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

Autism Positivity Flash Blog--ausome boys

I am the lucky mother to two ausome boys.

Science Kid is an ausome 5 year old who loves science, penguins, and Star Wars.  Despite the fact that everything from language to social interactions to motor skills has been more difficult, he maintains a positive attitude.  He asks a million questions a day and makes me choose my language carefully.  He is sensitive and loves deeply and believes everyone is a friend.  He challenges my intellect and helps me see the best in people.

Word Boy is an ausome 4 year old who loves anything pink, Hello Kitty, spinning in circles, and Star Wars.  He is wary of others and relies on me to help him relate to the outside world.  He is ausome in his unconditional love for me, the biggest squeezes he gives me and his father, and his energy level which never seems to decrease. His sense of humor and sweet high pitched voice and love of seeming contradictory things (princesses and Darth Vader) make me laugh countless times a day.

Autism is what makes my boys ausome.  I wouldn't want them to be any other way.

Video blog of symptoms and improvements

In the month of April, I have been posting autism facts and myths of Facebook.  I have been pleasantly surprised by the support of my friends.  I begin to think of a way to really show the symptoms and vast improvement.  This is hard as it causes me to face the past.  For the sake of helping others, here is my autism fact of the day....video proof of symptoms and improvement.

This video is Liam at 17 months, trying to ride his Little Quad.  I say his name several times but he never responds to his name.  In addition, he needs help working it but never looks to me for help. At the time, I just convinced myself he was concentrating hard, but no toddler responds like this all the time:

23 months, arm flapping:

This post shows the difference from his talking at age 2 (before therapy) versus age 3 (after therapy): http://routhierfam.blogspot.com/2010/08/comparison-from-year-ago.html

Liam dancing the Wiggles by memory: http://youtu.be/WJAmgOf40vA

Liam in a meltdown:

Video Liam made at age 5:

 

Social Breakthroughs

Liam continues to develop by leaps and bounds and amaze everyone who meets him.  We have had two social breakthroughs recently.

First, Liam has a female friend from school....one he made on his own without my help.  It is reported she saves seats for him at lunch and she has gotten him to play Barbies.  I took them to the ballet and to say they were adorable to watch is an understatement.

 

 

Second, Liam initiated a conversation about something that interested me.  He tends to talk "at" you and not much wait for you to respond.  He also has tendency to ask repetitive questions and to focus on only things that interest him.  I was shocked Friday morning when we had the following conversation:

 

Liam: "How was your beer tasting last night, Mommy?"

 

Me: "It was a wine tasting, not beer.  I had a wonderful time.  Thank you for asking."

 

Liam: "How many wines did you try? 5?"

 

Me: "No, I tried 7 wines."

 

Liam: "Oh, 7 wines!  Which one was your favorite?"

 

Me: "My favorite was the Pouilly-Fuissé."

Liam: "Oh, the Pouilly-Fuissé (I giggled inside as he said that like he knew what I was talking about).  Was it the number 5 wine?"

Me: "No, it was the 2nd wine."

Liam: "Well, we should buy some if it was your favorite."

Me: "That is a wonderful idea and I did bring some home so Daddy could try it."



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?"

Difference between a meltdown and a tantrum

So is it a tantrum or a meltdown?

The SPD blogger network has an excellent post describing the difference between a trantrum and a meltdown in this blog post. The basic difference boils down to a tanturm being a manipulative fit and a meltdown being an emotional response to an unmet need.

As I mentioned earlier today, Liam was due to visit a Kindergarten class as part of his speech therapy at preschool today. Hint one: change in routine.  He got off the bus and was a bit emotional, immediately asking to play with our neighbor.  I asked about his visit to the kindergarten classroom and he told me he didn't go as all the kids were gone snowshoeing.  Then he started to ask me if he could snowshoe.

We get inside and I see an e-mail from his teacher, and it mentions that today did not go well.  Liam DID go to the class when they knew the kids would be out of the room to the meet the teacher.  When he returned to his normal classroom, he started to meltdown and could not communicate why to his teacher.  Then they were out of time and he came home.

So I ask Liam if he got upset at school.  He said something about a van and then fell into a meltdown.  The video above was taken 5 minutes in.  I literally could not get video any sooner as Liam was trying to kick me and was hitting himself on the head.  I waited until he was not harming either himself or me and then took this video.  I never was able to calm him down using the techniques his teacher uses, so I sent him to his beanbag.  It took him about 5 minutes but he calmed down and came back to me.

I let him talk for a bit about other things for a few minutes before I tried again to ask why he was upset.  He tearfully told me "I didn't finish coloring my van." Then he started crying again.  This time he accepted cuddles and calmed down as I held him.  From what I gather as Liam was not able to elaborate, visiting the Kindergarten room interfered with him finsihing an art project.

