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.

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

Ben's speech evaluation, take 5

It seems we cannot get speech therapists to agree on Ben's speech.  His speeh evaluation done as part of his developmental evaluation in October 2011 showed a severe language delay, and recommended private speech therapist.  The private speech therapist who saw him briefly dismissed him in December 2011 or January 2012 saying he'd catch up.  Early Intervention considered him to be speech delayed and so he had a speech evaluation in April 2012 as part of the process of transferring out of early intervention into preschool services.  They found him to be speech delayed and recommended twice a week speech at the local elementary school.  When we moved here, he was evaluated in the fall and the speech therapist felt his articulation was 4-6 months delayed and did not require therapy.

Same kid, different SLPs, different results.....It is a bit perplexing.

So, he was evaluated by Easter Seals by the same therapist that provided speech therapy for Liam in 2010.  She recognized him as Liam's little brother and commented how sweet and compliant he was.  He even told her he had to pee and came out to use the potty once during the evaluation.

She needs to score the results but she saw several areas of concern.
- Her biggest concern was how much Ben relies on echolalia to communicate.  She said she was surprised to hear so much echolalia, even though she knew I was concerned about it.
-He has issues with word retrieval where he knows the word but cannot seem to access it.  I need to look more into this as this is part of dyspraxia, I believe and if I am not mistaken can be connected with other issues.
-He drools and has bubbles while trying to talk, and clearly has low oral motor tone.
-He has perseveration, which means he repeats things and gets stuck.  During the testing, he'd give an answer to the previous question, not the one that was asked.
-He drops negatives and often says the reverse of what he means.
-He has pronoun confusion.

Am I the only one who notices how many of these speech issues occur in children with autism, especially the echolalia, perseveration, and pronoun confusion?

Issues du jour

Issue 1: Ben is finally interested in talking to share ideas, at least in very small settings and with people he knows well.  GREAT!

Did I just say great?  Let's change that to a great big headache.

Liam likes to talk, a lot.  If you let him, he will talk while walking in circles non-stop for hours.  I drove to Atlanta with him this weekend and on the way there, he talked the entire 3 hours with only occasional "hmmms" of agreement from me.

Now, Ben is also trying to talk.  This has resulted in a lot of tears from both boys and accusations that the other isn't letting him talk.  Have you heard about how Asperger's monologue?  Have you ever wondered what happens when you get two together and they both try to monologue?  I can tell you it isn't pretty. By the end of the day, I don't want anyone talking to me.  Today it resulted in a meltdown before school.

Issue 2: Ben is waking at night crying and saying his throat hurts.  It started with his last ear infection.  Does he have strep throat or still infected ears or is his reflux back to waking him up at night?

Issue 3:  The boys have finally watched their first movie all the way through, actually 3 movies. Both of them are into Star Wars.  There have been obsessions before but they have been Liam's alone.  Now they are both obsessed.  They want the Playskool figurines but they are hard to find.  What we have is fought over, hoarded, hiddenw ith the secret place forgotten, and I seem to live and breathe Star Wars between movie quotes, managing fights over figurines, and listening to Liam's ideas for episodes 7 throuh 136.

Pledge of allegiance

The boys have learned the pledge of allegiance at their schools.

Here is Ben doing it.  Any thoughts on his articulation?  I always worry that it should be better.  I don't worry about the big words, but more about trouble with initial blends.

Liam also learned the pledge, plus he sing "my country tis of thee" afterwards.  Notice how different his version of this song is....I giggle everytime he sings it.

A first for our family and Ben's language development

Ben has graduated from physical therapy.  This might sound like a small thing or even an expected thing.  For most kids, they start a therapy, catch up, and then no longer need the therapy.  That has not been our experience, however.  Both boys started Early Intervention, only to transfer to the school district at age 3 (unlike many friends whose children caught up through early intervention).  Liam has done OT and ST for yeaars and while he no longer keeps falling behind, he still needs those services.

Ben started PT for toe walking and with a limited range of motion in his ankles which made walking with flat feet difficult.  Early Intervention had worked on this with him since November 2010, and the toes walking was getting worse, not better.  Ben's PT set a goal of him having a 10-15 degree rangle of motion in both ankles, and his range of motion is 19 degrees in one and 21 degrees in the other!!!!!!! 

