"Dream" Playroom Makeover-Part I

"Before" photo of the playroom.

Some time ago, I was asked by a client to organize and makeover a seven year old girl's playroom. While I gave you a sneak peek a while back, it took a bit longer since two of the items were on backorder. Over the next few days, I'll be sharing this project with you ending with the "big reveal" complete with the amazing before and after photos. But first things first, let's talk about the project plan!

Another "before" photo of the playroom.

The playroom was a 10 x 10 foot room filled with toys. My only instructions were to organize the space. In addition to meeting her needs, I also wanted the room to meet other goals, maybe things that the client nor the little girl asked for, but once it was done, they wouldn't be able to imagine the room without it. In addition, I paid a lot of attention to what activities the little girl liked to do now. For example, she was always coloring or drawing, playing with her Barbie dolls and she liked to do her hair. So I knew the playroom would have to meet those needs.

"Before" photo of the playroom.

The first step for me, was to create a project plan for the space. Here I identified the assets and liabilities of the space, as well as all of the things I wanted the room to do. This included identifying not only the needs of the client but the goals of the actual space.

Some of the things I identified that the room should have are the following:

• Things at her level.
• Place to create art (draw, color or kits).
• A room to grow with her.
• Desk for homework.
• Calm, minimalist decor.
• Vanity to do her hair.
• Place to read.
• Make things easy for her to put away.
• Room that can change over time.

This list is not all inclusive but will give you an idea of where I want to go. From there, I identified four main areas of the room:

• Closet-To store all of the toys.
• Vanity-To do her hair and to hold her jewelry.
• Desk Area-To color, paint or do any kind of artwork. Also, for homework.
• Reading area-I wanted a comfortable place to read to encourage reading but also to help her learn that it's o.k. to be still and quiet once in a while.

Once that was done, I decided on a color scheme with green walls and black and white decor. I wasn't sure at first what the accent color would be however when I saw the print for the drapes, I knew I would go with black and white. I really wanted to get away from pink for a little girl's playroom, since I think it's getting a bit overdone. The black and white while sophisticated is kept childlike with white accents and the bold color.

----

~The Closet Makeover~

Now that you have the overall plan, I'll talk about one of the first projects I did, which was the closet. After sorting the toys and working with the homeowner and little girl with regards to what they wanted to keep and give away, I decided on the function of the closet. I wanted to closet to do two things: first, store all of the toys. The girl is seven and I didn't want the toys to be all over the room since it would have other functions, like creating art, doing homework or reading. I feel it 's hard to be creative when things are everywhere and I wanted to help instill a sense of order to the room.

Picture of the closet before.

In addition to storing all of the toys, I wanted to think about the future needs of this room. I wanted adjustable shelving in the playroom so that as her needs change, so can the room. I thought that perhaps one day this room might be an office and if it were, the shelves could hold bulk office supplies or be moved to accomodate whatever hobby room this might be.

If you look closely at the top of the closet, you can see a horizontal bar along the top back of the closet, which is the "hanging bar" for the three uprights.

In addition to toy storage, I also thought she could open the doors and just play right there. She had some doll houses and stages that needed to sit flat so I thought the shelves would work just fine. She can play right there. And that's exactly what she does. The beauty of this is that it makes it easy to put things away since they are already in the place where they should go.

For the closet shelving, I went to Menards and used the Rubbermaid kiosk to purchase the supplies for this closet. Prior to going there, I measured the closet height and width and drew out the shelves for the closet. I knew I wanted adjustable shelving and I measured the depth so I could get a deep shelf for the closet. To save costs, I ordered the regular wire shelving and not the "linen" shelving which is more expensive. The regular wire shelving would hold her toys just fine. Once I knew what I wanted, I went to the kiosk and put in my information. You can use the pre-designed closets or create your own. I created my own. Once that was selected, you enter in the height and width of your closet, then select your shelving sizes. In this case, I selected 16 inch deep shelves so it could hold the games but also the larger plastic bins. For the width of the closet shelving, I took the actual width of the closet and had the shelves cut 1/2 inch smaller than the width so I could get the shelf in the closet easier. If you cut the shelf the exact same size as the width, you won't be able to install the shelf in there.

The beauty of this kiosk is that it will print a shopping list for you with the supplies you need for the shelves, but also the tools that you will need, complete with Sku numbers. You may already have many of the tools, but it doesn't hurt to check. One of the biggest advantages to the kiosk, is that it will tell you the minimum number of shelves to buy so you don't overbuy. In the past, I would figure all of this myself but since the kiosk was there, I decided to use it. A lot of the times, the wire shelving can come in 6 and 12 foot widths, with different prices and since you want to buy all of your shelving for the lowest price, it will figure this out for you. You could also use the kiosk to get an estimate for your project so let's say you wanted to get an idea of what a closet remodel would cost, you could enter in your measurements, push the button and you'll have the cost and the shopping list for a later day. In this case, I printed the list and the client purchased all of the materials and brought them home and I installed them on my next work day. (O.K. maybe I did call Dream Dad to help me hold the hanging track and drill into the walls.) The cost of the closet shelving was $212.

For this closet, I wanted the closet to have five 16 inch shelves that were 50 3/4 inches wide (The actual closet width was 51.5 inches wide.). The kiosk printed a shopping list that included the shelving (one 6 foot shelf and two 12 foot shelves), the uprights for the back (it figures out how many uprights you will need based on the width of your closet), the hanging track/bar (see photo above), the wire shelf brackets to support the shelf, the end caps and the screws. Installation was fairly easy. You simply attach the hanging track, then the uprights and then your shelves. I love having adjustable shelves in a closet so it's a nice improvement over shelving in the past, when you installed each shelf in the closet separately. Picture of the finished closet.

In addition to the closet, the little girl already had a chalkboard in the room that she wanted to keep. I simply added a metallic strip with some bins for the chalk. Also, the mother purchased this letter for the playroom.

"Before" photo of the letter "e".

I decided to use the letter but made a slight modification. Instead of using the ribbon that came with the letter, I purchased a three inch wide black and white polka dot ribbon to match the color scheme of the room. The black and white ribbon really pop against the green walls. A decorating tip is that when you see accessories that you like, but they aren't in the color you need, don't be afraid to alter them or paint them so they'll go with your decor.

"After" photo with the new ribbon to match the room's decor.

"After" photo of the finished closet and the chalkboard.

Coming up: Dream Playroom Makeover Part II: The Vanity

To see the entire playroom makeover, click here.

