Writing Prompts

One of the many things I have been learning about my son is how much of a struggle writing is for him. Quite frankly, this came as a big surprise. I had no idea I was that far out of touch. He'd written a number of papers and spent much of his second grade year learning to write the perfect paragraph, courtesy of his much loved teacher, Dolores Peck.

So, fast forward a few years and John is once again required to do a morning writing. In the past they have been called check-ins. This
year they are called writing prompts. Whatever they are called, they are basically the same thing...a morning writing opportunity.

John has developed quite the attitude about writing prompts. When his teacher does get him to write, his tone is incredibly rude. I am embarrassed by his lack of respect in his writing. The truth is that John has a great deal of love and respect for his teacher. She just takes the brunt of his writing frustrations.

Interesting that this should come to a head right about the time we learn that John has autism. Textbook. Kids with autism often have a hard time expressing themselves and have little use for reflection.

So, lucky kid has a Mom who has taken on writing prompts for Spring Break. He's not feeling so lucky. I will say though, today (Wednesday) was his fourth writing prompt and he needed far less direction than in previous days. Sunday he wrote his first prompt. That experience was incredibly unpleasant for us both.

We may have to work a deal with his teacher regarding topics. This week he is writing based on activities he has enjoyed. My ability to talk through with him what he might want write is really helping. Of course, writing isn't exactly my forte either, so here's hoping we are getting it right.

I would let this go if I didn't believe this will lead to compounding learning issues in the future. 3-5 sentences now becomes 3-5 paragraphs in middle school and 3-5 pages in high school. John is clearly geared toward math and science. Nonetheless, a high school diploma and college admission are pretty dependent on passing English...year after year after year. Oh the fun in store for us...

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Clinical Research Study

Today we spent a long day on the NIH campus. I have spent very little time actually on campus, which is ironic since Lang works there.

I had seen advertised multiple times through the Cure JM website that NIH is running studies related to James' dermatomyositis. One study is just for James, a study of myopathies. The other involved John, Lang and me as well. This one is attempting to determine the causality of autoimmune disease.

The letter home said no meds until after the blood test. This proved unfortunate as the boys went without their ADHD meds. We learned later that we were allowed to take meds, but then I had left them in the car. I did have smaller doses in my purse, but the morning's anxiety already had a foothold in their behavior thus proving largely ineffective.

That said, both boys see the value in participation. While we are unlikely to benefit from this research, someone else will. And, both James and John have already benefited from research done into dermatomyositis and ADHD. Thankfully they understand these things.

Oh...and they each get $50. Actually, it pays $100 each, and James gets a second $100 for the myositis study. Too much money for them.

I was amazed at how much blood they drew from the boys, something like 14 vials. John came really close to passing out after his blood draw.

By the time we left, John was reading the board, looking for additional studies he can participate in. Too funny.


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Rocket Boy!

John and Lang spent the last week building and finally launching a model rocket.

It all started with our winning the lottery to purchase tickets to see the launch of the space shuttle. Our visit to Kennedy Space Center was inspiring to a certain red-haired boy. He decided then and there that his science fair project would be to build and launch a rocket.

Shortly after our trip, Lang and John visited the NOVAAR monthly launch. About this time we learned there are all kinds of restrictions on building your own rocket, particularly after 9/11. So, at the launch Lang and John came home with a kit.

Winter was cold and busy. The rocket was finally assembled and then launched on April 2nd. So much excitement!

The weather was questionable on the morning of the 2nd. Club launches only are allowed in the mornings with the public welcome after 12pm. We decided to shoot for 12:30pm...when James, Joseph, Gram and I could get there too.




Morning weather was fabulous, then a quick bout of nasty weather followed by a short clearing. John launched his rocket during the clearing.

The rocket went straight up, beyond the cloud cover, got caught by the wind and we watched as it drifted miles away. We never saw the rocket fall, nor did we ever see it again.

Trauma. John's first rocket is gone. That's about all he can say about the experience. We did manage to console him by sending him off to the hobby shop with Lang to purchase some new rockets. He still wants to find a replica of the first rocket, paint it the same as the first, and keep it forever. No launches for it.


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The Report

And so today I finally managed to get my hands on the report resulting from John's school assessments. I still have no idea whether or not he will receive the services/support that we believe he needs.

My suspicions are confirmed. Both the test for high functioning autism and the Aspergers test came out positive. John lies somewhere between the likely and very likely to be on the autism spectrum. I don't know if this is an official diagnosis. We will learn more on Tuesday at John's Eligibility Meeting.