Clearly, Liam was not tantruming or trying to manipulate anyone into meeting a want.  Instead, he was in emotional distress.

Edited to add that I just heard back from his teacher, as I described what happened when he got home, and I was trying to figure out what he was saying about the van.  This is her response (and again, I love his teacher and am sad we are moving as she would be a great resource for his K teacher):

"You know...come to think of it, Liam got upset once before when we didn't finish our art project before it was time to go home. So maybe that's all that it was. We were doing a picture of a van in our writing books :-)
But from now on, she'll be taking him a little later in the day and his work should be done (but these are the types of situations I need to continue to set up to get him used to change and so we can continue to talk through problems that will arise. He understands the concept of calming down by placing his hands on his belly, naming the emotion, and taking belly breaths to get through things that are stressing him out. But I want him stress free for his visits to the Kindy classroom so I'll set up other times when he'll be in the classroom here. ) I'm sure the next visit will go better because there will be kids in there. Plus, once he's worked through something with us, he can usually handle it the next time it happens :-)"

Too much for one post

But I'll try to squeeze it in anyway.  I am sure the monotony of the therapy posts will make my readers miss my sleep posts.

The good news in this house is that Liam will be having a formal OT evaluation at school and will have OT goals added to his IEP.  This doesn't sound like a big deal, but it really is.  Schools are notoriously reluctant to provide OT, and Liam hasn't qualified for OT at school since aging out of Early Intervention at age 3.

I have been obsessing thinking about obessing about whether to send Liam to Kindergarten next year or whether to hold him back a year.  There are pros and cons to either decision and I am frozen in terror that I will make the wrong decision.  My anxiety is through the roof.

I got the full report from the developmental pediatrician.  Ben was tested at 30 months.  His receptive language and social skills are the level of a 16 month old.  That is a 50% delay in two areas.  His fine motor skills are that of a 20 month old (33% delayed) and his expressive language is about that same level.  What blew me away is that he shows 4 symptoms of autism.  6 symptoms in 3 categories are needed for a diagnosis of autism, but Liam was diagnosed with PDD-NOS with 4 symptoms.....and now Ben has 4 symptoms.  There is more to the report, but I cannot stop fixating on the severity of his delays and the number of symptoms of autism.

There is stuff related to moving.  The military ships one car.  How will the other move 5000 miles?  Our tenants will be staying until summer 2014, so we need a house to rent.  Therapy to set up for the boys, two IEPs to transfer over, wait lists, and figuring out school.

We are hosting Thanksgiving next week, and will have people Dave works with at our house.  I haven't even started to prepare.

Ben has a cold and has thick yellow snot pouring from his nose.  I am at the start of a cold.

I cannot stop myself from feeling anxious and paniced no matter which issue I try to focus on first, and I am having a hard time priortizing. 

Breaking news: Liam is brilliant

I met with the teachers today at Liam's morning preschool.  The big point she wanted to make is that Liam is brilliant, but as his mom, I already knew that.  His obsession with numbers means that he easily adds and subtracts.  He can group to make math easieer and notices patterns.  Within seconds of entering the classroom, he announces how many "wonderful friends" are there that day and the names of who is absent.

She thinks we can reduce the days that his ABA aide attends class to just 1 of the 3 days.  She mentioned how happy Liam is and what a joy he is to have in class.  Her only concern is that there is only one friend he really wants to play with and he needs prompting to interact with other classmates.  I asked about some of his difficulties at circle time and she thinks Liam is "just shy."  I asked about his reluctance to color and she said it is normal for little boys.

All in all, it was a good conference.

As far as a Ben update, he will start OT and speech next week.

An example of Liam's social skills and odds/ends

This story does deserve to be a post in its own right, but part of the reason for it is avoidance.  I will be posting about Ben's developmental pediatrcian appointment when I am done processing it.  For now, I will share his enormous growth.  Since a developmental pediatrician is a M.D., he had a well baby check while we was there.  Ben is 36 inches tall (40th percentile) and 28.5 pounds (I think it is 20-25th percentile).  His head was slightly above 95th percentile, so some things don't change.

It is cold here these days. In case, you need proof....

It was 17 degrees at 10am when Ben and I took a hike along the river.  There hasn't been snowfall yet, but the river banks are covered with frost that will stay on all the tree branches until March or April. 

So, back to the story about Liam.  Yesterday we went to an indoor playground on base.  There were 3 or so 5 year olds there as well.  One little boy was acting as the leader and developed a game he called "banana."  As far as I could tell, it was tag but instead of being "it" you were "banana."  He mostly used the game as a means of hugging the cute 5 year old little girl who was also playing.  I was shocked as how emotionally advanced these kids were, but I am probably not the best judge of "normal." 