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

Dear Son Update

Things don't seem to be going particularly well right now. Yesterday Dear Son had a terrible seizure in the morning. I had started his feeding and went in to put in my contact lenses and when I came back, he was having a seizure. I used the magnet to activate his vagus nerve stimulator twice however the seizure escalated so fast, that I had to take immediate action. I can't remember a time when it escalated this fast and it made me quite nervous. I gave him some Diastat, an emergency rectal medicine that I keep in his nightstand. It usually works right away. When that didn't stop it, I debated whether I should call 911 or give him his morning medications. I was worried that if I stopped to call 911, by the time they got here and got an IV in and then got him to the hospital, twenty minutes would have gone by and that is too long when things are moving this fast. I ran to the kitchen and got his Phenobarbital and Valproic Acid meds in the syringes and gave him those via his g-tube. From there, I ran back and got the rest of the seizure medicines ready and gave them to him. I opened the garage door and my apartment door for the paramedics and started to call 911 however the seizure seemed to be stabalizing, or rather it wasn't escalating. That is how I judge whether or not I should call. Fortunately, all of the medications started kicking in and I didn't have to call. The seizure lasted twenty five minutes from the time I saw it. It was a very stressful way to start the morning let alone the minute you get out of bed. But more important was Dear Son; I feel so bad that he has these seizures. He really is a sweet kid. I wish things were different for him.

I spoke with the pediatric neurologist yesterday and we will get seizure levels drawn on Monday morning. Dear Son is crashing right about the time his morning seizure medicines are due which leads me to believe that they are depleted by morning. Back in 2001, Dear Son had early morning seizures and we learned after taking some levels that he was a hyperutilizer of his medicines meaning he metabolizes them quickly. At that time, he only received his medications in the morning and at dinner and after that, we had to add the midnight medications. He now receives six seizure medications given every six hours.

I have not felt that things are going very well. He seems to be deteriorating faster to me. I do see that at different times things seem to deteriorate quickly and then he seems to stabalize for a while. At the present time, I think he is deteriorating physically however I am not clear as to whether the progressive neurological disease is causing the physical deterioration or if it's the seizures, although one might argue that the progressive neurological disease is causing the seizures hence the physical deterioration. I doubt it really matters which came first.

I am quite concerned that he is having far more seizures than what I am seeing. I took him outside to sit this afternoon and decided to transfer him to a rocker outside from his wheelchair. He likes to rock and I normally do this inside by using a hoyer lift. Anyway, I moved him to the rocker however he couldn't sustain a sitting position. He kept having head drops and then he'd try to support himself and he'd have another little seizure and finally he was having so many within a five minute period that I had to transfer him back to his wheelchair. I have to wonder what is going on in his brain. A typical EEG for him is quite abnormal; nearly all show electrical activity six seconds of every minute twenty four hours a day.

What is more troublesome is what may be happening when he is sleeping. I laid him down for his lunch today and he usually takes a nap while his feeding is going. I checked on him a few times as I normally do and things seemed o.k. however when I got him up, he had dried tears and dried saliva on his cheek. The only time I see a tear or tears is when he has a seizure.

I am very concerned and a little nervous right now. Dear Son's Dad took him tonight and will take him for the lab test on Monday so I can work. I do not feel he is very stable right now and would not be surprised if he had an emergency. I packed the Diastat just in case and Dad has everything he needs, just in case.

Once we get the lab work done, I suspect he'll increase the medications again.

On a different note, I apologize for the delay in posting. Summer school ended on Thursday so I need to focus a little more on Dear Son since he is total care. He also continues to grow taller and bigger and that is making the care more physically demanding and wearing me out a little faster. He is getting much heavier to push in the wheelchair so everything together, just raises the bar a little bit. The next four weeks are always the hardest for me since I care for him 24/7 and don't have any respite care this year due to the state budget cuts.

Thank you as always for all of your comments and suggestions for the Make a Wish trip. They were really helpful.

Make a Wish Update-First We Have to Get on the Plane...

Dear Son bowling on a school field trip last year.

Earlier this week, I recieved a call from the coordinator for Dear Son's Make a Wish trip. She was preparing to make travel arrangements for our trip later this year. I must say that the Make a Wish people have been absolutely wonderful in terms of planning this trip but I thought it might be interesting to share some of the challenges of traveling with a special needs teenager or anyone else with disabilities. If anyone has any ideas to make this process easier, I'd be thankful.

Typically, when they make arrangements for you, they get you out on the earliest plane and have you come home on a later flight so you can take maximum advantage of your trip. The first option included an 8 a.m. flight. That's pretty early when you talk about getting Dear Son fed and ready. It takes almost three hours to feed him so when I make an appointment for him, I have to plan ahead by at least five or so hours. I have to allow three for feeding, one to get him dressed and then 30 minutes to get him in/out of the car and to break down the wheelchair for transport and then another hour travel time. I asked if we might leave later in the day, say around 11 a.m. I said that if that didn't work, the earlier flight was fine.

The first challenge we had was getting Dear Son into an airplane seat. He's never flown before, which is neither here nor there, however Dad would have to transfer him from the wheelchair to an airplane seat. To do this, Dad stands in front of Dear Son's wheelchair, lifts him under the arms and drags him to the seat and sits him there. Dear Son can not weight bear at all meaning he can't stand or support himself even a little when you move him. Unfortunately, it is one of the effects of his progressive neurological disease. At home, I use a hoyer lift but we won't have one there. Well, in order to get him in the seat, Dad needs some room in front of the seat so he can move him. We had to request a first row seat in order to do that otherwise, Dad couldn't lift Dear Son into the seat. After many conversations, the coordinator ended up booking an 8 a.m. flight for us, which is fine, because it was the only one with seats left in the front row, which we needed.

The second challenge we face is getting him on the plane. When the Make a Wish volunteers were here on the initial visit, they took measurements of Dear Son's wheelchair. It turns out that this wheelchair is too wide to fit on the plane to load him into his seat. The aisles are 19 inches wide and his chair is much larger. We have a second wheelchair that Dear Son had when he was ten years old that we use on occasion for short trips. The down side is that he's outgrown the chair. While it no longer provides support for him and while we can't use it for a trip like this, I measured the width of the chair to see if we might be able to use a wheelchair provided by the airline to get him on the plane. Our chair is exactly 19 inches wide so in order for the airline wheelchair to fit on the plane, it must be smaller. I don't know that Dear Son will fit in their wheelchair to get him on the plane. We'll have to wait and see.

In addition to getting him on the plane, is the issue of his wheelchair itself. Our wheelchair vendor explained that the wheelchairs are placed with our baggage. He said often they end up stacking luggage, etc. on people's wheelchairs. He suggested that we remove the back and seat of the wheelchair to prevent them from doing this, but more importantly, so they don't get lost. Once they break down the wheelchair to load it on the plane, the seat and back can get lost. Since Dear Son needs this chair, we can't have that happen. One issue that makes things more challenging for us is that Dear Son's wheelchair has a large head support, which he needs since he can't support his head on his own. That makes using any other wheelchair, or a standard wheelchair that you find at most places, out of the question.