I was worried that Ben would ended up with casts to prevent the toe walking, but we just avoided that.  As a HUGE aside, I am down one appointment to run the boys too.

See Ben's hands there?  That is the startle reflex babies have to swinging or unexpected motion. Ben STILL does this.

Language wise, Ben is doing amazing.  Three HUGE leaps happened in the last couple weeks.  First, Ben has added pronouns, and has started to say "I do [blank]" rather than "Ben jump" or some other simple phrase spoken in the 3rd person.  Second, Ben has started speaking in sentences FINALLY. Previously, he spoke mostly in 2 to 3 word phrases but we are starting to hear sentences.  He doesn't have much fluency and I find him very hard to understand, but the sentences give me more context.  Third, he can answer questions.  Liam still has trouble with questions.  Ben might not need speech therapy when we arrive in Alabama.

OT wise, Ben still has needs.  He can now remove socks and a jacket, but cannot remove any other clothing.  He still cannot put any clothing on.  Sensory wise, he tends to be quite defensive and struggles with sensory integration a lot.

Conversation with Ben

This video shows Ben's articulation, his receptive language, his distraction, and his pragmatic language.

How normal is his language for a 38 month old?  His school district evaluation showed 20% delay, but I wonder if it is more.  I know he is talking more than Liam at this age and answering questions better, but his articulation and grammar seem delayed to me.

Leaps and Bounds

Exciting things are happening in Ben's world.  He started school based speech therapy a little over a month ago.  The progress he has made in that month is astounding.  I have become gun shy of using the term "language explosion" as I have seen regression/stalled progress following big gains, but it seems to fit. 

Ben is speaking in sentences finally!  In addition to that, he asks questions!!!!!!  Something I hear everyday while we drive, usually on the way home from wherever we were. "Where going, Mommy?"  "Ben, we are going back home." "Cause, why, Mommy?"  Oh, and mama is a word seldom heard, and the way he says Mommy is so cute.  In situations where he is comfortable, he'll talk a bit, but he still refuses to talk in many social situations.  His fluency is slow; he sounds like someone learning a foreign language.  He talks slowly, halts alot, and makes many grammatical errors.  But he is finally trying!

His articulation is improving, and he is so cooperative about practicing his speech homework.  He has been exclusively working on s-blends.  His first instinct is to drop the s, and his SLP has several cues for him to use it.  He cannot manage sp or sl, even with the cues, but he tries.  We work on word pairs, and initially he couldn't hear the difference between words off by only one letter, but now he totally gets it.

He is toe walking so much less!  His physical therapist said that the progress he makes from week to week is what she usually sees over a month or several months.  I am feeling confident that after we move this summer, we will be done with PT for good.

He had no problems adjusting to the little class he attends.  He waves bye-bye to me, and seems to have fun.  He has made his first ever friend with a little girl from the social skills class we have been in since September.  The little girl is shy and reserved and the two of them seem to understand each other.  Ben still isn't interested in socializing with most children.  Liam has always wanted to be part of the group but misses alot of social cues and is awkward in his interactions.  Ben, by contrast, seems to look at most kids with a sense of disgust and disinterest.  He likes people he interacts with reguarly, but much prefers adults to kids his age.

He has finally gotten over his dislike of Dave and happily goes to him.  It is more than that....when he hears the garage door open, he stops whatever he is doing and runs into the garage to get hugs from Dave.  Liam is happy to see Dave but often doesn't notice him until he has been home for awhile as he is too engrossed in what he is doing.

Ben seems to be making cognitive leaps.  He gets days of the week now and remembers the order things happen in with our crazy schedule.  He has finally figured out the pattern of counting and can count higher than 20.  Because of this, he spends alot of time counting.  Liam was like that for a very long time, and numbers have begun to signal, happy boys for me, so I sometimes don't take notice of the counting.

The only area with no progress is eating.  Ben still refuses most foods that need to be chewed, except for a limited number of safe foods.  He has recently added cheeseburger as a safe food, so that is something.  He will NOT touch food at all and would rather eat nothing that touch food with his hands.

His OT did a re-evaluation on him this week and said that he lacked many simple skills she'd expect in an 18 month old, but then had other skills that you don't expect to see until age 4.  We have had this problem with Liam, so it isn't new, but it means we have another child that testing is not completely accurate for, and who refuses to fit in the mold.

