The latest on Sean – school time!

We’re now full-on into autumn, which means a lot of things around Chez Anselmeau.  It means long-sleeved shirts and sweaters, added blankets and comforters.  It means hauling the fans down to the basement and bringing up the space heaters (Chez Anselmeau, you may recall, doesn’t have central anything).  It means worrying less about mowing the lawn and more about raking the leaves.  It means my lovely wife Nina starts making her should-be-legendary soups and her soft gingerbread cookies.  It means working on the Christmas gift list; we usually have our shopping done by early November.  And it means our daughter Charlotte starts asking to do more chores around the house, so she can earn Christmas spending money.

Most of all, around here autumn means school is in full swing.  Charlotte, of course, has been in class since late July, and Nina went back to work for the school district around the end of August.  But now – the best news of all – after waiting a year due to his Leigh’s disease, Sean has started school as well!

Well … sort of.

I’ll explain.  Two weeks ago, Nina, Sean and I met with a group from the local school district to form what is known as an Individual Education Plan (IEP for short).  This is standard procedure for any student with learning disabilities – in this case, Sean’s inability to speak or respond normally.  As a Special Ed. assistant for about a decade, Nina has helped put numerous IEPs together, so she made sure I was prepared for it.  She said it would probably take about 30 minutes.

Actually, it took about 90.

Thing was, three of the four people we met with had observed Sean individually over the last couple of months, and had compiled a report as to what kind of schooling could be provided for him based on their observations.  But upon seeing Sean again, all of us realized that the report needed some revisions – because of the progress he’s made since they visited.

For one, his walking has improved, to the point that our afternoon exercise time (when it’s not raining) is to take a walk around the block, with him in his walker.  We live near downtown, which was set up on the old grid-square plan, with standard blocks about 400 feet to a side (from the middle of one street to the middle of the next).  So a walk around the block is 1400-1500 feet – and he does it with little problem.  (It would be “no problem,” were the sidewalks around here in better shape.  Alas.)  That’s right – Sean can manage over a quarter-mile stroll and not even get sleepy now.

This hasn’t been the only change.  Sean’s moving his arms and hands more, and starting to get a better grip on objects.  He’s more alert and better able to follow goings-on with his head and eyes (unless the TV is on, in which case good luck getting his attention, ha ha).  He’s even becoming more vocal – while he still has a lot of trouble opening his jaw, he’s making lots of “mmmm” and groaning sounds, so we know his vocal cords are coming back.

None of this was nearly as prominent in August/early September when the district Special Ed. people came to call, so they were floored when they saw the changes.  This meant a lot of crossings-out and revisions in the prepared report.  Thankfully they were more than willing to do so, as well as to respect the advice of Sean’s pediatrician that he should not be put into a public-school environment.  (Leigh’s is an autoimmune disorder, especially dangerous in a grade-school classroom where colds and viruses are swapped like Pokemon cards.)

The upshot is that last Wednesday we got a knock on our door from Mr. Giordani, a Special Ed. teacher from the district who was assigned to do home-schooling with Sean.  He sits with him and works on basic kindergarten stuff, letters and numbers and shapes – basically, helping him pick up where he left off in August 2009.  Mr. Giordani only comes for 30 minutes to an hour each weekday, and we’re still working on coordinating his schedule with Sean’s, but it’s a start.  And after all Sean’s been through, almost any start is a good one.  And both Mr. Giordani and his supervisor agree that Sean’s recovery has been amazing – in fact, today he specifically used the word “miracle.”

Miracles don’t come without God’s intervention, and God’s intervention doesn’t happen without the prayers of His people.  We are so thankful for everyone who has talked to God on our Seanster Monster’s behalf, as we ask you to keep doing so.  We’re still far from the goal of Sean being restored to full and active health, but with every passing day we see him take another step toward it.  And for that we thank you, thank you, THANK YOU!


2 Responses to The latest on Sean – school time!

  1. Lori Knutson says:

    WOW!!!!!!! I am SO GLAD to hear about Sean’s progress. As we have discussed, he is the only one to have shown improvement with this terrible disease. Just goes to show you that not everything goes by the textbook. (Annika was a textbook example for the most part, except that she did not have irritability/constant crying – she was the most calm, mellow baby I have ever seen).

    I am going to pass this on to Eric; he will be glad to hear this latest update as well. We wish you continued good luck, and continue to keep you in our prayers.

    Your West Texas friend,


  2. Abby says:

    Great news my friend! I’m on sabbatical from the L & F scene, but somethings, like Sean’s progress, cannot be ignored.

    Blessings to you all. Abbs

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