The kid also tested between high average and very superior in almost all academic areas. There were a few exceptions, spelling being the standout. The kid can't spell.

Our biggest issue has been the balancing of meds and appropriate therapies. We ran out of money and discontinued his out of network social skills group. He is maxed out on meds. His new doc, the neurologist, is trying to get his body to forget the Focalin so we have been on Adderall on the weekends. This has been even less successful than the Focalin.

I think I have to determine what it is I think I want out of all this. If asked right now, based on what I read, I would ask for speech to address his pronunciation and help with cues. I would love for the OT to maintain at least enough relationship with the boy such that she would be available to help Eileen figure out what works best with John. Finally, I would love for some sort of therapy to occur to help address his behavioral and social deficits. This could be in the form of a social group or a one on one meeting with the counselor/psychologist.

My prayers were answered the first time. The school has seen what we see. Now I am praying that this warrants an IEP and not simply a 504.


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Making a Bloody Mess

Today in Bible Study we discussed that really awful things do happen to people. I think many Christians believe themselves to be immune. We are not.

I'm not a huge John Piper fan, but I find his ministry both excellent and convenient. He posts little snippets on facebook 1-2 times per day and also has a blog with short entries which feeds directly into the RSS feed app on my iPhone.

This morning I was able to apply this facebook posting to our discussion, "Fly this banner over every wound and regret, 'Satan meant it for evil, but God meant it for good.' Genesis 50:20" Deep stuff.

I am blessed in that although we have faced a number of threats to my children, both in terms of health and significant developmental delay, I still believe it is possible that each of my boys may grow up to be godly young men who are able to be active contributors to community. That is my prayer for them...not that they be awesome by the world's standards (although I must admit that is tempting), but that they love the Lord their God and are able to be a positive member of community.

When I came home, I read one of Piper's blog entries. It read as follows, "Like Jesus in the boat with his disciples when the storm hit, trouble usually has the appearance of being in control. But just because we can’t control trouble does not mean trouble is in control. Jesus is in control and he’s in the boat with us." I found this to be truly profound and well timed.

Not much later, I received a call from school. Apparently John had been in a playground accident with another child (Isaac) and received a good hit to his head. Wendy, who called, sounded a bit pressed. "Could I please come to the clinic?"

So...here is trouble. What kind of head injury? How much do I panic...or not? I was calm. Even thought to grab the iPod for John to enjoy in the ER (should it be necessary) and called Mom in case I couldn't pick-up the other two.

When I got to school, I was almost disappointed. To me, the kid looked fine. He was a tad bit dazed and confused, but then that happens after any injury from the overload of adrenaline and endorphins. Apparently he had been a bloody mess, as was the other child. Head wounds are fun that way.

John's front tooth had been displaced by the impact of his teeth in Isaac's eyebrow. So, after a quick trip to our fabulous dentist we learned that the gums above the tooth are swollen, bruised and inflamed. He'll be taking anti-inflammatories for a few days. We have every reason to believe he will keep the tooth.

So the bloody mess which made such an impact at school turns out to be nothing more than a minor injury. Both John and Isaac are fine. We are blessed to have had very few accidents with these boys. Pretty sure that I had more trips to the ER by this age than my three put together. I'm not complaining.


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Lousy Day

Today was kind of a lousy day. I'm not sure if blogging about it is akin to whining...but at least the first part is worthy of a laugh.

Running out the door, I soon discovered my car was dead. I couldn't get the door open because John jammed a stick in the door lock a few years ago and busted the lock. The Honda Odyssey has exactly one key entry.

Today was Odyssey of the Mind. James' team created an unhinged structure as their main long term problem. John's built mousemobiles. The whole concept behind the competition is amazing.

My job was data entry in the scoreroom. I kind of liked that. What I didn't like was that since I was so scatterbrained, I forgot my laptop. They gave me another to work from. The people were nice enough, but basically the whole room is run by a single family and everyone else is extra. The center is the family. This made for a long day.

James team did fine in their long term problem, with the noticeable exception from our perspective that they skipped his part in the skit they performed. I know nothing of what happened in the spontaneous problem. James had a great day.

John, on the other hand, had a rather lousy day. It all culminated with the breakdown of their mousemobiles, incorrect narrating for part of the skit John was participating in and finally arguing during the 8 minute performance time. Their team was actually docked for "hitting," although we still aren't sure there was actual hitting.

John became a hysterical mess and still hasn't recovered. These are the days when I wish I could just hit a reset button so he can function again. Ugh.

