Best Toys and Gifts for Special Needs Children

I remember it very distinctly. I was standing in the Toys R Us store trying to find “one” toy that I could buy Dear Son for Christmas. It wasn’t that I couldn’t afford more than one toy, it was rather that with his disabilities, there weren’t any toys that he could do himself, that we didn’t already have. I walked around for quite some time, when I got stuck in one of the aisles behind two young boys fighting over all their toys. They had an entire cart full of toys and were begging for more. Somehow, at that moment, life didn’t seem too fair. I just needed one toy, that didn’t require the use of your hands, your fingers, that didn’t require you to be able to sit, to be able to roll over or to use your voice. I needed something that didn’t flash or vibrate (since he had seizures and these could bring them on). I wanted to surprise him, to make him smile. I was, after all, Santa.Many of the toys I saw, didn’t work for one reason or another, or I had already purchased them. Most of my family, preferred to give me money, so I could select the toys. Typically, this would mean a two hour shopping trip, only to come home with a few five dollar toys, but nothing exciting or of any consequence. I should also explain that some of the challenges parents of special needs children face, is finding toys that match their “developmental” age especially when their “chronological” age is much larger. I decided to put together a list of Dear Son’s favorite toys over the years, in hopes that I might be able to assist other parents of children with severe disabilities, in finding toys for Christmas. I will also show you a picture when I can and tell you what types of things you should look for or what made this particular toy a favorite.To give you a little history, Dear Son is severely developmentally delayed (retarded), has no use of his hands or arms, is non-verbal, can not walk, can not talk, can not feed himself and is totally dependent on someone. For many years, Dear Son could not roll over. As time passed, he was able to walk on his knees and roll over. Today, he can do neither.

Wooden Rocking Chair- We purchased a wood rocker at a furniture store many years ago. We happened to find this rocker while we were looking to purchase some dining room chairs. Dear Son was getting fussy in his wheelchair so I put him in this child's maple rocker while we purchased our chairs. The rocking chair worked so well, we purchased it for Dear Son. What was great about this rocker was that it had a tall back, which supported his trunk and the back of his head. This rocker was made of maple, but was still light enough for him to scoot around the house on the carpet with it. He took his feet and scooted side to side to move it and then loved to lean forward and look out the window. I liked it because he could get around the house easily and independently. It was much better than sitting in a wheelchair all day or lying on the floor. We’d take this rocker to family outings or simply when we went somewhere, like to see fireworks on the fourth of July. It’s the only seat he was able to stay in. A regular chair didn’t work because he would fall off the chair and because he couldn’t move the chair around the room. Many physical therapists have never heard of a child using a rocker to get around in like this, but once they saw him, they agreed it worked. From a therapeutic standpoint, the rocker also helped his balance. He still uses a rocker today, only he can’t get around in it like he once did and it’s now much larger. I found some child rockers at this website. I like the one pictured here because it has a higher back. I understand that Cracker Barrel has some nice rocking chairs and I have noticed some of the best ones (and best price too) at a large antiques market in our area.When selecting a rocker, it’s important that the rocker isn’t too tall, that the child’s foot can rest flat on the floor so he/she can maneuver the chair around the room. Finally, stay away from the combination wood and wicker rockers since they are often too heavy for the kids to maneuver. The all wooden ones work best. Dear Son had one from a furniture store that was done in a maple wood with a clear finish that we loved. If your child has the use of his hands, select one that has horizontal slats on the back, uniform in nature, so they can grip the slats and pull themselves into a standing position. If they are severely disabled, this won’t matter and vertical slats would work just as well. Dear Son has enjoyed a rocker from ages three on up.Microsoft

Acti-Mates Barney-This is the original talking Barney that Microsoft made and then discontinued in 2000. Copies are still available on eBay.Why it works? Because Dear Son was non-verbal, this toy became his best friend. It could talk when he couldn’t. If you pressed Barney’s hands, he would sing and if you pressed his feet, he would talk. It didn’t require a lot of pressure to activate him. The reason it worked for Dear Son was that he could use his mouth and bite on Barney’s hands to get them to work. If Dear Son was sitting, he would take his left foot and step on Barney’s feet and he would talk. This toy was worth every penny. We have had about six of these in his life. There are so many severely disabled children who love this particular Barney, that it’s truly amazing. None of the newer type Barney’s work as well as this one. If you wanted to select a similar toy, look for a talking toy that does not require your hands or arms to operate and that could be activated by a foot, a child biting on it or by light pressure. Some of the talking toys that I have seen, require you to press on the chest of the toy or to press a disc in the hand. This is not something that a severely disabled child could do.

Bedtime Barney-This particular Barney has a star on his chest and is actually called a Bedtime Barney. When you press on the star, Barney sings several bedtime songs that help Dear Son fall asleep. Each song gets softer and softer and has lots of yawns in between. The lights get dimmer and dimmer until they fall asleep. What’s great about this Barney is that the star on Barney’s chest is large enough and made of a hard plastic so Dear Son could take his head or his chin and press on Barney’s chest to get it to work. He loves to sleep with Barney in his arms. The blue stocking cap night cap that Barney wears is very soft and Dear Son likes the feel of it against his skin. You don’t even have to be disabled for this one, since many kids love it. I have seen this Barney available in most toy stores and the retail section of Target and other discount stores however I had trouble locating it on a website.

Ball Pit-Dear Son loved a ball pit. He loved to lie in the ball pit and would often fall asleep in there. They are pretty safe and you can wash the plastic balls in the dishwasher to sanitize them. What to look for: You want one that is open on top (unless you want to chase the balls all over your family room when they kick them out) and one with a large enough door that is zippered so you can lift the child into the ball pit. I would try to stick with one around four feet by four feet so it doesn’t overwhelm your family room. I have seen some of these used outdoors however I would only recommend them for indoor use since things could crawl into it if it were outdoors.

Cat-You may wonder why a cat would make a good pet versus a dog or another animal. The reason I like a cat for Dear Son is that it is easier to take care of-as a single mother, I can't leave Dear Son unattended while I take the dog for a walk. He enjoys the cat because the cat is playful and gets into things. Dear Son can't get into things so he enjoys watching the cat do this or watching the cat "get in trouble" doing something he shouldn't. The cat provides a lot of enjoyment for Dear Son. Currently, our cat will stand on the edge of the edge of the bed and meow when he wants Dear Son to pet him. I'll bring the cat over to Dear Son, take Dear Son's hand while holding the cat with the other one, and then pet the cat. Dear Son really likes it. It's important to note that you want a cat that is playful, a lap cat and one that is good with children. We have a Munchkin cat (breed) and that is perfect for him. They are smart, great with kids and a lap cat.

Pop-up Tent-Any pop-up tent will do providing the size is right for your child. Dear Son would lie on his back in the tent, and then take his legs and kick the ceiling of the tent, practically knocking it over. It was great exercise for his abdominals and a great way to get rid of extra energy. If your child is Special Needs, see if you can get a child’s sleeping bag to put on the bottom of the tent to make it softer for them to lie on (it also helps to have it there in case they have an accident i.e. diaper leakage). You can find these at most toy stores. For an older child, GapKids makes one every spring and they also sell a child’s sleeping bag to match. I tried to find some examples of this type of tent and I see that they have a lot of them out there. There are three things you want to look for: 1) the tent should have a bottom (many of the ones I viewed did not) 2) it should be a pop-up type with no assembly required and 3) it should have a fabric door that closes off the front. While I left the fabric door open most of the time, Dear Son loved that it would fall half way closed. As an added bonus, he nearly always took a nap in his tent. It remains one of his favorite toys to this day and he still takes a nap in it.

Radio Flyer Wagon-My son loved this wagon. It was perfect for walks. What made this toy perfect was the tall sides and back of the wagon. The tall back allowed extra support for his back when sitting in the wagon. We had a wood one however the newer ones are plastic but should work just as well. Train-The best train we ever got was one from Walgreen’s. It was a battery operated small train that had a 36 inch round track that fit on the coffee table in the family room. Dear Son loved to sit on the floor and lean against the coffee table to watch and listen to the train. He loved it even more when he could take his arm and de-rail the train. This might take twenty tries and an awfully long time but he could do it. And when he did, he would laugh some big belly laughs. This toy was great from a therapeutic standpoint to encourage use of his arms. I purchased more expensive trains from Lionel but they didn’t work as well since the track was too sensitive. A tunnel is a great idea too if you can find one for the train. What to look for: Look for a train with a small track, unless you have a lot of room. I like the battery operated ones best. Make sure you can access the batteries easily. Most of these cheaper trains work best however access to the batteries are difficult due to the small screws used.

