Monday, June 29, 2009

Warning, this is boring

BUT, it could be essential to a few of you so I will torture the majority to help the few who I have been told need some help! I was recently asked how to manage paperwork for a child with a medical issue. Depending on how far back you have gone on my blog, you may know that I have a son on the autistic spectrum. The amount of evaluations, tests, reports, diagnosis’, etc. is unbelievable. The challenge of how to manage this began for me when he was 3. We had gone through 1 ½ years of figuring out what was going on, what seemed like a million assessments, pages and pages of reports and then ended up entering him into a program through out school system. Their evaluations and findings and then their plan for him was a stack in itself! For those of you in the loop on this, you know I am talking about IEPs. Now, I don’t know if this has the same name in every state but in Florida, that is my son’s Individual Educational Plan and I’m sure every state has something similar. It outlines what the school will do for him, how, when, by who, and on and on. Also outlines what they expect from him so I know what our current focus is. It must be done once a year but based on your child’s progress, they could do many a year. These forms are on top of every other assessment and testing that it done! James is going into 5th grade and we will be doing his 13th IEP at the start of school!

As an informed parent, I want to be able to provide input in my son’s meetings. I want all his information at my fingertips and I want to be on top of it all! BUT, I don’t want to be crazy. I don’t want bags or bins or books of paperwork and I don’t want to be overwhelmed by it and looking for things while others are waiting on me. And it takes a while to get to the point I’m at but I don’t want his paperwork and issues to be a constant ‘thing’ in our lives. If I had to see his paperwork all the time, I would think about it all the time. I need it when I need it, otherwise I want it in order and out of my way!

So, here’s my system. I will assume that you are into this many many years and will talk about how to catch up with yourself.

First, in order to reach an end goal, think about the point. Why do you keep the paperwork? You want to know what from it? Many questions come up over and over that you just need at hand like his birth (preemie? Issues? What medications did he have?) and diagnosis (who, when, what exactly) and then of all the evals and tests and IEPs what stands out as the important information?
-Change in services, label, therapist
-Need that was pinpointed for the first time
-specific scores from a test
-quote from a report that carries some weight
Determine when you look at each piece of paper what it is you need from that piece of paper. What sets each IEP or eval apart from the others.

Here is where you want to start-

  • Buy a notebook or folder that is Large and Durable
  • Pull out all your paperwork and sort it-this is the hardest part. Make stacks doing the following:
    -Keep anything that has specific DATA pertaining to your child. You want to toss anything that is generic. For instance, the letter that was sent home to schedule the IEP and the legal document they give you at every meeting. Sure, keep one of those if you want it (it’s online if you need it) but it is not pertinent to your child’s history. Get rid of anything that is not specific about your child! Because we don’t want to do things twice, if you have a lot of paperwork, as you look at each document, highlight the date and the info from each that are most important and set that document apart from the others.
    -Sort Chronologically. After glancing at each paper, first set in a stack by year. If you have lots of loose papers like a 5 page IEP, make sure you sort it so they stay together. Once you have everything sorted by year, sort again so that you are now chronological.
  • Recap this Data. Now that you have your crazy stack (or stacks if one will fall over!), go to your computer and open a new document.
    -Call it something that makes sense for you as you will use this file for a long time—mine is called James’ Overall Medical History. The goal is to have a chronological list of everything that is pertinent. If you fill this with things like “5-5-07 went to speech therapy” this will not work. The only entry you would want for speech is a start date with a specific therapist, test results, something huge that may have occurred and an end date with that therapist. If you are asked ‘When was he in speech therapy?” you can answer this quickly.
    -Start with your first item (oldest) as your first entry. Keep it short. This is not a story, it is a collection of data. For an example, here is what James' first entry looks like-
    March 26, 1999
    Born five weeks early. RDS. Ventilator for 5 days. Nicu for 2 weeks. Had pneumonia—treated for seven days. Jaundice—phototherapy for two days. Slight heart murmur—presumed normal. Reflux—started on Cisapride (propulsid) and Zantac. Hearing test completed and was normal

    -Put that first document in the folder. After your entry, that paperwork (my example, this would be only his final discharge paperwork, not the daily reports or receipts or charting info or extra paperwork, just the recap report) goes in the notebook, so it ends up in the BACK! When you open your book and you are done, the top item under your recap is the most recent item.
    -Make a tab for this item, if you think you will need to refer to this often. This is the only thing that I don’t have a clear ‘rule’ on. If it’s an IEP, I have a tab for it (label says, for example, 7th IEP, 9-05), if it’s a big test like IQ, I have a tab on it. If it’s a final report from an SLP that has nothing very interesting on it, I recorded the data, file it in order but didn’t put a tab on it. If I need it, I can see it on my chronological recap sheet and find it easily.
    -Keep going, recap and file, recap and file.
  • Print your data recap and put it on the top, when you are done and it is ALL there. This is how my document looks. My header followed by each entry with date and then 1 or 2 sentences detailing each item.

