Mr. anti-establishment

Ben refuses to be categorized.  Maybe it is the long hair, but he has been doing it his whole life.  As a baby, there was debate about whether he had colic or reflux....Then reflux or GERD....then GERD or failure to thrive.  No one has ever been able to put their finger on Ben.

At the moment, the only thing everyone agrees on is that he has Sensory Processing Disorder, but that is old news.

After his developmental pediatrician evaluation, he got 3 diagnoses....The developlmental ped says he has Early Childhood Developmental Delays, which encompassed the two other diagnoses: Sensory Processing Disorder from the OR and Mixed Expressive-Receptive Language Disorder from the speech therapist.

In following the recommendations, we have started OT and speech.  Two weeks ago, Ben's private speech therapist discharged him from private speech saying that his delays are not severe enough to require private speech.  That same week the teacher of his social skills group asked me if Ben had ANY words as she never heard him talk.  Those are vastly different opinions, aren't they?  When Liam turned 3, we were actually told the same thing....he had caught up and didn't require private speech anymore....Now at 4.5, he has more speech goals than ever and no one is arguing that he is not delayed or that he communicates as well as his peers.

I am not sure what I should do next. Ben is scheduled to be evaluated by the district in March to determine whether he'll require school services.  I wonder which Ben they will get on evaluation day?  The happy, energetic, attempting to socialize Ben or the fearful, clingy, screaming, shutting down Ben?

Big changes ahead for my big guy

I am still struggling with the Kindergarten decision and trying to find someone, anyone in Alabama to answer my questions about the transfer process from 3-5 to kindergarten and how private schooling affects the IEP.

In the meantime, we re-wrote Liam's IEP here in Alaska.  He has a great IEP team here and between his special ed teacher, his speech therapist, and the school OT, we came up with some great goals.  One of the goals is to expose him to the "open play" time in a kindergarten class.  Since Liam's special ed preschool class is located within an elementary school, there are kindergarten classes right down the hall.  The speech therapist suggested she could take him into a kindergarten class to help address his IEP goal of maintaining a conversation for 4 exchanges. 

Today is the big day!  Liam will be escorted into a kindergarten class so he can get exposure to more transitions and so he can practice conversation with some older and more advanced peers.  It will also provide us with some feedback about how he manages in that type of environment and will highlights any additional supports he might need in order to succeed in a kindergarten classroom.

In addition, in mid-March, Liam will have neuropsychological testing to look at areas of skills versus achievement.  I am hoping this testing will highlight splinter skills, as Liam often tests in the "normal" range while lacking age appropriate skills. 

Liam's IEP goals:
-Upon request, Liam can give his first and last name, school, grade level, name of teacher, parent's name's, parent's phone numbers, and address with 80% accuracy.
-Liam will participate in group activities by sharing ideas, making comments, and asking questions in 4/5 opportunities.
-Liam will use proper eye contact and body orientation (baseline is he only does 20% of the time)
-Liam will maintain a conversation for 4 communication exchanges.
-Liam will independently identify and use socially acceptable ways of managing stress and anger (teacher specifically mentioned this being useful in Kindergarten while waiting in line or transitions)
-Liam will remain on task and complete tasks in the same time frame as his peers by demonstrating sustained attention to task or teacher (biggest struggle at the moment)
-Liam will use a tripod grasp 80% of the time (baseline is 20%)
-Liam will use developmental appropriate drawn lines to draw a recognizable picture.
-When provided a completed model, Liam will manage his materials to complete a 3 step visual motor task.

I might need to shout mercy

It has been quiet on this blog, but we have been busy.  The cycle of ABA, OT, ST, play therapy, and preschool runs continue generally keeping me on the rum 9-5 five days a week.  In addition to that, I have been IEP writing, appointment scheduling, and researching school options....and making myself quite anxious about life in general.

That isn't why I need to call mercy though.  See, I foolishly dared Alaska to give me her toughest winter either since I'd be losing out on a winter (as we'll only be here 2 years instead of 3).  I might need to take back that dare.

In an average winter, Alaska receives 70 inches of snowfall (usually between October and April).  In 2.5 months, we got 90 inches......90 inches!!!!!!!!  The record is 132 inches, but if we keep pace, we'll get 180 inches.  We have only gotten 2-3 inches over the last two weeks, so that threat is seeming less likely.  In addition, the average temperature in January is 13.  This January (as of the 27th), we have had TWENTY days below 0.  TWENTY!!!!!!!  And that official temperature is taken at the aiport, which is about 10-15 degrees warmer than good old Eagle River.

