Anxiety over Ben's preschool placement

This week, the preschool coordinator e-mailed me suggesting that we change Ben to be screened rather than being evaluated.

The difference is: "A screening is much shorter and looks at the potential for delay.  It helps to pinpoint areas of concern.  This does not require an IEP team meeting to complete referral paperwork.   A referral meeting is required prior to an evaluation and requires the full IEP team.  Evaluations are required for eligibility determination, which depends on which category of eligibility the team is considering."

I want him evaluated, not screened, so this threw me into full blown panic.  The coordinator suggested we decide on screening versus evaluation pending his latest speech and OT evaluation.

His OT is still working on his report, but I finally tracked down a copy of his speech evaluation.

The report states that his eye contact was inconsistent and his attention was so limited that he needed near constant re-direction.  He was impulsive and give answers before a question was finished. During connected speech, he had issues with word retrieval and would substitute a word (knife/scissors).  He displayed echolalia. His intelligibility of connected speech was 65%.

That is just over half for a 4 year old.

I am very stressed and anxious that Ben will not receive placement in a developmental preschool.  If he doesn't, I know he will quietly sit through another year of preschool, not engaging in peers or paying any attention to the teachers.  That will make his kindergarten transition a nightmare.

T-Ball

Thank goodness for an angel who came and took photos of Liam's T-Ball games.  Dave coached every game, and Ben couldn't be bothered to sit still.

Liam had a blast and seemed to take to T-Ball like a duck to water.  It was much easier for him than soccer.  I think we found "his" team sport.

Going after a ball:

Batting with Daddy coaching:

Running for home!

Getting someone out:

Game face:

ACSC Graduation Ball

Dave is in a one year military school.  Sadly, it is over.  I will miss the easy going schedule.  There is a graduation ball, so we got the opportunity to get dressed up and have some adult time.

Tomorrow he graduates.  The same day a course starts at the JAG school that he has to take for his next job.  The JAG school wanted him to come in for 1.5 hours before graduation, but he told them no as he used to teach the silly course.  In any case, he needs to go directly to the course after graduation and will be going for the next 2 weeks.  So the flexibility of a student schedule is over and he is back to a normal duty day.

Kindergarten graduation

Liam has had a wonderful year at Frazer Memorial Kindergarten.  I had a lot of angst about putting him in private school and losing his IEP, but given the school situation here in Alabama, it was the best choice for him.

Mrs. Struthers reports he is ready for 1st grade and has done wonderfully.  She said his fine motor skills and writing have developed and improved.  Despite being the youngest in the class, by quite a bit, he is academically near the top of his class.  She said in the beginning of the year, he was more of an observer but now he socially engages with all his classmates.  He does become tearful easily but is working on controlling his tears with deep breathing and counting.  She said that one day she became tearful thinking how much she'd miss her class, and all of the kids started yelling "Do the breathing Liam does; it helps him!"  So he is clearly accepted as part of his class.

I am proud of him and his hard work this school year.  I will miss Frazer and his wonderful teacher.

The battle with strep continues

On Monday and Tuesday morning, I noticed blood in Liam's nighttime diaper. This reminded me of March 2011.  I had a Wednesday afternoon doctor's appointment scheduled for him when Ben's school called on Wednesday morning that Ben had thrown up.  Due to Ben's social language delay, they found a pile of puke and had no clue who did it until they found Ben with some on his shirt and crocs.  A strep test confirmed that BOTH boys have strep.

AGAIN.

What is interesting about this is that Ben had been in underwear for 2 plus weeks and about 5 days before the positive test began peeing in his underwear and went back into diapers.

Let me remind you of the criteria of PANDAS:

Symptom onset includes Primary ONSET of OCD* and/or Tics
along with at least two other following symptoms:

.

• Tics or other abnormal movements
• Severe separation anxiety, Generalized anxiety
• Irritability, Emotional lability, Aggression, Personality Changes
• ADHD, Inability to concentrate
• Sensory sensitivities
• Deterioration in learning abilities and school performance
• Developmental and age regression (inc. Deterioration in handwriting)
• Sleep and night time difficulties
• Urinary Frequency or Daytime or night-time secondary enuresis

*OCD may present as severe anxiety

 

Ben has been waking up early, and repeating everything he says.

 

Liam's hyperactivity, aggression toward family members, and anxiety is over the top.

 

I hope we figure this out soon as I am tired.

Hello Kitty

Ben loves Hello Kitty, pink, princess stuff, and Darth Vader. I love his free spirit and refusal to follow cultural norms.

This post brought to you by the letters D and A.

In February, I wrote about Ben's first appointment for a developmental screening.  He had his second appointment in March, and I got feedback from the psychologist on April 11th.  April was a crazy month; we celebrated 10 birthdays for different kids, started Tball (2 games a week including 7:30pm Friday night games), and had Ben's tonsils out.  That is not the reason why I have not blogged about the feedback session.

Denial isn't just a river in Egypt.  There is the first D word, but there are two more coming.  I guess it cannot be true denial as I sought out the evaluation after being told a year and a half ago that he likely wasn't on the autism spectrum.  Of course, his pediatrician in Alaska told us a year ago to have him re-evaluated by another source, so I did have some reason to seek out a second opinion.

So April 11th has become our family's 2nd diagnosis day (November 3rd is our first).  Rate of autism is currently 1 in 50 children.  Rate in siblings is 1 in 5.  Rate in this household is 2 in 2.  The diagnosis is Autism Spectrum Disorder, based on the upcoming changes to the DSM, but otherwise it would be the same as Liam's, PDD-NOS.

The third D is doubt.  Unfortunately, the psychologist who evaluated him was crappy and her report and pretty crappy.  Ben is on the waiting list to be evaluated by UNC Chapel Hill, so hopefully that will give me some closure. 

I am afraid that people will doubt the validity of Liam's diagnosis.  Generally, I'd say Ben is higher functioning than Liam is.  On a day to day basis, people notice Ben's delays more since he has not received the intensive help that Liam has.

So what led the psychologist to apply the A word, autism to Ben?  Snippets from the report:
--Continued potty training issues
--high pain tolerance
--"his speech was notably inarticulate and difficult to understand at times"
--"repetitive language was observed, he repeated :so soft" four times while touching a doll"
--when asked to describe another doll, he answered brown four times
--"there was little sustained reciprocal communication"
--most of Ben's verbalizations were requests for help
--his scores of the Vineland were higher than only 7% of same aged peers and his scores on socialization were in the delayed range.
--he would not engage in non-preferred activities or those directed by examiner
--his play had a repetitive quality