Not sure where to go from here

I have lived here before, so I thought I knew the landscape, but things change in 2 years.

I knew that by placing Liam at a private school, we'd lose his IEP.  I battled with anxiety over that for months.  He has started school (will be a seperate post) and I now am confident that was the best choice.  I am still on the fence about initiating a transfer of Ben's IEP as I expect he will lose it after they re-evaluate him, especially since his only diagnosis is vague.

I did not expect getting private services to be so difficult.  We planned to use Liam's BCBA we used in 2010.  She is not responding to my attempts at contact and when I called Liam's ECHO case manager, she could not find her name.  I got a list of other BCBAs, but it doesn't look hopeful for ABA to work out.  I can get services from 4-6pm or I can drive to Auburn.  Honestly, I am not sure how I feel about either choice.  I can be judgemental and have high expectations and the services offered here in Montgomery did not meet my expectations.  Auburn seems promising but that is a way to drive with two small kids....and the place would be starting therapy at 3pm.  I actually planned to phase out ABA next year as I am not sure it fits Liam's needs anymore.  I am okay with giving it up this year, but I want to make sure he doesn't regress.

Speech services are non-existent here.  The base doctors are referring to only one place and they have a 1 year wait list.  We leave in a year.  I called the place where Liam did private speech last year.  They have a waiting list but it was small and I was really impressed with their new director of services.  I called Tricare to change Liam's referral but was told that center is considered "out of network."  I remember it was when I lived here last, but the Tricare person changed it for me.  This time the Tricare person was quite snotty and said she didn't care if the place he was referred had a 1 year wait list.  I would need to take Liam back to his PCM and the PCM would have to write a justifcation which the snotty Tricare lady said could then be denied.

I cannot have Liam have no IEP, no speech, and no ABA.

I am having trouble figuring out where to go from here though.

He will start hippotherapy in September and he is on a waiting list for OT.  I have looked into social skills groups and the nearest one is Birmingham and would cost $40 a session out of pocket.

Did I mention that I am having trouble functioning due to nearly crippling depression and anxiety and utter hatred of the heat?  No one from base will call me back and there are NO appointments for me to be seen.

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.

Lots of waiting

I haven't blogged much because there isn't much about which to write. I am still obsessing about the correct school choice for Liam for next year. I am in touch with the preschool department of special education services in Alabama, and they remember me (hint: this isn't necessarily good as things were tense when we left). Liam's eligibility testing was two years ago this coming August and is good for another year, but they are saying they will need to re-test him. My anxiety is high gear because I realized that even without re-testing, Liam's eligibility score for speech and OT do not technically qualify him for services (in both cases his score is 1 or 2 points above the cut-off). Liam has received school ST and OT due to the fact that Alaska feels he is delayed, but I know Alabama won't interpret it so liberally.

So things are a waiting game at the moment.



I am waiting for March when Liam will have a private neuropsychological evaluation which I am hoping will guide educational planning.

I am waiting to come to terms with the decision of where to enroll Liam: public full day Kindergarten, private half day Kindergarten (and lose IEP services), or another year of preschool with 4 year olds.

I am waiting for March when Ben has his school eligibility testing. This will determine what type of school services Ben needs, and what type of battle I will be fighting for adequate services for Ben in Alabama.

I am also waiting for the new physical therapist to start at our therapy center as it has been recommended that BOTH boys have PT evaluations. Ben's OT has finally gotten him close enough to a swing to put him on it, and his core is so weak and his muscle tone so low that he falls right off. He cannot sit on a swing. I am pretty sure that Ben will need physical therapy to address this, and am hoping to get some peace of mind that Liam's low muscle tone can be addressed through extra-curriculur sport activities and private OT.

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.

Liam's OT re-evaluation, a Liam brag, and general update

I got the results of Liam's private OT re-evaluation.  He has been doing private OT for nearly 2 years now, but had a re-evaluation as he has been with his current therapist for a year.  I always find the testing interesting, and it certainly shed some light on why we are struggling to get Liam to qualify for OT in the schools.  The testing showed that his visual motor integration skills are above average, but his grasping skills are average.  I personally find this surprising as Liam still cannot use the correct grasp for holding a pencil/crayon.   His fine motor skills testing were similar as a toddler, he did not use a pincer grasp but tested above average as he compensated for it.  I still worry that lack of pincer grasp and inability to properly hold a pencil will be to his detriment down the road as he is expected to build on those skills.

