Student Support Meeting and feeling defeated

Yesterday was a Student Support Meeting for Liam.  It was ill fated from the beginning.....the purpose of the meeting was not entirely clear to me, Dave is out of town, I was awake with insomnia from 1:30am, and on top of all of that, I am sick with what I can only assume is deadly pneumonia (I joke, but it feels that way).

In the room were: Liam's teacher, the school counselor, the school psychologist, the school SLP, the vice-principal, and the principal.

--First import point, I need to insist the AIG teacher attends all future meetings as she knows Liam really well....probably the best out of those that did attend the meetings.

We addressed Liam's anxiety in the classroom.  The school counselor has made him a social story book with photos of him, and suggested relaxation techniques (deep breathing, counting to 10). Now when he starts to get anxious, the teacher directs him to the book.  She said she is more responsive and has learned to direct him to the book before he starts crying.  She reports it is working well and he seems to have more confidence.

--Point for the school: they are writing social stories for him without an IEP and doing some things I'd want written into an IEP, like he takes the book to a quiet corner of the classroom and gets time to decompress and gets a sensory break.

I was asked what I am doing at home to help him manage anxiety and ensure a healthy brain-body connection.  I mentioned he does gymnastics and it was suggested that I look into kids yoga or karate for him.

--Do they really think I am not doing enough for my child?  I am not sure when we would fit in another activity.  I started to feel defensive around this point.

We talked about his reading fluency and this kind of took me by surprise as I had not been told it was an issue though I had some suspicions.  His reading evaluation show he is ABOVE grade level in reading.  His fluency score are BELOW grade level despite this.  Then of course, the fluency was averaged in to the total score which brings it down (but still above grade level).  Because of this, they are "working on fluency by having him read below his tested ability."  They talked to me about having him use a ruler when he reads at home and said this is a maturity thing that he should outgrow around age 7.  I am not sure I believe that.

--I need to figure out who to see to test either his reading or his visual tracking or both.

--I am unsure about this idea that it isn't a big deal especially since it means he is not performing up to his abilities.

Then we discussed Liam's writing, and this was when things really went downhill and I started to feel very frustrated.  According to his teacher, writing is not an issue at school.  The fact that crying ONLY happens during periods of writing is a coincidence and all chalked up to his anxiety.  She claims his writing is "middle of the pack" at school but acknowledges that her class this year does not have many middle students, almost all above grade level or below grade level.  In addition, she acknowledges that he does not form his letters correctly (starts in the wrong place and the result is awkward). I asked for him to have accommodations and the only one completely agreed upon is using the paper from Handwriting Without Tears.

Once again, all the focus was on what *I* can do to help him.  They did agree to keyboarding his homework but declined allowing me to scribe it for him.  At school they would like him to write.  They asked how much I make him write and whether I offer a variety of writing tools (i.e. colored pencils and not just crayons, etc).  They ask whether I do "OT homework" with him and how often I make him write.  He gets on the bus at 6:50am and gets off at 3:15pm.  On Mondays, I pick him up at school and we spend 2 hours doing speech and OT with him and Ben after which we immediately do dinner and bed.  Tuesdays we do homework when he gets home, then eat an early dinner, then take Ben to ballet, and then it is bed.  Wednesdays we go right to gymnastics then do homework then cook dinner then bed.  Thursdays and Fridays he is free after he gets home (other than homework on Thursdays).  Somehow I am supposed to fit in karate and making him write an activity he hates.  When does he get to be 6?  Why do *I* need to remediate his writing?  Is that not a function of school?

Then the SLP asked about his speech.  She cannot work with him on the R sounds but it sounds like she has been watching him and would be willing to advocate for him, if needed.

Then they asked whether I was requesting testing and while they said it was in my right to do so, they did not see how they could prove academic need based on the fact he is at or above grade level.  By this point, I was just weary, and Liam kept interrupting the meeting and I just wanted it over.  The school psychologist asked if I really wanted him pulled out for special education when he is already being pulled out 3 times a week for AIG.  I want him to have an individualized education, which obviously includes 3x a week AIG pull out.  If he needs reading pull-out or special education pull out to meet his needs, then that is what I want.  I am pretty sure, actually positive, he can have an IEP with all his needs met in the classroom and if that is possible, then that is what I want.

--I need to research NC law especially regarding initial eligibility as he no longer has an IEP and needs testing done to be eligible.

--I need to figure out if there is advocacy and if someone can attend meetings with me.