Elgibility results and special education, the 2nd time

Today was my meeting to find out the results of Ben's school eligibility testing...you know, the one he was so charming and cooperative for.

The overall report showed that Ben is 25% delayed in social skills and 20% delayed in speech/articulation and expressive language.  The recommonded services are that he attends 1 hour of speech at his local elementary school (where he'll see the same SLP that does speech with Liam's SPED class) and that he has a CARE (Community-based Assistance and Resources in Early intervention) team that works with him.  If he were old enough to attend preschool, the CARE team would work with his community based preschool and would provide 2 hours of special education within that setting.  As he is too young for preschool, he will attend a play group headed by a SPED teacher twice a week.

For comparison to Liam's eligibility scores and services, see this post from September 2010.

The eligibility testing was quite thorough.  A testing of his articulation showed he was 72% intelligiable to an SLP, which is considered moderately delayed as he should be almost completely understandable to an untrained person.  The two articulation areas she is most concerned about are: final consonent deletion and cluster reduction/omission.  He makes other articulation errors, but some are normative for his age (the example given is "wai" for light).

The testing on expressive vocabulary showed him a standard score of 79, or a delay of 20%.  They also did an interpretation of his expressive language and wrote down everything he said. By 2 years 11 months, most children are apeaking in 4 word sentences.  The average length of Ben's sentences is 2.9 words and 85% of those 2-3 words phrasescontained either grammatical errors or had unitelligble words.

Anchorage is considering Ben's speech to be moderately delayed.

They tested his fine and gross motor skills.  They noted his issues with sensory integration but said it was being treated through private therapy.  I need to research this, but I think they aren't supposed to consider what we do privately.  Using a test of fine motor skills, they found his pre-writing skills to be a strength.  I am not sure what to think of this.  By Ben's age, Liam could draw a circle and stick figures and not long after turning three, he could write his name.....and Liam has a known fine motor delay.  Ben cannot do those things yet.  I think I need to keep my eye on this.

They tested his pre-academic school readiness and he scored in the average name, though they oted that they could not give him credit for the things he can do that are above age level.

In the area of Behavior/Social Skills/Emotional skills, Ben scored as 25% delayed in the areas of social interaction and independence.  In order to address this, he will attend a twice a week play group (drop off play group) with a special education teacher at an elementary school here in town.

There is more to write about this, but I am in the middle of a crazy day which has involved, Liam's bus stuck in snow, being locked down on base, and fighting to get an updated ID card...in addition to IEP writing, etc.

I need 2 bottles of wine tonight....bottles, not glasses in this case.

The week that brought us all down

Last week was a week where nothing seemed to go right or as expected.  It seemed to last forever and the weekend was not at all relaxing.

Monday was Ben's school eligibility testing, and my sullen boy was all smiles and cooperation and charm for the SLP, SPED teacher, and school psychologist who met him.  He told them what his name was, showed off his academic skills, and spoke in sentences...yes, sentences!  He kept smiling at me and saying "Mama, I having lot fun!"  I am not sure where this talking version of Ben came from but he only vaguely resembled my real son.  In any case, we go back on March 30th for the results of the testing and to write his IEP, if appropriate.  They couldn't tell me the results of the testing on the spot, but did say they were concerned by the amount of echolalia they heard and some other speech irregularities.

Tuesday was the first day of spring, but we live in Alaska and still have more snow on the ground than I am tall, so it was a bit anti-climatic.  We are experiencing break up, which means the snow and ice is starting to melt and break a bit.  Highs are still below freezing but the sunlight we are getting is making things melt. I volunteered in Liam's school and that is always hard for me emotionally as I see how different his play is than his classmates.  Around this time, Ben suddenly decided he needed to be held non-stop so I should have known what was coming.  I believe this photo was taken that day as the boys had woken at 3am and never napped despite riding in the car for over 3 hours that day:

Wednesday seemed to be normal until the last afternoon.  I went to leave for karate and Ben was covered in liquid poop up to his shoulders.  I got him clean and got Liam to karate on time.  That night Liam had soft poop.  I was worried as we had a full Thursday planned and Dave was even taking leave.