Mr. Christmas Musical Carousels-Mr. Christmas makes a great line of musical carousels. What is great about Mr. Christmas items is that they have a lot of songs, both Christmas and non-Christmas on the carousels and they have a volume control. The volume control is a big deal since many of the cheaper carousels you buy don’t have a volume control and they volume is too loud. Also, the quality of the music is great on them. When you listen to a cheaper carousel, the music quality is scratchy. Dear Son loved to listen and watch the carousel. He especially loved one with horses. I have tried other musical toys/carousels but the Mr. Christmas ones are the absolute best. Do not bother with any other brand. This year, I purchased the Mr. Christmas Symphony Surprise-Santa's Workshop. Four windows open in the house to reveal musical animated Gingerbread musicians. It plays fifty songs in four part harmony, 25 Christmas and 25 non-Christmas favorites and includes a real clock. The web site will give available stores however I was able to find this one at our local Meijer store even though the web site only gave the Grand Rapids Michigan Meijer store as one of the available locations.

Swing-An outdoor swing is essential for them. What you want is a swing with a tall back to support them. You can find them for several hundred dollars in a therapy catalog however I suspect you can now find them in a toy store or on-line much cheaper. Every child loves the tall back, not just children with disabilities. You can often see examples of this type of swing in many parks across the country. They are most often in red, have a high back and nearly every child and adult will use them, disabled or not.

Television near their bed.-One of the most surprising things that Dear Son loved was a television he had in one of the rehabilitation hospitals he frequented. This particular hospital had a small t.v. right next to his bed. He loved it. A television across the room was of less interest to him. The small size is important too-I am guessing this one was around a 13 inch screen which is just about right.

Videos- His absolute favorite movie was, “A Very Goofy Christmas”. He would laugh big belly laughs over this one movie.

Silly Six Pins-This is a bowling game where the bowling pins talk. We never used the bowling ball but instead set up the pins on our kitchen table on a placemat. I would pull Dear Son up to the table in his wheelchair, with only his lap strap fastened, and he would lean forward and use his head to knock the pins down. The bowling pins would talk to him to help encourage this action. This activity helped strengthen his trunk control and he loved it. As a reminder, the age of destruction preceeds the age of construction so developmentally, things that crash will always be a better choice than things for them to build.

IPOD-My son loves to listen to music so any of the IPODs would be an excellent choice. You do have to be careful that you watch the volume control since they can’t turn the volume up or down themselves.

Musical Mat- This is a musical mat that is about two feet wide and two feet tall that lies on the floor. When you press on the mat, it plays music. This is a great toy for an infant or toddler who is having difficulty in learning to roll over. You can practice helping them roll over and when they roll, they will be rewarded with music. Dear Son enjoyed this toy.

Musical toothbrush-Disney and several other manufacturers make a musical toothbrush that is great. I never used them for brushing teeth though. I used it to occupy Dear Son when he was getting a lab test or a shot. The song usually lasts three to five minutes or so, just long enough to keep his attention on the music and by the time the song is done, they have completed the shot without any crying. For Dear Son, he loved music and attended to things he heard vs. things he saw. The small size of the toothbrush made it great for taking along, as opposed to the size of a regular musical toy. These can also be used for tooth brushing however I tended to prefer the Oral B types for that.

Stocking Stuffers- Some great stocking stuffers include:

-Slinky-because it doesn’t take much hand control to get it to roll over.
-Bubble bath.
-Bath paints-you can squirt it on the child and write his name or “I love you” on his chest when you give them a bath. The color makes it fun.
-Other fun gifts ideas include movie gift cards, museum gift cards or in our state, we have a wonderful Arboretum with some fantastic trails. A membership card is a great gift.
-Babysitting coupons so the parents can go out to dinner is always appreciated. So often with Special Needs children, none of the family wants to babysit since they are afraid or it’s too much work. While that may be true, there is often a time when the child is sleeping, that the parents can go out for a quick dinner.

And the best gift of all-a note from Santa! When my son didn’t hit any milestones his first year, I was devasted. I had nothing to write in his baby book. I decided to write him a letter from Santa every year and include in it, the two or three things that he did accomplish. Santa would tell Dear Son how proud he was that he was able to work so hard and accomplish these things. The letter would be written on construction paper, in crayon and end the same way, “All my love, Santa”. I would roll up the letter and put it in his stocking. He loved to sit on my lap while I would read the letter.

These are my absolute best toy/gift ideas for Special Needs Children.

12/20/10-Recently, I compiled a list of toys/gifts for special needs children. Click here to see them. I will also tell you why I think a particular toy is good for these kids as well as tell you how the child will play with it and/or what to look for in a particular toy. I have included links to Amazon so you can order it and have it delivered to save you time from having to go out. I will be adding additional items throughout the year, that I think would work for these kids. Please be sure to save this link for all future gifts (both birthday, Christmas and otherwise).
*I originally published this on 12/4/06 however due to the high number of google requests for gifts for special needs children, I am reprinting it.

Update, Nestle Compleat and Kangaroo ePump Reviews

I wanted to apologize for the delay in posting. I'll be writing a new post this weekend on Dear Son's recent 17th birthday. I haven't had a lot of time lately and I appreciate all of the visits to my site to check for new posts.

Things are getting more challenging in terms of caring for Dear Son. Not only does he continue to grow but as he gets more complex, the daily tasks seem to be taking their toll on me. None of the tasks by themselves are that difficult, but being on 24/7 can be tough without much sleep. He seems to be getting taller and heavier every day. While his waist/pant size has remained the same for the last year, his shoulders are getting much broader and he is outgrowing all of his shirts. I am buying him XL shirts and and they are no longer enormous but look to be about the right size. (Gasp!) The added size is exhausting me in terms of caring for him. On the weekends, when he is not in school, it takes a lot of energy just to care for him whether it's transitioning him from the rocker to the glider chair, changing his diaper or simply rolling him over and lifting his hips. I do love caring for him though and he is and will always be the best part of my day and the best part of my life. I am enormously blessed to be his mother.

The feeding pump issues I experienced with the new Kangaroo ePump have been resolved. A few weeks ago, Dear Son got the new pump and the pump was failing to pull the formula down the tubing. The problem was twofold. Dear Son's new formula, Nestle Compleat, which I absolutely love, is made from real food and is much thicker than his prior formula, Pedia Sure Enteral with fiber. As a result, the ePump could not pull the formula down the tubing after the initial use of the feeding bag. I solved this issue by putting 60 cc of water in the bag and starting the pump. The pump was able to pull the water through the tubing easier and once I got the pump running, I could add the formula.

The second problem with the ePump had to do with the feeding bags. There is a piece on the bags that should rotate so the bag snaps into place allowing the mechanism to rotate thereby pulling the formula through the bag. Once the bag is refrigerated (You are allotted one bag per day and you refrigerate the bag between meals.), the piece on the bag gets stuck and will not rotate. Since it won't rotate, it fails to lock into place and no formula gets pulled through the bag. Dear Son's Dad resolved that issue with a screwdriver. You can manually turn the piece to line it up and then when you place it into the ePump, it falls into place and the mechanism will rotate freely. So while it is a pain to pull out the screwdriver at every meal to resolve this, it does work.

Ironically, the home health vendor was not able to resolve the problems and I got a replacement pump before we were able to resolve the issues on our own. Secondly, I sent an e-mail to Kangaroo and they were not helpful. Their only suggestion was not removing the bag from the ePump. I explained that was not an option since 1) bacteria could grow if the bag is left out all day and 2) the bag needed to be removed so I could send the pump to school. I also stated that they needed to re-visit the ePump since it should be able to pull the formula down through the bag and that the bag should not have these issues. Kangaroo never bothered to respond. Parents should not have this much difficulty in light of the other issues we experience.

Some weeks later, our home health vendor had a delay in shipping the Nestle Compleat and I had to use to old formula, PediaSure. It was extremely thin and ran down through the bag. I guess since the Nestle Compleat is much thicker and made from real food, it presents a larger challenge. I can't imagine children would feel full on a formula that is as thin as water either.

Regarding the Nestle Compleat formula, I can't say enough good things about it. Dear Son changed formula a few weeks back. I began working with a new GI nutritionist as a major children's hospital. Dear Son needed to transition to an adult formula and I asked if there was a "natural" formula. She recommened Nestle Compleat, a blenderized formula made from "real food". It contains carrots, chicken, tomatos, peas and cranberry juice along with BeneFiber. This formula is much thicker than his previous formula, smells great and he seems to be more satisfied and not as hungry as the previous formula. In addition, it seems much easier on his system. Dear Son has motility issues related to his gene mutation and the Nestle Compleat has drastically improved his bowel movements. Previously, he might go three or four days without a bowel movement and then have a few on one day. This is not uncommon from what I have learned from other special needs children. With the Nestle Compleat formula, Dear Son has one bowel movement every day and sometimes two. If he has two then he may skip a day but he is much more regular. Although I have not been able to reduce or eliminate his Miralax (he gets one tbsp. per day), this seems much better. I should also mention that this formula has more protein in it and that meets his needs better.

