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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

Back to School 2013

It’s that time again – school is coming! Our kids don’t start until September, but many districts start in mid to late August.

I got all our supply shopping done earlier this month and spent an afternoon helping the kids sharpen 120 pencils and take all the packaging and stickers and tags off of their fresh supplies.

Don’t they look pretty, all in a row? The kids were less impressed, but let me say, I’m looking forward to a fixed bedtime again!

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As I think I’ve mentioned, three of our kids have ichthyosis. This adds a few extra challenges to both the morning routine and the school supply choices. Here’s the article I wrote last year about our quirky school supplies.

Momo and Monkey still use crayons in class. For kindergarten to 2nd grade, the teacher dumps crayons in a bucket and the kids share supplies at each table. I bought the requisite packs for the classroom table buckets, but I also bought each kid a pack of the twistable crayons.  Cookie said that the longer crayon and casing that made them less likely to break was helpful, but as he’s in 5th this year, crayons aren’t a big deal anymore. I’m trying it out to see if they have less difficulty with crayons if we can add the little pencil grips to the plastic crayon casing. Has anyone tried this before?

The second thing that we buy beyond the stuff on the list is a pack of G2 pens. I got them in black and in color for each kid. They really write very easily and require almost no pressure, plus they have a soft grip on them that really helps my boys with penmanship.

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A new challenge has come forth with Cookie entering the middle grades. He’s in 5th grade this year, and they have to have a 3-ring binder again. The problem is that Cookie can’t open it without opening fissures on his hands or asking for help. Last year, we worked out an alternative. We picked up some polyethylene folders that had holes punched in them, plus a little slit (look at the photo). The great thing about the poly folders is that they are nearly indestructible. In addition to using divider tabs, we stuck the folders into the binder and he just slipped his stuff in and out of the pockets rather than fight with the rings. And to combat the problem of stuff falling out of the binder, our binder is in a zipper case. Everything stays neatly inside, 100% of the time. Win!!

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This year, we didn’t have to worry about IEPs and 504s going into the year. For once, that was all handled back in the spring. But if you’re going through the process and aren’t sure what to ask for, here’s what we have on ours. (We added a tablet computer to Monkey and Momo’s IEPs because of their speech delays causing reading problems. That isn’t in the original article.)

Finally, we still have to do “Meet the Teacher Night,” which for us doesn’t happen until the end of August. We will probably give them the usual short version. FIRST has a nice article on other ways to handle “Ichthyosis 101″ for teachers and parents of classmates. If you haven’t done so yet, print out a copy of their Guide for Teachers and School Personnel, highlight everything relevant to your child, and make sure the classroom teacher and the school nurse get copies. It’s a wonderful resource.

I have to say, having 3 affected kids in the same school means pretty much everyone knows our kids and what to do now. Middle school comes next year, and that may be a whole new barrel of monkeys! For now, I just need to get through another first day without Momo ending up bruised and bandaged over a fluke crack in the sidewalk.

Finally, let’s not forget Kitty. As usual, the unaffected child is just as affected as her brothers. Sometimes it is easy to get lost in the shuffle when you’re the sibling of someone with special needs.

4 comments to Back to School 2013

  • Erin Edwards

    We use adaptive pencils called Twist N Write that help with holding them. The lead also automatically comes down, which seems to help. We’ve also tried liquid pencils with some success, but the hold is really tough for my son. We’ve also added the tablet or computer option for ANY writing activities. Our school is pretty awesome & my son’s teacher even suggested items for the 504. The teacher said that a substitute absolutely needs to know what is going on. One thing I didn’t realize was an issue was help with opening items at lunch or supplies in the classroom. The school purchased a freezer to house in the classroom for the cooling vest inserts and we send in the lotions and special first aid care items too. I made a binder with info that would be helpful to those working with our son that they keep at the school with information from FIRST. Many people have told me how helpful that was. Overall, things are easier than I thought they would be.

  • Jeffrey "Kanga" Gridley

    Great article, some useful tips!

  • Toni W.

    Also for kids who have a tough time gripping and opening things they could use a small sheet of rubber to help them twist things open. I used this method myself because grip is one of the biggest problems I have. I eventually went on to get this tool that has an adjustable ring and a handle. The ring goes around lids and is then tightened. You turn it with the handle which also has a clip on the end. I use the clip to open things like pudding cups or coke cans. I don’t know what it’s called though but I can take a picture if the description doesn’t make any sense. For pens I buy the ones that are often intended for children and made thicker. If that’s not an option and I’m forced to use a regular pen, I have slide on grips.

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