As I mentioned here, I felt that coconut oil was helping Dear Son. I had been using it for a few months when I read about a physician, Dr. Mary Newport who started using it to help her husband with Alzheimer’s disease. Recently, she gave an update on the improvements her husband experienced since starting coconut oil in 2009 and how he is doing today, February of 2011. For more information on coconut oil, you can check out these links on Dr. Newport’s website here.
Monday, February 28, 2011
Sunday, February 27, 2011
I got her some food and water and asked her when the last time she ate was. She said at the hospital, nearly 24 hours prior. Upon further questioning, she had not been able to go to the bathroom either. She injured her hand trying to crawl to the bathroom and now was unable to use her hand at all. Needless to say, I was upset with the hospital releasing an 84 year old woman who had no way to care for herself. She could easily have died. She had no food or water for 24 hours annd could not access any. She seemed better once she was able to eat and I still had trouble convincing her that she had to go to rehab! All in all, a huge mess. I helped her the best I could then had to leave to get Dear Son. I finally convinced her to go to rehab that night and then called my sister who worked with the social worker and handled it from there. Once she was in rehab, I could finally sleep that night.
So the bottom line is my Mom is in a rehab facility with a virus, with pneumonia, with a foot issue and can no longer feed herself, hold onto a walker, go to the bathroom and can't even sit up by herself. All in the last ten days. I've been visiting her when Dear Son goes to school and went last night and today.
Anyway, I have a lot on my plate right now so I will take a week or so off from posting. I am very concerned since she is so weak. It is going to be a very long road to recovery at this point. She needs to get over the pneumonia and the virus, get some strength back, have her hand heal then sit up, weight bear and go to the bathroom. At this point, they are attempting therapy however she isn't able to do much being sick. I know from my experience with Dear Son that every day they lie in bed, they get weaker, making recovery less likely. And yes, the first hospital was clearly negligent and there are more details than I can include here.
Dear Son is doing pretty good. They took some video at school of him two weeks ago sitting in a rocker and rocking. Once they put it on You Tube, I'll try to share it with you. They are waiting for approval to do so from the school. Dear Son is moving his legs a lot! He even kicked the wall when he was in his bed. I don't think he's been able to move his legs in bed in some four years or so. Typically, he doesn't move them at all, even an inch. In addition, he lifted his right arm up during cooking at school. He hasn't done that in years.
Thursday, February 17, 2011
1) Put yourself in their shoes. When you have a child with multiple disabilities, you have to put yourself in their shoes in every situation, so you know what to do. For example, if you are giving them a bath, you don’t want their back to lean against a cold bathtub. No one likes that. This was probably one of the first things I thought of. The list could go on. In essence, be kind to them. Do unto them as you would like to be cared for. Always ask yourself, how would I like to be treated? Or if they are recommending a medical procedure, ask yourself if you would allow it to be done to you, if not, then decline. Lots of people will recommend things, it’s up to you to be the best advocate and gatekeeper of sorts for your child.
2) Make sure they aren’t hungry. When children can’t feed themselves, you have to pay attention to the number of hours between meals. They have little stomachs so often you can’t let them go some 5-6 hours between meals. It’s easy to forget when they can’t tell you. When they are on gtube feedings, it can be hard too. I know for Dear Son, there are days when he wakes up at 3:30 or 4 a.m. If I’ve tried everything else and he still fusses, I know it’s because he’s hungry (he’s on 1250 calories a day) so I’ll start his feeding. I know if he’s hungry because once I start it, he’ll stop fussing. It’s not often that he wants it started early, but I pay attention to when he does. Another example is earlier this year. On school days, I start Dear Son’s feeding at 3:48 a.m. and it’s done around 6:30 a.m. or so. He goes a half day so he doesn’t leave school until noon and gets home around 12:25 p.m. and doesn’t get lunch started until 12:45 p.m. or so. That’s 6 hours and it was too long! I talked to the nurse at school and we agreed that on school days, she’ll give him ½ can of formula at 11:30 a.m. That way, he has something in his stomach until he gets home and I can feed him his entire lunch.
