Thursday, August 27, 2009

Tablescape Thursday~French Blue Tablescape

Welcome to Tablescape Thursday, hosted by our lovely Susan at her blog, "Between Naps on the Porch". It's been a while since I have posted a tablescape but I should have more time now that Dear Son is getting better and has returned to school.
This week's tablescape is a lovely french pattern made by Arcopal. The pattern has been discontinued for many years now. I found the dishes on eBay and fell in love with them. They had five place settings, or partial place settings for a song. While they photograph very well, they are shall we say, less than substantial, in person. Regardless, with the frilly feminine scalloped edging and pretty blue and white color, you can not help but love this pretty little pattern.
I added some pretty little crystal goblets and a white, lattice basket to complete this tablescape. A pretty powder blue chiffon ribbon on the basket adds a feminine and elegant touch.

The centerpiece consists of etched glass bowls with orange gerber daisies. I chose orange because it contrasts with the blue and white making it stand out.
Candlelight, a white linen tablecloth and pretty white birdies complete the tablescape.

Another close up of the tablescape.

I did this tablescape for a small impromtu luncheon and liked it so much I snapped a few pictures so I could share it with you.

A few more pictures of the tablescape.

Another close up of the dinner plates.

You may notice that I don't have any pictures of the entire tablescape with my signature Louis XV gilded mirror, that appear in my other tablescapes. (Click on tablescapes in my sidebar to see this mirror.). Unfortunately, I was having some lighting problems that day and I could not get a good picture of the tablescape and the mirror.
While researching some lighting options on the internet, I could not help but notice this Alderson Court Gilded Medallion by Murray Feiss. I think it would go perfect with my gilded mirror. Unfortunately, I live in an apartment and they installed the sprinkler six inches from the center fixture. Here is a picture of the medallion. I think it is just beautiful.

I hope you have enjoyed my French Blue Tablescape! You can see more tablescapes at Susan's blog.
Note: I am a Professional Organizer and Home Stager. I run a business called, "Dream Organizers"; my motto is, "Keep it simple. Get organized. Make it beautiful."

Monday, August 17, 2009

The Dream of Possibilities and the Death of a Memory

The new braces arrived today. The plastic molded hand splints, were designed to hold Dear Son’s hands straight, as if this molded plastic would be enough to keep the ravages of his disease at bay. If that were true, I’d gladly put him in plastic from head to toe, but that wouldn’t be much of a life, now would it?

We have these outdated notions at times, in the medical community, of what these kids need. Now certainly, splints to keep his hands from getting worse and avoiding surgery is a good thing, but somehow, deep down, they don’t really delay the inevitable. If anything, maybe, it makes it more palatable, but then one might ask, “to whom”? To Dear Son, I think not. Plastic forearms to prevent his fingers from exploring life and putting those fingers in the flour while making the dog biscuits would not be a good thing. Oh, how he loves that. His eyes just light up when his teacher “tosses” the flour on his tray. You can see his spirit come alive in his eyes.

It’s ironic too, the emblem I chose for the splints. A football logo to celebrate the boy in him and yet, if the truth be told, he can barely sit, let alone walk. Walking and standing disappeared years ago. And what about being tackled like a football player? We’ll, he’d break. And yet, that is what I chose. But what else, would you put there? A wheelchair logo would seem silly, as if I was advertising his disability. A cat or a dog? Too childish. A color for the plastic, well, then, it wouldn’t match his clothing or his wheelchair. At least with the logo, it would invite conversation, something Dear Son loves.
Photo of Dear Son's former AFO's.

While other people have baby shoes as a reminder of their baby’s first steps, I have AFO’s, or plastic foot braces and now plastic hand braces. The foot braces, that I once viewed as ugly necessities and were a pain to put on every day, are now beautiful reminders of his gorgeous little legs and the days he could walk. Days when my life and his, were full of possibilities, that one day, he might walk. Walking in his gait trainer, and even running in it, was something he loved to do. He wanted to walk more than anything. He was so proud.
But now, the braces sit in his memory box. I kept a few of them and got rid of the others, while secretly wanting to keep them all. I mean, he got a new pair every year as his foot and legs grew, however the braces were a wonderful reminder of him growing up. I imagined placing them on a shelf someday, from smallest to largest, but somehow, it didn’t seem right.
Photo of Dear Son as a baby.

It’s funny sometimes, to hear mothers talk. They talk to their kids about what it was like when they were babies or when they were little. They tell them stories of the first time they walked or other charming things they did. And as a special needs mother, or rather, mother of a special needs child, I have been blessed with a different memory…one of a child who more than anything was determined to walk and who more than anything wanted to walk and run like the other boys and to show them too, that he could run like them, well, sort of. He’d run in his gait trainer with his leg braces on, his stick legs seeming barely adequate to hold him up. And yet, the boys weren’t impressed. No, they didn’t even look at him. But he was so proud.
Photo of Dear Son, age 8, in his gait trainer, a device to help him learn to walk.