Next, assuming we can get him on the plane and in the seat is the issue of the bathroom. Dear Son is not toilet trained and we have to lie him down to change him. We can double diaper him and also use an insert in his diaper that we can pull out if he's wet (It's an option when you can't lie him down but only an option if he urinates and not if he has a bowel movement.). The problem is that when we feed him, he goes to the bathroom after that. I assume if I start his feeding at 1:30 a.m., he'll be done by 4 a.m., I'll give him his 6 a.m. meds and hopefully will urinate by 5 a.m. when the wheelchair van comes to pick us up to take us to the airport. Then the flight won't leave until 8 a.m. and will arrive around 11 a.m. Florida time. We'll bring pads to put on the airplane seat so that if he's wet it won't get the seat messed up. I'll have to check at the nation's busiest airport to see if they have a room where I can lie Dear Son down to change him. Some people have suggested a Texas catheter for Dear Son but I don't care for those. Plus he moves his feet and I'd hate for him to break that urine bag!

We also have the challenge of Dear Son sitting up. He normally can't sit up in a wheelchair or anywhere for more than two hours at a time. He just can't. So on the day of the trip, we'll leave our apartment at five a.m. and he'll be in his wheelchair as we travel to the airport. He'll sit there until we get on the plane and then another three hours on the plane until we arrive in Florida and then some more time sitting up until we get to the room. He won't make it. We are flying United because the Make a Wish Foundation tells us that it is the only carrier that has torso straps to support the patient during take off and landing. While Dear Son can sit between Dad and I, when he's tired, he can't support himself and he'll just slide right down off the seat and onto the floor. I'll have to check at the airport to see if there might be some place for him to lie down, even briefly.

Next is the issue of his medications. We have a LOT of them. We have two liquids, plus ten other medications. I was concered about the new security measures and taking liquids of more than three ounces on the plane. The Make a Wish Coordinator stated I'll need a note from the neurologist for security.

In addition, he has a vagus nerve stimulator implanted. I have a medical identification card for use at the airport, indicating that he has a vagus nerve stimulator, so hopefully everything will be o.k. My only concern is whether or not there might be other electronic devices that might interfere with his vagus nerve stimulator or cause an malfunctioning.

All in all, these challenges can be a bit overwhelming at times. I am excited and appreciative of everything the Make a Wish people have done for us. These challenges however are ours and do not reflect in any way on all of the hard work they have done to make this a wonderful trip for our family! The Make a Wish people have gone out of their way and are doing some things to make things much easier for us, namely helping us with supplies. They have offered and will be providing Dear Son's diapers, formula, changing pads and wipes for us at the hotel, along with a hoyer lift and wheelchair van to make things easier for us. To take all of those things with, just the supplies alone would have filled a very large suitcase and have been over the weight limit! Dear Son would have needed two cases of food, plus two to three packs of adult diapers, plus two to three packs of pads, plus two containers of wipes just for a week's time.

I am sure we'll get all of the kinks worked out with a little more thought and research. If I can get a place to change him and a place for him to lie down at the airport, we should be good to go! Overall, we are excited to have this opportunity. I have been talking to Dear Son every day about our trip. We'll get another itinerary as we get closer to the big day but for now, we are booked for our flight and ready to go.

As for Dear Son, he's had a rough summer. He's had a lot more seizures lately. I think the most recent medicine increase is working however he's sleeping a lot more and I just don't think he's looking very well. Your continued prayers for Dear Son are much appreciated.

Note: Dear Son suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.

Organization Friday~The Importance of Homekeeping

In case you haven’t figured it out by now, I am a real homebody. Yes, I really like homemaking. I like everything about it actually and really enjoy it when things look perfect. Homemaking isn’t very popular, nor is it something that is discussed very often. The closest thing I see women verbalizing is looking for a cleaning schedule or something like that. The problem with homemaking or housekeeping is that it can very boring. Somehow, the repetitive tasks can almost drive you nuts. And I am not sure there is anyone, when given the choice of doing something awesome or making the bed, chooses to make the bed. But I also don’t know anyone, when given the choice between sleeping in a beautiful bedroom, with crisp linens versus a bedroom with an unmade bed and all cluttered up, would chose the latter. But I really like this stuff. I remember one time reading about a finishing school of sorts for caretakers where they taught you how to run a home like a business, making it almost a seamless work of art. This was some twenty years ago and I remember wanting to use one of my week’s vacation to go to this school for the training. Only I wasn’t being paid to run someone else’s home, I just wanted my home to run beautifully, with a place for everything and everything in it’s place.

Apparently, I am sort of alone. I have yet to meet anyone who really gets into it. I try to have these conversations with women about housekeeping, but most don’t really care. Our conversation never really makes it beyond getting the house clean. Most of the discussion evolves around whether or not they have a service to clean their home versus doing it themselves. I even tried joining an internet group for housekeeping ladies, but most of them were struggling to keep up their homes. I want to be part of a group of ladies whose goal is “excellent housekeeping”. I envision we’d have our little internet group and then we’d meet at someone’s home for a proper tea, to discuss our homemaking victories and tips.

Now that my secret it out, it probably won’t surprise you that I checked out a few books on homekeeping at the library, four to be exact. I go on-line and order my books and one in particular caught my attention. I had read an excerpt of, “Mrs. Dunwoody’s Excellent Instructions for Homekeeping” on a website and I couldn’t stop thinking about it. This book was a real pleasure to read. There are many books out there that give homemaking tips but rarely the one that has “real” tips, meaning tips that really work and not merely tips to fill the pages of a book. It was fashioned around the traditional notes that southern women penned regarding housekeeping and living a beautiful life. Back then, nineteenth-century southern women kept these “receipt books” as they were called, where they included everything from tips on homekeeping to the proper rules of “decent” behavior. I found this fascinating of course.

Mrs. Dunwoody is a fictional character loosely based on the author’s great grandmother and other inspiring women. The book was written to provide the reader with advice and wisdom typical of these receipt books and yet, as you read the book, you begin to have a hard time separating fact from fiction. On the one hand, you find yourself engulfed in Mrs. Dunwoody’s life as if you were right there. Because the wisdom is timeless, many of the tips are useful today. And then of course, I’d remember how my mother did things and how my grandmother did things and that fundamentally, they weren’t that different. Being an orderly person myself, I couldn’t help but compare her daily, weekly, monthly and seasonal tasks on her domestic calendar to my own routines. I was struck by how similar they actually were. Of course, I don’t have a receipt book but I do have a “HOME” manual that I created myself, with “HOME” being an acronym for, “Home Organization Manual for Efficiency”.