The only downside to the Nestle Complet is the size of the cans. Previously, his other formula came in 8 oz. cans. This formula, comes in 8.25 oz cans which is a little more work for me. Before, I gave Dear Son two cans at each meal. With the new size, I give 1.5 cans for breakfast, 2 cans for lunch, 2 cans less 60 cc for dinner and then the final 60 cc at midnight. This is a bit of a pain on top of giving 12 meds four times a day, tracking bowel movements, taking care of Dear Son and running a business.

The new ePump, despite it's faults above, has given me one major benefit. I can set up the empty bag in the ePump at midnight so it's ready to go in the morning. I have to start the feeding at 4:15 a.m. so it's done by 6:30 a.m. so he can get ready for school. Having the bag set up allows me to hit just a few buttons in the morning and then I can get back to bed. This is important since I give his last meds at midnight and I am often up a few times in between. Also, the fact that he is getting less formula for breakfast (he gets water in addition to the formula at each meal) means that I can get up at 4:15 a.m. to get the ePump started versus 3:30 a.m. with the PediaSure. Honestly, I could never get up at 3:30 a.m. and was always behind the eight ball in the morning getting the formula ready. Now, I can honestly say that I am up for 4:15 a.m. feeds almost 100% of the time.

In terms of Dear Son, he seems to be having more seizures again. Not only that, but he is choking a lot more at night on his saliva, despite wearing the Scopalamine patch (it reduces choking since it dries up his secretions). I am very concerned about this because I am worried he will choke on his secretions and it also raises the possibility that we may need to revisit surgical removal of his saliva glands. In the interim, I have contacted the neurologist and I'll get some blood levels tomorrow for Dear Son and we will go from there.

Physically, he continues to decline, at least in terms of sitting. He can not support himself and falls repeatedly to the right side. I got him a new living room chair for his birthday and while that supports him better, he looked terrible in the pictures I took of him since he can not sit up straight. I was so excited about the pictures and then disappointed when I saw them. He can't take a nice picture when he slouches in the chair.

On the plus side, he is working extremely hard at school attempting to use his hands and arms. His teacher has done a wonderful job of incorporating fun tasks that require him to use his hands throughout the day. I went to school recently to learn how he has been doing some of these tasks. It was quite amazing. He is now able to move his fingers slightly to water the plants. His teacher has a special water bottle that she places in his hands. His hand goes on the top, one of hers goes on the bottom and her other hand goes under his elbow. When she feels the movement of his tendons, she squeezes the bottom of the water bottle so he gets the "reward" component for moving his fingers ever so slightly. Dear Son is so proud of this. And I am proud of him.

In terms of myself, I have been busy caring for Dear Son and been more exhausted than normal from a lack of sleep. I have also been busy painting my living room, foyer and dining room. Although I live in an apartment, I decided I needed to repaint the walls to freshen them up. I sanded them lightly, washed them all, applied painter's tape and then painted them all. Once that was done, I decided to paint over the green accent wall in the dining room. I painted it the same color as the rest of the room and I really don't like it. It looks very boring and dull now. Althought I not normally a fan of accent walls, it allowed me to have some color in an apartment without having to paint all of the walls back to a neutral color when I move. I will probably choose a new color in January and re-paint again.

I also hope to show you a new project that I completed recently. I had a new client with a beautiful new home that wanted to spruce it up a bit. So in this case, instead of staging to sell her house, I staged it to live. She allotted a budget for some new furniture however I was able to transform a few rooms using existing furniture. Her living room went from empty to "amazing". You won't believe the transformation! I have some before photos showing the placement of the furniture and accessories in the other rooms and then you'll see the after photos using her existing stuff. In four hours, I'll show you how some small changes made for some exciting results.

I'll try to post a story this weekend. In addition, I have been asked to complete an blogger interview. I'll share that with you once it's complete.

As always, thank you for your interest in Dear Son. I appreciate your interest and always enjoy reading the wonderful comments.

P.S. Reuters picked up one of our blog postings recently. Yay!

Dance Like No One is Watching…When a Disabled Teenager Comes of Age

The school van drove up into our driveway. Inside the van was Dear Son, his classmate Jen, his medical assistant and his teacher. They had stopped by to take pictures of each child in front of their home for a school project. I happened to see them and came out to the van.

Dear Son was sitting inside the van, slumped over in his wheelchair, in the far back of the van, near the rear window; his classmate sat in front of him. Jen was his favorite classmate for some time now, as they have attended school together for several years. A few years back, they rode the school bus together and used to flirt all the way home. Although Dear Son had no language, they would make faces at each other and laugh. His classmate, a darling young lady, has difficulty walking but can talk and walk, although pigeon toed.

On this particular day, sitting in the van, I saw Dear Son differently, not as my own Dear Son but as a disabled teenage man. Perhaps it was the image of the two of them inside, as opposed to a lot of other children on the bus. Nonetheless, it was different. Over the years, I made a point of never photographing Dear Son in his wheelchair, because I wanted people to see the person first and not his disability. Once he turned thirteen and got much larger, I had fewer options and will now take pictures of him in his wheelchair. Sitting in the van in the wheelchair, he looked disabled, an image that was almost startling to me. They opened the door, lowered the ramp and pushed Dear Son out of the van. They asked if they could take a picture of us, since I was standing there. I obliged. I asked if they wanted to come in however they had other pictures to take and were soon on their way.

So it was unusual when I received the e-mail from Dear Son’s teacher. The e-mail contained the photo of Dear Son and I, and along with it, a note from his teacher saying that Dear Son was having a great week in school and that they were working on dancing. The assignment was that the students had to ask one of their teachers to dance (they have a teacher and several aides in the classroom) and then the teachers would dance with them. She said that Dear Son was “always reluctant” to ask anyone (via his communication switch) however they continued to prompt him until he finally did it. Once they said yes, he enjoyed himself. She said they grabbed his hands and moved to the music.

The e-mail bothered me quite a bit. It was not like Dear Son to be reluctant to do anything in social situations. He is quite the extrovert, unlike both his mother and his father. I worried that perhaps Dear Son’s reluctance was because he felt bad about being disabled. Dear Son can be a bit unusual sometimes, in social situations. Many years ago, I took him to a restaurant for dinner and he refused to eat because he didn’t want anyone to see him being fed. He did the same thing at the park a few years back, when I bought him some ice cream. He refused to eat it in front of kids his age but gobbled it right down in the privacy of the back seat of our car, when we were out of view from the other kids.

When he went to bed last night, I had a conversation with him about dancing. I told him any girl would be lucky to dance with him. I said that I had a little secret to share with him. I said the girls are worried about not being picked to dance and boys worry about the girls saying no. I said any girl would be excited to be asked to dance with a handsome man and that they wouldn’t turn him down. I wasn’t sure if he believed me, but I tried to get him to feel better. This year at school, they are working hard with the kids and doing more “adult” things in the classroom, things that their peers would be doing. Dancing is one of them.

I spoke with his teacher this morning about my concerns. She had contacted me regarding an issue with our new feeding pump. She stated that she thought Dear Son felt bad that he was disabled; she reasoned that he felt the teachers would have expectations that he would dance on his feet and twirl them around and he couldn’t do any of that.

The fact of the matter is that Dear Son has been unable to weight bear for four years now. His torso falls to the side in his large wheelchair. His arms/hands have little or no functional movement. His large fingers look swollen more often than not and all of his fingers are double jointed. If you are not careful, you almost feel as if you could dislocate or break them right off. They have no tone. To make matters worse, none of his peers even look at him in the wheelchair when we are out on our walks.

His teacher went on to say that, when the teachers said yes and grabbed his hands, he seemed relieved that they understood he could not dance the same as the other kids, and that it was o.k. She said that, “once he holds the teacher’s hands and he starts dancing, he gets a great smile on his face and his hands start moving! He’ll pull them a little closer or moves their arms side to side…it’s really awesome!”

I’ve worked hard all his life to make Dear Son feel good about who is he. I think that good self esteem and good self worth are the best gift you can give a child. I am pleased that he is enjoying himself and hope that he continues to dance. It is my wish that whatever he does, he looks beyond his physical abilities/disabilities and be proud of who he is. There is a beautiful saying that starts like this…”May you sing like no one is listening, dance like no one is watching…” Maybe we should stop right there. Just “dance like no one is watching.”