We've all been cranky this evening, well not Joseph. It is so good to see James and Joseph. I've missed my little cuties. God has blessed me abundantly with a great husband and three fabulous children. That is easy to say now that lights are out...good night!


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Williamsburg

I am exhausted and tomorrow is yet another busy day. Nonetheless, I am choosing to blog now, knowing that if I wait important details will be missed.

Last night, after I finally succeeded in getting the boys to bed, I completed their binders. I am hopeful that they will find it interesting to leaf through, finding fascinating depth to our visit. I then took the time to map out our visit. Brilliant!

So, my plan called for an Orientation Tour at 9:30am. Well, the Visitors Center doesn't open until 9:15am. We were there by 8:30am. That effort flopped, but the boys had a great time running around outside.

John threw a rather impressive fit about dressing as a colonist. Many, many kids were dressed today. The boys had their pants rolled up, white socks and their colonist hats from Herb's play. They looked great!



After the Orientation, we quick ran into the Courthouse to hear some cases. Fun and rowdy were the proceedings. The boys learned how and when different forms of punishment might be used. Then they had to try some out for themselves.






From there we went to hear Patrick Henry. He started out GREAT and I was so glad we made it to hear him. Then he kept going and I nodded off. The late night of binder assembly was coming back to bite me.

I found lunch for $30, which all in all isn't bad. Yummy hamburgers and hot dogs from a college joint (it was less than a block from the campus of William and Mary).

Somewhere along the way, John lost his ticket. Tickets are required to get into the various buildings in Williamsburg. We were pleased to discover we could replace his ticket for $3 instead of the full $11.50.

In my opinion, the best part of our visit was seeing the trades. We visited:
- shoemaker
- weaver/dyer
- gardener
- cabinetmaker
- cooper (makes buckets and barrels)
- wig maker
- bindery

We would really have liked to visit the blacksmith as well, but we don't think they were open.

We toured the Dunmore Palace. Can I just say that I am glad I did not live in those times? Even those who had it all had so much pressure to perform...making all that luxury not really worth it. That said, maybe it might be worth it given the "non-corn" maze in the back. Fun!

We headed over to the Capital and were told that we needed to wait 15 minutes for a 30 minute tour. We ended up skipping the Capital and heading over to another building to learn about cracking Codes & Ciphers. The presentation was fabulous and all the kids liked it. John was enthralled.

As we left, we stopped to watch the Fife & Drum Corp and a small group of soldiers strut their stuff. Fun! They fired musket AND cannon! Perfect for boys. Personally, I loved the band.

We decided to walk back to the Visitor Center. I did not to the best job in directing us, causing us to walk at least another 1/2 mile. Once the Visitor Center closes you have to walk around the huge building to get to your car. It was maddening.

John lost it in the car on our way home. When I finally got food in him, he settled and enjoyed the rest of the trip with his friends. I was pleased to have everyone dropped off and still get home before 9pm, meaning I got the boys home close to their expected return time. Yay!

Our "must do on the first visit" map sent us to another rich person's home. It was closed. None of us were disappointed. There was no excitement in following the culture of Williamsburg's wealthy.

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Jamestown Settlement

Today and tomorrow are parent/teacher conferences. I have been wanting to bring John to Jamestown since September. On Saturday it occurred to me John has nothing on his schedule. By Sunday I had child care worked out for the younger two. Monday assured the company of two friends from John's class and now on Thursday, here we are!

John LOVES to learn. He is such a joy to bring to places of learning because if the material is well presented, he wants to know it all. I thought that was true of all "smart" kids. His two friends are every bit as smart as he is, but just not as interested, one moreso than the other. That said, they are fabulous kids and John is blessed to be able to count them as friends.

So this morning John and I went running out the door for parent/teacher conferences. Can I just say that I am blown away by what fabulous teachers my children have? John's teacher actually called him "refreshing." And this is even with his meds barely working. Blessed. So very blessed.

After conferences we picked up his two friends and were on our way, arriving in Jamestown at 1:30pm. We went straight to the Settlement and began our tour.

Before we left, I spent a small fortune on ink and made the boys binders with information on Jamestown and Williamsburg. Jamestown is amazing. On their website they have scavenger hunts which makes the time in the museum that much more fun. John brought his binder in with him and was keen to complete one of the hunts. The other two boys helped. Fabulous.

Have you noted that I like the word "fabulous?" I really do. So many things in my life are. Blessed.

