Pokemon, Lego & Percy Jackson

What are your child's special interests? This question I am so often asked by the professionals makes me want to laugh.

I think back to Barney's very first evaluation done by the early intervention team when he was 2.5.  The team had just diagnosed him with Sensory Processing Disorder and a delay in pragmatic language.  Given my own teaching experience and M.Ed. in SPED, the pragmatics issue set off warning bells. So I asked them, "Is this what Asperger's looks like in toddlers?"  I was assured in no uncertain terms that he had such a wide range of interests and abilities he could not possibly be on the spectrum. Looking around our playroom they identified the play kitchen, train table (Thomas, of course),  Duplo building toys, stuffed animals, puzzles, variety of books and games that Barney enjoyed with equal enthusiasm. I was told that when they go into a house and see only one theme reflected ( Barney, Elmo, Thomas, etc.) that's an indication of spectrum behavior, but I didn't need to worry. Barney loved fire trucks, The Backyardigans, making block towers, cooking pretend food, numbers and letters, being read to and the color green.

I was relieved.  I threw myself into learning everything I could about SPD. The Out of Sync Child became my bible and  we turned our basement into a sensory gym. We had a plastic slide in the yard which I cleaned up and brought inside.  We got a mini-trampoline, a hoppity ball, a scooter board, a cheap exercise ball and gave him the space to run, jump, crash and fill his sensory needs. He was only 2 and everything I read told me I had until his 5th birthday to change his brain patterns and dammit, that's what I was going to do!

Despite the intensive OT, both at home and privately with a therapist, Barney's problems did not go away.  They changed, some things becoming easier for him and other things harder. In preschool he crashed into anything and everything, knocking over block buildings, dumping baskets of toys, and pushing kids out of his way even at the top of the slide. At 4, it was recommended that we take him for a full Neuro-Psych evaluation.  Of course there was a long waiting list and it took about 7 months to get in.

The Neuro-Psych results indicated a superior IQ, serious sensory issues, attentional issues, ocd tendencies and generalized anxiety. I asked the team, where does he fall on the autism spectrum?  Huh?  They were shocked by my question!  Parents don't ask for spectrum a diagnosis! Once again I was told that Barney had deficits but his strengths were so broad and well rounded that they had no indication that he was on the spectrum.

At that point in time he loved pirates, Little Einsteins, reading anything he could get his hands on, singing and putting on shows, catching bugs and the color green.  His classmates were into Super Heroes which wasn't his thing so he asked me to take him to the library so he could check out some books and teach himself  enough back story to participate in the games at school. The evaluators told me that spectrum kids don't do things like that. Again I felt relief.  When I presented the Neuro-Psych report at the Kindergarten transition meeting I proudly stated, "He's NOT Autistic."

Today Barney still loves to read and be read to.  In school he's reading Harry Potter in his free time, currently on Goblet of Fire.  At home he's reading Percy Jackson and just started The Last Olympian. He loves to build with Lego and is working on his Ninjago collection. He collects Pokemon cards, favors Pokemon ds games and can rattle off facts ad nauseum. In his free time he's teaching himself square roots and long division. Over the weekend he built a catapult out of wood, just for fun. He's also teaching himself to play the drums.  Guess what?  This is what Autism looks like in our house.  Oh, and he still loves the color green.

Tired

So tired today.  And everyday for awhile now.  I promised myself I would get back to blogging in the new year but here it is January 12 and it has been weeks since I posted anything.  I wanted my writing to be witty or informative, or entertaining at the very least.  Can't find the words for that right now.

Barney isn't sleeping well.  He wakes up at dark o'thirty so disregulated that if I do not leap out of bed at the first sound of his voice, disaster strikes.  In a matter of seconds he turns on the blindingly bright hall light.  He heads first to his brother's room where he pulls off all Henry's blankets then dismantles every surface and shelf in one fell swoop: stuffed animals, books, Lego creations, school projects and anything else in his path. Henry understandably yells at him.  Not only has he been rudely awakened from a deep sleep  but he is now freezing.  We keep our house at 60 degrees over night and Barney wakes up well before the morning heat comes on.