3) Learn to be an advocate for your child. How does this help your child developmentally? Let me give you an example. I taught a Parent Home Medical Organization (Parent HMO, a Dream Organizer product) class at a local facility for the parent support group. One of the mothers explained that the staff was unable to feed her child at school since the child refused to eat for them. The problem was that the child was difficult to feed however not impossible to feed. The mother had come to school to try to help but in the end, the child refused to eat for the staff the next day. Essentially, the child refused to eat at school, day after day, and would come home at 3:30 p.m., run into the house and devour everything she could. This was not right. The child was so hungry that she had to go to school all day without eating anything. The mother and I talked some more and I explained that she would need to go to the school every day at lunchtime (she didn’t work) and sit with the staff until they were able to feed the child. Sometimes, we have to go out on a limb for our kids. Sometimes, it’s uncomfortable. Sometimes, our kids have a lot of quirks like this little girl who didn’t want anyone to feed her but her Mom. But we have to go to bat and make it easier for our kids. It’s not right that the little girl can’t eat lunch every day. And it’s even harder when we as parents are pushed into the uncomfortable role of being their advocate. It can be really hard to stand up for them and if a person isn’t used to speaking up, even harder. I struggled with this in the beginning too for my own Dear Son. What I learned was that if I changed my perspective from seeing myself as Dear Son’s mother to seeing myself as Dear Son’s advocate, it would be much easier. I would imagine instead that I was paid to be his advocate. When I shifted my thinking to being his advocate, it was much easier to fight for anything for my best client. That helped me a lot. Learn to be your child’s best advocate so they don’t have to be hungry all day or whatever the case may be. Children can’t learn if they are hungry. Give your little ones a chance.
4) Set health goals. It’s easy to go with the flow when you have a special needs child. After all, there are so many appointments. Instead of being reactive, learn to be proactive. Figure out what steps you can take when your child begins having issues and have a plan. Set health goals. For example, my goal for Dear Son is to go one year without hospitalizations for pneumonia. I am working very hard to keep him healthy and well and so far, he has not been hospitalized in six months for pneumonia. I have a distinct plan written out on all of the things that I will do to help prevent pneumonia. In addition, work with your doctor to find out what you need to do. For example, when Dear Son sounds congested, I need a plan for the nebulizer-how often should treatments be performed for example.
5) Let them know that you want the best for them and are rooting for them. I have a few catch phrases that I use and I tell Dear Son all the time. They are:
"Where you go, I go." I tell Dear Son all the time that wherever he goes, I go. I use whatever example there is, meaning if he has to go to the hospital or whatever. What this means is that his Mama will be there to guide things, to speak for him since he can not and to make life easier. He always has a big smile on his face when I tell him this. He knows I will make things easier for him. I often follow this catch phrase by using an example for whatever situation that we’ll be in. He always knows I have his back.
"We go together like peanut butter and jelly." I tell him this as if it were meant to be. We are better together. I want him to know that no matter what happens to him, he will always have a guardian angel at his side and that we were meant to stand together. I want him to have no fear and to understand that he is not a burden but a blessing to me and that together we will conquer it all.
My philosophy is this-I want to be the best mother and the best advocate for Dear Son. I treat him as I would like to be treated, if I were disabled. I treat him as if he were the greatest blessing I would ever receive in life, because he is. When people see how you treat your child and that you want the absolute best for them, one of two things will happen: 1) They will get on board and do the best and right thing for them. 2) They will go out of their way to take care of them. Another funny thing will happen, you will always get great service. People are busy in their jobs today and sometimes they have to cut corners. They don’t cut corners for the kid whose mother will be watching over them and whose mother will make the staff accountable. I am not suggesting that you be an ogre or that you are not courteous in any way, but rather, when people know that you are watching, they treat your child as they should be treated.
Section VI-Life Lessons. These are things that have taken me a while to learn but also allowed me to grow personally.