After the museum tour, we grabbed a snack before heading outside. It was cold but sunny, so overall the experience was...yes...fabulous. There were also very few visitors, so we pretty much had the run of the place. This was good because it turns out other boys are as crazy as mine...pinecone fights and wrestling abounded.



We were able to have a lengthy discussion with a docent about the Powhatan Village. We learned how to make rope, and Ian actually made some! We also learned how to make leather.






We then headed to the ships that brought over the colonists. One of the three ships is only 66 feet long. I was stunned by how small they are. To me, if it is not the size of the Love Boat, it is not ocean ready. Of course the boys think the boats are the best part of the Jamestown visit.

The Settlement was fascinating. It was painful to recognize all the hardships the settlers faced. Of 104 who arrived on May 14, 1607, only 38 were still alive the following January. I wonder where we would be today if they had given up and gone home. As I was chilled walking around I silently thanked those who had gone before. No central heating or tyvek wrap on their homes. No coats rated for -20 degrees. Brrr.

At the James Fort we found a docent firing a musket. Perfect for boys! John even answered a question which stunned the docent...who then suggested a future career path for the kid. The boys learned how they were fired, the differences between and musket and caliber gun, why neither musket guns nor bows/arrows could be used in the rain, and finally how to clean a musket.

We closed the place and found our hotel. I booked it with my Priority Card and we received a complimentary upgrade to a suite and a free appetizer for dinner. Oh...and all the boys eat free. Score!

The hotel has a pool, so after a quick trip to Walmart to pick up a suit (and bigger binders for all my printing), they are in the pool and I am blogging. The perfect evening.



Tomorrow? Colonial Williamsburg.




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LAUNCH!

This entry is a follow-on to my previous note on Wednesday. At the time we were in South Carolina, southbound to Florida with high hopes of seeing the launch of the Space Shuttle Discovery. We now find ourselves back in South Carolina, heading home.

Reserving hotel accommodations makes me crazy. On road trips, I'm never sure where we are going to stop for the night. I started trying to find a hotel while we were still in South Carolina and I realized we would make it close to Cape Canaveral. All I could find was Daytona. I should've booked it. Instead, we took our chances. The big mistake I made was not clearly expressing to Lang that we couldn't get to close to Cape Canaveral as all the rooms were booked.

So...after getting too close, we back tracked up north...to southern Daytona! We took the first room we could find (mistake #2). That said, it was cheap...$65!

We left the room the next morning, six and a half hours after we arrived, and headed south. At 7am, we were about the 10th car to arrive at the Astronaut Hall of Fame. This was particularly spectacular because our early arrival allowed us the opportunity to purchase tickets for rooftop viewing.



The boys spent the early part of the day running around the grounds and participating in interactive displays at the Hall of Fame. Then Mom got mean and out came the homework. About this same time the temperature "soared" and we were complaining of the heat.






Once homework was done, we gave up our front row viewing spot and headed to the car. Everyone needed to cool off. iDevices were the order of the day, in fact, the whole trip. We now have a new favorite family game: Harbor Master. Nicholas introduced John to a game about zombies, surfs and growing crops...sounds like Farmville on steroids to me. The best part about Harbor Master is that if played on the iPad, multiple participants can increase the chance for a higher score.



When it was finally time to head up to the roof, I tried to get a group picture of the kids in their matching "I was there!" t-shirts. Joseph was NOT cooperative...stood behind the group and said "cheese!" Ugh.






On the roof, the iDevices came back up until launch. In a populated, confined space, effective child control is critical path.



About 90 minutes prior to launch, an announcement came that some sort of tube had been pulled and one of the shuttle's CPUs was down. Discovery had only a FIVE minute launch window on Thursday. The problem had never occurred in any previous launches, yet they had not much time at all to get it fixed...which they did...at the last minute. Phew.



The site was amazing! The boys were mesmerized. This was why we spent 24+ hours in the car over a 59 hour time period. Definitely worth the drive.















After the launch we and who knows how many thousands of others high-tailed it to our car. At first it appeared we beat the rush. Appearances can be deceiving. It took us two hours to go 2 miles, and another hour to drive another 15. We finally made it to Brunswick, Georgia at 11:45pm, stayed the night and made it home at 9pm Friday night. 59 hours, round-trip.

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Road Trip

As I write, we are mid-way through South Carolina traveling south on I-95. You will be glad to know it is Lang's turn to drive.

Our destination is the Astronaut Hall of Fame in Cape Canaveral, Florida. The Space Shuttle Discovery is set to launch tomorrow at 4:50pm.