And now, the hand splints, molded pieces of plastic with the same logo, are a reminder of those leg braces. The leg braces, were had in a time of “possibilities”. I had the hope that one day, Dear Son might walk on his own. And now, those days are behind us. The beautiful memories of him walking and running in his gait trainer, are never to be discussed with Dear Son. How, as a mother, can I tell him how much I loved his spirit when he could walk, when he can no longer walk, no longer stand and can barely sit up. Who do I tell that to? Somehow, a twitter, just wouldn’t be enough.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and seizures, caused by a random mutation of the ARX gene.

Friday, August 14, 2009

Organization Friday-Back to School: Getting the Kids Ready

I remember my high school days fondly. For as long as I can remember, my desk consisted of a card table and chair, where I did all of my studying. It wasn’t fancy and it certainly wasn’t beautiful, but it was functional. A desk light, a stapler, pens, plenty of room for books and of course a dictionary, thesaurus and various reference manuals. I kept my high school dictionary up until a few years back, as a reminder of those days. It was falling apart, held together by a rubber band, with my maiden name neatly inscribed on the inside cover. My college paperback dictionary resides inside my desk today, even though there are on-line dictionaries. Still, none have the history these did.

As we shop for the school supplies, I thought it might be a good idea to talk about some things we can do to prepare our kids for school. The list of school supplies are provided by the school; these are the items that the kids will need for the upcoming year. While school supplies are important, we should really be channeling this excitement into creating functional and beautiful spaces for our children at home. By creating a foundation for learning and studying at home, we can build on their excitement and have everything ready for the big day.

The first thing to prepare is a desk or place for them to study. This space is not the dining room table or the kitchen table, that needs to be cleared for meals. I think a good analogy on why this isn’t a good space is to imagine for a moment that you are starting a new job. Suppose you show up on your first day and they don’t have a desk for you and they tell you that you will have to sit in the lunchroom until they get your seating issue resolved. Now imagine for a moment that this scenario goes on for a few weeks or so and just as you get all of your work set out or you are in the middle of a project, it’s time for lunch and you have to remove everything in order for people to eat. Not very convenient, is it? Nor does it do a lot for your momentum. And how did it make you feel, eating at the lunchroom table versus a desk? Probably not very important. And yet, I often don’t see desk spaces that are set up for homework, if I even see a desk space at all. Ironically, while many child’s rooms don’t have a desk, they almost all have a television. You can imagine what message you might be sending.

So the first thing to do is to get a desk or a place for them to study. This is their own space, that they can spread out their books or supplies, to study. It should be a quiet place and if it’s an option, I always like a desk in front of the window. If there isn’t a place in the bedroom for a desk, then make one. Take the time before school starts to get rid of or donate items to make room for one. The combination of daylight and a place to gaze when learning new concepts, is important. The desk should have good task lighting for reading. The desk should also be stocked with school supplies for home use-things to write with, a stapler, paper, printer ink and whatever is needed for the desk/office to be functional. I am always somewhat surprised, when I am hired to organize a home office, of how many home offices don’t have basic office supplies. Instead, there are closets, drawers and baskets full of bulk office supplies, but yet they lack the essentials. Sit down and figure out everything they will need before you go to the store. There are so many back to school deals out there, that if there were ever a time to set up a desk or office, the time is now.

After the desk is in place, there should be some basic discussions of a calendar and where homework assignments are written. Given the technology we have today, I am always surprised at the number of people who still don’t keep all of their appointments in one place. If the adults aren’t doing it, then how will the kids learn? It has been my experience that it doesn’t matter what type of calendar you use to store appointments or due dates in, but there should be only one and it should be consistent.

Next, there should be a notebook or book where homework assignments are written. Work with your child and teach them how to do this. For a child, a place to write homework assignments is the student equivalent of a “to do” list for an adult. Just as you have one place to write down all of your tasks or to do’s (I am giving you the benefit of a doubt and assuming that you write/type all of your tasks on one list and not on a hundred different post it notes.), a student or child should have a place where all of their assignments will be.

Next, let’s create some functional spaces for things. First, if you don’t have it already, we need a place near the front door for coats when they leave and come home from school. I always think a coat rack with hooks of some sort is the easiest. It is only for their current coat, not every coat the family member owns. When they come in from school, they have a place to hang their coat. There should be a place to store shoes and something to hold hats and gloves, etc. I usually prefer that the shoes and hats, etc. be in a closet to keep things looking neat, but figure it out in advance. Backpacks go in their room near the desk, not at the front door, the kitchen table or kitchen countertop. Just as you come home and take five minutes to empty your bags and put things away, your children should too. That should be part of everyone’s afternoon routine. If you don’t have a coat rack or hooks, then now is the time to get it set up.