Barney's next stop is our bed.  He does not want anything to do with his father.  He wants "MOMMY ONLY". He doesn't snuggle but lies on top of me and kicks or bangs his arms keeping his body in motion at all times.  I try to hold him, give him the deep pressure he so badly craves but nothing is enough.  If I loose my patience with him he leaps up and tears apart our bed, then runs screaming down the hall.  He knows full well that he has enraged his father which terrifies him, but he cannot stop himself. He runs into his own room, slams the door, and rips apart his bedroom.  When furniture hits the door no matter how little sleep I have had, I have no choice but to get up. It could be 6:30 or 6:00 or 5:30 or 5:00.  Its always my job.

That's why I force myself to get up when I first hear him.  And that's why I'm so tired I can't think straight.

The Other Shoe

We had such high hopes for the new behavior plan Barney's school implemented on Monday.  It worked like a charm for three days but despite careful planning, the team forgot to factor in Phys Ed.

Barney attends the largest elementary school in town. There are 4 or 5 classes at each grade level resulting in overcrowding. One of the consequences of this overcrowding is doubling up classes for Gym.  Barney has Sensory Processing Disorder  and is very sensitive to sound.  We cannot easily take him to any of the warehouse type stores (Home Depot, COSTCO, Wal Mart, etc) without a meltdown.  The vast space, echo, and crowds quickly put him into sensory overload.  And what do a warehouse store and a school gym have in common?  You got it: sensory overload for my boy.

Being the true Aspie that he is, Barney craves order and predictability.  Thursday's gym class activity was a game of random order.  Balls bouncing all over the gym while 44 second graders ran around making noise and my kid was already at maximum overload. When the whistle blew, anyone holding one of the 5 orange balls became a leader of the next round. Round 1, Barney didn't get a ball and he was OK.  Round 2 and he didn't get a ball; his distress began to increase.  Round 3 and no ball, he grabbed one out of another child's hand.  He was put in time out for 5 minutes and returned to the game. Immediate repeat of round 3 behavior and he was removed from the gym.  Upon removal he became physically aggressive.

As required by his behavior plan, any physical aggression towards another person lands him in a half-day, in school suspension.  Is it just me or could this episode have been prevented if the staff had acknowledged his SPD and handled things differently?  I feel like I am eternally waiting for the other shoe to drop.

A Series of Expected Events

One of Barney's special interests this academic year has been the books by Lemony Snicket: A Series of Unfortunate Events. There are 13 books in the series and Barney decided the first week of school that these books would be his independent reading material for second grade. Given how easy the class work is for him and how uncomfortable he is socially, he can easily polish off one chapter book per week reading during his extra time at school.

Barney spent more time outside of the classroom than in it during the month of September. His agitation regarding the "baby work" made it virtually impossible to control his outbursts.  In an attempt to protect Barney socially, he was removed from the classroom any time his behavior made the other students uncomfortable. As a result, he spent a good deal of time sitting in empty offices and conference rooms. The school administration finally figured out that if he was allowed to read, he calmed down much more quickly. They decided to let him read for 15-20 minutes before engaging him in conversation and it was successful.

In less than a week Barney had regaled the principal, assistant principal, SLP, adjustment counselor, BCBA, nurse, secretaries and anyone else who would listen with plot summaries and character lists from the Series of Unfortunate Events books. The whole school knew what Barney was reading and how passionately he felt about the books.

My husband and I met with the TEAM last Friday to discuss the plans for behavioral interventions. The decision had been made to implement a Michelle Garcia Winner social thinking type model of clearly stated expected behavior.  The plan was well thought out and clearly had taken time and effort from all members of his school team. I felt like they "got it" and were willing to do what it takes to make their school the right place for my kid. They titled the plan: A Series of Expected Events. I couldn't ask for more.

When Did We Know?

Whenever we first speak with a new service provider they always seem to ask the question when did we know?  Know that our child was different? Was special? Was on the Autistic Spectrum? In retrospect, the signs were always there but Barney was not diagnosed with Asperger's Syndrome until just after his 6th birthday. 


