Mini-break

I have loved the term mini-break ever since I read "Bridget Jones" and I love traveling, but particularly like traveling in bite size portions.  I have taken a handful of 7 day or longer vacations/trips, and I always find that I am ready to go home by day 5.  What I excel best at is going somewhere for 3 or 4 days and sight-seeing at break neck speed.  Just ask anyone who traveled in Europe with me.  I came prepared with an itinerary and even in big cities, we'd hit major things to see in just a few days.

Then my boys came along and my mini-breaks screeched to a halt.  We visited family in Christmas 2008, but that was a long trip and painful for all involved.  We took 2 week long trips to Florida.  The first was when Dave was there for training before he deployed and we didn't have any time to see much.  The second time was after the deployment when we stayed at a dear friend's parents' house.  Ben didn't like the beach or the heat and we struggled to find something to do that didn't cause him to scream.

One of the main reasons my boys don't travel well is special needs.  Liam is on the autism spectrum and changes in routine cause him stress.  Both boys have Sensory Processing Disorder which means they have trouble interpreting sensory information.  I cannot control their environment while traveling, so this causes more issues for them.

We took a trip to Seward this weekend (pictures coming) and it was mostly successful but the issues they have with traveling were highlighted.

Liam became obsessed with the idea of "the little house" and began to repeat questions about it.  When are we going to the little house?  Will there be other kids there?  Will my toys be there?  It made for a long drive to Seward.  Once we arrived, he wanted to be at the little house, and he didn't want to leave.  He was so excited about going there, he thought that was the whole idea of the trip.

Lesson learned: Liam has anxiety over schedule changes and I really need to start implementing a picture schedule.  Almost all kids on the spectrum need one and hopefully it would help eliminate some of his obsessions.

Our first sight-seeing stop was a Dog Sled Tour.  When we got to the "sled" the dogs went crazy.  They LIVE for pulling sleds and were barking like crazy to be picked to be hooked to the sled.  The barking was too much for our dog lover Ben and he went into full meltdown mode.  Then the dogs started pulling the sled and his meltdown got worse.  He finally started calming down, by the time the ride was almost over.  Then we got to see puppies, which went well for the most part, except I had to protect the puppy from being squeezed to death by Ben as he seeks out tight squeezes.  Finally, there was an informational portion about running the Iditorod, except I didn't hear any of it because Ben was literally running circles around the property after recovering from the meltdown.

Lesson learned: Ben is sensitive to auditory stimulation and to vestibular input he doesn't control (the dog sled and swinging) but he seeks out tactile input (puppy fur).  He also seeks out hard squeezes and requires non-stop running.  I really wanted to do a wildlife cruise, but Ben on a boat for 4 hours or longer would  have been a nightmare.

The day we left, I wanted to check out a coffeehouse in an old church that doubled as an art gallery.  We planned to eat breakfast there.  As soon as we walked in, Liam started saying "It smells too much in here."  He became agitated and wouldn't sit down, repeating about the smell.  We decided to leave as he was starting to cry and pace.  I asked Dave if he thought the coffee smell was overwhelming Liam, and Dave said he smelled an old musty smell like old books, and maybe Liam picked up on that.

Lesson learned: Sometimes it just isn't worth the battle.

All in all, it was a good trip.  I don't know if we would have experienced more problems if we stayed longer or if there would have been less problems.  In any case, I hope that things start getting easier down the road.  I am not sure how to work travelling around Ben's need for constant movement.  I am wishing Liam could learn to read sooner rather than later so I can write a schedule instead of drawing pictures. I miss travelling and am determined to find a way to accommodate my boys' needs with my desire to see new places.

{this moment}

Inspired by Soule Mama :

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember.

. . . . . . . .

Impossible to photograph

After our Christmas photo experience, I think Dave might be done with trying to capture our tasmanian devil little angel, Ben, on film.  So when a local photographer offered mini-sessions while Dave would be out of town, I figured it would be a great time to get updated photos of the boys wearing their adorable age t-shirts without torturing my normally patient husband.  I thought that with Ben being a bit older, he might be easier to photograph....I was wrong.  He either happily played with his back to the camera, rotating his body as the photographer moved the camera to his front or cried and threw himself on the ground kicking and screaming.

