Thursday, April 18, 2013

Kid Changes...part 2 B....the Bossy Edition

I think I chose to post about Sassy first because there was more going on with her.  But the funny thing, as I look at the titles, is that she was Baby "B" when she was born.  He was Baby "A".  In case you don't know, they letter multiples in the order they are born.....Bossy is 3.5 hrs older than Sassy.  :)

So Bossy.....

Like I said, having boy/girl twins is interesting as you watch them develop.  As toddlers, he was always a little bigger than her.  As they started school, he was still a little bigger, but it was more even.  And now, she towers over him.  Additionally, he is young looking for his age, so people who don't know them just assume she is older by a few years.

Physically, Bossy is no where near puberty.  He has always had darker hair than Sassy, so he does have a very light "moustache" but it isn't related to puberty.  It is just dark peach fuzz.  He is very very thin, and has almost no body fat.  The doctor said it may delay his puberty a little.  Just like in girls, the body needs a signal to kick into gear.  And lack of fat can influence that.

The biggest thing we are curious about is his voice.  He has a paralyzed vocal chord (it was damaged when he had heart surgery when he was 12 days old; we knew that was a risk).  His "good" vocal chord has to cross midline in order for him to produce sound.  The result is that his voice is raspy and higher pitched,  When his voice starts to change, we have no idea how it is going to sound.

Later on, if his voice is an issue, we can give him steroid injections into his vocal chord to "beef them up."  But he has to be past puberty for that, so they know what his final product on his own would be.  It isn't something that is currently on the radar, but we know it is an option.

G-man has not started really talking to him about grown up stuff.  I covered the basic hygiene when I talked to both of them.....why it is important to shower, wear clean clothes, etc.  We don't know if cognitively he will understand more.  He is in health class and will learn about body parts, changes, etc.  But not sure how much he will understand.  He is FAR from ready to understand the emotional implications.

Next school year, the kids will be starting the middle school  This is a HUGE change for Bossy.  We have several meeting set up in the coming week to prepare for this.  The middle school is a little overwhelmed at his program.  See....we are one of the first families that CHANGED THE PROGRAM.  We didn't accept the cookie cutter program.  It wasn't appropriate for him, so we worked to change it.  And now it works.  Well, the middle school isn't used to that, and are being resistant to it.  Too bad.....figure it out.

In our town, we have a school building for 6th grade only, and then one for 7/8.  We have the option to move him right to the 7/8 building, and avoid the extra transition.  However, they don't have an academic program for him.  It would be a social based program.  And while the social aspect is a huge issue, we aren't ready to just abandon academics.  He still has learning to do.

Our neuropsych work up is an issue.  The school testing didn't align with the other testing.  We are left with scores that are scattered.  The neuropsych put his IQ at 68.  The good thing about that....he should qualify for a DSS number (which we have already been denied once).  The bad thing....no one is sure that is accurate.  Additionally, we can still get denied because he has higher scores on other tests.

The DSS number will allow him to access state government programs as he gets older and needs more help.  Right now, we are fine.  But when he is 22....we may need help.  HE will need help.

He experienced a huge cognitive jump last summer and fall, and in true Bossy fashion, has plateaued.  This is how he rolls.....a 6 month period of huge growth and development, followed by years of status quo.  It is frustrating and confusing.  And everyone who works with him is baffled why it happens.  All I can say is that is how his brain works.   Go figure.

In the coming years, we will have to decide what path to put him on.  Most likely there will be a vocational path by high school.  He wants to be a veterinarian.  We know that isn't going to happen....but we are hoping that maybe a vet tech or something like that is attainable.  He just loves animals, and just wants to take care of them.

So, everything is in a state of static flux, if that makes sense.  Lots of changes, but lots of the same.

And just to leave you with a few pictures, if you got this far.....







8 comments:

  1. I love those big eyes of his. Your children are absolutely beautiful!!!

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  2. Completely adorable. Even with challenges he's still soldier'ing along. Good for him. I agree with you, he'll probably tower over Sassy soon... boys do that in the blink of an eye!

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    1. I am sure he will reclaim his status as "big brother" one day, but for now...Sassy is happy to be "bigger."

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    1. Thanks....he was, and still is a cutie.

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  4. Love reading your blog! Glad I am not the only one feeling like I am always on the financial edge!

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