exhausting

Exhausting.  That is how I would describe yesterday.

For Owen and for me.

Owen answered questions and played their "games" like a champ, with only a few fits complaints.   He worked pretty much straight through from 9:30 to noon.  Then again for half an hour at 1:00.

I had to fill out lots of paper work and answer lots of those AlwaysSometimesNever questions.  It took forever. It was hard to gage my answers.   Made my head hurt.

And even though I anticipated this... (like in any eval)  ...hearing all the ways in which spina bifida affects your child and all the areas he's struggling in.... all at once.   It was a little much.  

Some good grieving was done yesterday.

Overall, I was very encouraged.  Encouraged that we are doing a lot of things right as far as helping him navigate some of the cognitive, fine motor and behavioral difficulties he has.  

I got a lot of good information.  Some of which I already knew.  They had lots of great insights and ideas.  I am excited to get the report in a few weeks.

Where was this doctor when we had Owen's original IEP!?!?  That was such a horrible experience.  Them not believing me or my concerns.  Struggling to know what to fight for.  I can see where if Owen were to go back to school, these doctors would be super heros to me. 

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One funny:

There were two doctors.  One of the doctors was Dr. Black.  So Owen said right away as they introduced themselves, "You're Dr. Black and you're Dr. White."    so cute.

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Right now, Owen is within the average range for 5-6 year olds for most areas.  But the range is broad when you're 5.  Of course 5 year olds need help with many tasks, most kids need reminders and cues and redirection.  As kids age however, the range narrows.  Kids need less help, less cues, have more responsibility.  More is expected of them, so the areas of struggle become more pronounced.  Does that make sense?  I don't think I explained it very well.

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One of the ideas they suggested that we're going to implement right away is starting to use more lists.  Picture lists, word lists, check lists, sticker lists.  Teaching Owen how to make lists for tasks and how to follow a list.  

This will help with his difficulty with multi-step directions, organizing his thoughts and planning ahead.   Obviously as a kindergartener his lists will be very short and very simple.  The point of course is to teach him how to use them and to make that part of his routine so that later when more is expected of him, he will hopefully have incorporated some of those thought processes and skills into his routine.  As the tasks and directions get more complicated and the lists longer, hopefully using a list will be second nature and a good tool for him to do the things he needs to do as independently as possible.

I'm not going to go crazy on lists, just an example of something I'll try to use more often and maybe earlier than I would have as a way to pre-empt the frustrations for him.  

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For the nerds like me:

Executive Function, which I've wrote a little bit about before, is very interesting to me.  How Spina Bifida and Chiari affect the brain is fascinating.  Sad though.  Especially since kids with spina bifida have MORE things to navigate on a daily basis.  Just getting ready for the day:  Try adding braces, cathing, wheelchair, medicine, and bowel program to your middle schooler's daily routine!  How many of them could do all that independently?  All these things take planning, involve timing and remembering to do.  On top of the normal, brush your teeth, get dressed, comb your hair stuff!  Add to that the difficulties kids with sb have with executive function... and it's crazy.

This is why working on independence early is so key!  Independence.  independence.  independence.   working on it early and often.

I will admit, this is an area I need to improve on for Owen.  

I love this chart I saw at conference.  It will probably explain it better than I can.  I stuck it in the photo gallery.  I hate that caringbridge won't let you have photos in your post like blogger.  I've thought about switching over, but can you imagine?!!!!  

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All that to say

It makes perfect sense to me that being pro-active will pay off.  "An ounce of prevention is worth a pound of cure."  Is that how the saying goes?   I know it's true with most things in parenting.  It's easier to teach a child not to throw food if you taught them how to eat properly in the first place.

I'm thankful for the information the testing will provide for Eric and I to help Owen succeed in every way we can.  I want Owen to be the best Owen he can be.  Just like we do for all over our kids.  It might just take a little more work!  :)