The little boy wanted to include Liam in their game and attempted several times.  He tagged Liam and told him he was "banana" to which Liam started crying uncontrollably and saying "I am not a banana!"  I explained the rules of the game to Liam, and he just kept sobbing saying he didn't want to play, so I guided him through the steps of communicating that with the little boy.  The little boy tried one or two more times, but Liam would just keep his head down to cry so he eventually gave up.  Finally, Liam just came and sat next to me to take a break.  During this break, the little girl asked Liam to hide under the table with her and the two of them made their own game of "hide from the little boy."

Liam was occupied so I focused on Ben who kept crying because he couldn't climb through the tube which had an incline to it.  I checked  on Liam a couple times and noticed the little girl knew his name was Liam but he just kept calling her "girl."  I prompted him a couple times to ask her name but it wasn't effective apparently.  Finally, it was time to go and Liam told me "I want to keep playing with the girl.  It is not time to go."  I gave him his transition counting, and he hopped up and walked away and from a distance said "Bye girl!"  And then promptly seemed to forget all about her.  As we were walking away she yelled out "Bye Liam, I had so much fun playing with you.  Can you come back here tomorrow so we can play again?"  Liam never answered as he was already asking me if we had juice in the car.

That is an example of how a preschooler can look normal and function at a basic level in a social situation but have an inability to interact appropriately.  On the plus side his nonchalance will drive teenage girls wild.

Odds of autism in siblings and other anxiety evoking thoughts

A recent study was released yesterday showing that odds of autism for children with a diagnosed sibling are significantly higher than once thought.  I blogged about the odds here and felt a bit twitchy about Ben having 1 in 20 odds of a diagnosis.  This new study shows that 19% of children with a sibling on the spectrum will also receive a diagnosis.  When talking about boys, that percentage is even higher....25%....a 1 in 4 chance.  I heard about this earlier in the day while dealing with a puking Liam, so I kind of shoved it to the back of my brain.  Then last night Dave comes home having heard this study on NPR and Dave is shaken and tells me how anxious it makes him.  Dave is a rock; little worries him.  In our relationship, I am the one who does all the worrying, and if he is worried, then there is a good reason.  Honestly, those odds scare me so much that I sti;ll don't have the ability to think about it too much.

I STILL haven't heard from the developmental pediatrician...the only one in Alaska that Ben was referred to months ago.  Several weeks ago, Ben's OT through Early Intervention said he contacted her to ask her opinion, which was that Ben needs an evaluation from a specialist.  I have talked to Liam's BCBA about Ben and she said he reminds her alot of her oldest son who was diagnosed with Asperger's at the age of 7.  In my heart, in my gut, I still think he doesn't meet the criteria for being on the spectrum and just has sensory issues at play, but I am not exactly an uninvolved party.  When I am honest, I know that Ben ignores most people and chooses only to engage with me and Liam.

Liam starts special education preschool next week.  I wouldn't be anxious except none of his classmates will be the same, and despite my explaining this to him, he doesn't understand it.  In addition, his teacher is having surgery so he'll be starting the year with a substitute.  The school's SLP retired and there will be a new one; the SLP who retired was excellent and I am having a hard time imagine anyone as good replacing her.  We were supposed to go to the school yesterday to meet his teacher and tour the classroom, but he was puking, so we couldn't.

Next week I meet with the church preschool that Liam will start in September.  I have massive anxiety about this.  Will he get kicked out for potty accidents?  Will other kids pick up on his differences and ostracize him or make fun of him?  How will he deal with a larger classroom with more kids?  How will Ben and I manage being always on the go?

Seeing him through the eyes of others

I was reminded yesterday why I don't post about Liam's progress: I am always afraid it will be contradicted the next day and that is exactly what happened. Liam's SLP brought him out after his session and was trying to talk to me about Liam's session. She had asked Liam what we did on vacation and he said something about the forest and alligators; she wanted to know if we went to a zoo or something. I haven't blogged yet about our trip to Homer, Alaska, but I assure you in Alaska there are no alligators and on the Homer spit (about 4 miles long and 1.5 miles wide and surrounded by water), there is no forest. In the middle of this frustrating conversation where I realized Liam STILL cannnot convey a simple answer to "what did you do last week on vacation?" a cell phone rang in the waiting room.

To be polite, the woman whose phone rang went into the entryway so as not to disturb me and the SLP.   Her 2 year old followed her and took with him a toy from the waiting room. Liam knows the rules are that toys stay in the waiting room (he sometimes wants to take the toys home). Instead of telling me or the SLP that he was upset, he simply started crying and screaming. We couldn't figure out why he was upset for a couple minutes. In the meantime, Ben freaked out because Liam was crying and I was holding him.   Now, Liam was partially crying because Ben's crying was upset him and he could not calm himself down about the fact the toy had been in the entryway.

