AJ's 4th Birthday Party!!!

Jan 6th we celebrated AJ's birthday party at APEX gymnastics (sorry for the late update!!)  It was a blast.  This was AJ's first birthday party and he was super excited for the big day!!

He invited his closest male friends (let's face it, AJ is mister popular and I had to limit it somehow!!) and classmates.  He wasn't picky and loved being center of attention.  

 

Ben was having a lot of anxiety leading up to the event... he's been very nervous about new experiences, especially when new children are introduced.  He starts cognitive behavioral therapy tomorrow, we are hoping that will help him manage his anxiety and better express how he is feeling.  When it was all said and done Ben had a blast and we are glad that he joined the adventure!!  

Afterwards we treated AJ to his personal birthday dinner at CiCis pizza (his choice).  When asking why Ben wasn't joining we told him it was HIS special day to spend with Mommy & Daddy.  Wouldn't you know it, AJ requested that Ben join the fun.  So the four of us had a nice dinner out.  

Meet the Teacher

Tuesday the boys had their meet the teacher at St. David's.  We opted to keep Ben in the Pre-K program in preschool as he wasn't socially ready for kindergarden (his birthday is in September so we could have chosen to send him this year).  LynnAnn, his resource teacher through the county, came out and gave him an aptitude of tests so that we can update his IEP for this year.  It is no doubt that he is bright as he scored well above the 7 year old range in a variety of areas including problem solving.

Ben & AJ are both in the afternoon program allowing me to have the mornings free for activities (I've enrolled them in swimming and hope to have them in gymnastics too!).  Ben goes Mondays through Thursdays and AJ goes Tuesdays and Thursdays.  They both gave up their nap this summer so it actually works out great.  And Seth bought me the priority pickup spot through the preschool auction last Spring so I've got an extra 10 minutes to spare before picking them up!  Ben was very anxious on meet the teacher day - telling me to "go first, have AJ stand behind you, and then I'll stand behind AJ so no one sees me."  He was very nervous.  After getting into his old classroom and settling down with the train building station he made himself at home.  All the while AJ had disappeared into HIS classroom on his own and was building his own train track.  Needless to say, getting them to leave was very hard (AJ cried).

 The first day of school was a success and Ben through a fit when I asked for him to pose for this picture because he "wanted to hurry up and go to school, he was SO excited!!"  I'm hopeful that this year will bring lots of maturity and prepare Ben for kindergarden next year.  AJ, well, he's always loved school and excels at all he does, including talking.

Autism Update

Phew, what a month May has been!  Last week I was up at Kennedy Krieger for appointments for both Thomas & Ben.

Not much new with Thomas... he is still delayed for gross motor and receptive language, but he is doing good with fine motor (scoring above his age group!) though his does have nice social interaction skills.  Thomas is now 14 months old, cruising nicely, and eager to walk.  He still receives Physical Therapy weekly.  I hope he is walking next month!

Thomas with his exceptional fine motor, writing and drawing!

Ben was seen by a speech pathologist and developmental pediatrician at Kennedy Krieger for a full evaluation.  Last May I had put Ben on the waiting list (when we were awaiting a diagnosis and I was eagerly calling every specialist to get on any wait list I could).  Ben's name cam up this Spring and I scheduled the appointment - I figured it couldn't hurt to have "the best" evaluate him for one more opinion.  Plus, I was still struggling with the mixed diagnosis's of Aspergers from the psychologists and developmental delay from the developmental pediatrician.  Just two weeks prior to this appointment Ben saw his developmental pediatrician who did say that after a year of treatment she believed Ben to be on the spectrum with the diagnosis of Aspergers.  So this was three in agreement (developmental psychologist, school psychologist, and developmental pediatrician).  In any event, I still wanted to see what Kennedy Krieger had to say.  After several hours of intense testing and countless forms, paperwork, and parental feedback we had our answer.  Their diagnosis was PDD-NOS (pervasive development disorder, not otherwise specified) which is an Autism Spectrum Disorder.  The nuances between someone diagnosed with PPD-NOS vs Aspergers is slight - both are on the high functioning end of the spectrum with little communication delay.  I still feel though Ben should have the Aspergers classification (to note that Aspergers will go away completely in the DSM-V and all children on the spectrum will just be classified as ASD) but I was still relieved to know that everyone was all on the same page with him being on the spectrum.  I have read that many children diagnosed with PDD-NOS later go on to receive the diagnosis of Aspergers as well.  Ben will have a follow up appointment in Baltimore in 6 months to meet with a neurologist and psychologist.  