So, I sit here with my Peppermint Tea, soaking up a very rare spot of sunlight, and I am thinking Alaska might have won this round.  My white flag isn't going up yet, but it isn't far off.

What percentage of this speech is understandable?

I am not sure that I am vieing Ben objectively.  This video below shows Ben playing with his "dollhouse."  I don't want to lead (with my opinion), but how much of what he says is understandable?

The play he is doing is scripted.  He always puts the family in the same spots.  Right before this video, I tried to have the Mom and Dad interact but he took them from me so he could do his script.  He also struggles a bit with manipulating them, which is why he drops them a couple times.

A herd of moose

Our house had a moose visitor this spring.  This morning we were eating a quiet Saturday morning breakfast when our neighbor called.  He told Dave "I Just wanted to let you know that you have 3 moose in your driveway, but don't go outside!"  I went to our front window and was greeted by this site:

That railing is our front porch!  And there wasn't one moose, but 3...I'd call that a herd.  Actually, it was a family group of a mama with her two babies.  In this photo, mama was in the back and that front baby made lots of good eye contact with me.

This was the view from upstairs:

Back downstairs, the curious baby was checking out our house:

See the pictures below?  That snow is so packed down that the snow blower cannot touch it (we have been trying to widen our driveway).  The moose can break through but is still far from the bottom.  Also, this is close to the end of the driveway pictures from the spring (for comparison of how different things look in winter):

Two of our neigbors came out to get some photos.  They initially were in the cul-de-sac, but that made mama moose angry.  She ran out of our driveway and they backed up.  She felt threatened so she started to leave:

With that, she and her babies went back into the woods behind our cul-de-sac.  Comparing these photos to the one from spring, I am thinking the moose in the spring must have been a male or a juvenile (or both).

The much anticipated and much debated first haircut

I was hands down against the haircut and now that it is done, I hate it.  I keep trying to convince myself it will be alright, but I hate it.

Dave has been driving me up a wall to cut Ben's hair.  He loves the haircut and afterwards said that he feels like a huge weight has been lifted off his shoulders.  He said this has been on his to do list forever and he feels much better that it has been done.

Dave was arguiung Ben needed shorter hair as he looked too much like a girl.  I argue he looks MORE like a girl with shorter hair and refuse to go shorter than we already have.

Before:

During:

the back after the haircut:

the front this morning:

Me at age 3 or 4:

Santa Success!

This year was the 5th year we have visited Santa and the first time we have awake and non-crying boys!  This year Liam not only gets Christmas but he remembers last year's Christmas (not anything specific but he can anticipate what will happen).  Ben doesn't get Christmas but he does understand the concept of Santa Clause from watching the Team Umizoomi Christmas episode, I think.  He keeps saying "Danta Cause, ho ho ho!"

So, we woke up on Saturday morning and told Liam we had two surprises.

The first surprise was going to Stone Soup Group for a special needs Christmas party with a sensory sensitive Santa.  Stone Soup works with special needs families in the Anchorage area.  Instead of having to wait in line for Santa, we had an appointment.  Santa was in a room with no distractions or noise.  Last year, Liam was too overwhelmed to tell Santa what he wanted loud enough for Liam to hear.  This year was a wonderful experience.  Liam climbed right into Santa's lap and declared "I want a big fire truck and an airplane for Christmas!"  While Santa was talking to Liam, Ben was slowly making his way to Santa, while holding my hand.  Ben climbed into Santa's lap and kept smiling and jabbering on in jargon (baby talk).  I asked if Ben wanted a play tent, dinosaurs, or a fire truck, and he said no to everything.  He was talking non-stop and smiling so I told him that I was sure Santa knew what he wanted.

We got this photo:

Afterwards, Liam wanted to stay at Stone Soup and make crafts.  Ben just crying for Santa.  When we left Stone Soup, Ben was crying "I want Danta!" and Liam was crying he wanted to stay to make more crafts.

The second surprise was a train ride with Santa on the Alaska Railroad.  I need to download the photos from my camera, but Liam was beside himself with excitement.  They provided coloring sheets and water, and then came through with model trains to take home and fruit snacks.  There were two sets of carolors going through the train, as well as Santa.  Ben was overwhelmed by all the excitement on the train as you can see in this cell phone self-portrait:



Ben was excited by the movement of the train, but overwhelmed by all the excitement on it.  Liam loved everything about the train.  Both boys were so exhausted from all the excitement that they fell asleep on the drive home.