The woman and her son came back into the waiting room, looking confused as to why Liam was so upset. This only upset Liam more, and he started pacing around the room, circling the toddler, and rushing up to him, getting in his personal space, all while screaming at the top of his lungs and flapping his arms. It was one of the those moments where I see Liam as how he appears to other people, especially as his behavior was so characteristically autistic. I have seen that behavior several times from older, lower-functioning teen-agers in that same waiting room. I could see the worry on the mom's face as she didn't know Liam and she didn't know if he'd hurt her little boy (who was smaller than Ben). Liam was staying in between her and her son. Bless her, as she didn't interfere and trusted me and the SLP that we would control Liam. I was confident he wouldn't hurt the little boy, but I would have been just as worried in her place. Liam was clearly out of control. I kept trying to get him in a bear hug to calm him but he would scream louder and wiggle from my grasp and go back to rushing up on the little boy. Finally, the little boy gave Liam the toy, and eventually through lots of quiet talking, Liam calmed down.  He didn't want the toy; he just didn't want it in the entryway.

Leaps forward....mostly good but with a dose of defiance

I figured I'd share more photos taken by S. Jordan Photography as part of an update on Liam.

At one point, most of Liam's porfessional photos looked like this:

But in the last year, he has learned to look at the camera and smile and show off his beautiful eyes.

During my last update on Liam, he was in the middle of a huge regression and I am happy to say that it is over.

One of the most exciting things for me is that he is about 90% potty trained.  He is having accidents about once or twice a week instead of several times a day.  He can pee standing up and is requiring less assistance in the potty.  He is not at all night trained and still soaks a big boy pull-up (Good Nites) and even pees through to his bed most nights.  It is really common for kids on the spectrum to not be night trained until they are teen-agers and I am definitely thinking it will be years before Liam is ready for that step.  Thankfully, it is not disruptive to social interactions at this point in time.  Even more exciting is that I haven't had to buy pull-ups (except for the Good Nites) for months and am spending less and less time helping Liam potty.  I am pretty sure that he will have no problems managing at the chuch preschool in the Fall.

Equally exciting is Liam's language as he has made huge leaps.  He is answering questions on a more regular basis, asking questions, and even sustaining one or two back and forth bits on one topic.  After waiting nearly 4 years, I can have short conversations with my sensitive guy.  For the most part, I love hearing how his mind works and it gives me alot of hints to what sensory input he is needing at the moment or when he is building up to a meltdown.  The ability to communicate has made parenting Liam fun and rewarding.

With typical language comes typical behavior of 3 year olds that talk.  With Liam's language and social delays, we had no terrible twos....or at least nothing like what I saw my friend's experience.  Liam's newfound ability to communicate means a new found ability to talk back, question mom's authority, and just be downright contrary.  Liam has always been spirited and willful and has alot of issues related to wanting to be in control.  This has made for some tense times at our house.

I have found that this level of language requires a whole different set of parenting skills.  I am behind the ball as parents usually have a year or so while their children go through speaking phrases, simple sentences, answering simple questions, and finally sustaining conversation.  Liam did all of this much faster and my parenting hasn't yet caught up to his skill level.  Liam likes to contradict choices I give him and tell me "No Mommy those are NOT my choices.  Stop saying those choices!" while crying and then adding "My choices are to eat an ice pop (at 8pm) or watch Diego."

Liam is also exhibiting lots of silly and boy-ish behavior.....non-stop potty words through dinner time, yelling inappropriate things, talking about people's butts, giggling at farts.  I am really feeling out-numbered these days.

Liam still has delays and all this progress has brought with it a rash of sensory seeking behavior.  These days he is putting everything in his mouth.  People always worry about small items near Ben, but he never puts things in his mouth, but yesterday I had to pull out a Thomas the train size barrel from his mouth.  I have given him things to chew on and he keeps getting ice to chew on all day.....but it isn't enough.  He has started clicking his teeth for hours a day, chewing on his fingers, and generally behaving like a 6 month old in the middle of teething.  He has also been seeking out lots of crashing behavior but thankfully it has been nice out so we spend lots of time outdoors.

Socially, he is doing better, and seeks out kids to play with often.  His interactions are off quite a bit still, and it interferes a bit with kids wanting to play with him.  He doesn't make eye contact and generally is looking at the ground while talking and has a tendency to either shout or whisper.  He wants freedom at playgrounds so he spends quite a bit of time out of earshot from me so I don't always know how he is being treated but I always note when kids walk away or exclude him by body language.  Yesterday though, he met a 5 year old girl and they played together for about an hour.  It gave me hope that he will be just fine socially.