This is our second trip to Florida to see on of the final launches of a space shuttle. The first was in the fall when Discovery was set to launch on Monday, November 1st.

In November, we left in time to spend a day at Sea World prior to the launch. The launch was delayed before we even made it out of Arlington. Then delayed again, and again, and again.

We ended up spending two fabulous days at Sea World and another two amazing days visiting the Kennedy Space Center Visitors Complex. The boys came home with their minds full. Impressive classroom presentations were begun before we ever left Florida.

Finally, the shuttle was due to launch on Friday. We loaded up and arrived at the Astronaut Hall of Fame by 7am. It wasn't long before we learned the shuttle was delayed until Monday. We packed up, raced back to Orlando to check out of our hotel, and made it back to Arlington by 1:30am. We hadn't even made it out of Florida before we learned that the shuttle had been delayed to November 30th.

Since then, there have been a number of scheduled launch dates, none of which happened. Finally, the shuttle was rolled back into the VAB (Vehicle Assembly Building). It was announced in late January that the new date was February 24th. Of course this is only two weeks after Lang's neck surgery.

So...given the changing of dates, Lang's neck surgery, other scheduling considerations and the variability of us catching one of the viruses flying around Arlington, we didn't really know until yesterday if we would indeed make the trip.

So, Tuesday we confirmed our plan to go. John's friend Nicholas was able to join us, and now we're on our way! At some point I should probably do something about a hotel reservation...

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Settling the Argument

Tonight I asked the boys, "Shall I make cookies or milkshakes?" James said both, then retreated to cookies upon the realization that I would not make both. John wants a milkshake. Of course.

Thus ensues the battle. Each child taking up his own position. Cookies. Milkshake. Cookies. Milkshake. Then Joseph gets involved. Joseph will have cookies. His vote doesn't count as he is allergic both to the cookies and to the milkshake. He'll have milk free cookies either way.

The solution? I left the room. Either the boys come to a consensus or I make nothing.

It gets better. As I write this I am overhearing the argument over tonight's movie choice. Do I really have to get involved?

Back in the kitchen, ground rules are laid out. First, the movie must be appropriate for Joseph. This was later defined as animated. Second, both children must agree on said movie. And finally, if you don't get what you want you may not sulk. You will still watch the movie. Also suggested was the concept that if someone gave on the movie that maybe the other could give on the cookies/milkshake.

Of course they couldn't come up with any movies. So Lang and I headed downstairs and came up with 8-9 movies. John was allowed to pick three. James made the final choice. It wasn't what John wanted so he sulked. James didn't really want any of the three, but he was a relatively good sport about it. Score one for James.

Finally we got all the kids downstairs for the movie. There were no snacks. They never made a choice and providing anything at that point would have removed the consequential disappointment. Thankfully they all enjoyed the movie, although Joseph did take a break to help me with the laundry.

Sometimes a good family night has a rough start. No reason not to persevere and teach a few life lessons (which will sadly have to be learned again and again).


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Parenting the Bully and the Victim

I cannot even begin to tell you how upsetting it is to have your child bullied and teased. We've been through it with John a number of times. I've always said I'd rather be the parent of the child who is bullied than of a bully. At this point, I don't know.

John's first experience being bullied was a one time deal. He was a little guy, not even three, and we had met school friends at the McDonald's Play Place. James had just been born, was maybe a week old. Some kid in the play structure was unable to communicate with John due to John's speech delay and took to grabbing his head and bashing it into the tunnel floor. I handed my week old child off to the nearest hands and climbed in after him, pulling at my stitches as I went. I was apalled that the other mother neither sent her child to apologize nor came over herself. She did leave right away though, and I remember remarking how much harder it would be to parent a child who hurts people. John was fine.

John escaped with only minimal teasing until second grade. By this time there had been a transition in teachers. Unlike every time before, this new teacher was not a fan of John's. This did not help things.

So, basically what happened in second grade is that the kids would incite John into overreaction. They played on his sensitivities, calling him names, messing with him, etc. Somehow the teacher never saw this. What she did see was John's overreaction. John got in trouble every time and the kids were doubly rewarded. Of course John never told us any of this. John's best friend told his mother who called me. When I e-mailed the teacher about it she ignored me.

That same spring John began making random noises. He barked at baseball camp. The kids gave him a really hard time for it.

Needless to say, after John's second grade experience, we switched schools. My attitude was that we could "get this for a free," referring to the unsafe classroom environment. We have been beyond thrilled by his new school.