The evaluation showed that Liam is on the low end of normal in self-care skills.  He made huge progress in this area this summer, so that shows how much therapy is paying off. 

The evaluation noted that he has low muscle tone and recommends physical therapy to address this need.

The sensory profile showed where Liam's greatest OT needs are.  It noted whether a sensory processing area showed "typical performance," "probably differerence," or "definite difference."  Liam did not have a single area of sensory processing that is in the normal range.  He shows a probable difference in sensory processing in areas of: visual processing, multisensory processing, activity level modulation, modulation of visual input affecting emotional response & activity level, and emotional/social responses.  Liam shows a "defnite difference" in sensory processing in the areas of: auditory processing, vestibular processing, touch processing, oral sensory processing, sensory processing related to endurance/tone, modulation related to body position and movement, modulation of sensory input affecting emotional responses, and behavioral outcomes of sensory processing.

He has made significant progress through OT and will continue to do so, but he clearly needs the focus on sensory integration.

Now, for the cool Liam story or one of the ways that autism is cool.....

Liam has an amazing memory.  Liam also loves numbers and patterns. This weekend he was counting in a specific pattern.  He started at 90 and counted up to 99.  I thought maybe he didn't know the number "100" yet so I told him "100" after 99, and he responded "No!" and then said 80.  Starting at 80, he coounted to 89, and then counted 70 to 79.  So he was counting forwards by ones and backwards by 10s.  Earlier this week, I discovered he knows how to count to 15 in Spanish.  I have no clue where he learned this, so I told Dave.  Dave thought it was cool and counted to 10 in German ONCE.  Since that one time, Liam can now count to 10 in German.  He has recently started making up songs to include numbers in all three languages.

The general update is that based on Ben's forthcoming developmental evaluation, the base clinic has processed referrals for private speech, OT, and PT (physical therapy).  Based on Liam's OT re-evaluation, he will have a PT referral coming.  That means FOUR more weekly appointments.  During the Monday-Friday time, Liam has the following schedule: 8 hours of special education preschool (should be 10 but I pull him out one day for private therapy), 2.5-3 hours of time on the bus for transport to special ed preschool, 8.5 hours of church preschool, an hour of transport to and fron preschool, 3 hours of ABA, 1.5 hours of private speech and OT, 1.5 hours of transport between those appointments, and 1 hour of karate.  That makes for 28-29 hours of school, therapy, and driving.  That doesn't count the 3 hours weekly that Ben does for Early Intervention (total is now up to 31-32 hours a week).  In addition to that, I have time to feed both boys breakfast and lunch, and transporting them (getting outewear on/off, etc).  We will soon be adding 4 more hours, and who knows how many 45 minute driving triups between our house and the therapy center....when all is said and done in a 40 hour work week, me and the boys do 40+ hours of work/driving.  :-(

No wonder I am often craving more coffee.

Ben's developmental ped evaluation

The appointment was suprising for me and completely unexpected.  Beforehand, I said that I wouldn't be suprised if Ben was found to be on the autism spectrum and I wouldn't be surprised to find we wasn't.  The appointment had different results than I expected.....Ben was given a diagnosis of Early Childhood Developmental Delay.  The doctor explained that he doesn't believe Ben is on the autism spectrum and feels that his social skills are emerging.....BUT he sees 4 future results for Ben....option 1 is best case: we hit him with loads of early intervention and he outgrows his delays, option 2 is what the doctor suspects in most likely: Ben has a language delay (something along the lines of auditory processing disorder) which is interfering with his other areas of development, option 3: Ben will be diagnosed down the road with ADHD, and option 4: Ben will eventually be diagnosed on the autism spectrum if his emerging skills don't actually emerge.