I am pretty sure William needs an IEP

William brought the following papers home from school this week which have me thinking I need to request an evaluation for an IEP.

The one below wouldn't have me too worried normally except he got a whole section wrong and clearly didn't read the directions.

*He told me he was too distracted by classroom noise.*

Then the one where he didn't write an answer, he had traced all the circles and he frequently obsesses and stims on patterns.  I frequently need to re-direct him during home based work for this reason.

The paper below has me quite concerned.

When I saw it, I could not read the writing, but thankfully Dave can.

He got number 2 wrong.

The question was: "How do the pictures in the story help you understand the words." 

William answered: "The pictures show what they are doing."  I couldn't read it and I'd bet the teacher couldn't either.  I guess she could have been looking for more detail but my guess is that is not why he got it wrong.

Question number 5 asked "Why do you think the author wrote the story."

He got it wrong but here I know the teacher couldn't read it because she wrote "what?"

His answer was "The author wrote this story because the author wants us to learn something." which is actually quite insightful for a 5 year old and a 1st grader.

 

At this point, I see two options (since I already met with the teacher):

--Formally request an evaluation

--Request a meeting with his teacher, the AIG teacher, the OT, and the principal (and possibly the school psychologist and/or school counselor) to address my specific concerns. I know Kristin said that the AIG teacher was helpful in advocating for her son and she might be able to show how Liam's output on paper is not equal to what he can do verbally since she sees him so much.

Thoughts?                       

AIG work came home!

William brought his first AIG work home.

The first is a "pieces of me" wooden puzzle.

From left to right and top to bottom, William's pieces are:

Ollie and a drawing of Ollie
SPP (Southern Pines Primary)
AIG (the gifted program)
Ben
a soccer ball
Liam
a musical note
a drawing of his brain (LOL)
August 20
a drawing of New York Strip Steak

As part of AIG, they are learning Habits of the Mind which I am excited about as that was also expressly taught at the highly gifted school in Anchorage.

The puzzle activity focused on thinking flexibly and metacognition.....neat stuff!

The below is blurry but I thought it was super-cool. 

Liam circle in red words that described him:
-brown hair
-doing puzzles
-talking with friends
-friendly
-boy
-having a pet
-tall
-curly hair
-blue eyes
-tan (as opposed to brown)

Liam circled in blue things he enjoys doing....his list was long!
-drawing
-running
-using a computer
-dancing
-doing puzzles
-talking with friends
-arithmetic
-science
-swimming
-helping at home
-reading
-listening to music
-writing
-hula hoops
-computer games
-painting
-helping at school
-having a pet
-gardening
-collecting things
-biking

Liam circled in green words he does well (there were not so many which makes me worry about his confidence)
-ice cream (LOL)
-girl (this had me rolling in laughter)
-science
-having a pet
-gardening
-collecting things
-flowers
-yogurt
-kittens
-steak
 

First Meeting with William's teacher

One positive about this blog now being private is I can process feelings without being afraid someone stumbling over my blog and being hurt by how I feel.

I scheduled a meeting with Liam's teacher to get an idea of how he is doing in school.

I showed up about 10 minutes before class ended.  Liam took one look at me and went into a screaming meltdown about wanting to take the bus.  It was awful.  All the 1st graders were staring at us. I did get to see the little girl he keeps mentioning, Ashlynne.  She sits next to him and brought over his notebook and bookbag.  I wanted to hug that sweet little girl.  Soon after the class left, he settled down.

Ironically, Mrs. Lee started off with how nothing about Liam sets him apart from the class.  I brought up the meltdown and said my fear is behavior like that at school as he did it in preschool.  She said he has not shown any issues with transition, dealing with change, or noise.

She does not see issues with his handwriting.  It is messy and below average in the class but does not think he needs accommodations.  However, when testing his reading level and reading comprehension, he could answer correctly orally but wrote something different on paper....a wrong answer, resulting in a lower reading level group.  Both of these things yell dysgraphia to me and need to be accommodated.  Otherwise I am liking the school, but I feel Liam's giftedness is hiding where he struggles.

He is reading at Level J, but his reading comprehension seems to be about the Level G area.  I did not ask how he compares to other children as that does not matter to me.  I just want to make sure he is working at a level that is challenging but not too hard.

A large part of the meeting consisted on how they will meet Liam's gifted needs.  They are pairing him for group work with one of the other AIG students, a little boy named Graham.  In addition, they are willing to allow him to test out of 1st grade material and work at a different level instead.  I suggested math as an area where he needs to be working at a different level.