John somehow did well for a year and a half when he walked right into another bullying environment at swim team in the locker room. I don't think the kids expected his reaction to be so entertaining the first time he was singled out. John set himself up to be a fabulous target and getting it stopped took months.

John has a couple big things going for him...he is a relatively good looking kid, he's athletic, and he's smart. Kids who know him well overlook his idiosyncrasies.

All of the aforementioned bullying opportunities took place outside of our purview. Sadly, we've also got our very own bully in the house.

I'm not sure how or when or why James started to mess with John, but he just can't stop. It has lessened since he went off the steroids, and the focalin helps somewhat, but James just can't help but pester. John is his favorite target because of the incredible overreaction. Joseph he just incites to cause trouble of his own.

We have had issues at school with James pestering/bullying John during dismissal. I've sent e-mails. I've been to the principal. We still don't have a solution. Thankfully, so far as I know, James does not mess with anyone else. That said, the fact that my seven year old cares so little for his brother that he would bully him in public is traumatic for Lang and me.

Yesterday the boys arrived at the car as I was speaking to Joseph's teacher. There was much yelling and arms poised for blows. James had this smirk on his face...so proud of what he had caused. John reacted by getting angrier and angrier. Joseph has also learned how to upset John and began chanting meaningless syllables. John blew. Needless to say, my conversation was forced to stop.

This is when John told me about what happened in James' classroom. John is in gifted science and had been sent to pick up a child from James' class. James decided this was a great time to bully/tease John. He even got another of his classmates in on the action, and several were laughing. This same scene played out two weeks in a row.

Which brings us to where we are today. How do I like, parent and encourage my bully? I really just want to slap him silly. How do I get my sweet, sweet boy to be sweet? He really is very kind and generous with John. John has a hard time reciprocating...first he doesn't really get that he needs to and second...he doesn't trust James.

At the same time, it makes me crazy that John reacts to every little thing. He allows our four year old with significant developmental delays to send him over the top. However are we going to teach him to manage?

I've contacted the pertinent parties at school and requested that John not be sent to James' classroom unless accompanied by an adult. The school counselor started meeting with John a few weeks ago, and I requested he discuss this with John. He did, and picked up James, bringing him into the conversation. We also allowed John to determine which privilege James would lose over the weekend. James will have no access to i devices.

Is It Aspergers?

We are in the midst of having John looked at for Apergers. How we got here frustrates me. I feel like we should have been here four to five years ago. That said, it is OK. I'm not sure much would have been differently in the intervening years and possibly the news of such a diagnosis would have devastated us back then. Right now it's just not a big deal.

John had significant delays in language. His pediatrician first noticed when he was 15 months old. By the time he was 2 1/2 his language was at least a year behind. It was time to look into speech services.

John was tested both by the Parent Infant Education (PIE) Program for Arlington County and by a doctor at Children's. Both organizations noted his high activity level. PIE called it busy. Busy in Arlington is be nice to parent speak for your kid is crazy hyperactive.

In the end, John was diagnosed with sensory integration dysfunction and language delays. The county provided speech and occupational therapy (OT) in our home until he was three. At that point he was provided with an Individual Education Plan (IEP), moved to Ashlawn for therapy and was offered a community based special ed teacher as well.

By kindergarten he was receiving these same services at Glebe, although he lost his special ed teacher. His IEP ran out and he lost all services because he was too smart. I wasn't. I signed the document allowing them to dismiss John from services.

At that final IEP meeting, my one concern was that John would not be able to sit in a classroom. Their answer was that he could carry notes to the office. I was incredulous...so I'm sending my kid to your school for 30+ hours a week so he can take notes to the office? You didn't just say that?!?! They did.

Our pediatrician took pity on us, did a little further testing and formally diagnosed him with ADHD, hyperactivity type. We began meds and John had all summer to adapt.

In the meantime, it was clear we would not be sending John to Glebe for 1st grade. We heard bad stuff about Drew. My aunt came through with financial help and we sent John to Montessori School of McLean (MSM). John was in heaven and the office was right next to his classroom in case he needed a time out. He didn't. Even better, he made a best friend.

John was stable until about half way through second grade. What a blessing because no one else in the family was stable for that period. Things began to unravel for him when a new teacher was hired. Maybe it was a confluence of events, maybe it was her, maybe it was John, but the free ride was over. That spring we went back to the pediatrician for an increased dose in John's meds. This was our first increase and it still amazes me that it lasted as long as it did.

John experienced his first episode of being bullied/teased that year. The kids would upset him until he overreacted, thus getting him in trouble with the teacher. It worked every time.