Note: Dear Son is sixteen 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.

Cowboy Wiggles!

Happy Halloween! This is Dear Son's cat Wiggles. We decided to dress him up for Halloween. This made Dear Son laugh since Wiggles does not like to get dressed up and wants to take off the hat as soon as possible. Ironically, he doesn't seem to mind wearing the bandana.

I also took pictures of Dear Son at the clubhouse of our apartment complex. The pictures aren't very good since Dear Son was extremely tired that day.


Finally, here are some pictures of Dear Son from Halloween past. I have posted them before but for new readers, you can click here.

Zen Swimming

We had talked about swimming for some time. Dear Son was in summer school and they would swim two days of the week. Swim days were his favorite and everyone who knew Dear Son knew exactly how much he loved swimming. The bus driver would tell me how Dear Son would stay in the water until the very last minute. He was the first one in the water and the last one out. Oh, how I wished Dear Son could tell me that.

They had “Parent Visitation” at the pool however I was not able to attend that day because I was working. One day after school, Dear Son and I were talking and I suggested that I’d like to come to the pool, to see him swim. His eyes lit up and a big smile came across his face. I decided to call his teacher right then, to ask permission, as a courtesy. Dear Son listened as I made the call. He was so happy.

We talked about the day I would be visiting the pool. That morning Dear Son was so excited. The day was as hot as could be. I arrived at the pool and there seemed to be a million kids there. There were wheelchairs there, although not nearly as many as in years past. As I searched for Dear Son, one of the aides in the classroom signaled to me across the pool, pointing towards someone, which I later learned was Dear Son.

First I saw his teacher, then one of the aides and finally the aide that was holding Dear Son. Dear Son, with his tanned face to the sun, lie in his arms, floating on the water, oblivious to the fact that I was there. I tried talking to him but he was “in the zone.” He didn’t blink or acknowledge me in any way. It was quite disappointing. He had no idea I was there.

That is sometimes the case with these kids. Your experience with them is never quite what you hoped it would be. In the past, when I would visit Dear Son at the pool, he would be smiling ear to ear the minute I arrived. But today, he just lie there, totally relaxed. When he got home that evening, I told him I came to visit him at the pool. He was just as excited. I teased him that he never even saw me and he just smiled. We looked up at the fake Olympic gold medal that hung on his IV pole, the one they had given him at school. Dear Son was so proud of that medal. He couldn’t have been more proud than if he had really won it. I thought of the irony of it all. We talked some more. I told him that I was very proud of him and that I couldn’t swim at all. I told him I was amazed that he was in the deep water. I thought about the fact that it wasn’t very often that he was better than anyone at these kinds of things but the swimming, well, that was his forte. As the summer progressed, Dear Son continued to have seizures, which we later learned was occurring almost twenty four hours a day. We didn’t learn that until the week after summer school ended. I imagined then that the swimming was much more than floating in the pool. Perhaps that was his way to combat what was occurring in his body. And the fact that he could even get to such a place, of total relaxation, had to good for him. I never in a million years thought that he could relax to that degree, almost as if he were meditating and be so relaxed.

Summer is over now, but I still left his Olympic Gold Medal on the IV pole. And for that, I am so proud of him. To see him totally relaxed and enjoying something so much, is the best part of being his mother and the best part of our summer. Move over Michael Phelps, you have nothing on Dear Son, at least in my heart.

This is Not Your Father's Hospital Bed- Part II

When Dear Son was two years old, we built our first new house. At that time, we knew of Dear Son's disabilities however we didn't have a good idea of what modifications we should make when building our new home. The home had an open floor plan, which I knew would be good, but trying to plan ten years or twenty years ahead, was difficult. We settled on a few things, making all doors in the house 36 inches wide, converting a first floor laundry room into a changing room/toy room for Dear Son and the biggest change of all had to do with the foundation. The builder was able to raise the foundation 8 inches which allowed the sidewalk to our front door, look normal and therefore there was only one step with which to maneuver the wheelchair. To this day, no one who drives down the street, would have any idea that our home was wheelchair friendly or handicapped accessible, which is exactly the point of "universal design." Since that time, I have learned that many of the changes that are made for the handicapped, are often enjoyed by everyone.

You may recall a few years back, when Dear Son required a hospital bed, that I was very reluctant. The last thing I wanted in my home was a giant hospital bed. It's bad enough to be in a hospital but to have one in our home, was well, a giant eyesore. I took the bed apart, painted it, created a faux headboard from a bamboo blind and ended up with a modern looking bed. A good solution nonetheless, but not great. That is, until I saw this bed.

This bed looks like a beautiful bed, but unless you know the secret, you might just assume that it's solid wood good looks are something you'd like in your own bedroom. After all, who wouldn't like a beautiful, hand crafted, solid wood bed. There is something especially lovely about a handmade bed. And it's no wonder that having a solid headboard on a bed is good feng shui. But what if I told you, that this is no ordinary bed. This bed, fits right over a hospital bed. And who wouldn't love that. And that is the beauty of "universal design". This bed not only fits over a standard hospital bed but would be lovely in any bedroom.

This bed is the creation of Gary Owens. He created the bed when his own wife became ill. I can't imagine the good energy that would create having such a beautiful bed in what could have been an ordinary hospital bed. The best thing about these beds, is they are not only pretty, but functional. I also think there is something special about a gift that is hand made.

Gary contacted me some time ago and asked me what I thought of his beds. I told him they were gorgeous. I said that they were so beautiful that he should not limit himself to marketing the beds to Durable Medical Equipment (DME) providers, but also to high end retailers. At the present time, I am not aware of any other bed that fits over hospital beds. In addition, while most DME providers do offer higher end hospital beds, they are expensive and most insurance companies won't pay for them. If you pay out of pocket for them, they still aren't a design that is very exciting and the problem is that once the hospital bed is no longer needed, you have just paid for a bed you'll never use again. And that's the beauty of tendercarebeds.com When you buy a Tendercare Bed, the bed fits over a standard hospital bed AND when you no longer need a hospital bed, you still have a lovely bed!

I can only hope that these new beds catch on. How lovely would it be to walk into a new children's hospital and see a lovely bed like this. More often than not, they invest in large screen televisions. That's fine, but when you spend a lot of time in the hospital, you want a hospital room that looks like home and you want your home to look like a home and not a hospital. I would imagine in this case, you could also have a decorative painter create a scene on this bed or add a child's name to it. And with this bed, you can have your cake and eat it too.

But this bed is not limited to any one group. I can only imagine that as the baby boomers age, and more hospital beds make their way into the home, that more people will want more than the just the standard hospital bed. I can see this business growing to include nightstands and matching dressers. Move over Pottery Barn and Nieman Marcus, Tendercare Beds is here to stay.

What I Know For Sure About Having a Special Needs Child

The note from high school was interesting. Dear Son was learning about plants and his teacher had written me a note to tell me how much Dear Son was enjoying learning about them. They had taken a field trip to a garden, where they got to view many plants and herbs and he loved it. She wrote, “Dear Son is so awesome to have in class-the best sense of humor and he is so eager to explore."

It was only a few weeks later, when I spoke to his teacher on the phone for the parent teacher conference, and she indicated that he was enjoying watering the plants. She said it took a lot of effort for him to do this. I wasn’t clear on how they were doing this since Dear Son doesn’t have much functional use of his hands or his arms. She stated that they used a squeeze bottle and he was responsible for attempting to squeeze the bottle to start the watering and to stop the watering. Once I made it clear to them that he was left handed, it went much better. She said they had just assumed he was right handed.

If I were to imagine sixteen years ago, that Dear Son would be such a mature young man with varied interests, I doubt I could fully comprehend what that would mean. At that time, I was worried about all of things he wouldn’t be able to do but secretly hoping he would do all of them. That’s why it was interesting when I received an e-mail from a woman today, whose infant son was just diagnosed with an ARX mutation. She had two other children, prior to this one. She said she would have been fine not knowing.

I wonder what to say when I receive e-mails like this. I want to be sensitive and kind and try to imagine where they are at in the journey. On the other hand, it’s so difficult to write them because my heart is filled with such joy and love for Dear Son, that it’s hard for me to write as if a “special needs” is something less desirable, because I no longer feel that way. I feel that Dear Son is a perfect child.