I like his teacher and it is clear she wants the best for Liam but I am afraid she is missing the big picture when it comes to writing.

The great Kindergarten debate, debacle, and finally decision

The last 6 months have been very stressful while deciding where Liam would attend school for the next school year.

The simpliest solution would be for Liam to attend our neighborhood elementary school less than a mile from the house.  Initially, my biggest concern with sending him to kindergarten here was due to the fact his birthday is less than 2 weeks from the cut-off, meaning he'd be the youngest in the class and likely the whole kindergarten.  I considered holding him back a year, but the neuropsychological evaluation specifically advised against it and I was counseled that Liam might even need to skip a grade in the future.

The other concern I had about the neighborhood school was based on special education services.  Another JAG family with a son with autism will be placed at a different school in a special education classroom and his family was told the nearest school did not have the support he needed.  I asked for Liam to be placed at that same school, but was told that since Liam will be mainstreamed, they will not place him in a different school unless he struggles.  By law, Alabama has to follow his current IEP for one month, but after that, all bets are off, and based on my experience the last time we were here, I know the support offered with not be adequate.

The third concern was based on where Liam is advanced.  According to his testing, he was doing math, reading, spelling, passage comprehension at the 1st grade, 7 month level in March.  He needs to be working at the 1st grade level in many areas, while making accomodations for his developmental delays.  The neighborhood school's answer to this is to take advanced students out of the kindergarten room and send them to 1st grade. Liam does NOT handle transition well so this solution would have been disasterous.  Liam never did adjust to visiting the kindergarten room with his speech teacher last year in his special education preschool.

This was basically 3 strikes against the public school and made me decide it was not the right placement.  This, however, caused alot of doubt and anxiety as private placement means losing the IEP. 

In May, Liam had a chance to test for a slot at the academic magnet here in Montgomery.  There were lots of issues with this process. I think I vented my frustration about it earlier this month.  In the end, Liam WAS offered a slot at the academic magnet, which claims to work one grade  level ahead.  After arriving in Alabama, we visited the magnet, and Liam would have been able to manage EVERY requirement BUT ONE.  They have student do copywork and write 4 sentence paragraphs that need to be illustrated.  The students do this completely independently while the teacher does small reading groups.  A kindergarten teacher watched Liam write his name and due to his improper grip said he would not be able to meet this requirement.  I asked about accomodations, and it was clear the school would not work for us.  In describing a student with a fine motor delay she had last year, the teacher mentioned that the student's mom mentioned she'd be wearing noise-cancelling headphones at school for 1st grade and the princiapl basically acted like that was an unreasonable thing and the student would be forbidden from doing so.  I don't have the time, energy, or patience to battle that level of ignorance.

So, we called the academic agnet and declined Liam's spot.  It was the right decision for Liam, but I worried that turing that spot down meant Liam would not be challenged.

Way back, I regsitered Liam at a half-day private kindergarten (the public kindergarten programs are full day).  This kindergarten is part of a preschool program, and has 3 kindergarten classes of 15 students each.  The school is at a large Methodist church and teacher reading and math by the A Beka method, and included social studies and science learning centers that rotate each week or every other week.  They formally teach Music weekly and Physical Education daily.  If Liam stayed for 6 hours rather than 4 (optional and offered twice a week), he will get TWO recesses.  It seemed to meet all the needs I had, and given the small size minimizes the transition issues Liam sometimes experiences.  Because it is half-day, Liam will have his afternoons free.

Here is the BIG decision, I will partially homeschool Liam this year.  He has completed the Handwriting Without Tears curriculum THREE times, but still struggles with handwriting and does not use the correct writing grasp.  I am going to attempt teaching his the curriculum myself in order to improve his writing skills.  I hope that ABA and OT will continue to work on this, but I would like to be able to say that I personally did all I could.  I also have ordered some science kits and a multi-sensory grade 1 math program (Math-U-See) in order to teach enrichment in the afternoons and ensure he is challenged academically.  I have a multi-sensory reading program picked out in case I feel like he needs more teaching for reading.  I don't know that homeschooling is in our future, but I do know that it will be difficult to find a school environment that can support Liam's delayed areas and challenge him in his advaned areas.

Now I can finally get excited over the fact that my first born is starting kindergarten....KINDERGARTEN!!!!!!!!  Where has the time gone?