The developmental pediatrician at Kennedy Krieger also gave Ben the diagnosis of anxiety (not atypical for someone on the spectrum) as he is always catastophizing things ("What will happen if I fall asleep in the car and you run off the road and hit a guardrail moma?!")  Really, what kid at age 4 worries about such things?!

Ben's interests still focus on trains, though most recently his focus has narrowed to the NY subway system.  He enjoys looking at the maps, building out the different lines (express and local trains) and is trying to learn each train route.  He also enjoys the DC metro train (specifically the red line) but we're trying to expand his interest to subway trains in general.

Riding the metro after Aunt Sarah's wedding.

Also, if anyone is looking for a good summer read, I just picked up "Look Me in the Eye" by John Elder Robinson (brother of Augusten Burroughs - author of Running With Scissors) which is a memoir of his life of growing up with Aspergers.  It's given me a new insight as to how Ben's brain may function and how he rationalizes things.

Last Day of School!

The boys finished another year in preschool and celebrated with year end parties at St. Davids.  I could not be more happy with the growth of both boys both academically and socially.

AJ can recognize all upper and lower case letters and is eager to go to school (even happier when he sees Ben on the playground).  His teachers, Judy and Kathy, were phenomenal and happy to have him in their classroom.

  

Ben has made so many strides this year too.  Ben can write his name and has improved his pencil grip.  With the help of his resource teacher, Ms. LynnAnn, he will play with other children in non-preferred activities.  He still struggles with transitions and inviting others to play independently but we know he'll make even more improvements next year. Thank you LynnAnn for all you have done for Ben this year!

A very special thank you to Ben's teachers, Ms. Connie & Ms. Sarah, for loving Ben up, challenging him to improve, and for guiding him when he needed help.

Both Ben & AJ will be at St. Davids again in the fall.  

Acorn Balls

Don't ask.  Just know that Ben has overcome his fear of these Sweet Gum Tree seeds as he referred to them as 'acorn balls'.  Systematic desensitization at its finest.

Hey, Girl...

Oh really?  Did I just sign up for this?!  In between huffing pizza to cure my hangover I had some time to scour the internet on Autism facts (getting ready for April's Autism Awareness month).  I came across Sunday Stilwell's blog - Adventures In Extreme Parenthood.  She has two autistic sons yet she manages to keep things positive and is so hilarious.  I think I've found a new dose sanity and I'm excited to start following her.

Also, if you haven't checked out her blog you have to read her 'Hey Girl' ads with Ryan Gosling.  If you don't have a special needs child it may not really register with you.  But for me?  I couldn't stop laughing!!!  I'm going to play along this week and participate.  You'll understand soon enough....

http://www.extremeparenthood.com

How many puffs did you earn?

Ben has been attending a weekly social skills group in Sterling the past 8 weeks.  In addition to Ben learning new social and play skills I picked up some beneficial information from the parent portion of the program.  Our house has turned into somewhat of a preschool learning center with postings of our schedules, house rules, and charting incentive programs.   However it has seemed to help. 

The routines have been good to get Ben on track with following instructions and reducing meltdowns during transitions.  We are able to switch out photos based on the activities they have planned for the day.  This way Ben can visually see what he has planned for the day.

 

Charting has also been very helpful.  We were told that the boys should have a small, medium, and large rewards to work towards.  The key is to keep them incentivized.  And every day the boys should earn 3-4 puffs for ONE behavior.  They should be earning a reward every 3-4 days.  I had tried charting on multiple tasks (eating, cleaning, bath time, sharing, etc) but we learned that is too overwhelming.  So we started with our most problematic behavior (getting ready for bed) and now our goal is to work on playing cooperatively (Ben is not amenable when playing with others). 

As part of our charting system the boys earned a trip to the bowling alley.  Ben really enjoyed bowling but was more fascinated with the ball return.  We were happy that it wasn't sensory overload for him.

And even AJ warmed up in the end!!

Disney on Ice!

Ah, what an adventure!  My friend Brie and I loaded up the mini van with our 5 kids (all under 7) and ventured to the Verizon Center for Disney on Ice (after making a pit stop at Chic Fil A for lunch!)

We hadn't even been there 5 minutes before I spent over $25 on popcorn and cotton candy (one of each).  Thank God I got my tickets for only $15 a pop!

We entered the arena and Ben immediately started screaming - the genie from Aladdin was on stage (that's enough to make any neurotypical kid freak out!) so I dragged the boys back out to the concourse for some time out.  (While I was busy texting everyone how crazy my kids were AJ proceeded to eat the entire bag of cotton candy)

At intermission I finally was able to get the boys back inside - Brie took AJ for the rest of the show (he loved it) and ended up getting some "better" seats for Ben that were close to the door.  I can't say enough kind things about the security at Verizon Center.  Surprisingly they were very helpful and sympathetic to my situation and offered to help me get Ben in to see the show.  It wasn't without bribery of a new train that we got him back into the arena.