What was most striking about this book, was the sense of importance of homekeeping in shaping the lives of our children and everyone in the home. No longer was keeping our home in order just a matter of cleanliness or decoration but the fundamental reason was to create a sort of optimal foundation for our children and everyone in the home to thrive. She says, “Our family members will carry the atmosphere we create in our homes for the rest of our lives.” “Organization has more benefits than mere efficiency, knowing your life is in order reduces strife and anxiety and increases confidence.” She uses various examples of how when we are rushed, we can’t be at our best or when we spend time looking for things that we can’t focus on what’s really important. She goes on to talk about how our family members will carry on the atmosphere that we create in our homes for the rest of their lives. She talks about the importance of order and that without it, none of the occupants in the home can reach their full potential. “When we make conscious decisions about the order in which we shall tend to our dates and our lives, everyone in the home thrives.” Meaning, we can focus on other things when we can find the things we need in our homes and when we have a sense of order and routine. When you understand this concept, the “receipt books”, as they were called, bring a whole new sense of importance to the art of homekeeping. No longer are we just keeping house, but we are really creating an optimum environment for our children and everyone in our house to thrive.

Imagine for a moment, a child getting off to school without order in the home. Without order, the child might not wake up in time. He’d have to search through the laundry for something to wear, because nothing was clean. Then if it was cleaned, it might be wrinkled. Without a proper breakfast, breakfast would be out of a box, if anything at all. Being late, he’d try to grab his backpack, but he wasn’t quite sure where he left it, so he’d frantically search for the backpack, hoping the school bus would still be waiting outside.

Now imagine for a moment, a home that is in order, where excellence in homekeeping is aspired. The boy, would get up on time, having time to get his teeth brushed and get his bed made before school. His Mom would have a healthy breakfast for him which would help him flourish at school, since he could think well, having proper nourishment. His backpack would be ready to go, on the landing pad and his coat would be hung up on the hooks near the door. The day would be off to a great start.

In both situations, the child hasn’t arrived at school. We haven’t even addressed whether or not the child might have some other things going on, such as ADD, which would make his life more challenging. Given these scenarios, one would think we should place a bigger value on order and homekeeping.

In the end, I couldn’t think of a more inspirational book as we prepare our children for the “Back to School” season. As Mrs. Dunwoody said, “We must approach every task as a blessing to be received, never as a chore.” As I changed Dear Son’s sheets for the second time in a day, I kept Mrs. Dunwoody’s words in mind. Making a nice home for the people we love is important.

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

Sink or Swim: When Things Go South at the Pool

Here the aide is taking Dear Son into the pool via the pool wheelchair. Dear Son is to the left of the man in the blue swim trunks in the center of this picture.

We talked this morning, as we always do, as I am getting him dressed for school. I talk about what will be happening that day at summer school, since every day brings a different activity. Some days they swim, some days they have art projects and other days it’s music. The afternoon session, which is two days a week, is run by the special needs recreation co-operative. They have an in-house activity on Tuesday and a field trip every Thursday. It was looking to be a fun summer.

I had just attended school earlier in the week, for parent open house. When I got there, Dear Son was sitting in the wheelchair getting his lunch via the feeding tube. As I leaned over to kiss his head, I noticed his shorts were wet, which meant he needed to be changed. I told the aide, whom I had never met, that he was wet and needed to be changed. He acted like it wasn’t a big deal and said he’d change him after his lunch. The only problem with that, was that his lunch wasn’t over for another hour and a half. At home, I don’t do that. I never let him sit in his urine. His Dad is the same way. We change him as soon as possible. I talked to the aide a little more but I just wasn’t feeling too great about the whole changing thing.

This morning, as I was getting Dear Son ready for school, I talked to him about swimming. Wednesday’s and Friday’s were swim days at the pool. I had missed Parents Day at the swimming pool a few weeks back, because I was working, so I opted to come today. I was so excited. I love coming to see Dear Son swim, because he loves it so much. Even people who have never worked with Dear Son directly at school, know he loves the pool. He’s one of the first ones in and the last one out. I'd bring my camera and take pictures of his smiling face. I figured I’d take the pictures, then go home and compare them to last years pictures, to see how much he’s grown. I can’t tell you how excited I was to go today.

I mentioned this to Dear Son, that I’d see him at the swimming pool, as I was getting him dressed. He made a sad face, which was really odd. He loves it when I come to school to see him. I couldn’t quite figure it out. I thought something might be wrong but I had no reason to think otherwise. As I got him in the wheelchair for school, he had a small seizure. I was able to stop it with the magnet by holding it over his vagus nerve stimulator. Dear Son has been having seizures off and on for a few weeks now and recently we made some medicine changes which had been helping.

Another picture of him going in the swimming pool.

I arrived at the pool to see them taking Dear Son into the water. They have a zero grade pool, I think that’s what it’s called, where the pool depth starts at around an inch, then gradually gets deeper. They used the hoyer lift to lift him into the pool wheelchair, then rolled the wheelchair into the water. The aide soon brought Dear Son over to “his spot” at the pool. His spot was in the three foot section of water.

This is a photo of Dear Son today, right before his seizure. Notice that the life vest has already started going up on his head. While it looks somewhat secure in this photo, the straps were so loose that they floated up on the side of Dear Son. You can see Dear Son is very tense and the aide does not have a grip on him nor is he holding him securely.

I was quite alarmed when I saw Dear Son. The aide, was hardly holding him at all and his life vest wasn’t secure. I took a picture and then things headed south pretty quickly. Dear Son began having a seizure. His hands started shaking and his eyes started squinting, almost like a frown. Soon his mouth was foaming and he was having trouble swallowing and breathing. I told the aide he was having a seizure and he needed to get a better grip on him. He didn’t listen. I told him again that he needed to hold him better. With that, the life vest began to float off around Dear Son’s head and he began sinking in the pool. I began yelling at him to grab him since I thought he was going to drown. I panicked and looked around and there weren’t any other men around to help. Dear Son is a big guy and it’s pretty easy to lose control of him, no matter how much you don’t want to. And in the water, well, he’s slippery. His seizure started getting worse and his mouth was foaming even more. He was sinking in the water and the life vest was falling off. I told the aide that he had to grab him and get him out of the water. Finally, someone helped get him up to the side of the pool. I told them that I wanted him out the water right away. Finally, I was able to get someone to get his teacher, who was far across the pool, and they got the pool wheelchair and attempted to get him in there. It took two men and when that failed, they had to call in someone else to help get him in the wheelchair.

If that weren’t enough, having him almost drown, the Summer School Coordinator, didn’t see a problem. He felt that Dear Son was safe. When I explained that it wasn’t safe to have him in the pool with a life vest that hadn’t been secured, he said that he was there every day and he thought things were o.k. I explained that the aide didn’t secure the life vest appropriately, missed the fact that Dear Son had a seizure, didn’t have another aide close by as a back up, and couldn’t hold Dear Son on his own. That is not safe. I told him no more swimming for Dear Son. He tried to reason with me explaining that there were only two more swimming days left and that I should let him swim. I told him that if he wasn’t safe, that was two more opportunities for him to drown and that I wasn’t willing to take that chance. I told him I didn’t want to be planning a funeral. I mean, Dear Son can’t stand, can’t swim, can’t walk, can’t talk and has seizures. He has limited use of his hands/arms. If he gets into trouble, he can’t help himself in any way. It’s not like I am being overprotective for a normal child. Dear Son has some significant disabilities and significant issues that present a real safety issue in the pool.

