Backsliding has turned into a free fall

In the autism community, one of the most dreaded words is regression.  I won't call what we have here a regression, as Liam hasn't lost any skills, but behaviorally he seems to be spinning out of control these days.


It seemed to start in January with not wanting to go to school.  By February, he had a new ABA tutor due to his previous one having a baby.  He and his new tutor got into a dynamic of fighting for control, which led to Liam demonstrating his first ever aggressive behavior of kicking and throwing things.  That tutor left for medical reasons in March. This month was a bit chaotic.  Dave was gone for 11 days and Liam's new tutor started.  Dave came home, but was immediately put on a schedule of working 6pm until 6am.  He'd get home around 7:30am and would go right to sleep.  He was still working this schedule when my family arrived.  Liam loved having Yia Yia and Pappou here, but it did disrupt his normal schedule, and his sleep as he was sleeping on the boys' futon in Ben's room.  Last week Liam's new tutor quit to go home to care for a dying family member.

This week I got a note from Liam's special ed preschool teacher as she wants to address some problem behaviors.  They were all things we are seeing at home, but it worried me.  I have talked to the school about Liam's sensory seeking behaviors that are disruptive at home and his teacher has said that he doesn't engage in any disruptive behaviors at school.  So, if different problem behaviors were now bleeding over into school, then Liam is spiraling into problem behaviors in every area of his life.  In addition, school ends in mid-May and there are no preschool options for him here, so he'll be home with me until nearly September.  Did I mention that Dave is going out of town again right when this transition happens?

One of the teachers concerns is about stuttering.  About a month ago, I noticed that Liam has started stutter.  He has just caught up in speech, and now he is stuttering?  It really doesn't seem fair.  In any case, I hoped it was just a phase and ignored it.  Liam sees lots of professionals every week and no one seemed to notice it so I thought maybe he was just experiencing some anxiety at home.  Well, Liam is now stuttering at school.  For some reason, his special ed teacher asked me how I am handling it.  I pushed back and asked her to speak with his speech therapist at school and get suggestions as I am no expert in speech-language pathology.  In the meantime, I talked with Liam's private speech therapist.  She got a chance to observe it and said he tends to stutter on "k" sounds like on the word "can."  She said it is a common sound to stutter on and she doesn't think it is related to stress.  Her suggestion is to say the word with him to help him get it out.

Another of the teacher's concerns is that Liam is exhibiting aggressive behavior related to pottying.   He first did it this weekend while Dave had him pottying.  He threw a bowl of fresh pee across the bathroom, splattering pee everywhere.  Since then, he has fought and will kick and hit various items in the bathroom while urinating or while refusing to use the potty.  He is doing the same thing at school. In addition, he had 4 accidents in 3 days....4 accidents in 6 hours of school.  If he attended a traditional preschool, he would be expelled for having 3 accidents in a month, so 4 in less than a week is not acceptable, especially if I want him attending a community preschool next year.  Add to that the aggressive behavior and Liam's pottying process has become disruptive.  The teacher again asked how I was handling it.  It usually results in a time out and once when he behaved this way mid-lunch (actually he hadn't had a single bite yet), I took his food away.  Aggression for any reason is not something I will tolerate.  There has got to be a better way to manage it then what I have done so far, so again, I asked her opinion.  In the short term, I am thinking of just putting him back in pull ups as he is having at least 5 accidents a day anyway, in addition to the aggressive behavior when he does potty.

The teachers final concern was about Liam's session placement next year.  Currently, he is in the AM preschool class.  His classmates are awesome; Liam is the only one on the spectrum and he gets lots of exposure to appropriate social behavior. However, most of his class is leaving at the end of the year, and we don't know what next year's class will be like.  I asked for Liam to be moved to the PM session next year.  The main reason for this is so he can attend a community preschool.  I found a wonderful parent co-op program at a church in our small town, and Liam visited the class last week and fit into the program beautifully.  It is Montessori-based learning and has two teachers plus a parent volunteer and the class size is small, comparatively with only 12-14 children.  In any case, Liam's teacher is concerned about Liam being exposed next year to two children in the PM class with behavior problems.  However, if he remains in the AM class, he cannot attend a community preschool with typical peers.....and there is no guarantee that the morning class won't have a new student or two with behavior problems.

While I was writing this blog post, I heard from Liam's teacher who confirmed that Liam attending a community preschool is a very good idea so they'll make the afternoon placement work.  :-)

The other problem behaviors we have seen recently are sensory seeking, and thankfully, these haven't happened at school.  He will scratch himself until he bleeds or pick his nails almost down to the quick.  He has started doing sensory behaviors at the dinner table--mainly clapping his hands in front of others faces (like an inch away) or just sitting there and shaking his head side to side as fast as he can.  He will do this until excused from the table and seems completely fine with eating once a day or even not at all during the day.  He has always engaged in lot of crashing behavior, but he is doing it more, laying on the carpet and pushing himself along it, crashing into furniture, etc.

Have I mentioned that I am feeling burned out?  Of course, today getting on the bus, he spontaneously called out "I love you, Mommy" and I remembered that he is worth all the heartache, but I am feeling raw and tired and just overwhelmed these days.