The treatment plan the doctor laid out for us is private OT and speech on top of the early intervention.  He believes Ben would benefit from the special education preschool that Liam attends.  He wants Ben to receive ABA, but there is a catch....because Ben is not on the autism spectrum, Tricare will only cover 3 hours a week and it MUST be provided by a BCBA.  Liam's BCBA cannot provide those hours herself at this time.  We are still waiting for Tricare to make the referrals and Ben's PCM has not YET called us back, so at the moment, I am pushing ABA to the back burner.  Liam's BCBA feels Ben is on the spectrum and thinks we should get a second opinion.  I am struggling with feeling overwhelmed with all of this.  I never expected the doctor to find that Ben has 50% delays in multiple areas.  I don't exactly remember the numbers but will write a seperate post when his written report arrives.

There was good news.....The biggest is that the doctor absolutely thinks Ben should have allergy testing.  He was generally supportive of a theory of allergies and GI distress affecting development.  I noticed his library contained the book on special diets for special kids. :-)  The other news is that he told me that I should have a handicap parking tag.  He thinks this is for the saftey and well-being of other drivers, and not just to make my life easier.  I got it yesterday and haven't needed to use it yet, but that will likely change when the parking lots get snow covered.  Liam wasn't able to walk without falling last year.  This year that would mean carrying 70+ pounds of boys wearing winter gear through parking lots on either hip.  I am not sure I can physically manage that.  The last bit of good news is Ben's growth....36 inches tall and 28.5 pounds!!!!!!!!! 



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.

It is amazing what a night off does for your soul

Last week I was feeling pretty overwhelmed, especially by Tuesday (if not evident by my last two blog posts).  Since then something amazing happened, I got a night off.  My first ever....in the last 4 years I have been a single parent for about 16 months, maybe a bit longer.  In those 16 months, I only had less than a month of help, and it was from my Dad which meant help in running errands, not with the boys or cooking or cleaning.  In addition, I have single handedly dealt with hundreds of hours of medical and therapy appointments, 2 surgeries alone, and too many sleepless nights to count.  Everyone deserves some time off, but mine was fairly overdue, I'd guess.

As luck would have it, I caught a cold, complete with fever, and Ben was sick.  But our sitter that we trust enough to leave with the boys overnight moves this weekend, so it was our only chance.  We left the boys with her and headed to an Oktoberfest.  A few German beers later and after Dave and I turned "Pass the Pigs" on my iPhone into a drinking game, I was feeling fine.  Our sitter texted that the boys were asleep, and her parents were two houses away, and I felt totally relaxed.  We stayed up late talking to other couples we met that night.  We woke at 7am (a miracle in itself) and it was our sitter that dealt with Ben being awake in the middle of the night.  We watched TV in the morning without requests for cartoons, and then had a lovely quiet breakfast.  On the drive home, we even saw a bear.

Ben did fine with our time away, which surprised me as he is so clingy to me.  Liam did not do so well.  He was very anxious that night but settled with a promise to bake cookies in the morning.  He was very hyper in the morning, but the cookies distracted him.  After we returned, he velcroed himself to me, sitting on my lap and often touching my face with both of his hands.  The rest of the weekend were full of Liam meltdowns and he was pretty worked up all day on Sunday.

After relaxation, I have some things to share and thoughts on recent happenings with the boys....

On Wednesday, Ben had his 2nd appointment in the process with the developmental pediatrician.  This time we saw a psychologist for a developmental screening.  She saw pretty typical behavior for Ben--there were times he engaged with her (played catch with a ball) and times he was clearly overwhelmed (at least 5-6 times engaged in repetitive head banging for example).  She doesn't think Ben is on the spectrum, but she is NOT who makes the final diagnosis.  She did an autism screening (the CARS) but I don't yet know the results of his developmental screenings.  Next week he has his speech evaluation, and then he sees the developmental pediatrician for the last appointment on October 10th.

I am overwhelmed not by a diagnosis of Sensory Processing Disorder but by the sheer volume of interventions I will be managing and running both boys to and from.  I don't feel it is an option to do less intervention because of how far Liam has come; it proves intervention at a young age produces good results.  I have been pushing myself, thinking the crazy therapy schedule would be over when Liam starts kindergarten but it won't be until Ben starts kindergarten.  And 2 years in, I am just now being told that Liam needs physical therapy.  It was alot for one week.