1) Ask for help. You may be confused as to how asking for help benefits your child. Asking other people helps the child and it helps you. It helps you in that it’s less stress since you don’t have to do everything. Less stress for you equals better sleep, better health and allows you to focus on the most important things. For the child, it’s great because it gives them interaction with many people and that’s good for them. Having a lot of people care for them, help them feel loved and cared for. For example, now that Dear Son is older, it’s a lot of work. Dad helps out by picking up all of Dear Son’s prescriptions, buying wipes, accepting delivery of supplies and picking up anything we need during the week, since I can’t get out of the house with Dear Son. At school, I have the nurse who cares for Dear Son, listen to his lungs each day, so that I know if he’s getting pneumonia. I also have them do other things such as massage his legs and other therapies. I have his bus aide help me with his outerwear (clothing) while on the bus. I have talked to him to make sure that Dear Son has his mittens on and scarf covering his mouth before he gets off the bus; I explained Dear Son’s prior history of pneumonia and how he can’t clear his airways, so now the bus aide, gladly helps. The bus driver, knowing Dear Son’s medical history, pulls up in our apartment driveway so that Dear Son has limited exposure to the cold. People want to help but sometimes you have to explain to them what they can do to help you. Asking for help and accepting help are still the two hardest things for me to do but I am finally learning to do both of them a little more, now that he is older.
And finally, it’s easy to become overwhelmed with the care that is involved in taking care of a severely disabled child. It’s a lot of work. I can remember stories from my mother on how hard my paternal Grandmother worked to take care of seven kids after her husband died when my Dad was only two years old. I don’t ever want people to remember me as a mother who had a burden in life. Instead, I always want to be remembered as the mother whose greatest joy and blessing in life was her son. I want my Dear Son to know that he is and will always be the apple of my eye and I hope I radiate to others that regardless of anything that is going on in my life, that my greatest joy is my Dear Son. When we shift our perspective from burden to blessing, we have the ability to offer our children amazing gifts in life. As you go through life with your child, there will be many opportunities where it will be easy to get discouraged. It will be up to you to be flexible enough to see through opportunities in a different light. And lastly, I always try to remember to look at life through my son’s eyes. I try to see what he sees, feel what he feels. When you do that, your own perspective is widened and you are opened to a tremendous internal growth. When I look at the person I was and look at the person I have become, I wouldn’t trade for a minute the new respect and compassion that I have for others. Seeing the journey of the disabled first hand, through my son’s eyes, have opened my heart in a way that is forever changed.
You can read Part I of the series here; Part I focuses on laying the foundation and getting organized.
You can read Part II of the series here; Part II focuses on building their self esteem, learning to communicate and mothering tips.
Tuesday, February 15, 2011
1) Talk to them.It can be awkward when your baby/child is small and when they are non-verbal, to talk to them. Often times, there is no response at all and it feels like a one way conversation. Talking to your child is one of the easiest ways to build receptive language which is nothing more than understanding language that is spoken to them. Our children are often in their own little worlds so we need to make our world, exciting and fun so they will want to be involved in it. Your conversations with them should be fun, upbeat, singsong like (helps increase memory) and they should describe what you are doing, or what is going on. If you are getting them dressed, you might talk about putting on their coat and mittens to keep little hands warm (I used to say we need to put on mittens because “little parts freeze fast!”), etc. You would talk about why they are getting dressed and where you are going. You might talk about who will be there and how much fun it will be. Be engaged with your child and talk all the time to them. This helps their language development. A therapist once told me the best thing I could do was to talk to Dear Son. After that, I never stopped, lol. Understand too, that the transition from their world to our world may take a long, long time. We never know what will click with our child. For my Dear Son, all of the talking helped him increase his receptive language. It wasn't until he was in a daycare setting at the age of ten years old, that I can say that he was honestly in our world 100% of the time. He was ten and the kids were pre-school age but he loved it. He loved the action, he loved when kids got in trouble, he loved it when kids played with him, etc. Our world was finally better than his and he was in a good place medically for all of that to come together. My point is that you have to keep trying to get there.
