Saying Good-Bye to 2010

2010 has been an emotional year.

When 2010 stated, Dave had already been gone for over 50 days and would be gone over 150 more days before returning to us.  Liam had recently been diagnosed on the autism spectrum and was not reciving the amount of early intervention hours recommended and had not yet started Applied Behavioral Anaylsis...he did not yet use two word phrases on a regular basis.  Ben had no teeth and was not yet crawling, and of course had no words.  I was hanging on by a thread....overwhelmed, depressed, lonely, and with an endless amount of diaper changes, meltdowns, evenings of screaming, sleepless nights ahead of me.

This year hasn't been all positive and there has been challenges, but we have all come so far.  Dave was awarded a bronze star, was offered a position with more responsibility, came home safely, and now supervises a large legal office.  Liam speaks full sentences with a rich vocabulary, he struggles socially but wants to make friends, and he overall just seems happier.  Ben is in the process of cutting teeth 11-16, puts two words together, can count to 10 using half the numbers (1, 4, 6, 7, and 8 apparently are optional but the 2,3,5,9, and 10 are always said in the right order), runs, and climbs stairs on two feet.  And me?  Well, I am getting more sleep these days and my husband is home....having uprooted again, I am still making friends or trying to.....and I am still regularly overwhelmed.

This year we have had three surgeries--ear tubes for Liam, ear tubes and adenoid reduction for Ben, and one for Dave (more on that below).  My Dad visited twice during Dave's deployment.  We battled seemingly endless colds and flus last winter and spring and seemingly endless stomach bugs this fall and winter.  I learned it is impossible to get two mobile babies to both be in the same photo and smile unless I am holding both of them.  We saw Thomas at Day Out With Thomas, although it was unfortunately before Liam started his Thomas obsession.  Liam finally started doing imaginative play, as did Ben (Liam in the spring, Ben just recently).  Liam has continued to amaze up with fine motor skills despite a poor pincer grasp--drawing circles before age 3 and writing his name without help shortly after turning 3. 

I survived on less than 4 hours a sleep for about 11 months of 2010, often awake for the day by 4:30am and awake for 2 hours in the middle of the night, so my sleep was broken into two 2 hour naps. We trialed Ben off of Prilosec to disasterous results and he is now on triple the dose he was on before and will be finally going into surgery for an endoscopy in early January.  Dave came home and we took a family vacation to the beach courtesy of our friends, the Deschanes.  We recieved unexpected news we'd be moving to Alaska, fought the medical clearance, and relocated our family 3000 miles just weeks after our deployment reunion.

I celebrated Ben's first birthday without Dave and we all celebrated Liam's 3rd birthday.  Liam started special education and rides a bus to school. Liam made amazing strides with the help of ABA, speech, and OT.  Liam transitioned to a big boy bed.  We got to do a few hikes and see several sights in Alaska.   Ben qualified for OT through early intervention for his short attention span, sensory issues, and a cognitive delay.  And we celebrated Christmas as a family,

One of the most recent and defining moments of 2010 was the decision to not have any more children.  I always wanted 3 children and especially always wanted a little girl.  Since I had two boys under the age of two, my life has turned into seeming upheavel--colic, reflux, an autism diagnosis, deployment, endless hours of therapy, more sleepless nights than I can count, and the reality that someone is always crying.  I don't have the physical or emotional resources to have another baby at the moment.  I don't have the desire to go back to the baby stage if I ever get one of the boys potty trained (nearly two years of two in diapers).  Dave doesn't think our marriage could handle a third and I am sure he is right.  The most important fact is this: I want to enjoy my boys NOW as they are and not look forward to how another child will change our family or the gender of another child or worry if another child will have autism or reflux/medical concerns.

So I look forward to 2011 with fresh eyes.  I am ready to dive in and enjoy my house full of boys, do lots of hiking, have lots of cuddle time, and play lots of legos and trains.

