I have watched my son's stomach grow and grow over the last several months. I have assumed that this is due to his constipation being worse and so I have tried to be more and more consistent with our bowel regimen and to switch things up a bit. He has had some minimal relief but not enough to ease my anxiety or the tightness of his shirt. It's hard to explain the pain a mother feels when she finds out her child is disabled or the pain she feels as she sees this disability cause him to struggle in life. It's hard to explain the pain you feel when your child stumbles over and over and in time you learn to "get used to it" or ignore it. Watching him fall to his knees used to make my heart drop in pain. Now there are times when other people are more considerate of him than me. I have to let the pain go or it controls me.
This is a new heart dropping pain. I knew he was gaining weight but when we went to spina bifida clinic and they put a number to it, it was hard to hear. 20 lbs in 9 months! The rest of the family eats the same thing. We haven't gained any extra weight. Why, oh, why does he? The dietician tried to help us examine our lives. "Is he eating his veggies, is he drinking lots of juice, is he active, is he on a schedule, what does he eat at school, what does he eat at home?" It felt like too much to bear. Someone dissecting my life. I felt threatened. I knew my son was gaining weight and fast. I wasn't sure what to do about it. He is so used to being bloated I wonder if he knows when he is full but can you really limit a 7 year olds portions? I didn't feel right doing that. He is a growing boy and I know several boys that gained weight at this age. Still my concern grew. He already struggles to walk. Will his knees and legs be able to handle the added weight?
The dietician went on. This time with suggestions. More veggies, two servings of veggies but only one serving of the main dish, less carbs, more daily activity, wheelchair sports, etc., etc. I knew she was trying to be helpful. Every other year at clinic I always had lots and lots of questions but that day she had hit a sensitive spot. I was so upset I couldn't even be polite, I just tolerated her and what felt like her stabs at my motherhood. It was all so personal. I had already dealt with this struggle inside and come up short. I knew the answers and real life were in conflict. I worried there would be fights about food; never a healthy thing. I worried about starving my child. All I could do was continue to go on and keep things normal. The only changes we made were to make sure all of the children were drinking plenty of water. Once in a while we would tell our son that he had, had enough food (if he had at least 3 servings or 2 large servings) but even this concerned me.
The option to eat more veggies and less of the main dish is a good option. Veggies just aren't as filling and he is after all a growing boy, but it is an option that we are going to start implementing and just play it by ear. My heart aches as I button up his shirt and the shirt bunches up. My heart aches as I see him out of breath after a short bout of running. My heart aches as I see him sitting down and his belly scrunches up. If I knew this was only a phase and not a way of life I would be okay. I could handle it. Weight gain is never healthy but for him it means a lot more disadvantage. Possibly the difference between being wheelchair bound or not. I'm surprised at how deeply this affects me and therefore worried to put too much focus on it, or he will feel my anxiety as well and that will only compound the problem.
I'm trying. I really am but sometimes, not trying, is better. At least while you get your bearings and let go of the emotion that makes things so difficult for you. I know I need to figure out why this hits home so hard and after I do that I can tackle trying to help my boy be back to a healthy weight but first I need to figure out my issues that are weighing me down before I can help him with his.
kids 2014
Friday, December 26, 2014
Why I homeschool
It's November 25th. I started to feel impressed it was time to homeschool my kids again about two weeks ago. I pulled my son out of kindergarten in December of 2012 and homeschooled him all the way through first grade, except the last 5 weeks of school, I knew at that time that I would be sending him to public school for 2nd grade and wanted the school to have a chance to get to know him and his limitations and what accommodations he would need because of his disability. So I was surprised when many of my concerns from last time I felt impressed to homeschool came up. Though not as intense as they had come up previously.
I wondered..."Am I smart enough? Can I stick to a schedule? What type of curriculum should I use? Will it be expensive to homeschool? What will his aunts, uncles and grandparents think? What will my friends and neighbors think? What if he is behind and I don't know it? Would I be a good teacher? Will he listen to me?" Among the concerns were thoughts if it truly was inspiration that I needed to homeschool. I thought..."He is happy at school. I like his teacher, he is doing well socially and academically. He has friends, he LIKES school." That's the one that got me most "He LIKES school." Previously I had thought that people homeschooled because they had a problem with the school but we thought school was just fine. Sure there were kinks to work out because of his special needs but they were minor, nothing to pull him out of school for. In time I got up the courage to pull him out of school, it took me 5 months! (I had, had the thought to homeschool before he even started school).