I no longer see what he isn’t but what he is and has become. I love who he is and who he has become. I have learned so much from him, living my life and seeing the world from his perspective, that I no longer think it’s a bad thing to have a special needs child. In his imperfection, I found perfection. I can no longer think of my child as being anything other than perfect. His physical and mental disabilities, that were once in the forefront, are now in the background. His soul, his personality and his honesty beam so bright that I forget about the other stuff. He lives every day from the heart. He lives in the moment. He is happy and he has friends. Of all of the things that give me pleasure in life, seeing him laugh or seeing him smile is always number one.

Because I love my Dear Son, it doesn’t mean that I don’t wish his life was better or easier. I’d love it if he could walk or tell me when he’s hungry. I’d love to be able to talk to him for a whole day, just twenty four hours would be great. Being able to hear his voice, listening to what he has to say and hearing him tell stories from his point of view would be wonderful. I don’t think other parents can really comprehend what it would be like if their child never spoke to them.

But perfection comes with a cost. I don’t wish for all of the horrible seizures for these little boys. I don’t wish for the hospitalizations, the ER visits, like the one Dear Son had yesterday, or for any of that other stuff. The enormity of caring for a disabled child can be overwhelming, no matter how organized you are. As they grow bigger, it takes more of their energy and more of yours to do the same things you did yesterday.

But if I had to trade all of my yesterdays with Dear Son or all of my tomorrows with him, I’d never do it. Genetics tests are just that, they are information. But what they never reveal is the depth of the joy in caring for a special needs child. I firmly believe that being blessed with a special needs child, is like the universe smiling down on you as a mother. For only those mothers, will be able to see the child for who they are. And that something, is pretty spectacular.

Note: Dear Son is sixteen 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.

The Electronic Medical Record-Changing the Way Healthcare is Delivered?

Monday was my second experience with the new Electronic Medical Record (EMR). Our first visit with the EMR was last year, when our pediatrician’s office converted. The nurse came in to take Dear Son’s history, walked in with her laptop, sat down and typed in my concerns. She took Dear Son’s vitals and then entered everything into the system. Very clinical, I thought. And extremely impersonal. I hated it. When the physician came into the room, he just jotted down the notes and elected to enter them into the EMR later. I was relieved.

My second experience with the EMR was on Monday. It was our first visit, Dear Son and I, with this GI physician, a motility expert. Dear Son is considered a complicated patient, by most physician’s assessment. At this stage of the game, he is out of the area of expertise for a lot of physicians, due to his diagnosis. Dear Son suffers from Cryptogenic Infantile Spasms, caused by the ARX mutation, has Progressive Motor Dysfunction and has a Progressive Neurological Disease caused by an abnormality of the dopamine receptors.

Our visit was scheduled for 3:40 p.m. We picked him up at school at 1:15 and arrived early for our appointment, allowing plenty of time for road closures. We had experienced heavy flooding in most areas, the worst in thirty years, so several highways were closed making travel difficult. We got into the examining room around 3:45 p.m. and the physician came into the room around 4:35 p.m.

Our visit started out fine. The hospital has forwarded extensive paperwork to be completed prior to the visit. This included pertinent medical history, all prior GI tests, medical history from birth to present, along with all hospitalizations, surgeries and growth records. The nurse took the medication sheet I had prepared and left the room to enter the information into the Electronic Medical Record. The physician, whom I had never met, came into the room and introduced himself, shook my hand and started the visit. He had read the history I prepared and asked a lot of questions. As we went through the visit, the physician repeatedly stopped to enter information into the EMR. When he did this, he would have to turn his back towards me, and then enter the data in the system. As he did this, he would take time to review it and edit it. Then he’d stop, turn around and continue on the visit, then stop again, turn his back and have to enter information into the system again. Our visit that started at 4:35 p.m. ended at 6:20 p.m. Over half of the time, was spent with the physician entering information into the EMR. It was distracting, it was annoying and excruciating to endure. I felt like I was having to do his job with him. The physician was personable and knowledgeable. He communicated well and when he asked me questions, he faced me and did everything right on an interpersonal level but there just wasn’t any getting around having to stop a visit and enter information into the EMR. I even asked him in the middle of all of this, how he liked the EMR. He explained that it was o.k. and that it took a lot of time, especially for complicated patients like Dear Son. He said it wasn’t as bad for the simpler cases however I would guess when you work at a Big City Pediatric Hospital, you probably don’t get many simple cases. He said that he would have to come back tomorrow and review the EMR and add more detail since he was just summarizing today. I thought of how excruciating it was to endure this. He wasn’t just jotting notes in here. It was more like the process of writing a letter; you know the kind when you sit down you think it’s only going to take five minutes and forty five minutes later, you are finished. In this case, the physician would type something, then go back and delete it, then write it again and edit it repeatedly. It was downright annoying. I wanted to take the keyboard away and just type it in myself. After all, I knew what my concerns were and I’d have been more than happy to summarize that for him.

In Dear Son’s case, his motility was affected by several issues: his gene mutation, the progressive motor dysfunction and the Scopolamine patch. The dopamine receptor problem (The progressive neurological disease is an abnormality of the dopamine receptors.) and lack of gaba (due to his gene mutation) may result in increased vomiting, GERD and gastric emptying delays (both dopamine and gaba are involved in reflux). In addition, when he is ill, his motility is worse, resulting in the bloating and vomiting issues we experienced earlier this year. The physician recommended a new gastric emptying study be completed and then after that, a possible g/j tube would be inserted. The g/j would allow us to bypass Dear Son’s stomach, where many of the motility issues are occurring. In addition, I’d have a consult with nutrition. I had many questions however it was a bit awkward trying to converse with him, with constant interruptions to enter the data.

Sometimes, I’d lose my train of thought because he’d ask to stop and enter in the data before he forgot. In the meantime, I am trying to think through the ramifications of this new g/j tube on our lifestyle. For example, the g/j tube would mean that he could only receive feedings via the feeding pump and never via a syringe since via the syringe would cause severe diarrhea. This would mean that I would have to give meds at midnight and then get up by 3:30 a.m. to start his feeding so it would be completed in time for school. This would be difficult to administer since I need to get some sleep and the sound of the pump running all night is loud and annoying, assuming I could actually get up at this hour every day, in addition to having my own business, working, and caring for Dear Son 24/7 without any nursing help. Of particular concern, was that if the g/j tube would become dislodged, I’d have to take Dear Son to the nearest ER where he would have IV feedings, until the g/j tube could be placed in him again. Without a wheelchair van, I’d have to call an ambulance for transport and this would be very expensive. It would also mean that on a day when I’d have a doctor’s appointment, it would be extremely tough-how would I administer a three hour feeding when I am transporting him to a doctor visit? While a g/j tube might be a simple solution bypassing the stomach motility issues, from a more practical standpoint, as far as I am concerned, it requires more thought as a long term solution for Dear Son.

The visit was compounded by the physician’s heavy accent, making it hard to understand him at times. I had to ask him several times to repeat things, which only added to my frustration and probably his as well. Entering all of this data in the system, along with sixteen year medical history, was time consuming for the physician.

There were signs in the examining room about how they were converting to the EMR. I thought about how expensive it must be for a facility to do this. If every visit takes 50 % longer, then a physician will see less patients in the course of a day, just to enter in the data. In addition, if I personally were seeing a new physician, and he was stopping to enter data into the EMR, I can’t imagine I would ever feel comfortable asking him about a personal concern relating to a medical issue. Entering data into the system, is about as impersonal as it gets.

I remember a few years ago, when I went to an orthopedic spine surgeon about my back issues. He had asked if it would be o.k. if he dictated during my visit. I agreed. The visit started and he introduced himself and asked about my concerns. He stopped and dictated my name and concern. Then he reviewed the x-ray, explained it to me and then stopped and dictated the x-ray results. This went on through the entire visit. I never saw this physician after that because I refused to pay for an office visit and then have to sit there while he did his work, dictating. I chose another neurosurgeon instead, one where I didn’t have to endure his dictating. It was the same experience with the EMR. I felt like I had to sit while the physician did his paperwork, even though there isn’t any paper involved anymore.

The problems with the EMR in a patient visit are as follows:

• It’s time consuming. It took 50% more time to get through our office visit when he had to enter the data.
• It’s annoying. I don’t want to sit through the data entry piece.
• It’s impersonal and critical information could be missed. If I am not comfortable talking to a physician in the office visit, then perhaps I might not share information that may be critical to a diagnosis. If that occurs, then the diagnosis could be wrong and the treatment may not be effective.
• It’s disrespectful. I don’t want to sit through a physician doing his paperwork any more than I think he wants to sit with me while I do my paperwork. If they are asking me to complete medical history paperwork prior to the office visit, then I would expect that they could enter the data after I leave the room.