Mini-break

I have loved the term mini-break ever since I read "Bridget Jones" and I love traveling, but particularly like traveling in bite size portions.  I have taken a handful of 7 day or longer vacations/trips, and I always find that I am ready to go home by day 5.  What I excel best at is going somewhere for 3 or 4 days and sight-seeing at break neck speed.  Just ask anyone who traveled in Europe with me.  I came prepared with an itinerary and even in big cities, we'd hit major things to see in just a few days.

Then my boys came along and my mini-breaks screeched to a halt.  We visited family in Christmas 2008, but that was a long trip and painful for all involved.  We took 2 week long trips to Florida.  The first was when Dave was there for training before he deployed and we didn't have any time to see much.  The second time was after the deployment when we stayed at a dear friend's parents' house.  Ben didn't like the beach or the heat and we struggled to find something to do that didn't cause him to scream.

One of the main reasons my boys don't travel well is special needs.  Liam is on the autism spectrum and changes in routine cause him stress.  Both boys have Sensory Processing Disorder which means they have trouble interpreting sensory information.  I cannot control their environment while traveling, so this causes more issues for them.

We took a trip to Seward this weekend (pictures coming) and it was mostly successful but the issues they have with traveling were highlighted.

Liam became obsessed with the idea of "the little house" and began to repeat questions about it.  When are we going to the little house?  Will there be other kids there?  Will my toys be there?  It made for a long drive to Seward.  Once we arrived, he wanted to be at the little house, and he didn't want to leave.  He was so excited about going there, he thought that was the whole idea of the trip.

Lesson learned: Liam has anxiety over schedule changes and I really need to start implementing a picture schedule.  Almost all kids on the spectrum need one and hopefully it would help eliminate some of his obsessions.

Our first sight-seeing stop was a Dog Sled Tour.  When we got to the "sled" the dogs went crazy.  They LIVE for pulling sleds and were barking like crazy to be picked to be hooked to the sled.  The barking was too much for our dog lover Ben and he went into full meltdown mode.  Then the dogs started pulling the sled and his meltdown got worse.  He finally started calming down, by the time the ride was almost over.  Then we got to see puppies, which went well for the most part, except I had to protect the puppy from being squeezed to death by Ben as he seeks out tight squeezes.  Finally, there was an informational portion about running the Iditorod, except I didn't hear any of it because Ben was literally running circles around the property after recovering from the meltdown.

Lesson learned: Ben is sensitive to auditory stimulation and to vestibular input he doesn't control (the dog sled and swinging) but he seeks out tactile input (puppy fur).  He also seeks out hard squeezes and requires non-stop running.  I really wanted to do a wildlife cruise, but Ben on a boat for 4 hours or longer would  have been a nightmare.

The day we left, I wanted to check out a coffeehouse in an old church that doubled as an art gallery.  We planned to eat breakfast there.  As soon as we walked in, Liam started saying "It smells too much in here."  He became agitated and wouldn't sit down, repeating about the smell.  We decided to leave as he was starting to cry and pace.  I asked Dave if he thought the coffee smell was overwhelming Liam, and Dave said he smelled an old musty smell like old books, and maybe Liam picked up on that.

Lesson learned: Sometimes it just isn't worth the battle.

All in all, it was a good trip.  I don't know if we would have experienced more problems if we stayed longer or if there would have been less problems.  In any case, I hope that things start getting easier down the road.  I am not sure how to work travelling around Ben's need for constant movement.  I am wishing Liam could learn to read sooner rather than later so I can write a schedule instead of drawing pictures. I miss travelling and am determined to find a way to accommodate my boys' needs with my desire to see new places.

Last Day of School

Yesterday was the last day of school.  This meant several things....a small party, saying good-bye to friends moving to Kinergarten, panic from Mommy about how to keep busy over the summer, getting a CD of pictures from the teacher, and Liam's progress report on his IEP.

This was my favorite photo of Liam from the year:

To show how much he changed, here he was the first day of school:



Now, let's talk about the IEP stuff....I'll put in photos for a visual break from all the depressing IEP stuff.  For comparison, this is the March progress report .

First goal is answering 2 "wh" questions about his school day.  At his last progress report, he could do this without any visual prompts 20% of the time.  With visual prompts, he could answer both questions 40% of the time.  This quarter showed slow progress.  He could answer both questions without a visual prompt 37.5% of the time and with a visual prompt 37.5% of the time. 