  • The next time you have a meeting, take your notebook and answer any question within seconds! Here is how mine looks with the tabs. You can see that it's simple, not grand but easy to follow and easy to find anything I need.

  • Behind all this, I have his year end report card in a page protector sleeve. Each sleeve has a grade on a file label sticker. My son is entering 5th grade. When I get his 2nd grading period report card, the 1st one is garbage as the 2nd one covers that too! By the end of the year, you do NOT want 3 or 4 report cards as long as the data is retained in the final report card—throw the extras away! So the 4th grade sleeve has the final report card (shows all grading periods), final IEP report card (FL has a separate one), and his FCAT scores report. That's it! Here is a picture of my grade sleeves. If you look closely, you will see that I have an empty sleeve ready for 5th grade so what you see is the 4th grade sleeve behind it. Simple with not a lot of paperwork at the end of each year.
  • If your book is being made for a younger child or a child who visits other therapists and doctors with this notebook, you will want other documents. Use another page protector so that you can get documents in and out of it easily and copy his birth certificate, social security number, immunization records and insurance card. Those things are always asked for so have them available! Now that James is older, I took that stuff out but I had it in there for years.

How to move forward is your next question right? This should be easy now. When I get a new IEP or document, I enter it and make a tab and reprint my recap document. When he gets a progress report, I may just stick it in the folder for now but the next meeting I file it correctly and am updated within minutes. All documents should go here and you should continue with this format and it will always be updated.

To help you determine how to write your recap, here are a few entries from mine. You can see they are short, precise, specific. In order to be respectful of his privacy, these scores are quite old and I'm sharing generic stuff from the last several years! There are entries with some pretty serious tests listing lots of scores and they are very at a glance so I and any professional can quickly grasp his results. In case you wonder, he is mainstreamed, very smart, adorable and a bit quirky but hey, I think I am too so whatever! He is the sweetest child you could meet and one of the reasons he is doing so well is because of these insane reports and all the school does for him!

October 26, 2001 Arnold Palmer. Updated Speech evaluation completed using The Rossetti Infant-Toddler Language Scale. Completed at 31 months. Findings—Pragmatics 18-21 months 100% (highest level of test), Gesture 24-27 months 100% (highest level of test), Play 33-36 months 100% (highest level of test), Language Comprehension 21-24 months 100% (same as before), Expressive Language 9-12 months 100%, 12-15 months 92%, 15-18 months 86%, 18-21 months 66%. Goals include identifying action words in pictures, understanding size, saying two and three word phrases. Email to family of progress included with evaluation for further detail. New OT evaluation also done. His play is at the appropriate age but he is behind due to lack of attention span and very low frustration level.

February 13, 2003 3rd IEP to add OT and update his speech goals. He is using sentences, though difficult to understand, and has many words. The SP added precise goals regarding specific things she sees a pattern of (velar fronting, syllable reductions, stopping). His OT goals include working on writing skills, fine motor with buttons and zippers, new foods, and less pushing as this relates to sensory input.

September 14, 2005 7th IEP. Major change was for testing. Lots of accommodations—increase or decrease in time, variation in instructional methods, seating, get his attention before giving directions, outline of activities, break assignments into segments. Also special testing papers. Also flex scheduling, setting and presentation on and standardized statewide test. Goals increased to age level but the accommodations were the basis of this change. No Modifications made—full curriculum is required of him.

April 24, 2006 OT evaluation. Pediatric Potentials Rehab. Poor visual tracking. Vestibular processing difficulties. Low kinesthetic awareness. Hyporesponsive to tactile, taste, vestibular and proprioceptive input. Hypersensitive visual and auditory input.

November 26, 2007 Auditory Processing Evaluation. Disorder identified, mostly in right ear. Given a FM amplification system which he started using late December.