My 5 seconds of fame

http://www.cnn.com/video/data/2.0/video/bestoftv/2010/12/29/mxp.welcome.home.wed.hln.html

Homecoming photos and my ridiculous weepy voice on CNN this morning.

The Christmas we lost power

There was the Christmas Santa almost didn't come--the year I was 7 and Mom didn't have much money.

There was the year my family got the stomach bug, when I was 15.

There was the year Dave and I celebrated in an empty house with no presents because we were poor and his household goods hadn't yet reached Florida.....that was 2002.

This year was the year power went out and ruined Christmas dinner.  We had to battle to get Ben to nap so our ham was a bit delayed.  Ben had finally fallen asleep when the power went out at 4pm.  Ben immediately woke up as his white noise machine turned off.  We left the ham in the oven, hoping the power would come back on any minute.  Our power had gone out for seconds at a time at least 5 times on Christmas Eve.  After about an hour, Dave walked to the neighbor to borrow matches so we could light candles and a fire.  We don't have smart phones so we had no internet and had no clue if there were any food options iopen on Christmas.  Our neighbors that we borrowed matches from drove around for an hour only to find nothing open.  In hour two, another neighbor stopped by to warn us that it might be quite a long time as power was out across the valley.  He invited us to his house as he has a generator.  Shortly after that, I noticed Ben's hands were ice cold and I was shivering.  Ben got bundled in long john's, then a cotton sleeper, and last a fleece sleeper.  I put layers on.  Liam wore a fleece sweathsirt with his hood up. 

Somewhere in there, we ate cold ham, fruit snacks, and craisins.  Liam played with his train table by camping light.  Ben played with his play food by the fire.  Around 7pm, I asked Liam to go potty as he'd be going to bed soon.  Ben immediately said "night night?" and ran for his bedroom.  We went through the boys bedtime routine in the dark.  Ben kept crying without his white noise playing. Around 8pm, the power started flickering.  Finally it came back on.  Ben didn't fall asleep until afteer 9pm.  Our ham was ruined.  There was no wonderful Christmas dinner.  Ben was up early today and is a tired cranky mess this morning.

Someday this will be a funny family memory....the Christmas without power, but this year I could have done with some normalcy.

Edited....I just read last year's Christmas Eve post found here: Christmas 2009 and I had to laugh.  I got what I wanted this year--Dave home and Liam talking and able to tell me what he wanted for Christmas.  I never specified that I wanted power for Christmas this year. ;-)

Santa came!

I should note that those are all presents--presents for me and Dave, presents from grandparents, aunt, uncles, friends, for the cats, from Santa, etc. etc.  That said, this year we might have gone overboard.

This year I keep cycling between excitement over the fact that Liam seems to know he'll be getting presents and being totally emotional about having Dave home this year (and remembering how lonely and sad it was to wake up alone last year with two babies who didn't talk and didn't realize it wasn't just another day).

A surreal day

This day was quite surreal.  It started with a phone call from CNN.  At 10am, I took this photo of the moon with my phone....today was the winter solstice.  I saw negative 1 at 10am, negative 4 at 2pm, negative 5 at 4pm, and probaably a bit lower by 7pm.  Liam had a social skills group with his ABA case manager.  I came home to my cleaning woman cleaning my house randomly after not showing up last week (and not being scheduled today).  I had a potential babysitter come over set up by our dear friends who are Ben's godparents--she is a friend of a friend of a friend so to speak.  I put Ben down for a nap and he fell right to sleep and I left Liam with the sitter while I ran Christmas errands.  Dave came home after only being gone 11 hours, which is a huge rarity.  And the night ended with a bonfire in our cul-de-sac with neighbors in temperatures approaching double digit negatives.  Does a day get more strange than that?