Next, establish a landing pad. This will be a spot that will hold everything they need for the next day. Get in the habit of using it now, so it’s a habit when school starts. Wall Pockets to hold school papers from "Just a Girl". Click here to see how she made this.

Now that the physical spaces are established, let’s talk about routines. Start your children when they are young with just two or three things to do in the morning, after school or daycare and before bed. In the morning, it might be make the bed, brush their teeth and brush their hair. If they are really young, they can pull up the comforter and as they get a little older, you can work with them on the proper way to make a bed. After school, the basics are hanging up their coat, emptying the backpack, giving Mom papers to sign or review. Evening routines include picking out their clothes for the next day and setting their backpack near the landing pad.

In summary then, you want to do the following:

  • Establish a desk and area to do homework.

  • Set up the desk with supplies.

  • Select a calendar.

  • Select a system to record homework assignments.

  • Set up a place for coats.

  • Set up a landing pad.

  • Create and practice routines.

For special needs children, preparation is a little bit different. If you have a non-verbal child, the first thing to get is a spiral notebook. This can be used and placed in their wheelchair to write notes to school and for them to write notes back to you. That way, you know what is going on and they can also place their school papers in there. Some teachers prefer a three ring notebook. It doesn’t matter what you choose, as long as it’s consistent.

For their wheelchair, see if your wheelchair vendor can make you custom backpacks for the wheelchair. I have two made. A smaller one, that sits in back of the outer backpack. The smaller one holds emergency supplies-everything a person needs for one diaper change, one feeding, a day’s worth of medications, a change of clothing and extra feeding supplies (feeding bag, g tube extension tube, extra g tube, syringes, etc.). That way, if ever a feeding bag broke, I wouldn’t have to drive to school to replace it. School knows that this bag is for emergency use only and if they use an item in here, they need to tell me so it can be replaced. I am not going to be checking that entire backpack every day.

The outer backpack stores everything he needs for school. I have found it easier to keep two sets of clothing in the backpack, as opposed to leaving clothes at school. That way, I can restock the bag nightly and never have to worry if they have a change of clothes at school. This backpack should be large enough to store clothing changes, diapers and wipes to send to school plus the feeding pump. This bag also has a small outer pocket that I use for his school notebook.

For school, I prepare a written document of everything they need to know to take care of him. This list includes instructions on how to feed him, how to work the feeding pump, my process for clothing supplies and the notebook system, etc. I also create expectations in this letter. I tell them that I will need a little advance notice when supplies are getting low at school, because it is not possible to run to the store when he gets home from school since I don’t have a wheelchair van. Instead, they should notify me when supplies are low. This works well and it takes the pressure off. There is absolutely no reason that you need to run out the second supplies are out. A better system, is once they are low, they can tell you and then you can get the supplies within the next day or so. I normally keep extra supplies at home, but in case I don’t have them, I am not worried that Dear Son will run out. For things they use daily, I have a schedule. I send a new feeding bag once a week, and new syringes and extension tubes for feeding are sent on the 1st and 15th of the month. A spare of anything is in the emergency bag. This covers everything that is needed for a successful school day. I send this to school on the first day.

Once that is completed, I create a “School Daily Checklist”. This is a list of items that are packed every day for school. I divide it into categories. For example, I have a list of everything needed for:

· Feeding/Medication.
· Spare Clothes.
· Changing.
· Lifting.
· Swimming.

That way, I don’t have to reinvent the wheel every day. I just look at the list and pack everything that is on it.

On the flip side of that, is a reminder to put the feeding pump in the backpack. I set this reminder on the seat of his wheelchair so that I never forget to send the pump to school.

To summarize what we need for special needs children:

  • Get a spiral notebook or system for sending and receiving notes from the teacher.

  • Get custom backpacks made for their wheelchair or purchase them. You will want two: one for emergency supplies and one for daily supplies.

  • Prepare a written document on how to care for your child the first day of school.

  • Create a daily checklist/packing list to use to get him/her off to school.

  • Update their emergency information sheet and place on wheelchair.

Finally, for all children, the next step is to create a notebook for each child. This notebook has all of the information that is needed for each school. You’ll include the school, the phone numbers, the bus company information-pick up times, bus company and phone numbers as well as procedures for calling off school. You will also want to sign up for any e-mail notifications for days off school. In our state, we have a website for all school closings that are weather related. You select the school name and it sends both parents updates of school closings. Some schools have an automated calling list that will send you a message when school has been called off.

In this school notebook, you can also keep any sports schedules, sporting calendars, phone numbers for school friends, copies of school documents (for special needs we have papers to fill out for medication, etc.) that you send in and a place for the current IEP (Individual Education Plan). That way, everything you need for that school/child is in one place.