The second goal was Liam will manage his behavior in effective ways. In role play activities, Liam will learn, practice, and use strategies for dealing with stress in 3 out of 4 trials. Baseline is that stress causes Liam to become tearful and once upset can no longer communicate. His biggest problems are dealing with change.

Liam learned deep breathing and counting to 10 as strategies for dealing with stress.  Progress report shows that before learning these strategies, Liam was able to control his responses 40% of the time, and after learning the deep breathing and counting, he can control his response 55% of the time.  He does need verbal prompts to use the stress relieving techniques.

The third goal is that Liam would be able to potty independently.  Last quarter he kept his pull-up dry 87% of the time.  This quarter he was in underwear and remained dry 61% of the time.  That isn't a typo the numbers are moving in the wrong direction.  Quoting the teacher, "He has started to become very angry when he is asked to use the restroom.  He will sometimes hit the toilet paper dispenser or other objects in the bathroom." 



The fourth goal is Liam will put on outerwear with help with fasteners only in 4 out 5 opportunities presented.  The progress report says "Liam's largest obstacle to being able to dress independently is his distractibility.  He is so busy watching the other children that he forgets what he is supposed to be doing.  While getting dressed away from the other children, Liam can concentrate better and he is able to get on his snow pants, boots, hate, and mittens by himself.  He continues to need help with his coat and backpack."

The fifth goal is that Liam will communicate with adult and peers using a variety of modalities.  Liam will appropriately initiate communication with peers to initiate play, share materials, take turns without adult prompting in 3 out of 4 opportunities.  The progress report states that there are numerous whole-group lessons using a social story book addressing initiating play and joining play, and then Liam's class practice the skills in structured and less structured activities.  To quote "Liam willingly and delightfully participates, but continues to need adult prompts to initiate the play, appropriately.  He will state who is going to play with rather than ask if he can play.  He does not spontaneously intiate sharing materials (0%) in an unstructured activity without adult prompt but is very willing to do so with one.  He will share when asked by a peer to do so, as well.  He shares turns without prompting."

(Mommy and Ben are in this photo too...This was looking for the gingerbread baby during the Christmas party).

The sixth goal was that  Liam will increase expressive vocabulary skills.  When given a social situation, Liam will identify and name an appropriate matching emotion with 90% accuracy in 3 out of the 4 opportunities.  The progress report shows this is mastered.  With 100% accuracy, Liam can name happy, sad, mad/angry, surprised, and afraid with 100% accuracy on both real faces and pictures.  In addition when described a social situation, Liam can identify how someone would feel with 100% accuracy.

The seventh goal is Liam will maintain a conversation with adults and peers.  In unstructured settings, Liam will maintain verbal turn taking with adults by using voice and or gesture, by staying on topic, extending the conversation with a minimum of 1 comment or question, and waiting appropriately for communication turn.  In the 3rd quarter, Liam maintained verbal turn-taking in 33% of the opportunities.  The progress report states that Liam maintained verbal turn-taking in 40% of opportunities.  The report notes, "He is inconcsistent, which seems to be dependent on his emotional or physical set of the day.  Some days he is very connected, interactive, and responsive, others, he seems to be somewhere else."

I love the above photo as it shows the giant slide in the classroom that all the kids love.

So, the progress report didn't do much for my anxiety levels, but summer plans are slowly falling into place.  Unfortunately, most things doen't start until June, so for the next week I am solo parenting with few structured activities or options for such.

How to teach empathy about differences?

A couple weeks ago, I changed the days of Liam's therapy so we could go see the USO's Sesame Street program on base.  This meant we encountered different children at the therapy center where Liam does private speech and occupational therapy.  On our way out, we met a teen-ager who had just arrived with his aide.  He was trying to take his shoes off himself (here in Alaska, shoes aren't worn indoors anywhere) and was struggling a bit.  The mud room area in this center is crowded and it was full with me trying to keep control of Liam and Ben, as well as two adult size males. The aide left, and Liam was just staring at the boy and commenting on his drooling.  The boy understood what Liam said and I could see the hurt in his eyes.  I told Liam it wasn't nice and he could try saying hi to the boy and maybe introducing himself.  Liam did as he was told and waited a minute before laughing and saying "He doesn't talk!"  I told him that he does talk but some people talk in different ways.  Another little boy, about age 5, came through and said "hi" to the teenager and he said "hi" back, so i pointed out to Liam that he does talk and maybe Liam should apologize.  While this is going on, I am trying to get everyone's shoes on and us out the door.  I was so uncomfortable and embarrassed.

