Taking the Scenic Route

Monday February 27, 2006

27th February 2006

Monday February 27, 2006

 

 

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26th February 2006

Baby Shower for Zora

My Dad’s side of the family threw a baby shower for the two newest additions in the family, Zora and Anika.  Anika is about 4 months old (born at the beginning of November I believe) and Zora is 2 months old.

I had some technical difficulties with my camera, so some of the photos are much blurrier than I would have liked, but I included the photos anyway.

 

Zora and my Aunt Joyce (Anika’s Grandma)

 

Anika and my Aunt Annie

 

My cousins Michelle (holding Zora), Julie, Barbara, and Julie’s daughter LIndsay

 

Michelle holding Zora

 

Julie (who opened her home for the party) hold Zora

 

Uncle Steve (my brother) & Aunt Joy with Zora

 

Grandma gets her turn holding her favorite grand-daughter (her only grand-daughter too)

 

Proud Grandmas!

Joyce with Anika, My Mom with Zora

Proud Moms with their little girls

Diane with Anika, Me holding Zora.  (btw, Diane is the one who did my hair last week)

 

At home, Zane was very interested in the sacks.  lol.

 

It was a beautiful party and a lot of fun to get together with everybody.  I wasn’t able to make it to the Christmas celebration this year because I was so sick, so it was really a good feeling to see everybody today.

Mom picked me up this morning in time to take me to church too.  It was great to see that church family again.  I grew up in that church and I really felt their prayers during the pregnancy and birth of Zora.  I felt very compelled to let them know how much I appreciated the prayers.  I think that we wonder sometimes if our prayers are really heard and felt and wanted to share my gratitude for their support.  It was a living example of the use of spiritual gifts, the theme of the message for the morning. 

It was a very nice day.  Zach stayed home with Zane during the day, but was able to join us for supper in the evening.  We were originally going to celebrate Joy’s birthday, but she ended up being too tired to make the trip to Wichita, so we just had supper with the 6 of us (my folks and our family). 

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26th February 2006

Sunday February 26, 2006

 

 

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24th February 2006

Friday February 24, 2006

Our day didn’t go quite as we planned.  On the way to the kid’s check-ups one of our tires blew out. (luckily, the passenger side, so he could work on it away from traffic) A State Trooper finally stopped after Zach had the lug nuts loosened.  (bruising his palms in the process).  I was glad. It was nerve wracking to be on the side of the interstate.   It was a good thing too because the car was rocking a bit (from the wind) on his good hydraulic jack.  He ended up using ours to help stabilize things a bit and I am pretty sure it would have fallen off the jack we had if the other one wasn’t there.   Through conversation, I discovered he used to work with a classmate of mine.

Naturally, after the drama, we arrived quite late to the Drs appointment.  They decided to only see Zora since her appointment is more time sensitive.  She is growing well.  She is a bit behind on the “2 month” milestones, but fine with her adjusted age.  She is finally on the regular charts for height and weight.  3% for height, 5% for weight.  Our girl is now 8 lbs 10 oz and 20.5 inches long. 

She asked if we were planning on vaxxing her this appointment, and I told her absolutely not for this appointment.  She gave me a huge stack of papers on vaccines and encouraged me to at least get the pertusses one next time.  She said she would be asking at the next appointment, but I got the impression she wasn’t going to push or threaten me.  She is mostly concerned about Whooping Cough because she is seeing a number of cases going through her office. We are likely to do that vax next appointment, but there was no way I was going to do it without reviewing the literature a bit more and I am waiting until the vax schedule *at least* matches her adjusted age before I even consider it…which means I will be doing a lot of research before her next appointment.

I remembered this time to tell her about the co-sleeping studies done by Notre Dame.  I told her that the comment that SIDs is higher with co-sleeping was bugging me and she needed to look at the studies.  She seemed genuinely interested and re-iterated that she was mostly concerned about there being pillows/blankets that could smoother a baby.  She was respectful of our views on co-sleeping which is really refreshing in this area.

We spent an hour or so grocery shopping after we go back to town.  Zane did such a good job of sticking near us and following directions that it was a really pleasant experience.  I see so much progress in him from how he was even a few months ago. 

This evening we went to the playground for a bit.  The weather, although still windy, was really nice.  We decided to try and get Zane straightened out on “slide” vs. “swing”.  In one of the books he has, he is always mixing the two up and we thought a hands-on lesson would help correct it.  We will see if it worked later tonight.

Some pictures from the walk

 

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23rd February 2006

Thursday February 23, 2006

http://69.20.14.30/discussions/showthread.php?t=414514

Ok, my kids are 15yo twin dds, 17yodd, 23yods, 26yodd.

I came home with infant twins, to a 2yo with severe speech delays, an 8 yo who had severe ADHD, and a 11 yo who had anger issues. Our house was just 1000 sq ft., it was still under sonstruction, no cabinets, or closets. Toys in baskets lined the wall, a twin box spring and mattress served for a couch, plywood floors were always dirty. Ugh. I thought I was going mad.

The 26 yo just flew her sisters to visit her!!! I have a whole freaking week with not a kid in sight, just me and dh. SOudn pretty good?

That 26yodd was the one, besdies her brother, that I though was going to make me absolutely nuts. She never stopped complaining, screaming, was chronically angry and made the entire house a drama every day.

Now she’s giving me a week off.

Ok, so she owes me a few more weeks, but I figure she might be the one wiping my butt when I’m 90.

My ds just decided to go to college. He hasn’t lived at home in years and is supoorting himself while he goes.

dd17 is off to college next fall. I hope! She’s always been easy.
the twinners are self-involved, as are most teens. They need a ride, vast quantities of food, money, a ride, huge meals, gallons of juice, cocoa, water, tea, anything, more money? Another ride.