After you have done all of this, comes my favorite “Back to School” ritual. On the first day, Dear Son goes back to school, I like to go and get a manicure or pedicure or both. I make sure I never schedule a work day for the first day back to school, in case anything should go wrong (sometimes I have to go to school and show them how to use the feeding pump or start a feeding), but also since it’s a pamper day for me. It’s the first day I get to relax after the summer.

Note: I am a Professional Organizer and Home Stager and run a business called, "Dream Organizers". My motto is, "Keep it simple. Get organized. Make it beautiful."

All information contained in this post is copyright protected and intended for personal use. It can not be copied or redistributed in any form without prior consent.

Tuesday, August 11, 2009

Dear Son Update

Photo of Dear Son sleeping in the recliner. You can see he doesn't look well. I turn the recliner so I can see him. You can also see how his right hand turns to the right; the new hand splints will keep this from getting worse.

First, let me apologize for the delay in posting. Dear Son's seizure issues have been ongoing for the past few weeks and quite severe at times. Not only was he having increased seizures, but he was sleeping a lot, sometimes up to twenty four hours a day. As a result, I have been in contact with his pediatric neurologist several times over the past few weeks and he's made several medication increases. I think we are heading in the right direction, but we aren't quite there yet. I remembered last August, Dear Son had similar issues and was hospitalized for seizures at around this time. In addition to his seizures, I have been trying to get him up and at least sit him upright for a few hours a day and that too has proved challenging. Dear Son has continued to grow taller and heavier and that has made it more difficult. It is wonderful however to see him growing up.
In this picture, a seizure is just starting. You can see the grimace on his face. You can also tell from his posture in the chair, that he's not doing very well. He is slumped down in the chair and is not able to maintain much of an upright position, even if you try to lift him up in the chair. The pink blanket is to help prop him in the chair to keep him from falling over on his right side, since he can't sit up very well anymore. I used the black magnet on his left wrist and activated it over his vagus nerve stimulator to try and stop the seizure (implanted under his left armpit) just prior to taking this photo.

On top of the seizure issues, I sustained an injury to my left knee that left me a bit incapacitated for almost two weeks. I had three knee surgeries over ten years ago and at that time, they recommended a left knee replacement but said I was too young so it was never done. Somehow, I injured this knee again, I think while moving Dear Son, and I was unable to walk and in severe pain. As a result, I couldn't do much of anything, let alone any blogging or pc time. I was icing it repeatedly throughout the day and after two weeks, I can now walk around the house however doing something like grocery shopping still causes a lot of pain and swelling. I was able to get a lot of reading done, reading a book or so every day (work days excluded) so that was nice.

Another picture of him slumped in the chair. The chair is turned and the coffee table moved over to allow me to use the hoyer lift. The blue sling that he sits on attaches to the hoyer lift so I can move him. Underneath that is a pad over the chair in case his briefs (diaper) leaks.

I have also been busy with Dear Son's appointments. Today we saw the pulmonary specialist at Big Academic Medical Center in May (This was a follow up visit from his ICU hospitalization last May.). Last week, we had new hand splints made for both hands and senior portraits. (In the first picture above, you can see his hands are twisted. The splints will hold them straight and keep them from getting worse.). The week prior we had wheelchair clinic and list goes on and on. Thankfully, Dad is helping me take him to all appointments since I can't lift him.

Perhaps the most exciting appointment, was getting Dear Son's senior portraits for the high school yearbook. That was one of my goals as a mother, to have it done. Dear Son goes out of district for high school however they do not include him on his current high school's announcement listing, despite my repeated requests. As a result, he hasn't had his picture taken in years. Instead, I get high school announcements for his home school district, which aren't meaningful. At the IEP last year, I had two wishes for his senior year in high school: first, to get his senior picture in the yearbook and second, to go to a school dance. I'd love to see him all dressed up for prom or some dance. That would be a nice experience for me as a mother. Now that he has been granted the Make a Wish trip to Disneyworld, it is not as important that he go to the senior prom since we'll have a lot of good memories from our Make a Wish trip.

The yearbook photo shoot went great! I think there are some wonderful shots of Dear Son. The first ten minutes or so of the photo shoot was wonderful-he was all smiles and I couldn't have asked for a better experience. What a fun time I had! It was great seeing him all grown up and smiling. After that, he got tired. I was able to get a preview of some of the photos and they looked pretty good. He had photos with three different backgrounds and then his cap and gown picture. I can't believe he will be a senior in high school! I should get the proofs in another week or so and I'll try to share them. I can't wait to order some of these pictures. Normally, I take all of my own photos of Dear Son but it is nice to have some different backgrounds for a change.

Dear Son returns to school next week so things should get a little easier and I should be back to blogging a bit more.

As always, thank you for checking in on us and your interest in Dear Son.
Related Posts Plugin for WordPress, Blogger...

Blog Archive