This is the picture from last year in the pool. Notice the life vest is secure and the aide is holding Dear Son securely. You can see both of his hands supporting Dear Son. Note how relaxed Dear Son is in the pool; I called this, "Zen Swimming".

As I was leaving the pool, his teacher came up and wanted to talk. I explained the situation and he kept saying that he thought he was safe. I told him that the vest wasn’t secure and that the aide didn’t have a grip on him and that there weren’t any other aides around. He said that it’s normal for the one aide to take care of Dear Son and so far things were fine. I told him I didn’t want him swimming anymore. He wanted to know what he could do so that Dear Son could still swim on swim days. He stated that he loved the pool so much that he wanted him to swim. He asked if I would agree to let him swim if they secured the vest and had two people with him and explained that there were only two swimming days left.

This is a picture from last year. Notice how the aide was holding him and how Dear Son was secure. Also notice that there are three other men in the photo that could help if he got in trouble.

As I left the pool, I was crying. This was supposed to be a fun day, seeing him happy at the pool. Instead, I almost saw him drown. And worse, they didn’t have an issue with that. It just goes to show you that you have to be involved. I try to trust people with Dear Son but honestly, when this stuff happens, I can’t feel good about that. What if I wasn’t there? What if he drowned?

I went home and called the pediatric neurologist. While waiting for him to call back, I checked out the summer school forms I signed a few weeks back. Normally, the doc writes on the form that in order to swim there must be two aides there. When I looked at the form, the form was a release form, releasing them from any liability in case of an accident. No wonder, it was o.k. They knew they wouldn’t be liable. I had forgotten that I had signed that but on the flip side, he can’t attend summer school without it, so what is a parent to do?

After speaking with his neurologist, he stated that it wasn’t safe for Dear Son to swim. I am feeling really bad right now. It’s so hard sometimes, now that Dear Son is so fragile. I worry all the time that I’ll miss something and he’ll die or he’ll die in his sleep from a seizure. I lay awake some nights counting his breaths or making sure that he is breathing o.k. before I allow myself to fall asleep. If he sleeps too long, I worry he died. I try to check on him regularly to make sure things are o.k. I try to get up every two hours or so, to turn him over at night, since he can’t roll over on his own, so he doesn’t get any bedsores. I know it’s getting near the end for him and I am not willing to let him go. I just wanted to do what every other Mom does; I just wanted to see him smile today. Instead, he almost drowned.

Note: Dear Son suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.

Organization Friday~ Progress Not Perfection

Employee Lunchroom Remodel

It can be pretty exciting to see a dramatic makeover. I don’t know anyone who doesn’t like a great before and after. Many times, as soon as people are done admiring the makeover, there comes a point where they want that same thing for themselves. It doesn’t matter if you are looking at a magazine, watching a decorating show or seeing a before and after picture of someone who has lost a lot of weight. At that point, it’s not uncommon to start hearing the objections or reasons they couldn’t do that in “real life”. How often have you heard someone say after seeing a contestant on “The Biggest Loser”, “Well, I could lose weight too if I didn’t have to work and all I did was stay at the ranch all day.” Or when Oprah lost weight, people would say, “Well, I could do that too if I had a personal chef…” People like to make excuses as to why they couldn’t achieve the same result.

It’s great to be inspired by makeover shows. They are exciting and they usually promise what they deliver…a fantastic result! In real life, it takes a lot of changes for them to get to the end result. The end result is the culmination of a lot of little victories or little goals along the way. It’s not just one thing but a lot of things. But looking over the show, we like to project of what life would be like if things were “perfect”. We’d like to think that if we stayed at the ranch, we’d lose all of that weight or if we had a personal chef, we could achieve great things. The problem is perfection. We think that to achieve great results, we have to be perfect.

I was at a client’s house last week when she pulled out her a canvas bin with plastic baggies inside. On the outside of the canvas bin was a handwritten label that said, “Baggies”. Inside the bin, contained multiple gallon zip loc bags each with different size baggies inside. She had one for the snack size baggies, one for the sandwich, one for the quart size, etc. One the outside of each bag she wrote the size in a magic marker. She did it to make it easier for her young daughter to fix her lunch.

I noticed the bin and told her I really liked it. She said she got the bin and put the label on it the other day. I told her that it looked really nice and that I was proud of her. I have worked with her for a while now and she has always been the client that likes “being” organized (meaning hiring an organizer to organize her stuff) versus doing it with the organizer. But this time, she took the initiative, on her own, got a bin, labeled the baggies and labeled the bin. This was a huge step. I was really excited for her. We talked some more and she said that in the past, she wasn’t bothered when the house wasn’t organized or if it was messy, but now she likes it when it’s clean (she has a cleaning service) and organized and she wants to keep it that way. This was a huge step for her. I like to think of it as a light bulb moment for her.

Labels on bins in Employee Kitchen Remodel

As I looked at the label, I thought about it for a minute. If I were doing the label, I would have used the label maker and/or created a pretty label. She could have done the same thing. After all, she did have a label maker. (I ask that all clients purchase one for their own home so that they can label things when they need it.) But that wasn’t the point. The point was that she took the initiative and did this herself. She recognized a problem and fixed it.

How often that many women would have got caught up in the perfectionism of the label. They might have searched for the perfect bin or worse yet, purchased a bin without measuring hoping it would fit! Or they might have put off the project since they didn’t have the bin or put off the project because they didn’t have time to make a label. The list could go on and on. When you get caught up in perfectionism, you miss making any progress at all! Far better to take baby steps than no steps! More importantly, making this bin wasn’t a baby step, but it was real progress. In the past, she would have done nothing and it would have been just fine. But now, she wants more for herself. She is taking actions to support living the lifestyle she wants to live. She is getting herself organized so she can live this way. This is huge!

And how easy would it be when she has another minute on another day to create a label or better yet, a pretty label for the bin.

Sometimes, when we are trying to make a change, we need to remind ourselves that it’s o.k. if everything isn’t perfect. It’s progress over perfection. In terms of organizing, I like to think of this as function over beauty. Get the function down first, then make it beautiful; in this case, using a bin she already had and creating the label is making baggie storage functional first. She can always come back and make it beautiful by getting a prettier bin or attaching a pretty label.

As we finished up our talk, I reminded her of the motto for my business: “Keep it simple. Get organized. Make it beautiful.” I told her that when we make things nice, we want to keep them that way and that was the reason for the motto.

Notice that the motto has keeping it simple and getting organized before making it beautiful. It’s o.k. to make baby steps. Just make sure to pat yourself on the back once in a while.

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

Reminder: All posts on the blog are Copyright 2009.