Let me back up a bit. Barney was born in May 2004, a healthy, full-term, 7 pound 8 ounce bundle of spice. At that time I had a 18 month old son as well. In the hospital, I sent my hours old baby to the night nursery in order to get some sleep.  I'd recently been through this newborn business and knew to take advantage of sleeping whenever possible. Unfortunately the nursery would not keep him because no matter what they tried, he would not settle down; I thought maybe the head night nurse was having a bad night.  They brought Barney to me where he did settle down but he nursed so hard and so long by morning my nipples were bleeding.  I was no first time nurser.  My older son had only weaned about six months prior and I had never bled before, so clearly something was different this time around. 


We brought our new baby home to the chaos of a toddler.  I'd always read that second children can sleep through anything so I wasn't too worried.  Not this kid!  He screamed, nursed, and screamed some more, for weeks on end.  Yes, he did sleep of course, just not as much or as long as typical newborns. As in the hospital, no one but Mommy could soothe this child;  he needed to be in my arms at all times.  The co-sleeper I had used with his brother remained empty.  Barney only slept if he had skin to skin contact with me.


OK, so every baby is different.  Maybe my first born was just incredibly easy and this was they way most babies acted.  I soldiered on because this was my child and I loved him unconditionally.  Barney continued to eat at an alarming frequency, gaining weight so quickly from breast milk that my family joked I was feeding him chocolate milk. He had gained over 3 pounds by his 4 week check up.  I expressed concern to his pediatrician who assured me that babies cannot overfeed themselves while nursing.  Still I worried, it felt like his brain never received the message that he was satiated. Little did I know what lay ahead.

Bumps and Bruises

Its been an incredibly rough school year so far. Barney did not transition well to his new second grade teacher or classroom in September. He came home from the first day of school announcing, "Second grade it stupid. Everything is babyish. I hate school."

Not a great way to start the year. By the third day of school, his behavior landed him in the Principal's office. Thank goodness she knows him well given that he's been a frequent flier there since Kindergarten. She's calm, patient and firm with him which is exactly what he needs most when he's on a rampage. Barney gave her an ultimatum on that day," Give me harder work by October 1st or I'm never coming back!"

Unfortunately his behavior escalated to the point that the school gave up the focus on curriculum in favor of safety long before his deadline. So picture this, my gifted Aspie, who can read middle school literature with ease, spell any word in his vocabulary and add and subtract faster than most adults, sitting in a classroom working on long vowels. Most people suggest he should just keep a book in his desk for when he completes his work. Not so easy. Barney may be academically gifted, but socially, emotionally and behaviorally he's more like a preschooler. He's also loud, impulsive, bossy, inflexible, sensory defensive, anxious and has a hairpin trigger for meltdowns. September turned into his worst behavior month EVER.

Our early October IEP meeting morphed into a crisis intervention meeting . The TEAM spent hours brainstorming strategies to deescalate the frequency and intensity of Barney's meltdowns. I left that meeting exhausted but hopeful. The weeks following our meeting were dramatically better.  Life wasn't perfect of course but, I could begin to imagine a day when I might be able to relax between the hours of 8:40 am and 2:40 pm.


Then the October blizzard hit.  Our area was devastated by downed trees, live wires in the streets and a town wide power outage which lasted 8 days.  Not only did the kids miss Halloween, school was canceled for an entire week.  Now, a week off from school is always a challenge for a child who combats anxiety with predictability but an unscheduled week off with almost no information about when we would get back to normal was a recipe for disaster. Barney did amazingly well during the storm's aftermath.  Everyday I'd make a schedule of our activities for the day to keep him calm.  This worked well for us.  Sleeping was another issue all together but I was impressed by how well he held himself together in general.


The children finally returned to school on November 7th.  Barney returned to his class ready to work and was met by Halloween spelling words, Halloween math, a Halloween writing prompt and more Halloween activities.  I am sure many of the children in the class did not appreciate the reminder that Halloween had been canceled  but it was more than Barney could take. All the progress that had been made in the three weeks prior to the storm was lost and we were back to square one with his behavior.