Although Dear Son couldn't sit in a regular chair, he could sit in a rocking chair with a high back and balance his head on the window to look out. He also used his feet to move the chair around.
4) Change Yourself Before You Change Them. When Dear Son was around five or so, I transitioned from part time to full time employment. Shortly thereafter, Dear Son started a new behavior. Every time I tried to lift him out of the car and into his wheelchair, he would bear down and try to sit on the ground. By this time, he was getting heavy for me and it was hard to get him to sit into the wheelchair/stroller instead of the ground. On one particular day, it had been raining and he was trying to sit on the ground. We had been to speech therapy after school and I had just stopped for an errand at the local mall and was running in with him to get some make up. He refused to sit in his chair and wanted to sit on the ground. When we got home that night, I thought about what had happened. I had started working again and my normal routine was to work a long day, come home and relieve the sitter, eat something and then play with Dear Son. That’s a long day for a little boy! Instead, I thought that maybe his behavior had to do with me and perhaps I wasn’t spending enough time with him. The next day, I changed my routine. I came home, scooped him up on my lap and gave him hugs and kisses and talked to him. He scooted off my lap when he had enough and I prepared my dinner. After dinner, I took him out for a long walk. His behavior stopped virtually overnight. The only thing different that I did was to change the order of what I was doing.
Dear Son at a theater outing enjoying the luncheon. His dress shirt had a special coating that repelled spills which was great to repel his drooling. You can see the dystonic movements in his hands.
Dear Son's nursery, back in 1991.
Sunday, February 13, 2011
Back then, I remember feeling woefully inadequate, not sure of what to do or how to do many things. I had a baby that didn’t meet any milestones, not only for the first year, but for a very long time. But the one thing that I knew for sure, what that I loved this baby more than anything and I was determined to do whatever I needed to help him be all he could be. At that time, I wasn’t quite sure what the future would look like, but with all of his challenges I knew that I needed to make sure that he felt good about who he was. I wanted him to have good self esteem. I wanted people to see him first and his disabilities second. I wanted people to love him, to adore him and for him to be happy. I wanted him to give and receive love. I wanted for him, what you want for any child…you want them to be happy and to feel good about who they are.
Fast forward nineteen years, and you can see the results. I have a happy and loving child who is a pleasure to be around, enjoys people, makes friends easily and genuinely feels good about who he is. He does not have nor has he had any behavioral issues. If you were to read over his teacher’s comments on his report cards, you would be hard pressed to find anything negative but instead read glowing comments about what a pleasure he is to have in class, how hard he works and oh yes, that infectious smile. That isn’t to say that there aren’t things that I could have done differently, but rather, that I did a lot of things right.
I thought it might be interesting to share them with other parents of severely disabled children. My goal is that perhaps some of these tips will make it easier for other parents and for their children. In addition, I’ll try to use examples to illustrate the concepts and also try to put them somewhat in the order that I learned them or implemented them.
Section I-Laying the Foundation-In this section, I talk about the key elements for raising a severely disabled child. These tips focus on being in the right place to help maximize your child’s development and to give them the greatest chance for success.
- This is the outfit that Dear Son wore on his first Super Bowl Sunday in 1992.
- Seek great medical care. Around the two month mark, I noticed some odd movements and on Super Bowl Sunday, took Dear Son to the emergency room. He had been having seizures and to make a long story short he was hospitalized for a few days and had an EEG done. The EEG was horrible. It was the first one that I ever saw and there were markings on the paper EEG that looked as if a child had scribbled as hard as they could from one side of the paper to the other. I didn’t know a thing about EEGs but my gut told me that this was probably not normal. We saw an adult neurologist who prescribed an adult medication (I didn’t know this at the time.) and set up a follow up appointment for three weeks. When Dear Son continued to have seizures at the hospital, I asked for a referral to a children’s hospital. At that time, I didn’t have any knowledge of the medical system and wasn’t even sure of what I was asking. Remember, this was twenty years ago and before the internet and back then, there weren’t as many disabled children, like there are today, or so it seemed. Anyway, they contacted the insurance and referred us to the best pediatric neurologists for seizures. They transported him by ambulance immediately and our journey began. (Back then, most PPO networks didn’t even break out physicians by pediatric specialties!) Dear Son was diagnosed, started on ACTH Therapy and was hospitalized for 3.5 weeks at Big Academic Medical Center. Over the years, I’ve learned that it’s important to have medical personnel who sees kids like ours. So the rule I invented was this: Your child should not be the worst patient the doctor sees that day nor should he be the worst (in medical terms) patient that he has in his practice. If he is, then you are not at the right place for your child. Ideally, you want a physician who has pediatric experience and who sees patients like your child all day and who has patients with severe disabilities and severe medical issues in his practice. In other words, you want a physician with experience with kids like yours.