From a healthcare executive perspective, the problems would be:

• It’s time consuming. If office visits take 50% more time, the physicians are seeing less patients. Less patients equal less revenue.
• It’s expensive. Not only are the docs seeing less patients, but I’ve just replaced a lower cost worker, the medical transcriptionist, with my highest paid employee. Instead of the transcriptionist turning dictations into medical records of sorts, I have the highest paid worker, the physician, performing data entry.
• It’s less personal and critical information could be missed. If the patients are comfortable and can’t bring up their personal concerns to the physicians, then the physicians make the wrong diagnosis therefore increasing medical errors.
• Some patients don’t like it. If a patient finds it annoying, they may elect to go elsewhere, therefore decreasing revenue.

As a patient, I hope I don’t encounter any more physician’s with the EMR however I know that is only wishful thinking on my part. As more and more convert to electronic medical records, I hope they give some thought on the front end to how this will impact patient care. I am certain that even if they don’t give it any thought, about the time they realize the money they are losing by having their physicians spend precious time doing data entry when they could be making money, will change everything. After all, if I were employing physicians, I’d want them performing the tasks that no other person in my organization was qualified to do. In essence, I’d want them doing the job they were paid to do. I could pay another work much less to perform data entry. And isn’t that precisely what we are doing when they dictate? We are paying for a lower cost worker, a medical transcriptionist to turn that dictation into office visit write ups. Why make a huge investment mistake and have our highest paid workers, the physicians, do a data entry task? It’s a huge waste of their time and their money. In addition, it’s doesn’t attract any patient loyalty to the organization. What patient wants to sit through this?

The EMR is just another trend towards the depersonalization of healthcare. First we had the hospitalists and now the EMR. What I wish healthcare executives would understand is that the physician is the most powerful person in your organization. The physician is why I come to your facility. I don’t come because you have nice rooms, I don’t come because you are on the best hospital list (o.k. maybe a little on that one), I don’t come because you have nice landscaping. I come to your facility because I like your physician. Your physician is who I want to see when my Dear Son has an issue. It’s who I want to see walk through the door of the hospital room when my precious Dear Son is sick and it’s who I want to follow Dear Son through his medical issues. That is why I come to your facility and that is why I come back. I don’t come to see “any” of your physicians, I come to see “our” physician. As Dear Son deteriorates, the role of his physician’s become more important. Not only in terms of Dear Son’s care but in terms of what I need as Dear Son’s mother. I don’t want a hospitalist to come into a room when Dear Son’s dying, I want Dear Son’s doctor in the room. I want him to tell me that we did everything we could. And that is the power of your physician. That’s what makes me come back.

When the Department of Human Services Cuts Hit Home-Who is Left to Care for the Disabled?

Dear Son had been sleeping longer than normal. Typically, he’ll wake up early and once I get his food started via the g tube, he often goes back to sleep. This morning was no different however he had been sleeping for some time now. As a mother, you cherish these few moments to get things done, whether it’s around the house or just taking some time on the internet but this had gone on for a while. Lunchtime came and went, but he still was sleeping. I let him sleep knowing that sometimes, he needs this extra sleep to grow. Other times, too much sleep means he’s having more seizures.

I kept checking on him and finally, around 1:30 or so, I decided to get his lunch time medicine ready and his feeding. His lunch time med is typically given around noon but I have a window of around an hour or so. Since he had been sleeping so much, I opted to give his feeding via the syringes, doing it all at once versus going through the feeding pump, which would have taken an additional three hours. After giving his feeding, I proceeded to dress him for the day. I needed to get a few things from the store, and taking him with, would take all of my energy. Our one hour pleasure walk would be forfeited today, since I would have to lift him in/out of the car four times, for a ten minute shopping trip at the grocery store. That little trip and all of the lifting of his 170 pound six foot frame, would take all of my strength for the day. Normally, I’ll use a respite worker when I have to go to the grocery store, or try to do it while he is at school. Today, being Sunday, I decide to take him along. As I dressed him, his fingers and hands began to shake. It wasn’t uncommon for this to happen and I felt it was typically seizure activity however the most recent EEG showed this was not the case. Regardless, I use the magnet on his wrist to activate his Vagus Nerve Stimulator (VNS) and proceeded to dress him.

Once he was dressed, I used the hoyer lift and got him out of bed and into the wheelchair. Although I use the hoyer lift, there is still a fair amount of lifting involved on my part. The hoyer lift gets you 80% there and the other 20% is you. Once he’s in the wheelchair, I have to lift him up to straighten him out and get his hips into the rear of the wheelchair so he can sit properly. When his tone is off, like today, this is a bigger job. When he’s having a good day, you can get him in the wheelchair with little or not lifting on your part; this is similar to the diagram in the manual. The worse he is, the harder it is to position him in the chair without additional lifting. I am sweating pretty good by now and his hands continue to shake but not more so than before. I use the VNS again, hoping it will kick in. I listen for the vibration in his voice, to confirm the VNS has been activated. I hear nothing.

I pull the wheelchair up to the table and begin to brush his teeth. He’s getting restless now, and begins to cry out. This is not normal for Dear Son, he is normally happy to be sitting up. As I lather on the shaving cream and start to shave him, he begins to yell out more and seems in more distress. I soon realize that I have a full blown seizure on my hands. The seizure gets worse and time is getting limited. He can no longer sit upright and I can tell by the way the seizure is escalating that I won’t have time to get the hoyer lift over to him to remove him from the wheelchair. I’ll have to lift him out of there myself. He’s really yelling out now like he’s in severe pain and he’s shaking quite rapidly. I remove the footrests and tilt the chair forward. I am going to have to lay him on the carpet immediately or he’s going to fall out of the chair. I lift him onto the ground and then slowly let his head down so he doesn’t get hurt. I race to get the Diastat, a rectal valium of sorts, to stop the seizure. I am dripping in sweat now, worried it won’t be enough. I tear open the diaper, administering the Diastat as quickly as I can. Sweat pours out of my head so fast, I can hardly see.

With each passing seizure, I find the adrenalin seems to be pumping faster and faster, at least with the big ones. At some point, as Dear Son deteriorates, you know there will be an end and with each hospitalization and with each milestone loss, every event takes you a step closer to the final day. You begin to wonder as each one happens, if this is “the” one. Because of that, the adrenalin pumps faster and the sweat just pours out of my forehead, like a cartoon charactature drawing in the comics section of the newspaper.

The Diastat is also getting harder to administer. No longer am I giving it to a child, but a nearly full grown man. It’s hard to roll him over and just plain harder to administer. He yells out some more and I begin to wonder if it will be enough. Once it’s administered, it’s just a waiting game to see if it will work. I am sweating even more now, if that were an option. I look at my watch. This seizure has been going on for over twenty minutes now. I wonder if I am going to have to call 911. All I need is for the Diastat to kick in and the seizure should start to recede a bit. The problem is that it’s just not as fast as it used to be. In the beginning, when I started using it almost ten years ago, the Diastat would stop the seizures on a dime. Now, it stops them typically within ten minutes or so. I only administer it if I have a seizure that getting bigger or advancing, as I call it. Fifteen minutes later, the seizure begins to come down a bit and I know the 911 call will not have to be made. Dear Son has beat the seizure. He lies on the carpet, as I rub his back. His eyes are rolling back and his eye lids are having a hard time staying open. I talk softly to him as I rub his back, propping his head on a pillow. I know he will need to stay here until he comes out of this. It’s not long before he’s fast asleep. He’ll need to stay here for a while until he wakes up since it would be too hard to move him like this.

As time goes by, I find myself holding on tighter. The thought of Dear Son not being around is scary. I had a dream the other night that someone was trying to take Dear Son away. I went searching frantically for him and when I found the man, I told him he could take anything he wanted from me, but he could not take my son. I took Dear Son back from the man and woke up in a cold sweat. The clock read 3 a.m. I was so shaken by the dream that I couldn’t go back to bed right away. The next day I told Dear Son about my dream. We have a little catch phrase that I use with him. It is, “where you go, I go” meaning that whenever he has to go into the hospital or do anything, that I will always be there with him. I told him that after I told him about my dream and he smiled. He knows I love him and I love taking care of him. I tell him all the time that there is nothing I love more than taking care of him. He has become my purpose in life. While it’s true, you have to build a life for yourself, the reality is that when you care for a person with this many needs, you don’t have time to do that. They are your life.