December 3, 2007 10th IEP. Added alphasmart which he has been using in the classroom for a few months.

You can see I'm not redundant with issues. There was a LOT more on his 10th IEP but it was nothing new. For us, All IEPs talk about how he has organizational issues but the only time I mentioned it is when a solution is being implemented as that is the one time that it really was relevant and not just everyday info about him.

I hope this makes sense and was helpful! Sorting and getting it recapped in a new document will be the hard part but maintaining it will be a breeze, I promise!!!

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Sunday, June 21, 2009

How does this 'follow' thing work?

So I follow lots of blogs but I don't have any of the auto notification things set up, on blogger or any other format. I know lots of you do this and someday I'll catch up and figure this out! I'm trying to clean up my tags and am editing lots of posts. So I wonder, every time I change something and hit 'publish post', do you get a notification? If so, you will think I am NUTS! I don't know how it works or how to fix things without hitting 'publish post' so if this happens, please ignore and forgive me! I hope to get these tags better organized and then will leave it alone!


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Surviving the Summer

I'm home with 2 kids all summer while trying to work! Thank the Lord for Grandma! My awesome Mother in Law is so wonderful and helps so much. It is still a juggling act figuring out the schedule. As much as I love the summer, it is always a bit nuts for any Mom who works! So I thought I'd share my summer motto! Here it is, displayed in my kitchen for the summer . . .
"Wine is the Answer, What was the Question?"
When I'm not working or out and about doing Mommy stuff, I will do my best to enjoy the summer with my kids and live by the intent on this dishtowel--relax and take it easy!

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Kid's Wall Art

When we moved into our new house, I did a LOT really FAST! My friends will tell you how nuts I was and how much I got done which is true, BUT the reality is that I rushed through a lot to get things pulled together. Here is an example.
My son Carter's bedroom is a super hero theme. He had quite the dress up collection so I wanted to do a hero's theme without buying Spider Man bedding or anything else that was expensive so that his room could change easily. So I bought some fun costumes the day after Halloween and bought these cute 4 x 4 inch canvases. He has a custom bed next to this area with some spaces to stash his favorite things so I decided to use "Hero's Hideaway" on the wall. I painted the canvases a color that is in his bathroom and used a red paint market to put on the letters and a black market to 'age' the edges and I was DONE! Quick, fast, easy and DONE! Here they are! I put them on his wall over the costumes and it was great! (Here they are on my floor as I forget to take a picture of them on the wall before I took them off for their makeover . . . )In the past year, I've been trying to upgrade some of these quick things. I knew they weren't as good as they could be but hadn't thought too much about them. My friend Lisa came over and told me about some Super Hero scrapbook paper and suggested I decoupage them. I started looking for the items I'd need and didn't find paper that matched his room as most were like a newspaper print or the hero was big for such a small canvas. I was quite disappointed as it was a great idea. Now what?? Then one day, I saw wrapping paper and it all came together! I ordered letters from Uppercase Living and here is what I started with to redo the canvases. I left the sides the same color. Cut the paper with the letters in mind as I wanted them to fit well with the art. I then glued the squares on the canvas with a glue stick, blended the edges into the black edges of each canvas by rubbing on black ink and placed the letters on. They didn't "pop" enough so I used one of my favorite tricks--a white gel pen! I just outlined each letter with the white pen and they look great! Here is the entire area! The uniforms are hung with wig forms. When I was planning, I was trying to figure out how to get these on the wall. I started searching for 'hat stands' and then 'wall hat stands' online and that eventually led me to wig stands and forms on ebay! They mount on the wall and are made for stores to sell wigs and are perfect!
I STILL need to do roman shades on his 3 windows. We've been here 2 years and I am still NOT DONE! No one ever is though, right? I plan to decoupage a cornice in James' room and have FINALLY had the main part cut but have I finished it yet? No.
This week is a good project week for me as I am home all week while family is visiting so I hope to get more up soon and hope to have a fun, busy and creative summer! I hope you are able to do the same . . . Perhaps there is a cornice board in my future?

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Tuesday, June 9, 2009

Attacking Two Boys' Massive Messes!!!