A post involving miracles, hope, faith, and even fear



A year ago after two speech evaluations, Liam's speech was estimated to be delayed somewhere between 8 and 12 months.  He was counting to 20, pointing out letters, and singing songs, but couldn't communicate.  Occasionally, he might string 2 or 3 words together but they were always delayed echolalia from books or The Wonder Pets.  I was in the depths of researching autism spectrum disorder and knew perfectly well that it was in the realm of possibility that he'd never talk.  I worked with profoundly autistic individuals in several setting in college and graduate school.  I worked with men who had no ability to communicate, those that knew a few signs, one who used picture, one who only echoed a handful of phrases, and another who barely spoke, but wrote ina notebook for his parents what he did at camp each day.  I knew not talking was in the realm of possibility.  Liam babbled and jargoned an awful lot and never seemed to care whether I understoof him.

I had faith he would talk and every hope that it would be soon.  I was a bulldog in fighting for more speech therapy and getting him more help consumed my thoughts and energy.  Somewhere in the spring, his few scripted phrases started branching out; he was still echoing, but he was doing more phrases and some full sentences.  Then he started twice a week speech therapy, and suddenly, there were new words and he was trying harder to use words and jargoning  less.  In June, just in time for Dave's return home, he started using full sentences almost all the time.  When we moved in August, Easter Seals did a discharge report that said he was speaking at age level.

Liam had a break in therapy with the move and immediately regressed.  His special education program pulled me in and said he needed speech therapy as it wasn't in his IEP from Alabama.  They added speech therapy, but in less than 6 weeks, he had achieved the speech goals they'd written for him that they thought would take a year to meet. He had a private speech evaluation last week and they determined he is speaking at age level and even above age level.  He will be doing speech therapy as I have two concerns that didn't come out in the testing: he still confuses pronouns and he has poor processing and cannot answer questions (he simply echos them back).

I don't know how to tie together my feelings and thoughts on all this.  I really understand that while the progress proves that early intervention works, the progress is miraculous.  In 1 year time, Liam progressed 2 years in speech.  This amazing progress brings a healthy dose of fear because I don't know what Liam's future is.  I had finally started to look at his future as a kid with PDD-NOS with hope, but day by day, he fits that diagnosis less.  The likely outcome is that Liam will be re-diagnosed.  He might be re-diagnosed as having Asperger's Syndrome, which means social impairment but no language delay.  Aspie kids tend to seek out social contact (as does Liam) but have quirks that make socialization difficult.  He might lose his autism spectrum diagnosis entirely, which was my desire from the start.  But if he does, he'll likely get re-diagnosed with a language processing disorder, such as Central Auditory Processing Disorder, which would explain his initial difficulty with language and his continued struggle with understanding questions.  His future holds some uncertainty now, but I have faith it will be alright no matter the change.  The last year has taught me that Liam is my special boy no matter what label he is given.

My only real fear is lack of services as Liam shows such progress.  Liam has made such great strides because of the support he has been given and without it, he'll go back to floundering to keep up developmentally.  But from a therapy perspective, once he is at age level, they consider him to not need the help anymore.  This leaves some kids in a cycle of falling behind, getting special education to catch up, then having the help taken away and falling behind again.  I don't want Liam entering that cycle. 

For tonight, I think I will just focus on the miracle of the strides he has made.  I will worry about getting him the help he needs as I prepare for next month's IEP.

Ben, the Tasmanian Devil

Last week I met with Ben's Early Intervention Occupational Therapist to review his evaluation and to develop an IFSP (Individualized Family Service Plan).  His evaluation provided some reassurance about Ben's development--his language is age appropriate and his social skills are ahead of age level, particularly with adults.  Another way to read this?  There is no evidence that Ben is on the autism spectrum.  Whew!  However, he qualified for services, and shows up to a 7 month delay in two areas (feeding and cognitive skills).  As far as Early Intervention is concerned, they have two main concerns about Ben: his attention span and sensory issues.  I feel silly saying that I never noticed how short Ben's attention span is.  In truth, Ben leaves me so scattered, I don't have much time to think clearly at all.  The evaluation shows his attention span to be no more than 30 seconds to 2 minutes for things he enjoyed doing.  For things he didn't care to do, he didn't attend at all.  This might sound normative, but Early Intervention specialists are experts in toddlers.  They know how to make tasks appear fun and present the same tasks in different ways to get toddlers to attend to things.  Ben simply refused to comply over and over and over and over again.  His lack of attention is so prominent that it almost seems like he is using all of his attention to avoid doing anything at all.  Their findings about his cognitive skills (that of a 13 month old) were the biggest blow to me, but they believe it is simply due to lack of attention and refusal to comply.    Suddenly the fact I cannot take Ben to the grocery store for 3 items makes sense, within 5 minutes, he is bored of the snack I brought, a drink, my iTouch, my cell phone, my keys, his giraffe, any toys I bring, and talking to people in the store.  Other than running, Ben doesn't really attend to anything for as long as a minute.  To say this is tiring is a gross understatement.

