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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