I am hoping this week is better.  Today for the first time ever, Liam asked me 3 questions in a row.  He has never stayed on topic for more than one turn before.  I wish I remember what the questions were about but it was before my morning coffee.  Have I mentioned that Ben is waking nightly again and is no longer napping?

Here we go again, feeling like I am back in 2009

thankfully minus the deployment and newborn who screamed non-stop....

Ben started the process of his evaluation through the neurodevelopmental clinic here.  He'll have 4 different evaluations in all by 4 different specialists then on October 10th, the developmental pediatrician will review the total results with us.

Today was Ben's OT evaluation as part of this process.  I *know* Ben has Sensory Processing Disorder.  I wrote about it in this post.  That was in December 2010 when Early Intervention started services with Ben for Sensory Processing Disorder.  I wrote about it again in May when Early Intervention upgraded the status of Ben's services and encouraged me to take him to a Licensed Master's in Social Work (LMSW) for Floortime to address his extreme tantrums as they were beyond the expertise of Early Intervention.  The LMSW confirmed Ben is a sensory seeker and we have been working on tactics.

Therefore, today should have been no surprise, but it was for some reason.  I think because I view Ben has higher functioning than Liam, so I never expect Ben to qualify for services.  Then when Ben does qualify, I am reminded of where Liam started with his delays.  In addition, the amount of therapy sessions is exhausting for me, and I have been pushing through, just wanting to get Liam intensive therapy until he starts elementary school, and now I feel I am back at the starting point with Ben and am looking at 19 months PAST Liam starting school of intensive therapy with Ben.

It is a bit much.

So, the OT said Ben has Sensory Processing Disorder, specifically sensopry modulation disorder which is the most common type.  As part of this, he has some mild fine motor delays.  Tl treat this, she recommends to continue Early Intervention.  Ben has moderate trouble with sensory integration and emotional modulation.  She said the best way to address this is private OT, like Liam attends.  So we'll be adding another weekly appointment, though I know there is quite a wait list.  The logisitics of scheduling it will be quite challenging to say the least.  Finally, she was QUITE concerned about Ben's extreme toe walking and immediately recommended a PT evaluation.  So, in the course of a week, I find out BOTH boys need PT evaluations.

Tomorrow Ben sees another specialist for testing.  I imagine developmental testing.  In two weeks, he has his speech evaluation.  Finally on October 10th, he sees the developmental pediatrician and later that day, he'll meet with me and Dave to review his findings.

I have earned my wine tonight I think.  It is only Tuesday and Liam has done 5 hours of school, 5 hours of ABA, 45 minutes of speech, 45 minutes of ABA, a 30 minute session with the school OT, and an hour of Tumbling.  Ben has had an hourt of Floortime and an hour OT evaluation.  I have driven 6 hours over the course of 2 days, done 3 loads of laundry, and cooked a roast chicken.  There has been no naps and a wake up at night.  There has been too much stress and not enough fun.

Neverending battles

I am feeling tired of finally overcoming one challenge to immediately face another challenge.  I am feeling guilty for the fact Liam is missing his childhood running non-stop between therapy appointments.  Today he'll have been out of the house for 8 hours straight....he just turned 4. :-(

I am trying to reduce our number of appointments, and in pursuit of this, I have been in contact ith the school OT so he can receive OT at school and maybe drop his private session.  In reviewing my concerns, she told me that the school physical therapist noted LAST year that Liam has leg tightness which limits his mobility.  She didn't call me and no one woulod have told me if the OT didn't happen to relay this information.

So, this means Liam might need leg braces or at the very least, he'll need private PT in order to avoid leg braces.  Nothing is ever easy for him and my hope of reducing appointments only managed to add another type of therapy.

And of all joys it is only Monday.  I still have two evaluations for Ben's devlopmental screening this week.  No wonder I constantly feel anxious and burnt out.

Ben scheduled to see developmental pediatrician

Ben will be evaluated by the Pediatric Neurodevelopmental Clinic here in Anchorage.  It is quite the process, and I am feeling guilty that Liam didn't get as thorough of an evaluation as Ben will receive.  There are a total of 5 appointments over the next couple months.  First, Ben will be evaluated by an Occupational Therapist for OT/sensory issues.  Then he have a speech evaluation with a SLP.  Then he'll have testing done.  After that, he will meet with the developmental pediatrician.  After all that, Dave and I will meet with the developmental pediatrician so he can tell us his findings.  The good news is that I should feel confident in the results after all of that. The bad news is that he does need to be evaluated at all.