4:30am Ben woke crying with another awful diaper.  We had just got him cleaned and back to sleep when Liam woke saying he had to poop....and he ended up vomiting.  I cancelled all school that day and left Dave to deal with the boys.  Our heating system was getting a check that day and it was discovered our hot water heater was leaking so we lost all hot water.  Somewhere in there I got my hair cut and then I went to meet with the neuropsychologist for the results of Liam's testing.  The results need their own post, so more on that later.  The boys seemed better by afternoon and we went to bed hopeful....until 11am when Liam woke crying and we got into his room just in time to watch him projectile vomit everywhere.

Friday morning Ben seemed better so I took him into Anchorage for a PT (physical therapy) assessment while Dave stayed home with Liam.  It turns out that Ben DOES need PT in order to work on his extreme toe walking.  We got home, and everything was fine until the evening whenBen was suddenly back to liquid poops.  Friday afternoon we got a new water heater, but somehow it has screwed up our water pressure and now hot water comes at only a trickle.  We still haven't fixed that.

Liam was better by Saturday afternoon but Ben was still sick on Sunday.  After the last week, I need a vacation, but this week we have: Liam's PT assessment, PT and OT for Ben, speech (x3) and OT (x2) for Liam, Floortime for Ben, Early Intervention and playgroyup for Ben and ABA for Liam.....plus Ben's IEP meeting and meeting with Liam's SPED teacher to plan a new IEP for him given the results of the neuropsychology testing.

Big changes ahead for my big guy

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

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

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

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

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

What percentage of this speech is understandable?

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

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

Overheard in these parts

Some things we have heard lately.

"Liam is the social leader in the classroom." from Liam's special education teacher....about Liam who refused to play with other children.  WOW.  I don't have words.

"I wish I had video of Liam last year to show how far he has come." from Liam's BCBA, his ABA therapist.

Liam's teacher assistant at his Montessori preschool also told me again that Liam is brilliant and told me to have him tell me what he did with her yesterday, but with Liam's pragmatic language delay, he cannot tell me anything more than that he did alot of words and some were hard.  I don't know if he read them or spelled them or wrote them.  I am guessing he was reading them, but Liam cannot seem to tell me exactly what he did that was so impressive.

Things heard from Liam:

On the night of November 30th as Dave tucked him into bed, "Goodnight Daddy; I'll see you in December."

This morning on learning that Christmas is on December 25th, "That means there are only 24 days until Christmas!"  However, when asked directly to subtract are how many days until a date, he claims not to know the answer.

When seeing a photo of the Elf on the Shelf in a Target circular, he asked "Is Christopher Pop-in-kins going to become a toy after Christmas?" At the moment, he thinks our elf, Christopher, moves by magic, but he seems confused about elves being pictured for sale and has an idea they might not be real. He is 4 years old!

Ben has started private speech and OT and is doing great and is even able to do his therapy without me present.  His tantrums are increasing in intensity however, and I am remembering how difficult they are to manage, especially as Liam gets upset  and says Ben is too loud and covers his ears and then begs me to make Ben stop.

Ben singing, Liam at karate, and a bit about Liam's language

First some happy video fluff.....

We went to a birthday party Sunday and Ben kept saying "Happy Day!"  Then on Monday Dave came home with cupcakes.  As Ben was eating it, he started rocking side to side and singing the birthday song.....kind of.....he is hard to hear over Liam but oh so cute!

Last week I took advantage of a karate class where Ben wasn't melting down to show Liam in action.  Liam is the little one all the way at the right of the screen as he was at the end of the line (he was line leader that day).



Afterwards, Miss Becky who teaches the class asked what Liam thought about being line leader.  They take turns and usually the line leader is really excited and makes a big deal about it, but Liam was just kind of flat while line leader.  I wasn't sure what to tell her as when I asked Liam, he just said he was line leader but didn't connect any emotions with it.

Last night at dinner, there was the following exchange.
Dave: "Liam what did you do today?"
Liam: "I went to school."
Dave: "What about in the morning, did anyone come to the house?"
Liam: "No."
Dave: "No one came to the house to play with you?
Michelle: "There were two people."
Dave: "Liam, who came to the house to play with you today?"
Liam: "No one."
Dave: "Did Miss Reagan and Miss Becky come to play with you this morning?"
Liam: "Yes, they came and we played games and it was so much fun!"
Dave: "That is great you had fun with them.  What did you do at school today."
Liam: "I threw balls with Ben, but no Ben wasn't there.....and I *gibberish* and then *drops voice and talks nonsense* and THAT is what I did."
Dave: "Wow, is there anything else you did today?"
Liam: "I played Zingo but I forgot."
Dave: "You forgot you played Zingo?"
Liam: "yes"

That exchange is why it is so hard for us to figure out what Liam does during the day or how he feels about things.  I am happy that he tests above age level when his speech is tested but on a pragmatic day to day basis, he is not communicating like you would expect. 

