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!

Christmas 2011

Fa-la-la-lala! Christmas Eve... peaceful looking, yes (minus my lone hanging stocking - all I wanted for Christmas was SLEEP... though I'm not sure that wish has been granted yet with all the sickness we've had around here!)

And the madness begins.... Christmas Eve was spent with the Phillips family. Nana spoiled the boys with too many toys and clothes which AJ modeled for us throughout the evening.

Even Thomas was excited to open his very first present!

Christmas morning the boys were excited to open their gifts. Threats of coal didn't deter behaviors earlier in the week but charting how many gifts would be withheld on Christmas morning that Santa delivered (Ben:1, AJ:2) did seem to improve behavior 2 hours before bedtime.

I was lucky enough to score the 'hot gift' for Ben this year (the Leapfrog... thanks Christy!) but got the lesser 'Explorer' for AJ. We're trying to move their attention away from trains. Ben ripped through everything until he found his 'grown-up' train (not at all appropriate for children under 10) but it was what he asked Santa for so he couldn't let the little guy down.

The Sinclair side joined us for dinner on Christmas and there was more than enough food to go around. We're still eating leftover. Barf.

We've been very blessed to have family with us this year and tons of new toys to hopefully keep us busy.

Happy Friday!

Santa comes to Leesburg again!

Last night we had a special visitor. No, it wasn't CPS coming to haul me away. None other than SANTA! The boys were very excited for his arrival.

Even Thomas was in good spirits.

AJ was very tentative when Santa arrived but opened up a little when he told him he had a present for him. Each boy received a train Christmas tree ornament, just like last year!

They were lucky that this santa had now knowledge of THIS prior event earlier in the week.

Looking forward to Christmas and what goodies Santa is bringing us!

December, in a nutshell

Well, I can't believe Christmas is almost here. I really hope to get at least something posted from the holidays before the New Year but that may be pushing it. So, here are a few things that we've been working on this month!

I mentioned giving an update on the boys allergy testing - we had patch testing done for each of them... had to wear a patch with food samples for 48 hours straight (photographs for the next 72 hours following!) to see if there was any major issues.

Looks like Thomas is allergic to soy, oats (explains a lot since we'd been thickening with oatmeal the past few months!), eggs, sweet potatoes and wheat. Ben, pork and green beans (not that he eats that anyways) and AJ looks like white potatoes (his favorite treat? french fries!) Allergy testing is very subjective (so they say) and there are a lot of false positives. But its a good measuring stick to start and exclude from their diets to see if their reflux and behaviors improve. Thomas is already a happier camper the last few weeks with his new diet and switch to Elecare formula. We're working on PT and OT to have Thomas to build his muscle tone and learn to eat solid foods. H makes a huge mess when eating (not good for people like Seth and I who are OCD with dirt) but I guess it's part of raising a baby... and he's so darn cute so how can we resist?!

One benefit of having to drive to Springfield to see the allergist is that Clifton and Fairfax Station aren't too far out of the way. I was lucky enough to catch a freight train passing through downtown Clifton right as we approached and then we stopped by the Fairfax Train Museum (which was closed) but the boys were still happy to peek in the windows and look at the caboose from the outside.

AJ had his class holiday party today and then both boys had Sing & Celebrate. AJ loves preschool (especially when he's joining Ben) and we are working on Ben to love his classmates as much as he loves playing at home with his trains. His teachers and service providers have been excellent and we know he is making lots of progress.

Ben & AJ make wonderful playmates, though we are usually finding them up to no good. At least they collaborate instead of fight so I won't complain too much. For now ;-)

More Therapy? I'm going to need therapy after this!

I haven't been updating the blog recently... shame on me. Between sickness and work this is another 'to-do' I've let slip!

An update from our visit to Kennedy Krieger back in October for a study of siblings of Autism... things went well. After 7 hours of testing for all three boys we found out that AJ is normal (gasp) and functions well above his age in all areas they tested him in. Ben also tested high, but they didn't see any issues and then questioned us "Who exactly qualified you for this study?" Yet another group of individuals who thought Ben was a very bright boy with no issues. However, as we are all well aware Ben does well in a structured environment with adults. So this was no surprise so I took this '4th opinion' with a grain of salt.

However there was a surprise with Thomas! While we all assumed he was the 'normal' one in the family we quickly learned that he missed many of his developmental milestones (for even just a 7 month old they could decipher this - remember, we were there for HOURS!) This was mostly attributed to his gut wrenching pain from GERD that left him short of screaming the entire day. We were recommended to follow up with Early Intervention with our county, which I did the next day. He was qualified almost immediately, primarily for OT/PT and feeding thearpy. His biggest issue is week muscle tone through his trunk and hypertonic muscle tone in his limbs - which has been ascribed back to the pain from his reflux. While Thomas rolled over at only 2 months and was crawling at 7, he struggles to properly sit up, reach out to us, and hold his bottle. He was failing to meet milestones for expressive speech (even at his gestational age) as well.

Due to the increasing medications and lack of improvement with Thomas' symptoms we sought a second opinion from another GI who switched his formula to Elecare (and elemental formula). This HAS improved his symptoms over the past few weeks and our little guy is finally 'talking' and trying new things. We also took him to a specialist for allergy testing - using patch testing to rule out some other potential issues. More on that to come...