As far as the sensory issues, the main concerns are the toe walking,  which is about 90% of the time and the refusal to swallow foods.  The eating issues have to wait until we receive the results of the endoscopy.

In writing the IFSP, the OT asked me about local resources, such as family to help out or friends willing to watch the boys.  I laughed....we haven't even found a babysitter yet and the only family member of mine who has met Ben is my Dad.  Most of the time, I feel I can handle my boys, but I would pay anything in the world (seriously would pay like $100 an hour and go into 7 figure debt) if I could have 2 hours free every afternoon.  See, Liam stopped napping shortly after Ben was born (maybe around 21 or 22 months).  Ben has not napped 7 days a week since about 11 months.  Most days I spend between 2 and 3 hours trying to get Ben to nap for 30-45 minutes.  Unlike Liam, he won't play in his crib until he falls asleep, so it means 20 minutes in his room, 10 minutes out of his room, and repeat for 3 hours, and for that huge effort, he is awake 40 minutes later (and even with all that only naps 3-4 days a week).  Upon waking, he cries non-stop for 40-60 minutes (which is an improvement for when he used to cry for 2 hours after waking).  Once he calms down, he is back to being the Tasmanian Devil and changing activity 3-4 times a minute.  By 5pm, I am usually ready to be committed.  It is sometimes worse when Dave is home as it makes him totally crazy, and his complaining about it just makes me more resentful that I don't have more help during the week.  So if anyone wants to come to my house from 1pm to 5pm any day during the week, name your price and I'd gladly take it.  I even promise not to leave the house, but it would be nice to be able to use that time to return calls or e-mails or cook dinner without burning something or leaving things halfway cooked for hours at a time while I deal with a child wanting to be rocked for the 12th time without falling asleep....like today....

So, what does it look like to parent the child with this short of an attention span?  On Friday, Liam had already started Christmas break so we went to the library.  They have a 20 minute "lapsit" for toddlers and then a 30 minute program for preschoolers.  During the 20 minute lapsit, Ben had at least 10 (!) rolling on the floor temper tantrums.  That means in a span of 20 minutes, Ben attempted to do something, was redirected, threw a rolling on the floor tantrum, was redirected from the tantrum, was happy again, and then repeated the cycle 10 times in the span of 20 minutes.  Liam used to have temper tantrums that lasted well over 20 minutes so I am used to tantrums, but Ben's quick cycling requires a completely different set of parenting skills.  At the end of the lapsit, I apologized to the other moms for Ben's disruptiveness, and they all said what a cutie pie he was.  You see, in between all those tantrums, he managed to walk around the room, say "hi" to everyone, hug most of the "babies" and flirt a little bit.  Seriously, he attends to most things for somewhere along the lines of 3 to 5 seconds, it is crazy.  The preschool storytime was closer to naptime, so Ben had a bit less energy.  He spent the 30 minutes, running around the room, out of the room (while I chased him down), coloring *while* walking around the room, actually doing the songs they sang, repeating words from the story, or managing to run, repeat things, color, and saying "hi" to people all at the same time.  How he doesn't nap with all the energy he expends is beyond me, but one of Liam's classmates moms summed it up best when she said "No wonder why he is so skinny; he burns every calorie he takes in."