It was about this time we put John back in OT, this time privately.

For a variety of reasons, we applied for both John and James to attend Drew when it was time for John to begin third grade. Both boys were accepted. Yay!

John has had wonderful teachers at Drew and is very happy. That said, we are seeing his social skills fail to mature at the same rate as his peers. In third grade he participated in a private social skills group after school. It cost a small fortune and didn't really meet his needs. The time also conflicted with his new swim schedule for fourth grade. All great reasons to quit.

In October of fourth grade I went to the school counselor seeking help, guidance. He offered me the moon but never came through. It would seem that when he observed John the kid was perfect. Great.

Also in October, John ran his first 5k. It was for Autism Speaks. Joseph spent most of the time on the ground in silent tantrum. I remember looking around, figuring everyone was thinking Joseph was autistic. This went on for a couple of hours. By the time we left I decided they were probably right.

That fall John landed in another serious bullying situation at swimming. It was devastating. After two months the coaches managed to stop it. I live in fear of the next bully...John is such the attractive target.

Since then our pediatrician suggested Joseph might be "spectrumish." I had held off before, but now I started investigating what Autism Speaks had to offer via their facebook page. I uploaded an app for rss feeds and added theirs. I learned and learned. The picture was starting to clear. John may well have Aspergers.

By January I was desperate. John needed help. I got my ducks in a row and requested a Student Study meeting. I had evidence that my gifted child couldn't spell...surely that affected his education...and thus qualified him for a social skills group, yes?

The committee wasn't buying it. I finally came forth with my fears for middle school transition given John's proclivity to be a bully target. He needs a social group. He is maxed on his meds, we were seeing a new doc, and any decent doc is going to require he participate in therapy to receive additional meds. His inability to read sarcasm, to be literal, will be his end in middle school English. Finally I mentioned that I thought he might be Aspergers. There was nodding of heads.

The committee came through and offered to test John for Aspergers. I didn't even know this was a possibility. He's also being tested for everything else. Amazing.

So now we sit in limbo. The committee has two months to test John. His meds are hardly working. We are doing weekend "vacations" from his meds and giving him a low dose of another drug instead. We worry because we are watching John unravel and are mostly powerless to stop it. But, we are thankful nonetheless. There will never be a better time for John to unravel...and this will hopefully be a good basis for accurate testing.

In the meantime we have taken John to his new doc. We've gone beyond the expertise of the pediatrician. She met with us, observed, examined and interacted with John. As we were finishing up I showed her the list of tests being run by the school, and that he was being tested for Aspergers. Her words? "I think so." This is the same doc who ended our NF nightmare in September with, "I don't think so." Her plan is to await the results of the educational testing, then use it in hopes of justifying more extensive neuro psych testing as medical necessity to our insurance.

So, for now we wait. Is it ADHD with all the bells and whistles, or is it high functioning Aspergers? ADHD probably means little to no help at school. Aspergers might get him services, but what will that mean in the long run? I keep telling myself he is and will be the same kid either way, I hope.

Homework

Homework. Is there anyone who really likes it? Not my kids. But they like the result. They like to be smart.

It all begins when they take interest as little guys. Kids naturally love to learn and my guys are no exception. I handed John a few workbooks which didn't go far. Eventually I enrolled John in Kumon because he was terrified of reading. Really, he was. One of my best decisions ever. Kid is now a bookworm.

So, at three and a half James wanted homework. He had exceptionally poor writing skills so we spent that summer doing tracing and mazes before moving onto bigger and better things like writing letters and numbers. At four he begged to start Kumon like his big brother. We obliged. After all, he had a vile muscle disease and we were terrified being smart would be all he'd have (let's not go into theology here).

Well, both boys now hate Kumon. Actually, to be honest, they have a love/hate relationship with Kumon. John can verbalize just how much he dislikes Kumon....and how much he "likes being ahead in his grade." James isn't quite ready to admit there is anything positive from doing all the homework required by Kumon. That said, he knows it is true.

So...imagine the scene when a few weeks ago Joseph came upstairs and announced, "I can do my homework." If only he knew the true meaning of what he was saying.







James is jealous of Joseph because his work has lots of pictures and is so much fun. John wants to do James' work because it is easy. And Joseph, well Joseph may be starting to regret this whole homework thing because now that I know he can do it...




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Lang's Neck Surgery - Part One

On Tuesday Lang had neck surgery. The purpose was to fuse discs 6 & 7 using hip bone, a metal plate and a screw. The effect was immediate. Lang can now move his right arm pain free.