I guess what I am learning is that even with a son diagnosed with Aspergers (relatively young) and with two children who have already been through the gamut of OT and feeding therapies I still was shocked to learn that Thomas ALSO needed therapy. I know how important early interventions are so I am forever grateful that we are getting help now. I may go crazy in the interim from raising all these loons, but I know that in time all my boys will be healthy, happy, and functioning well among their peers.

Black Friday

Seth and I had a babysitter lined up for the Friday after Thanksgiving... thought it would be fun to do something for the two of us. Alas, we are always thinking of the children and decided taking Ben & AJ to the movies may be fun for all. So we ventured to see the Muppets... on the opening weekend of the most busy day of the year at the movies. We carefully arrived 20 minutes before show time and the line had already formed, leaving us at the end. We scored 3rd row seats and craned our necks through 30 minutes of previews until the movie started an hour after we arrived. The boys enjoyed it and did great for their first movie considering the circumstances. Granted, they each went through a bag of pop-corn, chicken tenders & fries, M&Ms and starbursts and a water bottle. This was all before the movie was even halfway through.

Metro Time

A few weeks ago we took the boys on their first metro ride into the city. We were nervous how they would do with the loud sounds and they did quite well and very much enjoyed the trip. Granted, we were all sick with a terrible cold so any energy to muster up emotion was lacking.

When we got to DC we went to the Museum of Natural History and the National American History Museum to check out the train section. It was a huge hit.

Yeah, whatever your pointing at AJ is probably not as interesting as what's behind you... (well, I take that back, I guess he is facing the Capitol)

Even Thomas enjoyed the day.

Happy Halloween!

The boys had a great time this year - I think the first year they actually were excited and worked up for Halloween!! Ben was super polite and after they were done trick or treating they handed out candy at home as well. Can't wait for next year!

Thomas is crawling!

While Thomas has been on the move for quite some time this weekend he has taken things to a new level. Crossing the threshhold in a matter of seconds is no feat and Ben & AJ couldn't be LESS thrilled about it.

Happy Friday!

Poor kid... if only he felt as good as he looked! Still trying to resolve reflux stuff... we'll get there, eventually!!

Pumpkins, Apples, and Trains OH MY!

I've been slacker on posting an update... so, I'll just combine everything together! A few weeks ago we took the boys to Layngs Farm in Ashburn. I think they've outgrown this place.... or should we just say the stink bugs have overtaken and we're not ready to go back! They really enjoyed playing in the sandbox more than anything. Note to self - save the $21 bucks next year and stay home!

Over Columbus Day (was that the holiday we had off?!) my brother and Cori joined us bright and early to treat the boys to a trip up to Thurmont. They've been asking to take them since last Christmas! We went to an orchard (ironically we weren't allowed to pick apples, but did anyway) and just played on the playground for a bit.

Ben didn't waste any time marking his territory by the train.

AJ picked the largest pumpkin they had and Ben was content with the smallest. We didn't purchase either one.

After an hour of wearing the boys out we went to Cozy Inn. This place is like the Great Country Buffet but with my mom's touch (aka, 4 sticks of butter) and filled with old people and bikers. It was awesome and worth the trip. There was a caboose out front which the boys loved and they filled up on 'milk cake' and everything else that was terrible for the heart.

The way home the kids were overtired and insane and screaming. Needless to say I don't think Jon and Cori will be having children any time soon. The good news is they were really helpful and the boys had a great time with them!!

Happy Friday!

Thomas is 6 months old! Here is a photo of him at Ben's birthday party, sporting some nice duds that he quickly pooped through after this photo was taken.

As for his stats, he is 15 lbs (19%) and 26" tall (50% height). His head topples in at 17/5 " which is in the 70% for his age. Thomas is on the brinks of crawling and has no problem making his ways across the room to get what he needs by rolling there!

In other not so good news Thomas showed more occult blood in his stool at his checkup with Dr. Sirlin today. Poor baby still can't overcome the reflux. Not that I'd expect any less from a Sinclair boy!

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! :-)

The Celebration Continues!

I will say that Ben may be the most celebrated child of this year!! Thursday Marisa came out and spent some quality one on one time with Ben. She took him to enjoy a smoothie (one of his favorite treats) and surprised him with a new Thomas movie and train car. He was in heaven (until an hour later when he was pumped full of an armload of shots at his 4-yr checkup!)

Saturday we held a small party for Ben at the house. He requested a carnival theme (more so, I politely recommended that since I'm tired of trains and we had a popcorn machine collecting dust in the basement). My mom cooked the hotdogs (they exploded) and Seth's mom was in charge of games. The kids were so happy to play along and we finally celebrated our first birthday for Ben without tears!

Sunday the celebration continued as Uncle Jon and Aunt Cori took Ben to the Lego store for his long awaited trip to pick out a present. It is no surprise that he chose this (rather expensive) Lego Train and has been playing with it non-stop (and sleeping with the train engines). It never ceases to amaze me how many different trains this child can obsess over.

Afterwards Ben had a special afternoon with Nana before rejoining me at a feast that Uncle Jon & Aunt Cori hosted at Texas De Brazil to reunite the Phillips and Sweenys. While Ben didn't take full advantage of all they had to offer he did chow down on a few plates of rice!