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.

Fall in Alaska

Fall in Alaska is special.  It just occurs early and is short-lived.  Today we took full advantage as it is possible most leaves will be gone by next weekend.  We started with a hike at Eagle River Nature Center with the Knee-Hi Naturalist where Liam learned about all type of birds.  We spotted a raven, a spruce quail, a woodpecker, and a chickadee.  Most of the salmon have left Eagle River, but we did see one silver salmon still hanging around.  The grizzlies we spotted last week (yikes!) were nowhere to be seen.

Ben resting during our hike:

After the hike, we headed up to Palmer to the Fall Festival.  I blogged about last year's trip here.  Here are some pictures of the boys playing in the leaf pile this year:

It was crowded and Ben clung to me for dear life much of the time, though he did get down to play occasionally.  Liam rode a cute tractor/wagon ride, but Ben refused to let go of me.  After Liam pulled away, Ben wailed, though it might be because he didn't want Liam leaving, not that Ben wanted to ride.  Liam loved the ride:

Liam has been doing so awesome that it can be easy to overlook his difficulty handling some social situations.  Today was too much for him and eventually he resorted to this:

Right after this, he asked to leave and told me it was too loud.  His desire to leave was sudden that we hadn't yet gotten pumpkins (we save it to last so we don't have to haul them over the farm).  Liam was VERY clear that he was not up for picking pumpkins this year.  2011 is the very year since he was born that we haven't picked a pumpkin, but we won't do it at the expense of Liam's happiness.  The festival is only 1 afternoon, so that was our one and only chance.  I am just happy that he can express himself instead of resorting to a meltdown.  We have come so very far.

Which boy is which?

So who is who?

Liam was clearly bigger (Ben had sweatpants and a shirt under his outfit while Liam had nothing but a diaper) at this age, rounder, with chubbier cheeks, and Ben has more hair, but they are clearly brothers.

Then to show how much Ben has grown in the last year:

2010:

2011 (same costume on Liam but a different size....2T/3T last year and a 4T/5T this year):

Surprise birthday party

My whole life I have had jealousy for friends who had surprise parties.  I was a part of planning a couple of them and attended several others and always amazed at how loved the receipients of the parties were.  I rarely had birthday parties growing up.....I had parties for my 1st, 7th, 8th, 10th, and 16th birthdays but not for any others.  My 16th birthday party was my only present....I traded having a party for any present from family.  Dave and I have known each other 9 years and he always tries to make my birthday special but there has never been a party....

until yesterday when I turned 36 and he surprised me with 3 of my friends and their husbands meeting us at my favorite Anchorage restaurant.

It was a wonderful night that won't soon be forgotten and I do feel very special, very loved, and very valued.