Twice exceptional

2e is the short-hand for twice exceptional, which means a child who has a diagnosis (Asperger's, PDD-NOS, ADHD, etc) and is also gifted.  They are called twice exceptional because they often need IEPs addressing both delayed areas AND areas where they are ahead.  Twice exceptional is long to write out, so the short hand is 2e.

When I heard that Liam is highly gifted, I did not feel excited.  Intellectually, I recognize all the promise that brings.  I understand that Liam will have opportunities that others won't.  As far as special needs go, we have "won the lottery" so to speak as teaching Liam how to fit in/blend is easier than it is for other families.  Do not misunterstand my feelings to mean that I wished he weren't gifted.  A part of me is so excited and proud and feels vindicated because I honestly always knew he was brilliant.  Knowing he is gifted allows me to view his behavior not as an obsessive symptom of autism but as intellectual persistence.  He can be viewed as socially awkward because he is so bright that his brain works differently rather than socially delayed due to autism.

I have still had a mourning period about this newest bit of information, not unlike the mourning I did when I learned of his diagnosis of PDD-NOS.  Reading the report from  the psychologist reminded me that I am not crazy.  Being highly/provoundly gifted bring with it a set of challenges that overlap with challenges experienced by people with autism.  Profoundly gifted is a Full Scale IQ above 145 and Liam's is 144.....his non-verbal IQ is proundly gifted and his verbal IQ is simpley gifted, which leaves his full scale on the line between highly and profoundly gifted.  The more standard deviations from the "norm" a child, the more social and emotional problems they are prone to.  With Liam 4 standard deviations above the norm, you get an idea of the differences between him and most children.  One of the challenges cited time and again about highly gifted children is their extreme energy level and their decreased need for sleep, as well as asynchronious development and being highly sensitive.  If you read that right, those are also some of the challenges about raising a child on the autism spectrum.

All of this also highlighted the idea that Liam will ne an IEP through school.  School will not be as easy as just registering him, at least not until high school when he can take more advanced classes.  Researching the 2e community shows that many parents resort to homeschooling out of frustration and due to lack of options.  They might be able to secure gifted services, but not services for developmental delays.....or it might be the opposite.  Many are reluctant homeschoolers, and all of these problems are made worse when you add in military moves.

I was already struggling with what to do with Liam next year, and finding out this information made things more confusing.  The only thing it clarified for me is that holding him back a year will not help. 

Neuropsychological report: lots of numbers & his teacher's perspective on it

I got Liam's report yesterday, and am still emotionally processing everything, so this post is basically just a summary of what the report says.  I will do a separate post on my reactions when I figure out how exactly I feel about it.

Liam was given two measures of intelligence: Weschler Preschool and Primary Scale of Intelligence (WPPSI-III) and Kaufman Brief Intelligence Test.  To understand the scores of his WPPSI results, see this page: http://www.hoagiesgifted.org/highly_profoundly.htm
The highest he could have gotten on either subtest was a 155 and the highest overall he could have gotten was a 160.
Verbal IQ 129
Performance IQ 150
Full Scale IQ 144
His verbal IQ would have been quite a bit higher, but his score on one subtest was lower than the other area.  The highest a scaled score can be on any subtest is 19.  All of his performance subscales were 18.
His results on the Kaufman were also 144, which places him in the 99.8% on both IQ tests.  His non-verbal score on the Kaufman was a 160.

To test academic functioning, Liam was given the Woodcock Johnson Test of Achievment, 3rd edition.  Like IQ tests, the average score is 100.  His scores varied between a 123 and 188, with most of his scores being in the 140 range.  Grade equivalents were given and Liam's academic functioning is that of a child near the end of 1st grade. His basic reading skills were 154 (higher than the 99.9%) and his math reasoning was a 145 (at the 99.9% level). His lowest scoring area was spelling with a 123 and his highest was writing samples with a 188.

His motor skills were assessed with the Beery VMI and his motor coordination was in the 5th percentile.  His score was a 76, which is just about the cut off for receiving OT services, but compared to his knowledge, this is a huge weakness for him.

His speech was tested with the following measures: Expressive Vocabulary Test (EVT-II), Peabody Picture Vocabulary Test (PPVT-IV), and NEPSY Developmental Neuropsychological Assessment--Second Edition.  All language testing showed him to score above average.