Oh Boy! If I were a fake person who wanted to carry on the "Martha" persona that gets randomly thrown at me, I would NOT post this. I cleaned out my boys' rooms today on my first day at home in forever! What a fun way to relax on my day off!
But I'm an organizer and you know what, people constantly admit they don't want me to see their closets or I'll 'flip' when I see their house or they have to clean before I come over and guess what, we all have to deal with things getting out of hand! My boys' rooms are my 'issue'. My bedroom is on the lower floor so I avoid their wing at times as it stresses me out! I've been promising them that we were going to ATTACK and today we did! So, here's how it went!

Phase 1--The Before!

What? Where's the picture? Oops! Okay so it was bad. You could walk through their rooms but it was bad. Their closets were mounds of toys and not one bin was holding the correct items as they were just throwing stuff wherever. It was a mound of toys.

Phase 2--Empty your room!

Seems drastic but it is the best visual for them to not only see their room clean but when you have 2 kids the same sex, sorting legos in one central area just makes more sense. So I had them bring everything out to the loft area. Start with one bin and if it's mostly legos, get the rest out and fill it with legos! See lots of kinetics, start a bin and keep going! Oh and USE the trash bags! So here is the loft after they sorted for 4-5 hours and I joined for the last 3. Full on rushing, craziness--no sitting. This was WORK.

Here is the bar where there are bags that I'm getting rid of that we never use and I think you can see 5 garbage bags. There are 2 in the loft area and some in both the bedrooms and we ended up with 9 bags total!!!

Phase 3--put it all away!

They picked their bins by priority and I inspected each bin to make sure it was sorted by like items and confirmed they were playing with those items. Once "approved" (they loved this) they put it away. Carter had 2 huge bins of matchbox cars. He is almost 8 and hardly ever touches them! So I made him sort down to one bin by picking his favorites and that was it! I worked all day and still need to organize their bookcases but the closets are done! Woo hoo! James, who is usually the messy one, got rid of a LOT! He is 10 now and doesn't need all the matchbox stuff like he used to. He is a legos freak and has TONS--the bottom two bins are just legos. I hope that this cleaner area will really help make things easier for him to manage. I am OVER small parts and I worked hard to get rid of stuff that wasn't used often!

Carter seemed neater but he has stuff stashed everywhere and had to keep more than James. He has a fun built in bed with lots of niches and places to stash stuff and I'm going to need to watch him so he doesn't let this get crazy again.

I love clear MATCHING bins for kids rooms. Look at how clean this looks. Imagine if I had the same system but some had a green lid, 3 had blue lids with a big curve, some were colored, etc. It is an initial investment but if you get good bins, they last forever! I have the clear shoe boxes from The Container Store, which I ordered by the case online, and they are used throughout my house and are the ONLY bins. Super easy long term and kids need to SEE what's on the bottom of their bins and boxes!!!

My cousin Wendy asked me about lego storage recently. We've done it all--big table, tried to sort by the kit, one big bin, sort by color but where we have ended up is a multi storage system. First, we have the 2 big bins in the closet filled. If I pick up, that's where I put things. But this fun thing is on his wall near where he plays and it's an easy place for him to toss them. If he had to walk all the way to his closet every time he found a tiny piece, it would be far worse. This unzips on the bottom so he can dump them all out and then it comes out of the holder so he can fill it and put it back on the holder and it's all picked up! There's a large lid bin in his closet with all his directions to all the kits he owns and he has a display area in his room for the things he has made that he doesn't want to put away. I think you have to make it easy to get to and easy to pick up or it won't work well. This works for us!

Someday I'll get photos of their rooms up but I am thrilled their closets are so clean now and had to share!

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Weekend Fun!

We went to Georgia to visit my twin and her family for a fun filled weekend!
Saturday was my niece Kate's dance recital.

Kim and I at lunch before the recital

My sweet family before the recital

Adorable Chloe! Remember the dress as my decor on the wall for the baby shower?

Sweet Kiersten with her Mommy

Kate dancing!

Kim & Eric and their sweet twins (Kim has Kiersten, Eric has Chloe)

Our cousin Wendy from N.C. came for the events! Here we are after the recital, relaxing!

Sunday was the baptism of Chloe and Kiersten

Now I couldn't blog without some fun decor stuff right? Here is what my caterer twin Kim prepared with two newborns at home for a 25 minute reception! It was beautiful and everyone had a great time at the baptism.

Yes, she made these, in her spare time.

The Twins holding the Twins!

My sister's sweet family

My sweet family

What a great time with family!

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