Make a Wish Trip Approved!

Tonight I received a call from our Make a Wish Volunteer and she told me that Dear Son's Wish Trip to Florida had been approved. Thank you for all of your wonderful suggestions. We will be staying at the Give the Kids the World Village and will be going for Dear Son's 18th birthday! Give the Kids the World is a 51 acre resort for children with life threatening illnesses that want to visit Walt Disney World and other central Florida locations. He is going to love this!

We will be staying there for seven days. They have arranged for a "Meet and Greet with Barney" which was one of my requests. Dear Son has adored Barney for many years and although he doesn't play with him as much now, he still was Dear Son's favorite toy. You may recall a story I wrote about him here. Basically, once we give the o.k. on the dates (Dad needs to get vacation approval at work), they'll begin the planning.

When the Make a Wish volunteers were here, I gave them several ideas based on your suggestions. I also talked about the things Dear Son loves, namely:

1. Swimming-He loves to lie in a hot tub or a swimming pool.
   
2. Country Music-He likes all of it but especially Gretchen Wilson. You can read about that here.
   
3. Barney-I thought maybe he'd like to meet him and perhaps even celebrate his birthday there.
   
4. Animals-He loves animals and they love him. We thought maybe he'd like the Disney Animal Kingdom Resort or swimming with the dolphins.
   
5. Massage for Dear Son. His legs and feet swell a lot and I thought that he might enjoy it.
   
6. ET ride at Universal Studios. One woman sent me an e-mail and said her son was granted a wish. She said the favorite moment of her trip was when he did the ET ride. Part of the ride is where they have you fly in the air on bicycles like in the movie ET. They had special spots to tie down a wheelchair and she said she can still picture his expression when his wheelchair took off into the air flying! He has since passed away but she still remembers this ride as the highlight of her son's trip. Dear Son has always wanted to run like the other boys and I bet he would really like the feeling of freedom that this ride would provide.
   
7. Polynesian Luau-I thought he might like the hula and fire dancers.

We won't know the actual itinerary until a few weeks before our trip. The Make a Wish Foundation has already set up a few things we'll need, such as a hoyer lift and a wheelchair van so we can get around with Dear Son. We also expressed concern of having a place to change him and they have already worked that out. (He wears diapers.) What is surprising is that they think of everything. They have arranged for diapers and formula for Dear Son as well. I would not have imagined that they would supply those nor did we ask.

One other thing that has been especially nice is our Make a Wish volunteers. One of them invited me on facebook and I've had the pleasure of getting to know her a little better and meeting her family. It's really made the whole wish experience a little nicer.

And the best part about the trip being granted, is that it is just in time for my birthday which is today. I can't think of a better birthday wish than to have the trip of a lifetime granted for my darling son. To see him smile will be the best part of the trip.

Note: Dear Son suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.

Happy 4th of July...A Lazy Summer Day

Dear Son and I enjoy taking walks in our area. I thought I might show you the walking trail near our apartment. It was one of the reasons I moved here. I think it's important to have a nice trail close to home, so it's easy to use. We walk this most days from June through October. I took the photos in order along the trail. Walking across the street, we start at the clubhouse of our apartment complex.

Going around the clubhouse is the swing (not pictured) which overlooks the river that runs along the apartment complex and golf course. The trail runs parallel to the clubhouse swimming pool, which is in the background. Our pool is quite nice, complete with fountains and pretty landscaping.

It's always relaxing walking along the trail and looking out over the river. We see a lot of ducks here and the red winged blackbirds are his favorite; they sing to him all of the time.



The bunnies come out here. We also see some beautiful butterflies in this area. These are the townhomes next to our apartment complex.

Passing more luxury townhomes.

I always love the look of paths in an area.

We see the blue herons in this area along the riverbank.

There are many bridges over the river. We are standing on one looking over the river and golf course. We've walked about a quarter of a mile at this point, not very far.

On the opposite side of the golf course are the homes that back up to the golf course. We love the pretty flowers here.

This is one of my favorite areas.

A nice picture of Dear Son and his pretty blue eyes. He is always quiet for most of our walks but he really loves them. It's getting a bit hard to push him though. The trail is not quite level; something you wouldn't notice if you were walking alone but something that is quite noticeable if you are trying to balance and push a hundred pound wheelchair with a young man in it!

Looking across the golf course. Our apartment complex in on the left in the rear of the picture.

More views of the golf course and nature area.

We are at the one mile mark about now. The entire trail is about 2.85 miles, or at least that is what we typically walk.

We walked to the end and are heading back home now.

I love this area here. Very secluded and tranquil. We see lots of squirrels and hear some beautiful song birds in this area.

Only 1/4 of a mile from home now. I love these bushes.

Almost home. Dear Son loves the sounds of the fountains in the front of our clubhouse. He always looks at them when we pass them.

Done! Time for a nap in the chair. Wiggles, our cat is eyeing the top of the chair, his favorite spot.
Notice his short legs!

We hope you enjoyed our little walk. I hope you get some time to get out and enjoy the weather and take some time to relax.

As for Dear Son, he's been having a hard time these past few days. He had another big seizure on Wednesday and couldn't go to school. Ped Neuro Doc increased one of his meds however it may take a bit for us to see the effect. Dear Son continues to have seizures, along with some severe choking episodes at night. I haven't slept much in the last two days and neither has he. Typically, I see more choking episodes as the seizures increase. Last night was a bit better than the night before and I am hoping we get some sleep tonight. He continues to be agitated and restless at times, which I suspect are also seizure related.

Have a wonderful holiday.

Organization Friday-Putting Things Away, The Stumbling Block

Fringe Lace Glass Plate

Recently, while watching the reality show “Kendra” on E!, Kendra stands in her the living room of her house with clothes all over the living room floor. Lots of them. She wants to get the place cleaned up before her fiancé comes over. She looks at the clothes and she says that she wants to get the place cleaned up so he really doesn’t see the real “her”. And that’s when it gets interesting. She has this look on her face that I have seen many times before. It’s a look of total frustration and total honesty. She really does want to get the place cleaned up but she has absolutely no clue on how to get there. It’s probably one of the most honest moments in the show and one I see a lot.

More often than not, most of the people I work with have no clue how to get there. They know what they want: a clean and organized space. We look at the magazines and they are filled with beautiful pictures of beautiful spaces. They make it look so easy. And then they say things like, “A place for everything and everything in it’s place.” But the truth of the matter, it’s not always easy if you don’t know what you are doing. Add to that, all of the messages that you have programmed in over the years from your mother, your family and whoever, it’s no wonder people get depressed when they think about getting organized.