- Move to where you need to be. When Dear Son was born, we lived in a state that had very few resources for children with disabilities. While I could access good medical care, there weren’t any therapy places that were close. I asked our pediatrician where the best place was for therapy for Dear Son and he told us. As a result, I sold our house and we moved our family within ten minutes of the Easter Seals and never looked back. Children with severe disabilities need all of the advantages that they can in life. Do your best to put yourself and your family in the best place for them to achieve success.
We sold our house in another state and built this one to be closer to the Easter Seals. We made changes to this home to accomdate Dear Son's disabilities. The builder made one change and raised the foundation 8 inches to eliminate the front step in the walkway. Also, all doors were changed to a 36 inch width to accomodate a wheelchair. Our home was featured on the front page of the Big City Newspaper at that time, regarding custom changes our builder was willing to make.
Section II-Get organized. One of the first things you’ll need to do is to get organized. The sooner you can do this the better. I developed these things over time and they have served me well. Getting organized has several benefits: It allows for faster and better medical care for your child, especially in an emergency since you can communicate the information faster (plus you won’t forget it the stress of an emergency). Second, it reduces stress for both you and the child. Stress can be a huge factor in a weakened immune system. Not only do you need to focus on keeping your child well, but you need to look at the long term aspect of learning things that will keep you in good health. And finally, being organized helps our children be less stressed since they don’t have to worry. We may never know what goes on in their little minds, plus they aren’t born with the capacity to think and reason like we do, so we need to make their lives easier.
- Be prepared. I have said this before but you need to create an emergency sheet, complete with diagnosis, allergies, medications and emergency numbers. If they are on a lot of medications, I keep a second sheet with the medications written out by time of day, so at 6 a.m. Dear Son takes these meds and doses, at noon, he takes such and such and the list goes on. Being prepared means keeping an emergency bag with medications, diapers, etc. basically anything you need to feed them, give medications or to change them. The emergency bag should be on the wheelchair at all times and go with you wherever the wheelchair goes. The purpose of being prepared is so that you can be ready for an emergency with your child. Having an emergency information sheet allows your child to get faster and better medical care. The goal of being prepared is so that you can offer the best care for your child and make your child comfortable. At school, this means that taking the time to make sure there is an extra feeding tube in his emergency bag, means that if the tube breaks at school, your child can still eat and doesn’t have to wait for you to show up at school with the new tube before he has his lunch. If you are taking a longer drive and it’s near lunchtime, take his medications and some food in case there is an accident on the highway, the kind where you are stuck in traffic for three hours. That way, if the unforeseen happens, you have their medications and you have avoided a disaster. Ditto for medical appointments near lunch. I take meds with and then give them at the facility so I don’t have to worry about making it home on time to give medications. Medications at proper intervals keep your child comfortable. If I have learned anything, it is, always plan for the unexpected.
- Allow enough time when getting them ready. I have a little tool that I use that makes my life easier. I only wish I would have realized it earlier. When I get Dear Son ready, whether it’s ready for an appointment or just getting him ready for school, I allow plenty of time. I get everything prepared the night before-get bags packed, lunches packed, wheelchair inside and ready to go for the next day. On the day of the event, I use the 15 minute rule. I allow 15 minutes per task. For example, when I get him ready for school in the morning, I allow 15 minutes to get his meds (preparation and giving them), 15 minutes to get him dressed, 15 minutes to get him in the hoyer lift and in his wheelchair, 15 minutes for grooming and 15 minutes to get his coat/scarf/gloves on for school. That way, if anything else comes up in the morning, I have enough time built in and I don’t have to rush.