Back to school

I survived the summer!  It was a serious question whether I would. ;-)  Back to school encompasses a different set of challenges and we will be busy the next few weeks settling into our new schedule. 

This year Liam will be going to TWO different preschools.  In the afternoons, he will go to the public special education preschool where he went last year.  The program is 5 days a week, for 2 hours a day.  In order to accomodate his crazy therapy schedule, he will miss class one afternoon a week so we can drive downtown for his private OT and speech therapies.  He started the special education preschool this week, and was so excited to be back.

Today is his 2nd day back and so far, so good.  I am adjusting to the new bus schedule as he gets picked up right when Ben goes down for a nap.  Liam is adjusting as well as his class this year is a totally new set of friends.  In addition, his teacher had surgery so he is starting off the year with a long-term substitute.  On top of that, the school's SLP retired, so he has a new speech teacher at school.

Today we met with his morning preschool which is at a local church.  This preschool will meet 3 mornings a week for 2 hours and 45 minutes.  The class will be quite larger than anything he has ever been in before.  When he attended Mother's Day Out in Alabama, his class was never larger than 6-8.  His special education class has always been 6 or fewer children.  This new preschool will be 15 kids and only 2 teachers.  The meeting today was with the director, the teacher, teacher's aide, Liam's BCBA (ABA program manager), Liam's ABA tutor, me, Dave, and the boys.  The plan is to have his ABA tutor there the whole time class is going on, unless she is sick.  She will manage any meltdowns and will help Liam navigate any social situations.  This school has a Montessori feel to it.  The classroom will have various stations and the play/work is child-initiated.  I think this set up will be perfect for my stubborn strong willed preschooler.

In addition to two preschools, Liam will be returning to his Tumbling class, have individual ABA, private speech and OT, and hopefully have time left over to just be a 4 year old.

Ben is not in school, but will also have a school based schedule.  Starting in September, Ben will be doing a social skills group that is sponsored by Early Intervention and held at the center where Liam does therapy.  The class will have 4 parts: tumbling (gross motor), creative movement (music), circle time (social skills), and snack (feeding/social skills).  Half of the class will be receiving services from Early Intervention and have some sort of delay and half the class will be typical developing toddlers.  I know Ben will love the tumbling and creative movement portions as it will be the same stuff Liam does during his class (which Ben imitates).  I know Ben will struggle in the circle time as I have not been able to get him to sit in any type of group circle, much less participate.  The instructors will be prepared for that though, so I am not too worried....I just know it will be challenging for him.

In addition, Ben will continue his OT through Early Intervention.  I talked with his therapist today and sometime in October, we will start discussing a transition plan.  Ben will either graduate from Early Intervention or transition to the school district as Liam did at age 3.  If he transitions to the school district, he might have a teacher work with him at the house, much like Early Intervention now or he could qualify for special education preschool like Liam.  They do not evaluate until 2 years 10 months, so we won't know placement until next year. 

I spoke with the developmental pediatrician's office and it was decided that Ben needs to be seen and it sounds like he will get in before the end of the calendar year.  Lately, Ben has been toe walking more and he seems to be shutting down a lot more.  He has recently become afraid of baths and just sits in the tub, staring down, scratching his legs until they bleed, and screaming if we present him with any toys.  When he isn't shut down due to overstimulation, he is delightful.  His tantrums are decreasing and he has started using deep breathing to control his emotions.  He is trying to communicate more every day.  He is not at all interested in children, but seeks out Liam to play with at every opportunity.  I have alot of anxiety and fears over his development.  We only recently began to see his sweet smiles and I want to make sure they don't disappear again.

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.  

More spirited toddler chronicles

Ben is now 25 months old.  The non-stop hours of crying have NOT returned.  He does still cry alot, as described below, but it is for discernable reasons.  I no longer have the gut renching helpless feeling when the crying starts, knowing that it will continue non-stop for an hour or more no matter what I do.  Ben does cry often as he has started having horrible seperation anxiety from me.  He must call "Mama" at least 60 times an hour, every hour he is awake.   He cries if I am not touching him or if I don't carry him with me as I walk through the house.  He also cries if Liam gets into his personal zone; he has the largest personal space need of any 2 year old I have met.