Ben managed to finish the rest of the show (asking me repeatedly when the genie was coming back out) but I was happy that I stuck it out to make him experience the fun.

It wasn't sooner than we strapped everyone in and started out the garage that AJ requested we stop so he could 'use the bathroom'.  This resulted in a line of 20 cars witnessing AJ peeing all over my hands.

Logan passed out before we hit Constitution Ave, AJ once we got on Route 7.  Despite AJ emptying his bladder just 30 minutes prior he managed to pee himself once he passed out.  Needless to say, I think this was an adventure well worth the effort!

Parenthood

I've head so many things about the show Parenthood - a drama based on the box-office hit movie that follows a family through their daily lives. Included are characters Christina and Adam Braverman who have a son, Max, that is recently diagnosed with Aspergers. With the arrival of a Roku for Christmas I decided to give it a shot and started with episode one. And I was hooked.

I love this show because I can relate. Watching Christina, Adam and Max was like watching my own life from the outside. Dropping everything for that last minute opening with the overbooked psychologist... color coding my calendar with appointments, therapies, and personal time. Struggling, fighting over things that only an Aspie would fight you on. Avoiding certain activities, rejoicing in small strides, and being your child's biggest advocate. This show has been MY therapy. And I'm excited to catch up and see where this goes!

As for updates on us, Ben started a 'Stepping Stones' therapy at In-Step. It's a social skills group for children ages 4-5. Some of the other children also have a neurobiological disorder, but most are just socially shy or overbearing. It has been nice to talk with other parents and hear things that have worked/not worked for them. And after hearing their struggles I have to think we have it pretty good. Ben is mostly even tempered and has already come such a long way. I'm so thankful that we were able to get him early intervention. Ben continues with services through the county and his resource aid has been excellent at providing ideas to help us at home as well as preschool. I'm currently in the process of setting up charts for morning & evening routines, along with house rules (these are all great for ANY family). It's a little unnerving to cover my walls with brightly colored construction paper but I know its for the best for everyone, especially Ben who operates best on visual aids and positive reinforcement.

AJ continues to be Ben's biggest fan and they play wonderfully together. Thomas also has improved tremendously from his OT and PT - while his diet is limited he is self feeding a variety of table foods. His core strength has improved and we hope to have him walking before his first birthday.

Hope to provide other updates soon! Until then, I'm off to watch episode 28! :-)

National Christmas Tree Meltdown

Yesterday I took the boys to the National Christmas Tree. I thought this would be a DREAM for Ben - all the model trains. What a disappointment. After dragging the boys, kicking and screaming, through metro turnstiles and pushing them 8 blocks in a stroller through the brutal wind we arrived at our desitnation. Only to have happy faces turn to frowns. After 1 minute of admiring the trains Ben started to wail... the 'noises' from the trains were too much. He pleaded with me to leave... begging... while AJ begged to stay and cried as I pulled him away. Who was right to cry? Unfortunately with an Autistic child there is a new perspective with everything and I chose to end our adventure when we hit level 10 meltdown. It was very sad to see someone who loves trains so much so overwhelmed. This normally this would have been such a thrill for Ben. Alas, sensory overload got the best of him.

All was not lost as Ben enjoyed the metro ride and a soft pretzel on the way home.

This experience was a good reminder on what we have been fighting the past few years with Ben. It still frustrates me when people meet Ben or even people who know Ben very well scoff at his diagnosis of AS/Autism - he is high functioning, yes, but we still struggle daily. You'd have to live through it to understand. The past few weeks have been really hard for us. The lack of sleep and excitement of Christmas, coupled with routine and schedule changes has thrown Ben off kilter. For every good day we have terrible ones. I'm looking forward to brighter days when things get back to normal around here!

D Day.

I knew the day would come so I guess I can say I'm not surprised. But it didn't hurt any less.

Earlier this week when picking Ben up from preschool I asked him who he sat with during snack time. He grew quiet. Not because he doesn't remember, but any time I ask him a question about his social life he changes the topic. Not today. He was brutally honest.

Me: "Who did you sit with today, Ben?"

Ben: "Um, no one."

Me: "Are you sure, no one? Which friend did you sit next to at snack time?"

Ben: "I sat with the teachers."

Me: "Why?"

Ben: "Because I don't have friends. No one likes me, they think I'm mean."

