don’t pay attention to those things.  I am not quite ready to post about this publicly yet.

I have known for a long time that there was something different about the way Zane was developing.  I wasn’t too concerned, most of the time, about his late verbal abilities because he was following Zach’s developmental path.   In the last 6 months or so I notices that despite the fact he was gaining a lot of words, there was something not quite right.  He wasn’t engaging in true conversations very often.  I couldn’t quite put my finger on what was going on.

Last Friday we took him to a developmental screening.  When we were filling out the paperwork we struggled with how to answer a lot of questions because so many of the questions could be answered “yes, but…” instead of just yes or no.  One of the comments we made is that we weren’t worried about his receptive language, just his expressive language and his apparent lack of conversing.  During the developmental part of the exam the ‘eye opening’ question was when he was asked to name the four animals on a card.  He could name them easily and clearly.  Then he was asked which one could fly.  Now I know that he knows that birds fly because I have seen him point at a bird flying and say “bird”, but he could not answer the question.  After waiting a bit, it was obvious he wasn’t going to answer, and I jumped in and asked if I could rephrase the question.  He said yes, and as I went to form the words it struck me that I constantly do this for Zane.  I constantly help him interpret the world into something he can understand.  I had a hard time re-wording the question because I was so distracted by the realization.  I didn’t even realize, until that moment, that I did that. 

It is apparent that he has a language processing disorder or delay (I just learned from reading that they are two different definitions, with delay meaning it is less pronounced than disorder).  After much googling, I found a paper, which led me to a website, that really describes Zane well.  I think he has Semantic Pragmatic Disorder.  From what I am gathering, it is something that autistic kids have, although you don’t have to be autistic to have this disorder.  Other people put it on the high functioning end of autism, much like Aspergers (although Aspergers kids have earlier development of language, and lag in social where SPD kids lag in language and are more social).  What struck me is that it seems to be a more intense version of Visual Spatial Learner for the most part…something I am sure that both Zach and I are.  Zach feels like he shares a lot of the same characteristics with this disorder too.

Now comes the fun part.  As far as I can tell, this disorder is recognized in the UK, but not in the US.  I am not sure if it is lumped together with Pervasive Development Delay (on the autism spectrum) or something else.  I am pretty sure Zane isn’t ADD or ADHD (also part of the autism spectrum, btw) and I am pretty sure he isn’t full-blown autistic, but I don’t know how they are going to categorize him.  I know I need some help with figuring out how to help him because I was out of ideas.

This is just shaking me at my core.  I intended on homeschooling and now I am facing the fact that he will likely do better in a special needs classroom, at least until he gets past the hump with the language/communication issues.  I just was blind to how much I compensate for him and am able to ‘read’ his needs without the verbal input.  It is both a testament to how strong of an attachment I have to him, and how that strong of an attachment made it difficult for me to see how differently he really was to the rest of the world.  I didn’t realize that it was so hard for the rest of the world to understand him because I could.  I didn’t realize how hard it was for him to understand the rest of the world, at it’s face, because I was able to help him navigate it. 

Adding to this, today we took him to the dentist.  *sigh*  I have been avoiding the dentist because he wasn’t acting like he was having any pain and I was scared of how it was going to go.  He is very reluctant to let any part of his head be touched…his hair, his ears, or his mouth.  Brushing teeth is a nightmare.  He wasn’t very willing to submit to the exam, but they were able to brush his teeth a bit and do a basic exam.  No x-rays or anything.  The dr. saw 3 small cavities.  I have to take him to a pediatric dentist who is able to fill the cavities (and possibly do the x-rays and cleaning) under sedation at the hospital.  At least I know the dentist we are being sent to is very gentle and good.  Robert’s middle child had to go to him to get his teeth capped in much the same situation.  The soonest I can get him in is at the end of April, and then another 4-6 weeks to do the procedure at the hospital.  This really sucks on so many levels.

eta:  this paper describes what is going on pretty well

This entry was posted on Tuesday, February 21st, 2006 at 4:33 PM and is filed under Uncategorized. Both comments and pings are currently closed.

There are currently 8 responses to “Tuesday February 21, 2006”

  1. 1 On February 21st, 2006, mamafish said:

    ummm..no, that disorder is recognized in the US.

  2. 2 On February 21st, 2006, that_0n3_g1rl said:

    I understand what you are talking about a little bit.  My brother and my dad have Aspurgers Syndrome *although my brother has actually been diagnosed with it, my dad hasn’t, because he’s too stubborn to go to the doctor, but we can just tell* and we think that Matt might have it as well.  *After so long, you can just tell sometimes*  Joe *my brother* went to public school for the first couple of years, and then did homeschooling, and it went fine. *I know what Zane has/might have and Aspurgers is different, but I thought maybe if even with Aspurgers, h/s worked, maybe with that it might work, after the basic stuff anyway?  I’m not that smart when it comes to stuff like this, so I don’t know.  Hope you can get stuff figured out so everything works out. 

    God bless you and yours

  3. 3 On February 21st, 2006, tatiana622 said:

    Hugs, mama, as you find your way through this new challenge.

  4. 4 On February 22nd, 2006, juliepersons said:

    ((hugs)) there are a great number of parents homeschool their children who fit in all areas of the spectrum.

    Don’t give up hope if that is important to al of you.

  5. 5 On February 22nd, 2006, mischievium said:

    (((BIG hug)) Well, JenniferZ, I’m sad that Zane is struggling with language delays, but happy that you guys (kind of) have a name for it and hopefully that will lead to more/better ways to help Zane.

    You know, the latest issue of Mothering talks about all sorts of “cures” for Autism (chelation, homeopathy, diet, etc.), I wonder if any of those things would help in a case like Zane’s?

  6. 6 On February 22nd, 2006, bionicsquirrel said:

    Did you get Zane Checked through Rainbows United?  That is who is providing speech services for Zephyr right now.  They are pretty great over there and it is free.  I read the article and it does sound a lot like Zane, but you know, it sounds like a lot of math/science/computer wiz’s out there.  You know the stereotype about the scientist who is so smart, a genius, but has really poor social skills.  Or the one who understands these complicated programs and theories, but has no common sense.  It makes sense that this disorder is actually more prevelant than people know.  It must feel at least somewhat of a relief to have a name to the problem.

    Personally, I think that it is better to homeschool when your child has special needs then to not.  You can always continue working with an organization who can help Zane, but he doesn’t need to go to school for that.  Lets talk.

  7. 7 On February 22nd, 2006, Jessemommy said:

    (((((hugs))))) I’ll be thinking of you and your dh and Zane…

  8. 8 On February 23rd, 2006, freeformlife said:

    I like the word quirky. I think the world is a lot more accepting of quirky people now than it used to be… and it probably doesn’t hurt that so many quirky people have done cool and wonderful things.

    And he’s only 4. Even if he’s processing things differently now, he may very well learn these skills on his own, just a little later than average. I remember translating things for R when she was 3 and 4, and she’s so totally not quirky like this (although I am, and my dad is). She was a fairly typical little kid…

    I guess my tendency is to watch and wait and respond to issues as they come up, rather than to the diagnosis… especially with a young child. YMMV, obviously…

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