I remember when I found out I was having a 2nd boy, I was worried that he'd be less cuddly than Liam and would be more boy. Considering I need to touch him all the time and he is more attached to me than I thought possible, I guess I was wrong.
We had his Early Intervention appointment yesterday and re-wrote our IFSP.  They also are transferring Ben to the regular Early Intervention program.  Since he qualified, he was receiving services under Alaska's Early Intervention Program, Part E.  Part E is a program that allows children who don't meet the criteria for the regular (Part C) program to receive services.  The funding of Part E is in question.  Between the funding issue and the fact that after working with Ben, it has been determined that he needs OT, it was decided to trasfer him to the regular program.  From the Infant Learning Program website:

"Developmental delay of 50% or greater in one or more areas of development


Disabling condition with a high probability of resulting in a 50% or greater developmental delay

Child's development appears atypical and a multi-disciplinary team determines that the child is likely to have a severe developmental delay."

Ben's OT explained to me that his sensory processing and resulting meltdowns interfere with his life so much that he meets this requirement even though testing would not show him to be 50% delayed.  It has been confirmed that Ben has Sensory Processing Disorder, just like his big brother.  Ben's SPD presents a bit differently as he is almost primarily a sensory seeker (Liam sometimes seeks and sometimes avoids) and Ben has none of Liam's motor planning problems.  This mean Ben has a compulsion to climb, jump, crash, scream, hit, etc.  At this point, I would say Ben spends at least 70% of his awake time doing "butt flops" (jumping in the air then putting his legs out in a sitting position so he crashes on his butt).  He will even do them on hard tile.  If not doing that, he is running and sliding on his knees or running in circle (like at the moment) or climbing or grinding his teeth while hugging something as hard as he can.
As far as langauge, Ben is starting to show a delay, as he still doesn't use his name or pronouns (except for yelling "mine" when Liam tries to take a toy) and doesn't use many two word phrases.  He does have many scripted phrases that we hear regularly and he talks alot.  He seems to have created his own language, though I have figured out many of the words.

The cost of therapy

It has been a long, trying week and I want to complain and whine (trust me, I really do).  This evening I got my our insurance statements which shows the cost of Liam's speech therapy, occupational therapy, and Ben's occupational therapy.

In January, Tricare paid $2024.48 in occupational and speech therapy for both boys.  Of that, I had zero co-pay.  In addition to that, Liam received ABA therapy.  We can claim up to $36,000 a year for ABA.  This means that my boys can get $60,000 of therapy.  Our co-pay for the ABA is $50 a month.  I know many people don't have this benefit  and know how incredibly lucky we are.  There is a cost for it--frequent travel, moving every 2 years, threat of deployment, and the stress of the military lifestyle of the type of child that needs routine...and the fact we have to start all over with searching for therapists and waiting lists when we move. ....

But still, after a rough week, I feel like I need to acknowledge exactly how lucky I am. 

Schedules, Flexibility, and Balance

I have gotten to yoga once in 2011, but am getting e-mails from my yoga teacher.  She wants us to pick a wword forthe year and really focus on it.  I searched all January for a word.  I used searching as a word as an excuse not to go to yoga. It came to me this week: balance.  Right now, my life has no balance, although in reality I have always struggled with balance.  I tend to approach things full force, leaving little time for balance.  It is an on-going struggle and ties in to the rest of the post  below.

Schedules are important in our house.  I have always liked schedules.  I scheduled our honeymoon and many of our European trips (yes, I know everyone thinks that is funny but it is practical!).  Dave like felxibility so my schedules always usually included large blocks of open ended time for Dave.  After Liam was born, schedules went out the window.  Liam wanted to eat and sleep at will and I wanted peace in the household.  I was still in the midst of  this with Ben when Liam was diagnosed and Dave deployed and suddenly schedules became important again.