So today after Liam's rehearsal, I wanted to change him back into street clothes so his shirt and shorts wouldn't get dirty before his recital tomorrow. I decided to go over near another family from Liam's class.  Liam was in the middle of sensory overload and completely floppy and uncooperative.  I was dressing him and he was just flopping his body everywhere and asking me questions with his tongue out of his mouth. The little girl from his class came over and asked why Liam was talking like this and she mimitated him.  I hadn't actually seen what Liam was doing as I had him on my lap facing away from me while I dressed him as that is the only way to dress him with floppy limbs, but as soon as she did, I recognized the tongue movements and weird faces as what Liam does when he goes into floppy mode.  I told her that some kids talk differently and he was tired.  She started getting in my personal space and her Dad called her away.  I think she was overwhelmed too as it was chaotic in there and overwhelming for even neurotypical kids.

Yesterday we had a similar experience; I was at a friend's birthday party.  Liam usually plays really well with hber 3 year old twins, but her male twin's best friend was there and they were refusing to let Liam in the playhouse saying they taped the door shut.  I tried to give Liam some suggestions for solving the problem on his own (asking them for the magic word, telling them he was sad to be left out, etc) but in the end he started screaming in frustration, and my friend told her son to let Liam in.  A moment later her daughter wanted in and all three boys told her she couldn't come in.  I said "Liam, remember how sad you felt, now do you want her to feel that way?"  Liam pushed past the other two boys and opened the door for her.

But how do I teach Liam empathy for things he hasn't experienced?  How do I help other kids understand Liam is different without them wanting to exclude Liam for being different?

Backsliding has turned into a free fall

In the autism community, one of the most dreaded words is regression.  I won't call what we have here a regression, as Liam hasn't lost any skills, but behaviorally he seems to be spinning out of control these days.


It seemed to start in January with not wanting to go to school.  By February, he had a new ABA tutor due to his previous one having a baby.  He and his new tutor got into a dynamic of fighting for control, which led to Liam demonstrating his first ever aggressive behavior of kicking and throwing things.  That tutor left for medical reasons in March. This month was a bit chaotic.  Dave was gone for 11 days and Liam's new tutor started.  Dave came home, but was immediately put on a schedule of working 6pm until 6am.  He'd get home around 7:30am and would go right to sleep.  He was still working this schedule when my family arrived.  Liam loved having Yia Yia and Pappou here, but it did disrupt his normal schedule, and his sleep as he was sleeping on the boys' futon in Ben's room.  Last week Liam's new tutor quit to go home to care for a dying family member.

This week I got a note from Liam's special ed preschool teacher as she wants to address some problem behaviors.  They were all things we are seeing at home, but it worried me.  I have talked to the school about Liam's sensory seeking behaviors that are disruptive at home and his teacher has said that he doesn't engage in any disruptive behaviors at school.  So, if different problem behaviors were now bleeding over into school, then Liam is spiraling into problem behaviors in every area of his life.  In addition, school ends in mid-May and there are no preschool options for him here, so he'll be home with me until nearly September.  Did I mention that Dave is going out of town again right when this transition happens?

One of the teachers concerns is about stuttering.  About a month ago, I noticed that Liam has started stutter.  He has just caught up in speech, and now he is stuttering?  It really doesn't seem fair.  In any case, I hoped it was just a phase and ignored it.  Liam sees lots of professionals every week and no one seemed to notice it so I thought maybe he was just experiencing some anxiety at home.  Well, Liam is now stuttering at school.  For some reason, his special ed teacher asked me how I am handling it.  I pushed back and asked her to speak with his speech therapist at school and get suggestions as I am no expert in speech-language pathology.  In the meantime, I talked with Liam's private speech therapist.  She got a chance to observe it and said he tends to stutter on "k" sounds like on the word "can."  She said it is a common sound to stutter on and she doesn't think it is related to stress.  Her suggestion is to say the word with him to help him get it out.

Another of the teacher's concerns is that Liam is exhibiting aggressive behavior related to pottying.   He first did it this weekend while Dave had him pottying.  He threw a bowl of fresh pee across the bathroom, splattering pee everywhere.  Since then, he has fought and will kick and hit various items in the bathroom while urinating or while refusing to use the potty.  He is doing the same thing at school. In addition, he had 4 accidents in 3 days....4 accidents in 6 hours of school.  If he attended a traditional preschool, he would be expelled for having 3 accidents in a month, so 4 in less than a week is not acceptable, especially if I want him attending a community preschool next year.  Add to that the aggressive behavior and Liam's pottying process has become disruptive.  The teacher again asked how I was handling it.  It usually results in a time out and once when he behaved this way mid-lunch (actually he hadn't had a single bite yet), I took his food away.  Aggression for any reason is not something I will tolerate.  There has got to be a better way to manage it then what I have done so far, so again, I asked her opinion.  In the short term, I am thinking of just putting him back in pull ups as he is having at least 5 accidents a day anyway, in addition to the aggressive behavior when he does potty.