Kendra’s situation is not unlike many of the people I work with. It doesn’t matter if it’s clothes or paper and more often than not, most of my projects start with the home office. But at some point, regardless of whatever project we start, we get the space organized and at that time, I put a routine in place for the client. A routine is a series of steps that is the absolute shortest way to get from point A to point B. We all want everything fast and easy today but it’s surprising how many people get caught up in one simple step: putting things away. So often, many women are so used to not knowing where to put anything that once they have a spot, they don’t follow through with the last step of putting items away. It is the single obstacle that must be overcome or you will always be spending more time and energy trying to keep up your home. If you are not in the habit and don’t make it a priority, you will never maintain your space. Any space.

Probably the one time of day where I see a lot of homes drop the ball, is the after work or after school routine. During those times, everyone is tired and most things are just dropped right inside the door, the nearest counter or the nearest flat surface. On top of that, add the mail and all of those papers from school, all of the electronic devices and you have one big mess. Once that is done, everyone is hungry, dinner is started or picked up on the way home, and another mess is underway.

But it doesn’t have to be that way. With a few simple changes, you can keep your space organized and beautiful. And here’s how. I’ll talk about my own routine to illustrate the concept.

The first step once you get in the door is to put your keys away. I place mine in a pretty wrought iron, nature inspired dish. You can use a dish, like the one in the photo, a plate or simply a gorgeous hook. Whatever it is, make it both functional and beautiful. By making it beautiful, you are more often to use it and keep it nice. Now you know where your keys are for tomorrow. If you have multiple drivers, create a space near the door for each person. I might suggest a chest of drawers near the entry giving each person their special place in a drawer for keys and such or something on the wall that can handle multiple sets of keys.

Hang up your coat and remove your shoes. I have a series of hooks near the door to hang our coats however notice I didn’t say hang “all” of your coats. Just the coat you wear. I place gloves in the foyer closet near the door so they don’t sit out. Ditto for shoes.

As you create your space near the door, I would like you to think of this as a bit of a sanctuary. When you come home, it’s the first thing you see. Keep it uncluttered and beautiful. You don’t need to see every coat and every pair of shoes the family has. This is especially important if you want to feel peace and serenity when you walk through the door.

Next, remove your electronic devices and charge them. You should have a special place to charge them, preferably near your keys however if there isn’t room for a charging station, select another spot. Just make it consistent.

Unpack your bags. If you carry a bag of sorts, empty everything in your bag and put it away. I carry a bag with my business supplies and a client notebook. I put the notebook in the office and file the bag. At this time, I stock the bag with anything that is needed so I can get out the door easily the next time. If I worked that day, I take a moment to record any income and expenses for that day, add items to my supply list and add any clients tasks to my weekly planner (to do list).

If you have groceries, put all of the groceries away. Do this before you do anything else.

Next, check for phone messages. I keep a spiral notebook for all phone messages near the phone. It doesn’t have to be formal, just pick one spot. I try to return my calls right away or if it’s late, the next morning. I delete the message immediately. You can also check your voice mail on-line. If you do, then make the call or add it to your to do list, whatever that might be.

For mail, I open it all and toss out the envelopes and extras. Bills are place in the bill notebook in the file drawer. Invitations are noted on the calendar and rsvp noted on the to-do list as well as dates to get gifts/cards, etc. I file the invitation in my HOME manual (Home Organization Manual for Efficiency-this is a Dream Organizer product/concept.). (When the time comes, I just pull the invitation.) If there are action items, I put them in my in box and try to manage them that evening or early the next morning. I try to keep my desk free of any paper.

Once Dear Son arrives, I unpack his wheelchair-his lunch pack, his backpack and his clothes. I re-pack his backpack and lunch pack for the next morning. This takes all of five minutes. He is now ready for the next day. I sign any papers and put them in his backpack for the next day. Since he needs a feeding pump that is sent to school, and since I need to use it that evening and the next morning, I place a reminder sheet that I have in plastic on the seat of his wheelchair as a visual reminder to place it in his backpack.

And that’s it. The key here is putting things away before starting another project or before starting dinner. You can’t expect to keep your home clean and organized if you never put things away. And you also may not be able to find things when you need it. I thought of a silly analogy to drive the point home. Imagine for a moment that instead of parking your car in the garage every evening, where it belongs, that you parked it in any one of a dozen spots near your home instead. Say, one day, you had a meeting at school so your parked it there. Another day, you watched a soccer game so you parked it at the field. If I told you to do that, you would tell me I am absolutely insane. You would tell me that it doesn’t make any sense. You would argue that the best place to park would be your garage where it would be every morning making it easy for your to leave home. You would tell me that you waste a lot of time every morning trying to remember where you left your car or that it took too much time to get there.

And that is why you need to make it a habit to put things away. It’s the shortest and fastest way to find anything you need the next day. So the next time you are tempted to leave your stuff out, just remember the garage analogy. If nothing else, you’ll get a laugh.

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

...The "Organization Friday" feature is back by popular request!

Aspiring to Give Great Care, Taking Parenting to the Next Level

"It is not how much we give, but how much love we put into giving." ~Mother Teresa

I remember the Individual Education Plans (IEPs) at school. Once a year, I would receive the invitation to attend and every year I would attend. The IEPs is where the education planning for a special needs child would take place. During that time, the goals would be discussed and whatever accommodations that were required, would be included so the education plan could be carried out. It was a bit intimidating at first. I would walk into the room, with twelve other people. The principal would often attend at those times, plus the Special Education Administrator for the district, all of the therapists-physical, occupational and speech, along with his teachers. It was intimidating because I wasn’t certain of this process and how it worked and I wanted to make sure I did my best. I didn’t have any training in these IEPs but I knew they were important. It was also challenging because whatever accommodations needed to be made, often cost money, something that any school district, never had enough of. For example, when your child required a one on one aide to assist them in the classroom, well, that cost money. My job was to secure the aide, their job was to conserve their dollars. I needed to attend these meetings, be present, and be fully prepared to state my case, so that I could negotiate the absolute best education for Dear Son. The key word here is “negotiate” because that is what you had to do.

It was difficult for me in those early days, having to learn the whole IEP system and to negotiate for Dear Son. I would make sure on the day of the IEP, that I was impeccably groomed, my hair and nails were perfect and that I always wore a suit. This was the early nineties and that is what professional women did. I wore a suit to these IEPs not because I had to, but because I wanted to send a message that I expected the best for Dear Son and I would take nothing less. The other thing that made it easier for me, was not to view myself at Dear Son’s mother, who was negotiating his education, but to view Dear Son as my “client”. When I was at work and working with clients, I always wanted to give my best to them. And who should I advocate more for, than Dear Son? Once I viewed Dear Son as my “client” it was a lot easier for me to go into these meetings and negotiate his education since it took a little of the emotion out of the equation and made it easier for me to be firm with them on what I wanted. And they did take me seriously.