Ben's reaction to being held by others while Mommy takes photos

The boys with Daddy on Easter:

 I love how much Liam looks like Dave in this photo.  Ben was crying "Mama, Mama!"  Then he got mad:

So we tried with Yia Yia (my step-mom) and it was worse:

He just left, running to me with his arms up calling "Mama!"

Photos with me went much better:

 Pictures of just the boys didn't go nearly as well.  Notice the look if distrust and abandonment on Ben's face:

I didn't have the energy to attempt a grandparent picture or a photo of all of us or even of me, Dave, and the boys.  One day they'll cooperate, right?

2 year Well Baby Visit

I remember a time that seems long ago when well baby visits were a fun time to find out how much my boys had grown.  Now the visits cause me stress.

Ben's ped asked about her referral for the developmental pediatrician.  It turns out that the clinic never processed it.  I should have followed up on it, but I knew I had his well baby coming up.  In any case, she made sure it went through and I am in the process of filling out the background information.  After the developmental ped receives it, we'll get Ben scheduled to be seen.

His ped assured that we had enough Prilosec until he can see the GI again. 

She also worked with me to make Ben comfortable so she could examine him.  It meant, I laid him in my lap, but he still freaked out and had to be restrained for her to look in his ears.  Tubes are still in place.  She is worried about his continued excema.  He seems to be in a non-stop flare up, right now his legs and arms are raw.

He is growing and isn't so tiny anymore, but still not proportional.  His 2 year stats:
Height: 33.5 inches tall (19th percentile)
Weight: 25 pounds, 3 ounces (17th percentile)
Head circumfrence: 51 centimeteres (95th percentile)

That makes him almost 3 inches shorter and 7 pounds lighter than Liam at the same age, but with a bigger head.....poor Ben.

You need a big head to support these cheeks.

Ben has been doing better.  He has been struggling with sleep--taking a long time to fall asleep, waking once a night, and up for the day around 5am....and not napping.  But other than that, he is eating better.  He had a bad reflux day on Monday, buut seems to have more good days than burpy, in pain days.  He has less random crying as I mentioned.  He is really into coloring on his new easel and really physically active these days.  Liek Liam, it seems like Ben will be easier and happier at 2 compared to age 1.



The day it snowed inside

Consider this a PSA to check all Melissa and Doug toys for styrofoam and remove it.  Styrofoam sticks and jumps from person to person.  Liam's OT found many pieces on her when working with him after this incident.  Our dumber cat (Sammy) was covered in it.

Ben thought it was the best thing ever.  He was so white that Liam was calling him "my snoeshow hare."

In the above photo, Liam is laughing at Ben.

Ben did the "Ben Ben dance" the whole time the vacuum was running, except for the moments he threw himself on his belly to watch the white bits swirl inside our Dyson.  Liam, like his Mommy, was more worrried about the mess, but he loved that Ben was covered in white and seemed tickled that Sammy managed to stomp through it too.

And the crying has stopped

2 years of crying that wouldn't stop.  The first 6 months or so, he cried 6-8 hours a day.  For the next 12 months, he cried 2-3 hours a day.  For the last 6 months, it was 1 hour a day.  It was less than a month ago I posted this about Ben's crying.  Over the last week or so, something happened.  The crying stopped.  I don't mean that Ben doesn't cry any longer.  He is two years old, so he cries when he gets scared, he wants something, or he is frustrated.  But the extended crying for seemingly no reason hasn't happened in over a week.  We have had reprieves before, which made the return of the reflux cry even harder for me to manage, but I wonder if we haven't come through to the other side finally.

I did the math figuring the low end of those crying estimates.  In the last 2 years, I have survived 1990 HOURS of Ben crying.  Of those 2 years, Dave was gone 9 months, so I managed it alone.  That number doesn't count Liam's meltdowns or crying.

Ben is still refluxing; he spit up a tablespoon or so Saturday morning.  I just hope this change in crying means we are through the worst of it.  I hope I get to see his rare smiles more often.

2 years old

Benjamin Andrew is 2 years old and quickly becoming less of a baby. 

These days his eyes are hazel, but they aren't green-gold hazel like mine.  Ben's hazel is a deep dark navy blue with shades of grey, and a couple of brown spots (particularly in the upper right corner of his right eye):

Ben never had much baby fat and lost his round belly months ago.  At 33 and 1/2 inches and 25 pounds, he is fairly muscular (note the outline of a 6 pack here):



Being so thin means he still fits in clothes as small as 12-18 months.  He is tall enough to fit in some 2T clothing.  Even though he is tiny, he is strong and can climb better than Liam can.  He still likes to be carried around a couple hours a day, so I am glad he is as small as he is.  My arms get tired enough; I cannot imagine how hard it would be if he were as big as Liam at this age.

