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."

Sightseeing at Negative Seven degrees (farenheit)

This weekend we went to the Williams Reindeer Farm in Palmer, Alaska.  Due to the extreme cold, it closes down for the season in mid-September.  During the Christmas season, it is open so that people willing to brave the cold can visit Santa's team.  Normally, you just see the reindeer, but not Santa; this weekend he happened to be visiting to make sure his team was ready for the big day next week.  We didn't get a picture of the boys with him.  He was so friendly and everytime he wandered away Liam asked to go find Santa, while Ben just kept saying "No, Danta, no Danta!"  Whenever he saw Santa however, Ben pointed and said "Mitmit, Mitmit!" or Christmas.

Apparently, both Santa and his reindeer like the cold....according to our car, it was negtive 7 outside.

According to the William Reindeer Farm Facebook page, it was negative 12 degrees, but I am thinking that might have been after we left.  The boys were dressed in long johns (top and bottom), pants, snow pants, two shirts, down jackets, hats, mittens, and Sorel boots.  I didn't wear snow pants and regretted that when the backs of my thighs went numb.  I had one thick Smartwool socks, and my feet still went numb despite my Sorel boots being rated to negative 40 degrees.  Next time, I'll wear my wool trouser socks plus my Smartwool socks.  The boys didn't seem bothered by the cold, but Liam was in heaven with so many animals and Ben ran non-stop, so I doubt they would have told us if they were.

At the farm, we got to meet Rudolph



We got up close and personal with Denali, the 2 year old moose that was hand raised after his mother was killed by a car when he was 4 days old:

Being raised by humans, Denali thinks he is a dog and loves to give kisses.  Here he is trying to kiss our friends Noah and Noah's mommy, Michele:

We have the standard crying Ben picture:

Ben didn't mind the reindeer, but disliked having his movement retricted (I needed to keep him close as the reindeer have sharp horns and Ben doesn't follow verbal directions).

Liam loved the reindeer--petting them, feeding them, everything:

Classic screaming Santa photo

The boys met Santa this weekend.  This was the first year Liam didn't cry (unless you count October 2007, but he was asleep then).  Liam even managed to whisper "train table" when Santa asked what he wanted.  Liam couldn't manage to answer any other questions from Santa, but he was happy to sit on his lap.  I talked to Ben about sitting on Santa's lap and he kept running to meet Santa while we were waiting in line.  When his moment came, Ben was furious that he was handed over to a stranger.  He did stop crying long enough to answer "yeah" when I asked him if he wanted Santa to bring him an Elmo doll.

MORE Adventures in Early Intervention (or objective proof that I am not crazy)

Today Ben had his Early Intervention assessment, and qualifies for occupational therapy.  I won't get the full results until I read the report and meet with Ben's OT to outline his IFSP (Individual and Family Service Plan).  I am glad I am not crazy and wasn't imaging things or expeting too much of Ben, but it is a bit depressing to realize that both of my children need help in order to not fall behind developmentally.

The main area of concern they saw with Ben is attention and compliance.  As you can imagine, an agency which works exlusively with under 3 year old is used to short attention and 2 year old defiance.....but Ben could not even attend to tasks long enough for the item to be scored or was demanding "all done" as soon as things were presented.  Their concern is that this short attention span will not permit him to develop normally as the demands on him become more complex.  Ben's tip toe walking is also pretty much 90% of the time, and he appears to have tactile, vestibular, and auditory diffiulties in sensory processing (the same areas Liam has problems, but Ben is tactile defensive while Liam is tactile seeking).  Pending the results of Ben's scope, they'll also work on feeding issues.  Ben has strengths, particularly language skills (he tested below age level for receptive language, but it was all due to attention and not actual skills) and soial interaction with adults, so I imagine that like Liam, therapy will make a huge difference.

Apparently, Dave and I "make" incredibly sweet, very sensitive boys who struggle with making sense of their environment.

Christmas card outtakes

My children do not like taking photos, which is a poor match with my incessant desire to have nice family photos.  We went for family photos a few weeks ago, as enugh time had passed since March's Easter picture debacle that I had repressed how miserable the experience was.

I was pleasantly surprised to find that Liam was very cooperative.  I was not at all surprised to find that Ben would not cooperate at all.  Our photographer, Allie Litterer, used every trick and managed to at least get photos of Ben, but he would not smile.

This was the ONLY picture we got of the boys together without a parent in the picture and obviously, this cannot be used:

Ben just really doesn't like Liam much these days and really doesn't like Liam touching him.  Liam adores Ben.

Ben didn't cooperate much for solo photos either:

Liam smiled at everything and showed off his amazing bright blue eyes:

We got one smile from Ben, while I was holding him and I look fat:

Meanwhile, Ben reverted back to miserable when we "forced" him to be held by Dave:

Even family photos didn't work out like I planned:

We did manage to get 1 good pictures of each boy by themselves and 2 good family photos.  We did NOT get a good picture of the boys together, and it seriously breaks my heart and shatters all my dreams of cute picture of tiny little boys hugging each other.