- Pave the way to make their day easier. One of the things I do at the beginning of every school year is to type up a list of things that would make caring for Dear Son easier at school. This includes information about feeding him, changing him, location of emergency supplies, etc. It should also include little nuances or for kids who can’t speak, what their vocalizations mean. For Dear Son, he might vocalize to get them to “hurry up” and feed him faster. On the first day of school, I send this letter to the teacher. They tell me that it’s really helpful and that none of the other parents send a letter. The letter gives them information that helps them take care of Dear Son. Yes, they could do it without my letter, but it makes for a smoother day for Dear Son. Also, it gives them some guidelines. For example, I am a single mother and can’t always run to the store that evening. When I get a note that they need diapers, if I didn’t have an extra package, that might mean I’d have to go to the store. Instead, I tell them to send me the note when Dear Son is running low. That way, I have a day or two to get the diapers they need. It makes all of our lives better. I get them the diapers they need, Dear Son doesn’t run out of diapers at school and I don’t have to run to the store after working full time all day and then get Dear Son dressed and to the store for a diaper run.
You can read Part II here: Part II of III: Building their Self Esteem, Learning to Communicate, Mothering Tips
Note: Dear Son is nineteen years old and suffers from seizures, dytonia and severe developmental delay as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disorder.
Sunday, February 06, 2011
The first part was making homemade poppy seeds buns. I use a recipe from a bread making book for the hamburger buns then mix the dough using the dough setting on my Zojirushi bread machine. After nearly two hours, the dough is done. Once that has completed, I remove the dough, punch it down and let it rise again. Once that happens, I’ll cut the dough with a dough cutter, then mold it into buns. Next, it will rise for another hour. After that, I’ll mix up an egg white wash, made with my favorite organic eggs from Vital Farms. Vital Farms eggs are pasture raised eggs and humanely raise their chickens. In addition to that, they are by far the best tasting eggs I have ever had. I use that for an egg wash and then followed it up with some poppy seeds on top. Normally I like to use golden flaxseed on top but I was out so I used the poppy seeds instead. I baked them in my Breville Smart Oven which is a toaster/convection oven. What I love about this oven is it’s small size. It’s great for one or two people and more importantly, it takes up less space, uses less energy than heating up a full size oven and it’s much easier to clean. I call it my Easy Bake Oven, lol. Here they are all baked.
Once the ground sirloin is cooked, it's added to the slow cooker with a few other ingredients and then placed on low for all of the flavors to meld together. Next are the onion rings. I choose oven baked onion rings to go with the sloppy joe’s. I like onion rings but am not too excited about frying anything. If you eat fried foods in a restaurant, they often reuse the oil, which can be toxic once it’s reheated. If you make it at home in those electric fryers, they are made from plastic which leach BPA into your food. I don’t know about you, but none of that appeals to me. I chose to bake mine. They are fairly simple to make. I started with an organic sweet onion, sliced it up, dredged it in a flour salt and pepper mixture, dipped it in an egg white wash, then dipped them in some home made bread crumbs. If you are making your own bread, it’s pretty simple to take a slice or two and chop it into bread crumbs in your food processor. It’s amazing how much more flavor you have when you make your own bread crumbs.Once those are baked, then comes the easy part. Putting it all together and enjoy it. I hope you enjoyed my Super Bowl Menu. Coming in the next few weeks will be my kitchen reveal. I ordered a few more things this weekend so I am just waiting for everything to arrive. In the meantime, you can check out other kitchen products that I like by clicking here or just clicking on the store button at the top of the blog. Once you open that link, it will list the kitchen products that I recommend with some reasons as to why I think they are superior to other products.
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