Of course after that, Liam told me a story about when he was born and he met the first Liam that ever existed (there was another Liam at the party on Sunday) and then he turned 100 and then he was a baby again and was born again.  There were some other details, like he was driving a car when he was 10 and me, Dave, and Ben were babies and rode in the car with him. Silly boy......

Ben's OT evaluation and a video showing receptive speech

I got the written OT report in the mail this week, and it was interesting to see on paper how similar Ben's OT needs are to Liam's. The OT listed the following as areas of concern:
-decreased fine motor skills
-decreased visual motor skills
-decreased bilateral coordination
-decreased self-help skills
-decreased social interaction/play skills
difficulties with sesnory processing and modulation, particularly in the following areas: auditory processing, oral processing, tactile processing, imapired self-regulation to modulate attention, behavior, and emotional responses as sesnory stimulation changes.

She recommends OT 1-2 times a week.

I finally downloaded photos off my camera.  With my fancy new iPhone, I am less motivated to download from the Nikon on a regular basis.  The video is a bit long, but shows Ben's issues with receptive language.  In the beginning, he is looking at animals and I am trying to ask him to name the animal or sound and he really struggles with managing it.  Then I start giving him a visual prompt by handing him the animal, and he does MUCH better.  This shows how much he relies on visual prompts.  Then we end by counting because that is what he loves to do.

Speech milestone

Ben is saying his name!  He cannot answer the question "What is your name?" but while playing occasionally randomly touches his chest declaring "I'm Ben!"  It very likely is just delayed echolalia as that is the phrase I use.  I touch my chest and say "Mama" then touch Ben's chest and sai "and I'm Ben" so he'll learn to associate I with Ben.  But he is finally using his name.  Now to just get him to use it when prompted for it. 

Sadly, I was looking for when Liam started saying his name and cannot find it on the blog.  I think Liam was saying his name shortly after turning 2 (so eariler than Ben).  Dave deployed when Liam was 26 months and I think Liam was calling himself "yema" somewhere around that time (either shortly before or shortly after).  Around 2.5 (the age Ben is now), Liam started calling himself "Lema" and that stuck until after he started his special education preschool.  I think it was somethime in November of last year he started saying "Lium" and he still says it "My name is Leeeeeeeee-UM."  Ben has been calling Liam "Meme" for about a year now and refuses to refer to him as anything else.

Update on Ben's speech and school OT for Liam

Today was step 3 in Ben's developmental evaluation process.  We met with a SLP for a speech evaluation.  I had alot of anxiety going into this appointment and had 2 seperate nightmares about it last night.  Ben talked young and if you have been following us, you might have noted how advanced I used to talk about his speech being.  Sometime this year his speech development stalled out.  I was in denial for a long time, but at 2.5, he isn't regularly combing words and is relying on delayed echolalia and memorized pat phrases alot.  I just didn't want my fears confirmed.

This smiling little boy was NOT the Ben the SLP met today:

Ben really does not like coinfined spaces and when he saw the therapy room, he freaked out.  It resulted in a 30 minute screaming, crashing, flailing, flopping meltdown.  He eventually stopped and began to explore the room, but then he would see the door and start crying or screaming again.  The SLP asked me if I knew about behavior therapy and started explaining ABA to me. 

The end result is that Ben has an expressive language delay and needs more speech therapy. 

Our last appointment is next week and by the afternoon, we will know if Ben has a diagnosis.

In answering the questions for the SLP, the OT, and the psychologist about Ben's development, all 3 pointed out that I have structured his environment as if he were on the autism spectrum.  Because of Liam's needs, we do alot of visual schedules, transition activities/songs, and I limit the boys to situation that I know will be difficult for them.  I wonder how much worse his behavior would be if I didn't do these things.  Ben has attended therapy with Liam almost his whole life and I wonder whether he has benefited from it.  H is higher functioning than Liam, but is it because he was raised and benefited from the changes I made for Liam?