This week, I received an e-mail and a letter regarding the cuts by the Department of Human Services in our state. They fund the respite program that we use, along with many other services for people with disabilities in our state. Without these funds, disabled people can not get the care that they need, whether it’s in a group type home or whether it’s receiving respite care in their own home. Our respite funding was cut by $200 which is 20 hours of respite care that we will not be able to use over the next year (typically I receive on average 10 hours of respite care a month, enough to run a few errands). I worried not for myself or for Dear Son, but for those children and adults in homes where the staff was already overburdened (you may recall an earlier post where one of the residential programs has one aide for every 7-10 pediatric fully disabled residents) and there would be additional staff cuts. I realized that in the end, that the only time you are guaranteed good care is when someone loves you. When someone loves you and is able to care for you, your needs will be met. I feel honored that I get to be that person for Dear Son. But I also know that some people don’t have anyone to care for them other than the state. And for those people, they need the funds to employ the people who will care for them. Caring for the disabled is not optional, it’s mandatory. It’s funny, we require driver’s in our state to carry auto insurance, in case they are in an accident but caring for the disabled people in our state is optional. There is a saying that goes like this, “how you spend your money, says a lot about you.” I wonder what these funding cuts say about us. But more importantly, I worry about developmentally disabled children and adults and if they will be hungry longer since there are fewer people to help feed them or get them their food on time, or their diaper changed quickly or that someone can attend to their seizure fast enough. Who is there to help them after the pink slips are administered? We need the Department of Human Services to restore those funding cuts.

Note: The Department of Human Services announced budget cuts last week that will have a substantial impact on services provided by many organizations that serve the developmentally disabled. Our state is retroactively reducing the amounts they will pay some programs by 2-12% Another agency in our area has funding cuts in excess of $500k this year alone. This will result in staff layoffs, reductions in wages and fewer patients being served.

Dream Kitchen-An Employee Lunchroom Redesigned

Kitchen "Before" Picture-Here is the "before" photo of the employee lunchroom. Notice the large black door and small refrigerator.



Here is the "After" photo.


Several months ago, I shared with you a home that I staged for a client. The post was called, "Designed to Sell." The home, after my staging, sold in only 28 days, compared to the ten month average for homes in the area.



Since that time, I wanted to share an exciting project that I recently completed. I was contacted to consult with a client on an employee lunchroom. At the present time, the space was used strictly for employees to eat their lunch. The client indicated that she would like to have a stove in there since they frequently have clients at the corporate offices and after a few days, ordering in sandwiches can get a little old. From there, our project began.




I started the project off with a tour of the facilities to see what finishes were currently used throughout the corporate offices as well as colors and current design. I wanted the lunchroom to be modern yet reflect the traditional style used elsewhere in the company. I spent three hours on the consultation, finding out who uses the lunchroom currently, how many clients they will be cooking for, how many people will use the lunchroom during the peak summer times when the interns are there as well as how people actually use it-where do they sit, how are the tables grouped, etc. For me good design begins with a kitchen that functions well; once that is achieved, then I plan out the design aspect. The client also specified that we needed to keep the existing flooring and wallpaper.
For this kitchen, I made the space planning, organization and design decisions. I selected the kitchen cabinets, added an island to serve as a buffet for serving food to the clients, added overhead lighting on the island and under cabinet lighting for cooking. I selected a cherry cabinet to match the cabinetry used elsewhere in the corporate offices. My design scheme was brown (as in the cabinets and furniture), gold (countertops, tablecloths and lettering), orange as the accent color and brushed aluminum for all of the finishes. I worked with the client on the finishing touches and selected three rug options and gave her my first preference as the ones that are shown. I selected the picture frames to pull the design over to the lunchroom side and the flowers/vases for the center island. While fresh flowers are always preferred, fresh flowers for the lunchroom on a weekly basis were cost prohibitive so we went with silk to give it some punch. I guided the client’s design choices for the chairs. She wanted to add the chairs and I suggested a modern, graphic, circular design with the colors of the kitchen. She then sent me pictures of the chairs prior to ordering and I gave her the thumbs up. We also had to deal with the door in the center of the kitchen. I suggested painting it the same color as the wallpaper so it would blend and visually disapper. Instead, the client was able to have a piece of steel cut and placed over the door. I think that was the right decision.

One of the keys to this design for me, was customizing the lunchroom for this company. I did this by:

• Adding a monogram to the kitchen island; this is the first initial of the company name. I felt leaving the kitchen island bare was a mistake. I thought about using the company logo, but that would have been too impersonal. This also keeps this kitchen from looking like every other kitchen. Instead, I suggested adding the letter “E” in gold to the island. I looked through the fonts on-line and decided on this Edwardian font.

• Using the company slogan on the wall. I asked the client if they had a slogan that was used in their corporate materials or in their handouts. I suggested adding this to the wall. This kept the lunchroom feeling “corporate” as opposed to a restaurant area. She ordered and installed the slogan on the wall. This was no easy task and I think she did a beautiful job. (We are still waiting for the period to arrive to complete the sentence.)

• The fruit bowls on the table. This company supplies fruit for their employees. We added new fruit bowls at every table to personalize the area.


• Glass tops and tablecloths for the tables. The client wanted glass tops made for easy clean up. She wanted tablecloths that were washable but it was cost prohibitive to have them made. I suggested she use pinking shears and cut them to size, which she did.

Functional choices included:

• Under cabinet lighting is not only beautiful but allows the employees to read the directions for cooking.


• The towel bar was installed on the kitchen island as a place for them to dry after the kitchen has been cleaned up, let’s say after food has been cooked.
  
  
  

• On the right side of the kitchen, near the refrigerator, is the coffee pot. Coffee accessories are located in the drawers below and paper plates and silverware are located there as well, so employees will have easy access to them when using the microwave.
  
  

• Recycle bins located in the center island for easy clean up. The center island also houses pots and pans for use on the stove across from it.
  

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  Under cabinet lighting is not only beautiful but allows the employees to read the directions for cooking.
  
• On the sink, there is a hot water dispenser on the left and a built in soap dispenser on the right side, to minimize countertop clutter.
  
  
  

This kitchen could not be done alone. By working together with the client, we were able to achieve a great kitchen. Some things were changed along with way. Initially, we didn’t think there would be enough room in the budget for the stainless steel appliances and thought we’d have to choose white. At that time, we had white subway tile for a backsplash. The client however was able to negotiate some great deals, and got all of the appliances for only $3,300. The client acted as the general contractor on this project, working with the cabinet maker, having the stainless steel backsplashes cut to size, installing the lettering on the walls and shopping on-line for the fruit bowls and chairs (Overstock.com) for the lunchroom. She also found the table and mirrors that were used with the upholstered chairs and swapped out the existing hardware for that to match the cabinets. She worked tirelessly on various aspects. The sink was donated from their manufacturer however the hot water dispenser had issues and it took several installs to get it right. The ice maker leaked and required service calls to fix that. The backsplash was installed and then re-installed when an additional outlet was required.

There were also some glitches along the way, the biggest one being the cabinets. I selected 42 inch cabinets for the kitchen and that’s what the client ordered. 36” cabinets were delivered however. Since they were custom cabinets, a decision was made to work with the 36” inch ones, and add crown molding to the top and over cabinet lighting on top. This solved the problem and it still looked great.

All in all, a great project. This is a $60k kitchen that was done for $22k excluding labor. Most of the discounts were on the cabinets, since the company manufactures them along with the sink. The steel that was used to make the sinks, was cut for the backsplashes and for the door. But the project is only a success if people use it. I suggested that they have a kick off party and cook for the employees using the new stove. Interestingly enough, the employees started using their laptops in there, are having meetings in there as well as eating in there. Most interesting, was the item that employees used the most, the ice maker. We did not identify this as a need so it was interesting to note how many employees use this feature. And a kitchen that is used, is the best kitchen of all.

Medical Update III- Home

Dear Son was released from Big Academic Medical Center yesterday. The EEG was much better, as expected, so he could go home. While it still had some abnormalities, it was much improved. I can now breathe a sigh of relief, even if it's only a temporary improvement. Ped Neuro Doc suspects the antibiotics are the reason for the improvement. Regardless, it is still good news.

Dear Son is resting well. We are glad to be home. It is a good feeling that he should be able to start school on Thursday, provided he continues to improve. Ped Neuro Doc did a really nice job overseeing Dear Son's care. Despite the fact that they were low on techs, he managed to get the EEG completed so we would not have to make a return trip later this week.

I am happy that we have a lot of good news to celebrate. Thank you for all of your prayers and concern for Dear Son.