This is pretty hard stuff to hear from your 4 year old. But I can thank God for AJ who truly looks up to Ben in every light. I do think Ben has already sensed his difference from his peers. He does't like school and doesn't really care for any of his classmates. When one girl wished him a Happy Birthday at school he simply walked past her if she didn't exist. That doesn't mean he can't have a good time at a play date or participate in group activities. However, he also shows no concern about other children. On Tuesday Ben refused to enter the pool at swim lessons (though he was doing so great for weeks prior) because his swim instructor "cut her hair" (yes, she did have a new haircut, but only Ben took notice). This started the downward spiral for us around here this week. Other days he does great and surprises us all, such at his birthday party when he shared his beloved train cake and smiled through all the activities.

I mentioned before but Ben qualified for services through Loudoun County. To give you some more background, the school psychologist came to evaluate him and gave him a battery of tests. He tested on the high average on his IQ (not that it means anything at this age) but in other assessments he came back as probably for autism and high/probably likelihood for Aspergers. This is nothing new to me. But it is a good reminder that Ben IS different, despite how many other people who think he's fine.

In other GOOD fortune, the boys were accepted into a program at John's Hopkins Kennedy Krieger. It is a study for siblings of children of Autism. What does this mean for us (besides hours and hours of paperwork for me to complete and days of assessments in Baltimore for all three boys)? Essentially this will provide us even more information about ALL of our children at no cost. Believe it or not, the likelihood of having a 2nd child with Autism is even greater than the first. And if you have 2 children with autism, the the risk factor for the 3rd child becomes over 30%. Now I think AJ and Thomas are very different from Ben and most likely will be healthy and neurotypical. However, the gut issues and severe sensory aversions that AJ suffered always has me thinking...

Will keep you posted on what we find! Until next time, I'm trying to keep my sanity! :-)

Meet the Teacher - Preschool 2011

Yesterday the boys had their Meet the Teacher at St. David's! Ben will be in the morning program Monday, Wednesday, and Friday mornings with Ms. Connie & Ms. Sarah and AJ will be attending Wednesday mornings with Ms. Judy & Ms. Kathy.

We have been doubly blessed to find out that not only does Ms. Connie have first hand experience with Aspergers but yesterday Ben was also granted special education services through Child Find. I am so thankful to all of the friends and family that have supported us through this process.

Here is to a great future for our children!

One of many colors on the Spectrum

I was recently shared this perfect narrative on raising a child with special needs. Most of you may already know a little bit of my family history, but for those of you that don't, this short video will give you a little more information on how special Ben is.

Between the struggles we had with Ben & AJ as infants (through GERD, ulcers, colic, sensory aversions, etc) it was only after we sought therapy for them last summer for the sensory integration disorder and feeding difficulties that I was certain Ben wasn't like other children his age. On May 27th my heart broke as my initial self-diagnosis of Ben was confirmed. I had been seeking answers for almost a year, waiting patiently on wait-lists, researching information, calling the county for help, reading countless books, and I wanted the diagnosis so I could move on. And here we are. My son is on the Autism spectrum and has been labeled with Aspergers.

We've had a crazy few months between the new addition of Thomas and bouncing back and forth between the developmental pediatrician, developmental psychologist, and neurologist. We're on the waiting list at Hopkins for a 2nd opinion as one doctor says he's on the spectrum and the other is hesitant to label him right now. The psychologist from the county also gave Ben a label of high-functioning Autism. Everyone has their own diagnosis for Ben, but I knew in my heart long ago that Ben was probably on the autism spectrum. Even close friends and family sometimes question this diagnosis. But his teachers, nanny, and those who spend the most time with him in a number of different environments recognize that he is different from other children his age.

We are fighting with the county to get him the assistance he needs - since his symptoms and behaviors are very slight it's hard to see that he may need help. We keep hearing over and over- "Ben is bright. He's above average intelligence. He plays great with his brother and has good communication." What isn't seen in a 30 or even 60 minute evaluation is that he struggles in playing and relating with his peers, he's a little quirky, his sensory issues still exist, he gets upset when we do things out of routine, and he can have severe meltdowns or anxiety over something small (such as when our nanny showing up wearing glasses one day). I have no doubt that Ben will overcome these problems and be a healthy and happy boy once we get him the treatment he deserves.

I have been trying my best to keep busy, pushing Ben's limits by enrolling him in camps, swim lessons, tumbles, library time, etc. He was in occupational therapy (until my insurance denied it) and has Floor Time therapy from a local Social Worker. All of this in part is driving me insane but even these small strides have made a world of difference. I'm so thankful that Ben & AJ have one another - always.

While this blog has primarily been of sharing photos, videos, and an attempt at humor, I will also be focusing on the progress we will be making as a family. This will be my therapy. Thanks for sharing in our journey!