And finally, a hug, a snuggle, family game day ormovie night.

And dh and I are glad to get another one in, before they too move on.

It’s coming. Even to you, even now. Each day moves you a tiny bit closer to that which we all claim to seek. A few minutes to ourselves.

But life is strange. You get NO minutes for years, then SLAM! 20, 30, 40, 50 YEARS of minutes. Minutes where you long for an interruption, a phone call, a card.

You have the time to sleep, but no need. THe time to cook, but no one to eat it with.

Damn.

All I can say is save this up! Cram it all in like you’re filling a big sack with every bit of food you’ll need for the rest of your life. Few get second helpings. Few of us could stand it if we did!

And get a day off! Even a few hours. Restore yourself, nuture yourself. Take the kids OUT, make them yell and scream and run around till they drop from exhaustion, then feed trhem and do it some more. Then take ‘em home, feed ‘em again (you want ‘em full! ) run a hot tub, pour yourself a glass of wine or a spiffy tea, light a candle, and throw in a video. Use gates to cage them into an area you can see from the tub, even if it means dragging the tv into the bathroom!

Ah, they’re gone 36 hours and I’m missing them.

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22nd February 2006

Wednesday February 22, 2006

 

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22nd February 2006

Wednesday February 22, 2006

In an effort to look like “Mom” instead of “Grandma”, I went over to my cousin’s house and she dyed & trimmed my hair.

Before

 

After

 

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22nd February 2006

Wednesday February 22, 2006

I want to thank you all for the kind words of encouragement.  It helps me as I tryand figure out what to do.
 
 
ummm..no, that disorder is recognized in the US.
 
That is good to know.  Everything I had found so far (granted, I have only been really looking since last Friday, so that knowledge is very limited at this point) said that it wasn’t recognized in the U.S.  How is it classified?  Is it considered at communication or language disorder or a part ofthe autism spectrum?  I would love to know more if this is an area you have knowledge of!
 
 
…but happy that you guys (kind of) have a name forit and hopefully that will lead to more/better ways to help Zane.
 
I agree.  This is why we sought help.  As a friend put it…there is no reason to re-invent the wheel for this.  My instincts on how to relate to him might be good, but getting information from people who have already dealt with similar or the same issues means I don’t have to figure everything out from ground zero.  I am able to take the knowledge and help him to find his way more effectively.
 
 
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 likeZane’s?
 
Funny you mention that.  I don’t have asubscription to Mothering (so pricey, IYKWIM), but Zach happened to pick up this issue for me a few weeks ago.  It got shuffled aside in the insanity of new baby, but I discovered it while cleaning yesterday.  I was going to put it on my bookshelf and the cover caught my attention and sort of sucked the breath out of me for a moment.  Very coincidental that they would choose this time to address those issues.  I have begun reading them and hope to have a good grasp of the information before my pediatrician appointment Friday so I can discuss some of these things with her.
 
 
Did you get Zane Checked throughRainbows United? 
 
Sort of, yes.  They are who I called.  They sent me to WSU’s speech hearing and language labs where we did a screening.  The evaluation we are waiting for could have been done at the main offices of Rainbows United, but they also go out to the schools to do theevaluations.  We choose to have it done at the school closest to us when they come out here because Zach does not deal well with downtown.  He would be so anxious by the time we navigated around, found parking, and walked to the place that I am concerned his anxiety would influence the test.  (did I mention that Zach has some of the same issues Zane does..lol) The school playground is the closest park-like setting to us, so we often walk there when school isn’t in session to play on the equipment.
 
 
…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.
 

I hadn’t heard that stereotype.       As we were reading some of the different descriptions of the various disorders on the autism spectrum, Zach kept commenting that it sounded like either himself, his friends/acquaintances or one of his colleagues.  (He works in the department of Computer Science at a University, his best friend designs & optimizes web pages, and my best friend’s dh  is a network engineer working with UNIX)  I could also see some of the traits in my family. 
 
As geeky as Zach is, he looks like a social butterfly when he walks into a Linux Users Group meeting.  The “pocket protector” crowd is not just a stereotype.  
 
Zach does have a lot more common sense than he once did, but I understand the irony of a genius IQ and difficulty with social nuances.  Zach is much more adept socially than he was when I met him.  His primary defense mechanism then was to weird people out so they would leave him alone and he wouldn’t have to interact.  He has since chilled out a lot so people are more likely to get to know him.  He still does a lot better 1-on-1 than groups or crowds though, unless he is teaching…for some reason, that is different. 
 
 
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.
 

On further reflection, I think that is probably true.  My initial reactionwas an all-or-nothing view.  Incorporating the best of both worlds will go further to helping Zane than one or the other.  I just need to find a path that fits our family the best now.

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21st February 2006

Tuesday February 21, 2006

A highway patrolman pulled alongside a speeding car on the freeway. Glancing at the car, he was astounded to see that the lady behind the wheel was knitting!

Realizing that she was oblivious to his flashing lights and siren, the trooper cranked down his window, turned on his bullhorn and yells, “PULLOVER!”
“NO,” she yelled back over the sound of the siren, “It’s a SCARF!”

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21st February 2006

Tuesday February 21, 2006

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

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  • Zane's age

  • Zane is 15 years, 7 months, and 21 days old
  • Zora's age

  • Zora is 11 years, 7 months, and 25 days old
  • Random Quote

  • Some days, doing ‘the best we can’ may still fall short of what we would like to be able to do, but life isn’t perfect – on any front – and doing what we can with what we have is the most we should expect of ourselves or anyone else. — Fred Rogers

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