Sam of S.Jordan Photography did a great job and was patient with Ben trying to take down her backdrop or running all over her yard while she chased him with her camera.  You can check out more of her work on her Facebook business page.  She posted sneak peeks from our photo shoot yesterday.

My beautiful blue eyed boy:

Liam was as cooperative as he could be.  The sun was very bright and he had a hard time managing as he doesn't like bright light.  He didn't even want to play outside yesterday due to it being so bright.  I got a pair of his Kid Banz sunglasses and he can manage better if he keeps his sunglasses on.

The only time Ben cooperated was when he could hold the mushroom which he insisted was a "tata" (i.e. cupcake).  He refused to sit on it, but would eat it for us.

My goodness, I have some pale kids!

Last Day of School

Yesterday was the last day of school.  This meant several things....a small party, saying good-bye to friends moving to Kinergarten, panic from Mommy about how to keep busy over the summer, getting a CD of pictures from the teacher, and Liam's progress report on his IEP.

This was my favorite photo of Liam from the year:

To show how much he changed, here he was the first day of school:



Now, let's talk about the IEP stuff....I'll put in photos for a visual break from all the depressing IEP stuff.  For comparison, this is the March progress report .

First goal is answering 2 "wh" questions about his school day.  At his last progress report, he could do this without any visual prompts 20% of the time.  With visual prompts, he could answer both questions 40% of the time.  This quarter showed slow progress.  He could answer both questions without a visual prompt 37.5% of the time and with a visual prompt 37.5% of the time. 

The second goal was Liam will manage his behavior in effective ways. In role play activities, Liam will learn, practice, and use strategies for dealing with stress in 3 out of 4 trials. Baseline is that stress causes Liam to become tearful and once upset can no longer communicate. His biggest problems are dealing with change.

Liam learned deep breathing and counting to 10 as strategies for dealing with stress.  Progress report shows that before learning these strategies, Liam was able to control his responses 40% of the time, and after learning the deep breathing and counting, he can control his response 55% of the time.  He does need verbal prompts to use the stress relieving techniques.

The third goal is that Liam would be able to potty independently.  Last quarter he kept his pull-up dry 87% of the time.  This quarter he was in underwear and remained dry 61% of the time.  That isn't a typo the numbers are moving in the wrong direction.  Quoting the teacher, "He has started to become very angry when he is asked to use the restroom.  He will sometimes hit the toilet paper dispenser or other objects in the bathroom." 



The fourth goal is Liam will put on outerwear with help with fasteners only in 4 out 5 opportunities presented.  The progress report says "Liam's largest obstacle to being able to dress independently is his distractibility.  He is so busy watching the other children that he forgets what he is supposed to be doing.  While getting dressed away from the other children, Liam can concentrate better and he is able to get on his snow pants, boots, hate, and mittens by himself.  He continues to need help with his coat and backpack."

The fifth goal is that Liam will communicate with adult and peers using a variety of modalities.  Liam will appropriately initiate communication with peers to initiate play, share materials, take turns without adult prompting in 3 out of 4 opportunities.  The progress report states that there are numerous whole-group lessons using a social story book addressing initiating play and joining play, and then Liam's class practice the skills in structured and less structured activities.  To quote "Liam willingly and delightfully participates, but continues to need adult prompts to initiate the play, appropriately.  He will state who is going to play with rather than ask if he can play.  He does not spontaneously intiate sharing materials (0%) in an unstructured activity without adult prompt but is very willing to do so with one.  He will share when asked by a peer to do so, as well.  He shares turns without prompting."

(Mommy and Ben are in this photo too...This was looking for the gingerbread baby during the Christmas party).

The sixth goal was that  Liam will increase expressive vocabulary skills.  When given a social situation, Liam will identify and name an appropriate matching emotion with 90% accuracy in 3 out of the 4 opportunities.  The progress report shows this is mastered.  With 100% accuracy, Liam can name happy, sad, mad/angry, surprised, and afraid with 100% accuracy on both real faces and pictures.  In addition when described a social situation, Liam can identify how someone would feel with 100% accuracy.