The teachers final concern was about Liam's session placement next year.  Currently, he is in the AM preschool class.  His classmates are awesome; Liam is the only one on the spectrum and he gets lots of exposure to appropriate social behavior. However, most of his class is leaving at the end of the year, and we don't know what next year's class will be like.  I asked for Liam to be moved to the PM session next year.  The main reason for this is so he can attend a community preschool.  I found a wonderful parent co-op program at a church in our small town, and Liam visited the class last week and fit into the program beautifully.  It is Montessori-based learning and has two teachers plus a parent volunteer and the class size is small, comparatively with only 12-14 children.  In any case, Liam's teacher is concerned about Liam being exposed next year to two children in the PM class with behavior problems.  However, if he remains in the AM class, he cannot attend a community preschool with typical peers.....and there is no guarantee that the morning class won't have a new student or two with behavior problems.

While I was writing this blog post, I heard from Liam's teacher who confirmed that Liam attending a community preschool is a very good idea so they'll make the afternoon placement work.  :-)

The other problem behaviors we have seen recently are sensory seeking, and thankfully, these haven't happened at school.  He will scratch himself until he bleeds or pick his nails almost down to the quick.  He has started doing sensory behaviors at the dinner table--mainly clapping his hands in front of others faces (like an inch away) or just sitting there and shaking his head side to side as fast as he can.  He will do this until excused from the table and seems completely fine with eating once a day or even not at all during the day.  He has always engaged in lot of crashing behavior, but he is doing it more, laying on the carpet and pushing himself along it, crashing into furniture, etc.

Have I mentioned that I am feeling burned out?  Of course, today getting on the bus, he spontaneously called out "I love you, Mommy" and I remembered that he is worth all the heartache, but I am feeling raw and tired and just overwhelmed these days.

Light it up blue: April is Autism Awareness month

I have some mixed feelings about autism awareness month.

I WANT people to be aware.  I WANT to spread facts and dispel myths.  I WANT people to know tha the red flags that are promoted are not black and white.  I WANT people to know that you could have a child ahead on all milestones until 18 months of age and they end up with an autism diagnosis.  I WANT people to know that regressions happen.  I WANT people to know that denial is a powerful thing and it can be hard to tell whether your child is looking at you or making eye contact, especially when you interpret so much of what they do.  I WANT people to know that a child could be counting to 15 and know their alphabet, but still have a 50% language delay.  I WANT people to know that autism and intelligence are not connected, and the diagnosis has nothing to do with how smart brilliant your child is.

So, what is the problem?

I don't want to constantly remind people that Liam is autistic; I want him viewed as normal as possible.  My voice is so tied to his that when I talk ; I'd love to hear more people raising awareness that aren't fighting the daily battle of autsim.  We had a stretch of amazing behavior from June until December of last year.  Liam made amazing progress, caught up to age level in speech, and I was asked by professionals in the field whether I was sure Liam's diagnosis was accurate.  Then January hit, and we have had a regression in behavior (while speech is getting more advanced everyday).  Suddenly, I am up to my ears in meltdowns, progress reports of emotional outbursts, and talk about adding in transitions so that Liam stops being so rigid.  In the last few weeks, Liam's sensory seeking behavior has increased so that he is crashing and seeking vestibular and tactile input almost non-stop.  During one of his uncontrolled moments, he slapped me across the face and then gasped and looked confused (he received a time-out and ended up losing TV, juice, board games, and reading time for th duration of the day).  I also wish that I could think about April like other families--focus on the current TDY and surviving it, think about my baby's 2nd birthday in less than a week, plan for my Dad's upcoming two week visit, and make Easter plans.

Right now, my heart just isn't in Autism Awareness as I plob through the everyday life of being a mom to a little boy who happens to have autism.

Soft Clothing contest

Liam has really started fighting about seams on his socks.  I get him dressed and he says the socks are hurting him.  He takes them off and then needs help to get them back on.  He is fine until I put his snow boots on and then he starts crying and yelling "OW!" and taking everything back off, and of course he cannot get it back on.  On mornings we are running late, this is quite inconvenient.  As such, I have been eyeing Soft Clothing, a company aimed at making seamless products to help with tactile defensiveness.  At the very least, I need the socks.

Today, I learned Soft Clothing and SPD Blogger Network have a contest to give away Soft Clothing products and the book, I'll Tell You Why (Talking About Tactile Defensiveness).  With two boys with Tactile Defensiveness, this contest is a dream come true for me.

If anyone else is interested in entering (and stealing the prize from me), do it here:
http://www.spdbloggernetwork.com/2011/03/25/spring-sensory-giveaway-from-soft-and-spdbn/