For a kid on the autism spectrum, schedules are vital.  Liam has alot of anxiety and it is partly managed by knowing what to expect.  All kids are like this, but Liam, like others on the spectrum, does not have the extra emotional resources to manage his reactions to things being thrown off schedule.  Liam has been in a tailspin since Christmas break and has not been able to snap out of it.  I am watching him backslide and feel helpless as meltdowns and tantrums sneak back into our lives.  In addition, his ABA tutor had a baby last week.  He has a new tutor but with winter viruses swirling around and the change in tutors, he has had alot of cancelled therapy.

Liam attends special education preschool 5 days a week for 2 hours each day.  His travel time on the bus is 30 minutes a day; I spend about 10-20 minutes a day waiting for the bus as it's timing depends on road conditions.  This means his school day takes up nearly 3 hours, but I only have just over 2 hours to b out of the house before I need to be back home to meet Liam's bus.  Liam does ABA 3 hours a day, 4 days a week.  He does speech and OT once a week but that is a 45 minute drive away so it takes a 3 hour block of time.  This means 30 hours a week are scheduled for Liam's therapy.  Ben does Early Intervention 1 hour a week.  He has visiting the chiropractor twice a week, and again that invbolves a 45 minute drive each way so it is a 2.5 hour commitment.  In between those nearly 35 hours a week is our free time to hopefully nap, schedule playdates, see friends, run errands, cook meals, and maybe even have free time to play.

So, when I am asked to be flexible, it can be hard.  Or when the house cleaner scheduled to come at 10am, but arriving sometime after 11:20am finds herself waiting outside in 16 degree weather, because I only had from 11:20pm to 12pm to run to the store to pick up some dinner for tonight.

This post started about balance.....clearly, we are in desparate need.

Reflux: The Way Ahead

The fantastic news we got recently is that Ben's biopsies show no inflammation and the ped GI was able to rule out eosinophilic esophagitis.  This is wonderful because the concern was that Ben had an autoimmune condition and worst case scenario was that he might need a feeding tube (thankfully, I know a few people whose kids are thriving with feeding tubes but it is something I'd rather avoid).  There is bad news and that is we are no closer to understanding WHY Ben still spits up at 21 months.  Even with reflux, actual spit up after the age of 1 is uncommon but Ben still does spit up.  Honestly, not having an answer is making me a little crazy.

One possibility is that he has Sensory Processing Dirsoder (SPD), like big brother, Liam and has texture issues to food.  SPD often runs in families and Ben does demonstrate some sensory sensitivity by toe walking.  Another possibility is his dysphagia (medical term for difficulty swallowing) is due to the fact he knows it will likely come back up.  Would you want to swallow chunky food knowing you'd feel it in your throat an hour later?  In either case, the treatment is OT focused on feeding problems.  Since Ben already qualified for Early Intervention, it is one of his goals for therapy.  Last week we tried yogurt covered raisins, cut up grapes, and tortilla chips.  Ben asked for all of them and spit all of them out.  After spitting, he'd happily ask for more.  I think the OT noted one raisin and 1/4th of a grape swallowed.  That is how most meals go.  This week we focus on meats.  The OT also brought some toys that stimulate the mouth and tongue and Ben was happy to play with them but insisted on controlling how much they touched his mouth.

Another possibility is food allergies causing reflux or even celiac disease.  I have asked several times for allergy testing for Ben and keep being told it isn't needed or justified.  I don't know of any other 21 month old that spits up, and I am having a hard time trying to figure out why Ben does.  I can either keep fighting for allergy testing or put Ben on an elmination diet so I can figure out allergies without testing.  I'd much rather get a referral for allergy testing; I just don't trust myself enough to see a difference in reactions during an elimination diet.  I know I saw no difference with eliminating casein, so there is more than just a milk allergy (he might still have a milk allergy but I didn't see a difference b/c he has multiple allergies or maybe he is only allergic to gluten and not milk).  In any case, I'd feel safer with some sort of allergy testing to guide me through an elimination diet.

So, my way ahead for Ben's treatment is

medical: continue with the Prilosec and try to wean him off it every 3 or 4 months and pursue allergy testing,

behavioral: continue OT for feeding issues

alternative: seek out a chiropractor, hopefully one trained in craniosacral therapy to address Ben's reflux

I am really hoping somewhere down the line there are answers.  Liam was a different child once he was diagnosed on the spectrum and started the right therapies.  It was like we turned a key and unlocked Liam's potential, and I want that same thing for Ben.