The seventh goal is Liam will maintain a conversation with adults and peers.  In unstructured settings, Liam will maintain verbal turn taking with adults by using voice and or gesture, by staying on topic, extending the conversation with a minimum of 1 comment or question, and waiting appropriately for communication turn.  In the 3rd quarter, Liam maintained verbal turn-taking in 33% of the opportunities.  The progress report states that Liam maintained verbal turn-taking in 40% of opportunities.  The report notes, "He is inconcsistent, which seems to be dependent on his emotional or physical set of the day.  Some days he is very connected, interactive, and responsive, others, he seems to be somewhere else."

I love the above photo as it shows the giant slide in the classroom that all the kids love.

So, the progress report didn't do much for my anxiety levels, but summer plans are slowly falling into place.  Unfortunately, most things doen't start until June, so for the next week I am solo parenting with few structured activities or options for such.

You know you live in Alaska....when you have a moose in your yard

When we found out we were moving to Alaska, everyone said "Wait until you see the moose!"  I lived here weeks before seeing any moose.  Friends would post photos of moose that visited their yard daily and I'd be so jealous.  I want a moose in my yard too!

I had given up on this and started focusing on NOT hitting moose grazing on the side of the highway.

This afternoon, I was making Liam's bed on the 2nd floor when I looked up and saw a giant eye.  I froze and my heart started pounding.  My brain started working trying to make sense of it, then "aha, a moose!"  I ran downstairs cursing that I don't carry my camera with me for all household chores.  The boys saw I was excited and ran up with me.  I figured the three of us were safe on our 2nd story deck, so we ran out into the rain drizzle and I snapped some photos.

The best face shot:

Where he moved to by the time we got outside....I was looking for where he had been and it was Liam who yelled "a moose!"

Liam learned moose awareness so he was yelling "Hey, moose" and Ben was copying "Hi Moo, Hi Moo!"



He was so cute with his big ears and long legs

He was taller than my neighbor's SUV:

Things I never want to forget

I never want to forget the smell of Ben's head--a mixture of lavender shampoo and a sweetness that can be best described as "baby smell."  I don't know if he has this smell because he still nurses, but I never get tired on putting my nose against his soft, fine, baby hair and sniffing that smell.  I am terrified he'll lose it and I won't remember what it was like.

I never want to forget how insistent Ben is about interacting with me.  He has certain phrases he uses to interact "that is good" "that is fun" "where is the _____" and if I don't repeat the phrase back to him (because I am in a conversation with another adult) he screams "Nooooooooo" until I repeat his words.

I never want to forget Ben's response to seeing me if say I happen to walk into another room and come back (a rare occurrence as he insists on me carrying him anywhere).  He'll start doing his happy Ben Ben dance, give me the tightest squeeze he can, and say "Mama! Mama! Mama!" over and over again.  He'll give another big hug, pull away, and point at my face "that's a mama!"

I never want to forget May 17, 2011 as the first time Liam had a kid-initiated play date.  Liam didn't initiate it, but his friend decided he wanted to play with Liam.  See, our side neighbor happens to have a little boy who happens to have Asperger's.  A few months ago, I suggested she use our BCBA for ABA therapy and about a month ago, Liam and her son, C, started having weekly therapeutic play dates to build social skills.  Something unexpected happened, and the boys adore each other and have a true friendship.  They will talk while standing on our respective back decks.  That is how yesterday happened.  I was playing outside with the boys and C hearing Liam's voice came running out to his back porch.  He is nearly 5 with no language delay, and he asked Liam "Can I come over to play?"  Liam had no framework to respond so he babbled a bit of nonsense and then concluded with "We'll play Thursday!"  Liam is very insistent on routines and he knows he plays with C on Thursday, especially since he wakes every morning asking if it is a day he plays with C.  A couple hours later, C's mom calls and says "C told me that Liam invited him over; can he comes over to play?"  So there you have it, a play date that us moms did not arrange but happened anyway.