I remember taking the time weeks before the IEP, to create some good goals for Dear Son and then created a list of what I wanted for him that year. His physical and mental disabilities were so profound that he required a one on one aide. For that, I would get a letter from his physician detailing his need for the aide. Some years, I would sit at the table in the meeting for a long time, because I would refuse to budge on an issue for Dear Son. In order for an IEP to work, everyone in the room had to come to an agreement. Meaning the district would agree to pay for the services before they would put it in writing. And with the plethora of special needs children and a limited number of dollars, their goals were to conserve dollars whenever they could. My goal, as Dear Son’s mother, was to negotiate the absolute best education that I could for him, to give him the best chance at maximizing potential. They learned that we could work out an agreement ahead of time, or we’d be sitting at that table, a very long while.

It wasn’t long before the district coordinator would contact me a few weeks prior to our IEP. At that time, she would ask me for my goals and what I was looking for in terms of Dear Son’s education. I would know in my head what I wanted for Dear Son so I would ask for the moon, knowing that I would negotiate from there, giving up some things and then ultimately sealing the deal with precisely what I felt was best for Dear Son. Some years, I had to hire an attorney to get some input on the law to back up my case.These meetings/calls were tense at first but over the years, we became good friends. She knew that I wanted the best for Dear Son and I knew that her job was to conserve dollars. To negotiate the best for him, meant understanding the state laws, understanding the IEP process and knowing what could and could not be done.

But the IEP was just one example of giving my best to Dear Son. I made it my goal a long time ago, to give him the best care that I possibly could. That means, negotiating for the best education, getting him the best medical care and most important giving him my best every day.

Every time, he is released from the hospital, I am grateful. I view the fact that he recovered and that I have more days to spend with him as a gift. Each time, I know we are closer to the end. And because of that, every day is precious. I am so thankful that I get the opportunity to care for him. I try to show that in my actions. Not just giving him his meds on time or changing all of his diapers, but in my attitude. It’s starting every day with a smile and kisses. It’s being excited to see him. It’s taking the time to write up the instructions for summer school so that everyone has what they need and that Dear Son gets his feeding on time. It’s making the extra calls so that he receives the air conditioned bus since he can’t sweat and can overheat easily. It’s taking the time every day after school to read the note together about what happened that day and talking to him about it. It’s constantly raising the bar for myself and for others so that he has the best care that he can and the best life. It’s what I would want for my most cherished possession, my Dear Son.

And that brings me to how we spend our time. I was thinking today that as a nation, we don’t put enough time into our children. I mean, how often do we google things on the internet like, how to improve our diets, how to improve our health, how to save money or how to do just about anything. Or when we look at continuing education…how often are we taking classes to stay competitive in our field? But where are the classes on how to be a good mother or father or how to be a better parent? Who googles that when the kids are ten years old?

And how many of us can define our neighbors by their hobbies? We know the neighbor that is passionate about their yard or their flowers or the man is always washing and detailing his car and parks it at an angle in their own garage, as if it were a showroom. But which one is the neighbor that gives their children the best “care” every day or who puts their children first? You have to think hard about that one.

We see parenting examples all the time, not all of them good. We have the whole Jon and Kate Plus Eight saga of a family in crisis and yet, the show, I mean money, must go on. Talk about selling out for your children. I don’t think airing the family’s crisis and dirty laundry for millions to watch is giving the best to your children. I never thought Kate was the best parent and her total lack of disrespect for her husband, for all of the children to see, along with her controlling ways, is a train wreck. Certainly Jon plays a part in this but the mental abuse of Jon is over the top. I stopped watching that show many years ago. I can’t figure out for a minute why this woman isn’t in therapy. The children never seem happy and are always crying and yet she goes out on speaking tours. Is this something we want any parent to emulate?

And then we have the Duggar family with eighteen children. You have wonderful parents, with great values who live their religion and who give their time to them. You see that difference and yet, those people are wonderful parents and yet, the Jon and Kate, gets more press.

I often see parents of children spend a lot of time saving for college or working on getting material things for their children, yet are too busy texting on their blackberry to be fully present in the moment with their kids at the park. Dear Son and I walk a lot and I can’t tell you the number of times the parent is on the phone while out with the kids on a walk.

Giving great care to our children, and especially special needs children, is a goal we need to aspire to. And great care means not only what we can provide, but how we interact with them and giving our time to them. It’s making them our first priority and not our last.

I remember teaching a class on organizing for special needs children last year. I was talking to one of the parents and she had an issue at school with her daughter not wanting to eat for the staff and the staff not understanding how to feed her. As a result, the child didn’t eat all day and then consume a ton of calories when she got home at 3:30 p.m. I talked to the mother on how that wasn’t o.k. and that no child should go to school and not eat all day. We wouldn’t do it and we shouldn’t allow it to happen for our kids. Instead, I talked to her and gave her some suggestions on how she could include certain things in the IEP so that her daughter could get help with the feeding and then going to school to make sure that the staff understood how to feed her daughter and that it was getting done. It was difficult for this mother to speak up so that factored in to the issue as well. These things are the important things in life.

Caring for special needs children is time consuming, monotonous and very often boring. There are days when I used to think if I have to change another diaper, I was going to scream. But what changed all of that was Dear Son’s hospitalizations. Each time he pulled through, I would be thankful for my “gift”. I would treat every day thereafter as something special, another day that I got to spend my Dear Son. Every day became an opportunity to get in some more memories, to see him grow or to see him smile. I learned to change those diapers happily for changing them was always better than not having one to change.

But where is the reward in good care? Where is the reward in making your children’s life better? I was changing Dear Son’s fourth diaper yesterday in just over two hours. He managed to have his bowel movements separate from his urinations making for a lot of work. Changing a diaper for a 185 pound man who can’t roll over on his own, is a lot more work than for a one year old child. I changed diaper after diaper, among other things. It seemed like the morning would never end and yet it was only 8:30 a.m. As I finished the fourth diaper, Dear Son moved his left elbow up in the air slightly. Dear Son has never had any control of his arms and hands his whole life. Just this last year, through a lot of hard work by his teacher, he has gained some control of them. Each day, I check his left arm, if it’s loose and not tense, I know he can give me a hug. I wrap it around my neck and I give Dear Son a hug back and kiss his neck repeatedly. He smiles the whole time and has a sparkle in his eye. So when he raised his arm up, I took it and tried to wrap it around my neck for a hug, but it was too tight and he couldn’t do it. Instead, I wrapped my arms around him to kiss his neck. When I leaned over he gave me a big lick on my cheek, which is how he gives a kiss. I thought to myself that this is the reward for great care. A giant lick. And that is something to aspire to.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation. You can read more about Dear Son and his mutation in the Journal of Neurology. The link is in my sidebar.

Photo Credits: The above photo is of my living room.

---

FYI-The other day I had a problem posting in blogger because I could not copy from Microsoft Word and paste into blogger. The problem was due to my recent upgrade to Internet Explorer 8; I uninstalled IE8 last night and I no longer have the issue. I am still having an issue getting my feeds to update. If anyone has a solution for that, I'd love to hear it.