Medical Update II

On Wednesday, Big Academic Medical Center started Dear Son on Zosyn and Vancomycin via the IV. On Thursday morning, I noticed that Dear Son was bright red and had Red Man Syndrome, a common adverse reaction to Vancomycin. He has had this before and I remembered it once I saw it. They started him on Benadryl to counteract that and things began to improve. Last night they were able to wean him off of all oxygen and he is breathing on his own. Today, they stated that they will switch him to oral antibiotics and see if he tolerates it. He will continue this for 12-14 days. They stated that the pneumonia is most likely an aspiration pneumonia or a non-MRSA pneumonia. He opened his eyes today for the first time since he was admitted although he is still sleeping the entire day. The good news is that they expect that we are probably out of the woods regarding the pneumonia; his fever is gone and the antibiotics appear to be working. He still has a pretty good pnemonia, so it will take time to get rid of it totally.

Today they will begin the extended EEG monitoring. Typically, when Dear Son has an infection, it will lower the seizure threshold so more seizures will present. In Dear Son's case, he was having seizures prior to the pneumonia so I can not say that I noticed more due to the pneumonia. Conversely, once an antibiotic is started, it can have the opposite effect by decreasing seizures since the antibiotic will raise the free portions of the seizure meds thus increasing the medicine levels which can make them more effective thus reducing the seizures. The problem arises when the antibitotic is finished, seizures will go back to their previous levels.
So essentially, we expect that the EEG may be better, although the effect may only be temporary.

They expect that he will remain in the hospital until we get the EEG issues resolved. He'll be monitored through Monday and then once the EEG is read, we'll take it from there and can possibly get released.

Thank you for your concern and I'll keep you posted the best I can.

Dear Son Medical Update

Since my last post, Dear Son continued to have seizure issues. It was difficult to determine whether or not the Felbatol was actually working and during his seizures, he began yelling, getting very hot and turning red, almost as if he were going to explode. A decision was made to cut the Scopolamine patch in half last week. Since that time, he strugged with his secretions and choked quite a bit. In addition, we attempted to increase the Felbatol to see if it might result in an improvement of the seizures. It seemed initally as if it might be helping however I could never be confident in my decision as to whether or not it was really effective.

In the interim, we were waiting for a hospital admission to do another EEG. Big Academic Medical Center is down to two techs right now so an admission was not in the cards until next week. In the meantime, Dear Son continued to choke and began running a fever today. I contacted Ped Neuro Doc and he suggested I take him to the ER for a chest x-ray and labs. I did that and they confirmed that Dear Son has aspiration pneumonia in his right lung (lower lobe and up into the middle). They started him on Zosyn and Vancomycin via the IV along with some chest PT. We will most likely be there a week or so until the antibiotics run their course. We still need to address the seizure issue so I really can't be sure.

I'll update when I can. In the meantime, I need to get back to the hospital.

What Happened to the Easy Days of Summer?

It has been a long and stressful summer. It was good to take a break from blogging and I am happy to return. What I thought might be an enjoyable summer, proved to be pretty challenging to say the least. Dear Son had taken a turn for the worst.

Since June, Dear Son continued to have significant medical issues. Perhaps one of the first issues is that of the Scopolamine patch. As you may recall, the Scopolamine patch was prescribed in April to assist Dear Son with his nighttime choking. The Scopolamine patch has worked wonders and virtually eliminated all nighttime choking episodes. Some of the side effects of the patch, have to do with delayed emptying of the stomach and delayed motility. The reduced urination and bowel movements continued to be a concern much of the time. We were aware of these effects and continued to monitor them.

As summer progressed, Dear Son's seizures began to increase in frequency and intensity in July. In addition to the increased seizures, he began to get very hot, his face turning red and yelling out or screaming with his seizures. In addition, he began to have seizures at school. While the patch was extremely effective at controlling his nighttime choking, it did not allow him to sweat. The heat and high humidity this summer put Dear Son at risk for heatstroke before we figured out what was occurring. With the patch, he was not able to sweat therefore unable to cool himself down. As he began to overheat, his face turned red and he began to yell out from the pain. After some conversations with his pediatric neurologist, he realized what was occurring and from that point forward, I needed to keep him out of the sun and more importantly the heat.

This proved to be a fairly tall order. Since he could no longer be outside on very hot days, he was unable to attend summer school for many of the extracurricular functions. This was the first year that they had an afternoon program full of fun activities for the kids to do after their half day at summer school. This program was only on Tuedays and Thursday and would allow me to work on those days. We had paid in advance for these program, $30 to $40 per day and had to cancel most of them due to the high heat or his inability to tolerate the heat or humidity on those days; all nonrefundable. It was more important to be safe. The down side was that it made for long days and not as much fun. They had a full staff to assist these kids and they were able to take them places that I could not manage on my own. Since he was not able to attend these functions, I had to cancel work on these days.

On the days he was home, I tried to take him for walks. June was the first month I could really begin to exercise again after my back surgery so I was anxious to continue walking. Trying to keep Dear Son out of the sun in July, the hottest month of the summer, so he didn't sweat, proved to be a nearly impossible task. Since his morning feeding (via the g tube) takes nearly three hours, I had to get up pretty early so it would be finished so we could walk before the high heat and humidity set in. I worried constantly about the heat and his inability to sweat. I took extra water, cooling packs and a wet washcloth to cool him down. But his issues would not end there.

Summer school ended towards the end of July. Dear Son's seizures continued to get worse. Not only was he having some pretty significant seizures but he was also having many smaller seizures throughout the day. I was worried he might be seizing all day but I wasn't sure. They were small with his hands shaking at times however they were occurring so often throughout the day that I could no longer keep track. He also began having some larger seizures that had me concerned. The scopolamine patch made managing them more challenging as well. Due to the delayed emptying of the stomach, his seizure meds would remain in his stomach longer and take longer to be processed. This was not helpful when he was having some major seizure issues. His pediatric neurologist was on vacation most of July and that only added to the mix. Once he returned from vacation, Dear Son was admitted to Big Academic Medical Center and hooked up to an EEG.

After twenty four hours, we had an answer. Dear Son was seizing twenty four hours a day. The problem with that was that our options were fairly limited. Dear Son has intractable seizures and is already on fairly heavy doses of nearly every seizure medicine. He also has a Vagus Nerve Stimulator implanted. He remains somewhat unusual in that while other children's seizures might be controlled with a VNS or one or two seizure medications, he needs them all. (We have tried repeatedly and unsuccessfully over the past few years to take him off of some of them and his seizures increase as soon as we attempt to decrease them.)

It was determined that we had two options: 1) to give him Ativan via the IV to stop them or 2) to start him on Felbatol. The problem with the first option was that it was short term. While they may be able to stop them with the Ativan, I wouldn't be able to continue that at home, therefore, it was strictly a short term solution. It was then decided that a trial of Felatol would be in order.

Felbatol, is a third line medication that has serious side effects, namely aplastic anemia and liver failure, both of which can be fatal. Felbatol is only used when other medications have failed and when the risk of the seizures outweighs the serious side effects. It can also increase levels of some of the other medications, making it problematic. On the plus side, it can sometimes work fairly well. With virtually no other options, a trial of Felbatol was started. I googled Felbatol looking for any horror stories and found none. I did find a helpful review on Epilepsy.com however and that made me feel somewhat better. I also found a few reviews in which patients stated it was the best seizure medication they ever tried in terms of seizure control.

After the first day or so on the Felbatol, his seizures seemed to decrease a bit however that was short lived. The seizures returned with a venegance and Dear Son had some of the most intense seizures I had ever experienced. Adding to the seizures, he was getting very hot, and at times it looked like he might explode. That's the only way I could describe it. I was certainly rattled by these and it was challenging to manage this. If I was slightly late with his meds, he'd have a big seizure. The problem was, they were so unpredictable. I was also very tired, managing these throughout the day and at night. I also had to be careful that I was allowing enough time between feedings with the delayed stomach emptying and then when he'd have these seizures, I was worried the meds wouldn't be processed fast enough to help him. To top it off, I hadn't had a weekend off in over a month and I was exhausted. Dear Son's Dad had been working a lot and I hadn't had a break. Finally, I called his Dad and asked him to take him for a few days so I could relax and get some much needed rest.

It has been a little over two weeks since he's been on the Felbatol. For the first week and a half, I can't say I saw many changes or improvement in his seizures so I was not convinced it's working. I met with the pediatric neurologist yesterday and discussed our remaining options. At this point, he can admit him and give him a bolus of steroids via the IV to try to get control of them. The other option is to do a drug induced coma where he would be intubated and deeply sedated in hopes that they could get the seizures stopped.

All in all, some tough choices. On a brighter note, he seemed to do much better today. What happened to the easy days of summer?

Note: Dear Son is sixteen years old and suffers from a progressive neurological disorder and intractable seizures due to a random mutation of the ARX gene.