I never want to forget watching Liam play with C last night.  He was a different Liam than who he is with me and his brother.  He seemed less like a baby and more like a little kid.  It allowed me to visualize a future with play dates of boys playing rough, running wildly, and telling fart jokes.  Every time Liam farted, he announced it to C last night and they both giggled like it was the funniest thing ever.  It has been almost 4 years of me being Liam's sole friend and constant entertainment and the idea of him having a friend makes me so happy.  I parented the way i did so he'd have the confidence to be independent of me.  I thought it would happen sooner, but last night I caught a glimpse of that time and I am excited we are on that path.

I never want to forget the looks Liam gives me as I talk to C.  He looks at me like I am the most beautiful women in the world, the smartest, and as if he is in awe of me.  Soon enough he'll be a teenager, so i wish I could hold on to that look forever.

What is crashing behavior?

I usethis term alot and I am aware that other might not know what it means.  I am tempted to post this video to Facebook, but honestly scared of judgement.  I am not allowing my boys to run wild here, and honestly watching them do this for up to THREE hours a day makes me crazy. 

This is a game the two of them created.  I stucture play time to include things that provide deep pressure (things like Tumbling class, lots of jumping etc) so they won't feel the need to crash, but no matter how many opportunities they have for deep pressure, it never seems to be enough.



If they are not engaged in this game, Liam tends to engage in his preferred crashing, which is running as hard as he can into wooden items like doors or walls. He also like pushing himself along the floor on his head or chest and then using his head to knock Ben over.
Ben's preferred crashing looks different. He likes jumping in the air, putting his legs out and landing on his butt in a butt flop or falling backwards on a bed without breaking a straight position.

The video ended when Liam engaged in kicking behavior for the 3rd time and earned a time out.

Liam's first recital

Liam has been in a Creative Movement/Tumbling class this school year. He loves the Creative Movement part of it, but struggles a bit with the gross motor Tumbling part.  A couple months ago, we learned what weekend the recital for his class would be, and it seemed like a good idea to participate as he was doing so well in class.  Sometime after this we found out Dave would be TDY the following week; he told me he'd see what he could do about not leaving until Monday as he is going to an exercise that starts Wednesday.  He found out a few days ago that he was leaving Saturday (so we had 3 days notice).  The rehearsal and the recital fall during naptime, so none of my mom friends can help watch Ben as their children will be napping.  Others have children in the same program.  My babysitter couldn't watch Ben this weekend.  This left me no other options but to bring Ben to the rehearsal and recital and just hope for the best.

The morning of the rehearsal Ben woke for the day at 5:04am and never went back to sleep.  We left the house at 9am to take Dave to the airport.  Ben napped in the car a bit so we got take-out and went to a park to soak in some sunshine and eat something.  Then we headed to the school.  I was shocked at the amount of cars, knowing the rehearsal times were staggered.  It was chaos inside and Ben was immediately launched into panic, clinging to me.  Finally, Liam was called and looked lost but followed directions backstage.  In the auditorium, Ben was doing fine and then the music started and he flipped out.  He started shaking and climbing up me and declaring he was "all done."  Then he spotted Liam and started pointing and asking "Meme?" and trying to climb on-stage.  Being pulled away resulted in screaming.  Everyone was looking at me.

Then the kids were filed out for photos.  There were two areas for photos--one for a group photo and one for individual.  One of the lights broke so they were only taking group photos.  We had been asked to fill out the order form in advance but I wasn't purchasing any group photos and didn't want the same order if I would be receiving no individual photo.  I had to re-fill out the order form, and while I had two sippy cups, 4 size 5 diapers, 4 pull-ups, two pairs of underwear, two pairs of spare pants, Liam's clothes he changed out of, socks for Liam, two iTouches, a cell phone, wallet, keys, two McDonald's toys, and wipes, I had no pens.  The photographer acted like I had some ridiculous request to borrow a pen.   After that, I went to take Liam's photo at the empty backdrop with my cell phone since I also had no camera.  Ben started running and pulling on the backdrop and the same bitchy assistant yelled "who child is this?" while she was standing less than an arm's length from me.  My look must have said it all as she apologized "Oh, I assumed his mother must be no where nearby?  Why would you let him run like that?  Please take him somewhere else; he is going to take down the backdrop." 