He still rides rear-facing even though he is above 20 pounds and 2 years old.  It is safest to ride rear-facing until the limits of the seat.  Liam was just turned around at 34 months when he finally reached 35 pounds.  Ben is only 24 months and still has 10 pounds until he hits the limits of his seat.  I don't plan on turning him forward facing anytime soon.  He is quite comfortable facing the rear.  He sees me through a soft mirror attached to the seat back.  He can see the DVD player Liam watches by turning his head to the side.  He rests his legs up the back of the seat or crosses them as Liam did when he sat in the same seat.  Here is alseep after a car trip to Costco this week:

As far as eating, Ben still doesn't swallow much food.  My neighbor watched him today and said he ate half of a quarter piece of peanut butter and jelly sandwich (so 1/8 of a sandwich), 8 goldfish (I laughed, but she was so worried about how little he was eating that she counted them), and 1 yogurt covered raisin.  I told her that might be the last time he swallows food all day.  He already spit up once today (about a tablespoon of his breakfast). 

Ben does still nurse; it has been twice a day for maybe 5 months now, but just within the last week or so, it has started skipping sessions and only nursing once a day.  I don't think he'll be nursing for much longer.
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Ben can count to 10, but usually counts "3, 6, 8, 9, 10, all done, YAY!"  He knows all 26 letters in upper case form and knows close to all of them in lower case form.  It is amazing to watch as he points out letters in words.  It has helped eliminate some of his meltdowns during errands as he gets so hyper-focused on letters that he blocks out everything else.

Ben loves Murray and hunts him down for pets and cuddles:

Ben loves playing with Liam, but hates when Liam talks loudly, sings, gets in Ben's zone of personal space, or touches him too much.  Ben loves Wonder Pets, Super Why, and The Cat in the Hat.  He loves dancing to Laurie Berkner and likes to jump.

Ben was talking alot at a year old, but hasn't made much progress lately.  He says "tay" for yes, which I assume means "Okay" but he gets really excited when you ask him a question he says "tay" to and gets a huge smile.  He says "Bye Mama" (or Dada or Mimi for Liam) but that and "all done" are the only regular multi-word phrases unless you count scripts as he has several of those "more milk on the other side" to switch breasts during nursing "giraffe, pets, _____" (pig, baby, etc) to request a Wonder Pets episode.  He likes to hide things and ask "where's the _____" and then pick up and say "there's the _______!"  His giraffe is still his lovey--and has been since he was about 4 months old.  Thankfully we have 5 or 6 of them and I rotate them regularly.

Liam was easier during age 2, than he was at age 1 or now at age 3.  I am crossing my fingers that Ben is as well.

The cupcake incident of 2011

Ben's birthday fell on a Wednesday, which happens to be our busiest therapy day.   In addition, Dave is out of town which means he is 0 for 2 on Ben birthdays.   I decided I needed to do *something* to commemorate Ben's birthday as I am holding his present until Dave gets home.  The night before I got a sitter and ran downtown to Cake Studio, a swanky upscale bakery and bought 3 cupcakes: a brightly colored lemon, red velvet, and berry chocolate.  My plan was to let the boys eat cupcakes for breakfast, but I forgot that Ben will refuse to do something unless he initiates it, so he refused to go downstairs early enough to allow cupcake eating before Liam caught the school bus.

Being stupid stubborn, I think this is the only hitch and figure we'll eat cupcakes at lunch before the 1st of our 4 appointments.  So I make the boys lunch, but immediately, Ben is yelling no and climbing out of his seat, so I figure "He only turns 2 once; I'll just give him the cupcake now."  I even bough a candle that says "2" (I know it looks like a Z, but trust me, it is a 2).

I light the candle and put it in front of Ben and he immediately glares at the cupcake, pissed off at its mere existence.  He became furious when Liam and I began to sing Happy Birthday.

Liam tried to explain how to blow out the candle but Ben just kept yelling "No!" so finally Liam just blew it out.  Here Ben is still yelling "No" and turning away from the offensive sight of a cupcake:

Finally, he started tasting it and realized cupcakes were not a device of torture or secretly harboring spinach

Meanwhile, Liam is whining and crying.  First, he demanded that it was HIS birthday and I needed to sing to him.  He became so distraught that I gave up and sang to him, but that wasn't enough, as he demanded the candle.  Now, Liam thinks he has turned 4. *eye roll*  He tasted his red velvet and started crying demanding Ben's lemon cupcake.....but this was the moment Ben was eating it, so I refused.  I gave Liam the berry chocolate cupcake and then Ben starts crying and pointing at the cupcake in front of Liam, who is now saying he doesn't want any cupcakes as they are gross.  So I gave Ben all the cupcakes.

Ben and I had already eaten the cream cheese icing off the red velvet and he was angry that I had the audacity to put a cupcake without icing in front of him.  He removed it from his plate and I ate it.  After that, Ben said he was all done and left the table.  Liam refused to eat anything at all and also left the table.  I decided to update Facebook with the cupcake fiasco.....only to realize, it had gotten worse.

I went to clean up the table and the berry chocolate cupcake was GONE.  But I found a trail through the house of chocolate drool:

At the end of the trail was this:

I was trying to clean up his trail when he bolted into my closet and grabbed one of my shirts off the hanger and started using it to clean his face.

After this, I cleaned Ben up and we immediately started our string of appointments that kept us out of the house until 6:30pm and that was when we started dinner.  I was one tired mama.

I think next year I'll skip the cupcakes.