Ben's endoscopy

Our trip to Seattle was easier this time as I didn't have a stomach bug.  Ben did not like his pack and play and would not sleep in it.  I tried several times, and he screamed everytime I put him in it.  Finally, I laid on the bed in exhaustion, and he snuggled into me and started breathing sleepily, so he stayed in bed with me.  He woke at 12:30am, crying, and we re-started the whole process.  At 1:30am, he was asleep again and I was trying to fall asleep.   Our alarm went off at 5:15am and he woke up with me.  By  the time, we got to Children's Hospital, he was an over-tired, hungry mess and it was only 6:30am.

Ben was jumping and trying to leap off the hospital bed, even with the rail while they took his vitals.  The anestheologist offered the option of a "pre-sedative" and I agreed it was probably in everybody's best interest.  Ben relaxed quickly.  The anestheologist allowed me back while they put Ben to sleep with gas.  It took 3 of us (me and 2 nurses) to hold Ben still enough for the anestheologist to put the mak on Ben's face.  I cannot imagine he could have done it without the pre-sedative.  I guess they normally do just gas, but Ben needed a breathing tube and IV due to his severe reflux.  Once the gas put Ben out, I was escorted from the room, so they could run the tubes.

Ben's GI came out as soon as the surgery was done.  Ben's esophagus, stomach, and lower ntestine all look healthy.  The GI took tissue samples that will be biopsied and there is a possibility that the biopsies will show damage, but the GI doesn't expect it.  I will update after I have the biopsy results.  So for right now, Ben's diagnosis is severe reflux.  However, he is  still spitting up weekly and still won't swallow much food.  The GI wants to wean him off Prilosec, but we just started to see results from the increased dosage and I don't want to go back to not sleeping.  I need to see Ben's PCM and come up with a course of action.  In the meantime, Ben has his first appointment with early Intervention tomorrow.  I will talk to his OT about starting feeding  therapy to work with him on actually swallowing  food.

ER visits and regressions make for a rough week

This week has been rough. 

Liam went back to school; he loves school.  But the first two mornings, he cried and said he didn't want to go.  The third day, he came home with a note asking if he was okay at home as he was being distracted and tearful at school; this is not typical school behavior for him.  Liam is having a transition with his ABA therapy.  The tutor he has been working with for 3 months is having a baby soon and going on maternity leave so he is starting with a new tutor.  He has had two or three "mini-meltdowns" during every session within the last week; he normally only has 1 mini-meltdown a week during ABA. 

He just re-grouped from a full on major meltdown--the type I haven't seen in about 6 months.  I couldn't hear it happening and not get involved, especially as he is working with a less experienced tutor who was trying to talk him through it (talking doesn't work for full meltdowns).  I guided him to his beanbag and covered him with his weighted blanket.  The screaming continued for quite some time.  I realized how out of practice I was, as at one point, I dealt with huge meltdowns weekly.  I also confirmed the fact that childcare will be a challenge as few people are equipped to deal with something of that magnitude without training.  I still remember Dave's reaction the first time he saw one after coming home from deployment.  This is only the 3rd one Liam has had since Dave came home and Dave himself is clueless as how to manage one.

Then there was this:

Yesterday, Liam pushed over the boys' couch while him and Ben were on it.  Ben's face smacked directly into the step off the fireplace hearth.  His nose was bleeding, and his cheek got swollen and hard.  I called Dave to come home to help and took Ben into the Elmendorf ER.  We waited for 4 hours.  In the end, Dave came to join us while Liam worked with his ABA tutor.  I left before Ben was seen as it was time for Liam's ABA tutor to leave.  Ben was seen for less than 10  minutes and it was decided the nose wasn't broken.  I called Seattle Children's Hospital today and the nurse consulted the doctor and told me they wonn't know until they see Ben whether his nose is too swollen to go forward with the endoscopy on Monday.  I am really hoping that I don't travel 3 hours by plane and have Ben fast, only for the surgery to be cancelled.