Speaking of Liam, I finally heard back from the school OT.  She is going to work with Liam on handwriting skills for 6 weeks and if he doesn't improve than she'll do a full assessment and add OT into his IEP.  She told me that Liam has alot of strengths, mainly his problem solving skills are extremely advanced.  She also pointed out the areas where it was clear that ABA has taught him skills....mainly in his execution of play skills and his ability to deal with change.  It was good to hear that as Liam appears so high functioning that I know people question why I have him in so many hours of therapy.  But the school OT confirmed that he blends in so well because he was taught skills through ABA that he wouldn't have figured out on his own.

In other fun news, Ben now climbs out of his crib, and climbs out as soon as he is put down for a nap.

More speech progress

Liam's SLP did a new therapy plan for him about a month ago, but kept forgetting to give me the paperwork.  Now that I have it, I want to write out what Liam is now working on.

1.  Liam will initiate social communication with peers and/or clinician in 4 out of 5 opportunities.

2. Liam will adjust vocal volume based on the environment 90% of the time with minimal cues.

3. Liam will demonstrate improved grammar and syntax with 80% accuracy.

4.  Liam will maintain a conversational topic or pretend play story for up to 4 exchanges.

5. Liam will answer questions about past events with limited visual cues in 7 out of 10 opportunities.

6. Liam will respond to who, what, where, and why questions in 8 out of 10 opportunities.

Just typing out these goals, I'd say that he is on his way to meeting goals 1 and 3, but needs significant work on the other goals.  It is hard to believe that a year and a half ago, he wasn't regularly putting two words together.  It is nothing short of amazing actually.

I have noticed more leaps in his language since starting his church preschool.  He has started to make small talks and spontaneously engage in social greetings.  He is aware of many more concepts.  He is figuring out the concept of time and has our schedule memorized.  He has even started to finally ask questions.  He tries to figure things out now, and is showing curiousity in the world around him.

In other news, he started Pee Wee Karate.  The only goal of the class is to teach them how to act in a karate class and learn a bit about stranger danger.  He loves it and I am happy with the way the class is taught.

I am still trying to figure out how to get referrals and how to track down the school OT to see what the results of her informal evaluation of Liam's fine and gross motor skills.

Ben--language, reflux, and emotional development

It is hard to believe but Ben is now older than Liam was when Dave deployed (and I am forever grateful that I don't have a 7 month old in addition to him at home).

Ben continues to slowly add words to his vocabulary.  He still frequently speaks in single words but 2 and 3 word phrases are becoming more frequent.  He does not have the echolalia that Liam had at this age.  For the longest time, Ben's words were not very understandable, but some of his sounds are becoming more clear.  He still doesn't say his name (except when playing peek-a-boo) and doesn't respond at all when strangers talk to him.  He still signs and even created his own sign for "swimming."  His Early Intevention nows includes speech therapy, in addition to OT due to his slow language acquisition.  The way his language is developing is so different than Liam.  Liam seldom spoke to communicate (and still like to monolgue to no one in particular) and never really did the baby talk of using the wrong verbs.  Liam seemed to develop language through delayed echolalia so he always spoke grammatically correct.  Ben does alot more of toddler speak and it is so cute!



His language allows me to have insight about his emotional development.  One day when he did something to upset Liam he told me "Meme ryen" (translation is "Liam crying").  Yesterday when he woke from a nap, he stuck his arms out to me and told me "I ryen."  He has even been able to tell me "Meme sad."  It wasn't until Liam was 3.5 and it was written into Liam's IEP that he was able to understand that someone else was sad.  Ben is very tuned in to the emotions I am experiencing or what type of mood Liam is in.

Ben continues to be a little monkey and seeks out all sorts of sensory stimulation.  His tope walking is getting more pronouced and he has taken to walking on his tippy toes (not having the balls of his feet touch at all) and even toe walking in shoes.  Ben climbs everything in the house and spends as much time as he can scaling things, finding ways to turn on water, and throwing things....and creating slides.

Ben has been off Prilosec for about 3 weeks.  He is on Zantac and has been tolerating it.....but it has meant that he has gone back to refusing to swallow food and demanding applesauce and yogurt instead of real food.  He is waking up from naps crying and even waking at night again.  We have also had a huge excema flare-up on his wrists.  

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.