I wanted to point out that this wouldn't have happened if they were doing their job, came prepared, and were taking individual shots.  Instead, I just moved down the hall to change Liam back into street clothing. 

Here are the photos I got:

Here you can see the wild monkey wrecking havoc:

Recital day went much better.  Just before I left, my friend, lesley, called to say that she was going to stay home with her baby while her husband and in-law's videotaped her son's performance and she'd be happy to watch Ben.  I dropped Ben off, though that caused Liam to cry "I need Ben" the whole way to the school.  Then I had to leave Liam in the cafeteria.  He looked so young and little and vulnerable.  I almost couldn't leave him:

Liam did amazing as this 2 minute video shows!  In the end when I zoom in, the girl he is standing behind he has called his girlfriend once.



He did look lost during the finale but did great regardless.  I am so thankful my friend Lesley could watch Ben for me.

My awesome friend,  Rachel photo-edited my photos to enhance the color.  Love them!

How to teach empathy about differences?

A couple weeks ago, I changed the days of Liam's therapy so we could go see the USO's Sesame Street program on base.  This meant we encountered different children at the therapy center where Liam does private speech and occupational therapy.  On our way out, we met a teen-ager who had just arrived with his aide.  He was trying to take his shoes off himself (here in Alaska, shoes aren't worn indoors anywhere) and was struggling a bit.  The mud room area in this center is crowded and it was full with me trying to keep control of Liam and Ben, as well as two adult size males. The aide left, and Liam was just staring at the boy and commenting on his drooling.  The boy understood what Liam said and I could see the hurt in his eyes.  I told Liam it wasn't nice and he could try saying hi to the boy and maybe introducing himself.  Liam did as he was told and waited a minute before laughing and saying "He doesn't talk!"  I told him that he does talk but some people talk in different ways.  Another little boy, about age 5, came through and said "hi" to the teenager and he said "hi" back, so i pointed out to Liam that he does talk and maybe Liam should apologize.  While this is going on, I am trying to get everyone's shoes on and us out the door.  I was so uncomfortable and embarrassed.

So today after Liam's rehearsal, I wanted to change him back into street clothes so his shirt and shorts wouldn't get dirty before his recital tomorrow. I decided to go over near another family from Liam's class.  Liam was in the middle of sensory overload and completely floppy and uncooperative.  I was dressing him and he was just flopping his body everywhere and asking me questions with his tongue out of his mouth. The little girl from his class came over and asked why Liam was talking like this and she mimitated him.  I hadn't actually seen what Liam was doing as I had him on my lap facing away from me while I dressed him as that is the only way to dress him with floppy limbs, but as soon as she did, I recognized the tongue movements and weird faces as what Liam does when he goes into floppy mode.  I told her that some kids talk differently and he was tired.  She started getting in my personal space and her Dad called her away.  I think she was overwhelmed too as it was chaotic in there and overwhelming for even neurotypical kids.

Yesterday we had a similar experience; I was at a friend's birthday party.  Liam usually plays really well with hber 3 year old twins, but her male twin's best friend was there and they were refusing to let Liam in the playhouse saying they taped the door shut.  I tried to give Liam some suggestions for solving the problem on his own (asking them for the magic word, telling them he was sad to be left out, etc) but in the end he started screaming in frustration, and my friend told her son to let Liam in.  A moment later her daughter wanted in and all three boys told her she couldn't come in.  I said "Liam, remember how sad you felt, now do you want her to feel that way?"  Liam pushed past the other two boys and opened the door for her.

But how do I teach Liam empathy for things he hasn't experienced?  How do I help other kids understand Liam is different without them wanting to exclude Liam for being different?

Ben's language, attention, and social skills

This video is a decent representation of his clarity of language (or non clarity as the case happens to be), his attention span, and social skills.

This video shows the boys being, well, boys....

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.