At first recovery was amazing. His doctor had reserved a room for him to stay overnight, but Had previously told Lang he would be going home. Let me tell you, a six hour recovery in a private room beats recovery in out-patient recovery by leaps and bounds. We had tv, private bathroom, sofa and privacy! Love it!


Nonetheless, the doc had told Lang he would go home, so home we went. The only areas that really hurt were non-surgical...the throat from the intubation tune and his urethra from a catheter like procedure. Word to the wise: if you are having surgery, go to the bathroom first.

Wednesday Lang was healing well, although he started to experience some pressure in his chest. He kept repeating that his doctor had promised he could run after two days. I kept laughing.

By Thursday, minor numbness in his right thigh (leg from where the hip bone graft was taken), became increasingly uncomfortable. The pressure in his chest was increasing. I finally insisted he call the surgeon who sent Lang to the ER to rule out a blood clot.

Seven hours later, Lang was released and diagnosed with chest pain. Yeah...we kind of already knew that. That said, the ER was great and ran all the necessary tests, including bloodwork, chest xray and a chest catscan with contrast. We were confident in going home.

Friday went well and I was able to get Lang to his foot doc for new orthotics. No since in being home sick and not knocking out a few doc appointments. By lunchtime he was having significant trouble swallowing and couldn't eat the chips and salsa. By dinner he was choking on pizza.

Saturday came and I called the emergency line for our general practitioner. She suggested that Lang might have a swollen esophagus and that that might have caused his chest pain. He was to call the surgeon and get permission to take ibuprofen to reduce the swelling. He never did. He had a rotten day and even worse night. I stocked up on soft diet foods.

Lang finally called the surgeon this (Sunday) morning. When the surgeon mentioned the ER, Lang managed to convince him he was feeling better. Uh huh. I can't argue with not going to the ER though. The only test the surgeon suggested was a neck xray. In our minds, Lang had enough scans on Thursday. Taking ibuprofen or any other anti-inflammatory is a no go. So much for anything to aid in reducing the swelling.

In my opinion, Lang still does not sufficient rotation of his neck to drive. I've hidden his keys. I've offered to drive him to work and even to ferry him between his two work sites. He's mad. I've asked him to find even one person who agrees he is good to drive and I'll give him his keys back. He is downstairs watching Prince Caspian with the boys. Either he knows I'm right or he's not taking me seriously. This could get ugly.

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GOD! Look what YOU did!

One of my favorite things to do is to watch and pray over my sleeping children. They are so beautiful and at peace when they are sleeping. No disobedience, no upsetting brothers, no whining. It always gives me such hope for the new day and clears my mind from the day's frustrations.

This morning I was admiring the little guy as he slept. So beautiful, so perfectly made. His hands, feet, body, all of him, just this perfect package. Then I had to laugh as I remembered a phrase he has picked up from who knows where. He says it with a perfect accusatory tone when I do something with a tangible result that he does not like. "MOM! Look what YOU did!"

So...this morning as I am gazing at my little angel, these words came to my head: "GOD! Look what YOU did! And I thank You."

Autoimmune Study

I would really like to get back to blogging. There is so much going on in our home that is worthy of remembering. I have found this app and am hoping that maybe, just maybe, I'll blog a little more if I can do it in my spare minutes using my iPhone.

We will be participating, as a family, in a study of autoimmune diseases. The Cure JM (Juvenile Myositis) Foundation was seeking participants in the fall. I e-mailed at the time and they responded today. Basically, they are looking for children who have been diagnosed with an autoimmune in the past four years and have a same gender sibling within four years of age. We have two. They only want one, and since it is possible Joseph now has an autoimmune (chronic hives) John wins.

It appears I will have to pull the kids from school for 1-2 days AND...there will be a blood test involved. This is not popular with my guys. We were able to explain to them that they would be paid $50. Actually, the study pays $100 each, but we may use that second $50 as the payoff in case there is another part of the test they don't like. We are also thinking Dave & Busters.

So John wasn't really sold on the $50. He really panics about these things. Interestingly though, he is willing to do it for all of the right reasons. I explained to him the importance of research and how without it doctors would not know how to treat diseases like James'. Wouldn't he like to help another kid who is sick. Yep. He would. That's my boy...and the same one who last March spent two weeks panicking because the pediatrician told him he would be getting one shot per year for the next three years...and the next shot was still 50 weeks away.

Anyway, the process begins Tuesday with a phone interview. I guess I better remember to charge my phone!

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