Summary and Impressions: "Liam's overall intellectual abilities are clearly in the highly gifted range and his nonverbal reasoning skills are in the very superior range, falling a full four standard deviations above average performance."  That is a direct quote from the report, and I will note here that scores only have to be 2 standard deviations above average to qualify as gifted and Liam's nonverbal reasoning is 4 standard deviations above. She notes that while his intelligence is a strength, it places him at increased risk for social maladjustment.  His language scores ranged from average to superior, showing some pockets of weakness. His scores of social perception were average which is "well below expectations given his general intellectual abilities."  That is again a direct quote.  During the parent conference, she talked about Liam not being on the autism spectrum, but I am guessing she kept the diagnosis given this.

She talks about his only overt weakness was on paper and pencil tasks of graphomotor precision, and this was despite the fact that he has been doing OT since 24 months of age.  She notes that findings show a "relative weakness" in language related to pragmatic language and conversation, as well as social functioning. "Overall, Liam continues to show patterns of difficulty involving pragmatic language, mildly restricted interest levels, sensrimotor concerns, and difficulty with social integration characteristic of individuals with pervasive developmental disorder."

The diagnoses she gave are:
Axis I:
299.80 Pervasive Developmental Disorder, Not Otherwise Specified
311.00 Anxiety Disorder Not Otherwise Specified
315.4 Developmental Motor Coordination Disorder

Recomendations: She recommends continued "intensive occupational and speech therapy interventions."  She talks about increased fine motor demands in kindergarden and says that it is extremely important that OT not be interrupted and be provided in both the school setting as well as in private therapy.  She cites Liam's problems with pragmatic language as the likely reason for his social delays. She notes that his extreme intelligence is a risk for additional social difficulties. She recommends ongoing speech therapy and social skills groups to address these needs. She notes that "Liam does show indications of significant underlying anxiety."  She says the move this summer will likely make his anxiety worse and recommends formal counseling to address this. She ends by saying that it is extremely important that Liam is in an educational setting that addresses his very superior intellectual and academic skills, and recommends placement in a self-contained program for the highly gifted.

____________________________________

Below is the reponse from Liam's special education teacher about the report, as well as her suggestions for modifications to his IEP.  She has known Liam for 2 years and is such an asset and a wonderful advocate for Liam.  She is one of the many reasons I will be sad to leave Alaska.

"Wow...I just finished reading Liam's report and did not find any real surprises. His intelligence is really up there isn't it :-) I've always known that but it's good to have it on paper for your move :-) With the interspersed delays and high intelligence it's easy to see why there are emotional/anxiety issues. He's going to be (and probably already has been) a difficult boy to raise. But you two have done everything right! The trick will be to keep that going in Alabama :-) I was glad to see that my scores were mostly in agreement with yours (although I don't get to see the real meltdowns and adaptive delays). It's good to know how well he's able to hold it together here (although then you get the brunt of it!)
Thanks for sharing the report with me. I'm glad to know that we've always been on the same page! If there is anything else I can do for you all before you move, please let me know. I'm thinking of giving him support in kindergarten throughout the entire day, at least to start. Then the hours may be able to be reduced (once he gets used to the new, full-day setting). What do you think? If we don't give him 32.5 hours of special education, we could still give him some plus make sure before/after school, recess, and lunch are covered for awhile. And I will be putting in that he'll need a quiet place to go when needed and possibly an individual work station for times needed. What do you think?"

This changes everything....

Last week I got the results of Liam's neuropsychological testing. To say I was shocked is a bit of an understatement. I thought I knew how he did on the test, but I was dead wrong.

I wanted the testing to help with educational testing and to look at areas that might be deficits. I would be lying if I didn't admit that I wondered if Liam is gifted. I am his mom and I think he is special. I spent the week after the testing preparing myself to hear he is NOT gifted, as statistically that was the most likely outcome. I thought I was prepared to hear whatever I might be told, but again, I was wrong.

I was not prepared to hear that Liam tested in the top 1%. I was not prepared to hear he is highly gifted. I was not prepared to hear that due to his intelligence, he has unique needs: a different approach to education (rather than just more work typical of public schools gifted programs). I was not prepared to hear that the disconnect between his intelligence and his pragmatic language skills means he suffers anxiety....and will need therapy sooner rather than later. I was especially not prepared to hear that Liam might not be on the autism spectrum due to the fact that do many if his symptoms of autism overlap with weaknesses of highly gifted kids....or that he might have both PDD-NOS and be highly gifted or something known as twice exception (2e).

While I wait for the report , I am re-grouping and trying to figure out an educational plan. It is clear Liam while never fit any mold and that our path will always be the path less taken. He will always be quirky and social awkwardness will come with his package. On the other hand, I am grateful for the cognitive shift to remind me of all that Liam can do and the fact he is one amazing kid.