We started out playing games and building things to help his fine motor skills. Over time I found phonics books, handwriting books and math books. We used these and supplemented them with games and crafts. When I wasn't sure what to teach I just pulled out the math book and I would know he was supposed to be learning coins, or place values etc. As time went on I saw my little boy come back alive. Instead of just laying on the floor for quiet time he would build things and for the first time in 3 years he played with toys and for the first time in his life he would pretend. Before this I would watch my twins play and their pretend play was evolving. His was not, and I tried to tell myself he just wasn't interested in pretending but I knew this should be a natural process of a child's development. I felt such relief to see his play evolve and his creativity emerge. It was like he finally had a voice and confidence.
I am not sure if there was anything wrong at school per say. It's possible he heard kids whispers about his disability but kids are so accepting at that age, I doubt that was the true issue. The first few years of his life were difficult. There were lots of changes and moving and it lacked consistency and stability. I think he needed some time at home where he was loved and accepted and time where life was a little more still. He needed the things only a mother says or does. He needed individual attention. As I prayed about what I needed to focus on most with homeschooling I was told that I needed to build his confidence, so as we would do school I was very careful to be patient and soft with him, a trait that carried over into our everyday life. He just needed to know that he was okay and that his world was safe and stable.
No matter how good a public school is he would not have gotten that from attending public school. I am grateful that I trusted in my maternal instincts and got over my fear. I heard a quote last night as my children and I watched Princess Diaries 2
“Courage is not the absence of fear but rather the judgment that something is more important than fear."
In time I came to realize that my son needed me to homeschool and that the Lord knew my limitations. So if he said it was what needed to be done, then I had better not argue. So this time, I am feeling impressed again to homeschool. School is going great, even better than kindergarten did. We love the principal and the people that take care of his toileting needs. Him and his sisters have friends and I always hear kids yelling their names to say hi. My son is behind but he is quickly progressing. We are seeing some patterns that normally go along with spina bifida such as slow processing but that is to be expected and not something the school is doing wrong. We love the kids teachers. Carl James loves the chance to eat lunch at school and all of the children love recess. All seems well in their world but I am not one to argue with inspiration (okay well at least not for long :)) So this time, I am doing my research. I am reading books about homeschooling and learning different approaches to homeschooling. I am engrossing myself in the homeschooling philosophy and the homeschooling mindset.
One thing I read is that in essence "Homeschooling at it's heart is parenting. When we become parents we are responsible for helping our children grow into healthy and responsible adults. That's a big responsibility! When you first became a parent you didn't know whether you could do it. Yet you did and you are." (this is a very watered down version of what Lisa Rivero says in her book "The Homeschooling Option") If you speak to a homeschooling veteran you will often hear the same thing "Trust your child's innate desire to learn, don't worry about whether they are behind or ahead, each child learns at their own pace." I am learning to appreciate the learning process and to guide it rather than try to control it. Maybe in time I will learn to be lead by it. :)
All I know is homeschooling worked for me and works for many other people. I was homeschooled as a child and I attribute my confidence and self awareness to being homeschooled. When I finally entered public school (in Jr. High) peer pressure was a non issue to me. I knew who I was and who I wanted to be. Nobody could change my core beliefs and core attributes. Something in my heart is being called out to homeschool. I may not understand exactly why homeschooling works. I don't have the luxury of having 20 years of experience doing it and therefore knowing without a doubt that it works but in my heart I know there is good in it and for us it is a good fit.
This was one of those moments that I knew homeschooling was the right choice. My son for the first time in a long time initiated a game all by himself. He took these hangers and did a monkeys in a barrel type of construction. It might seem really small and insignificant but when you have a child that used to be very hands on and interested in the mechanics of things and then suddenly he isn't doing that anymore and he isn't pretending it's very disconcerting. This picture was taken a few months after we had been homeschooling and I had seen small but significant changes in his confidence and his ability to deal with or handle unpleasant situations.
I wondered..."Am I smart enough? Can I stick to a schedule? What type of curriculum should I use? Will it be expensive to homeschool? What will his aunts, uncles and grandparents think? What will my friends and neighbors think? What if he is behind and I don't know it? Would I be a good teacher? Will he listen to me?" Among the concerns were thoughts if it truly was inspiration that I needed to homeschool. I thought..."He is happy at school. I like his teacher, he is doing well socially and academically. He has friends, he LIKES school." That's the one that got me most "He LIKES school." Previously I had thought that people homeschooled because they had a problem with the school but we thought school was just fine. Sure there were kinks to work out because of his special needs but they were minor, nothing to pull him out of school for. In time I got up the courage to pull him out of school, it took me 5 months! (I had, had the thought to homeschool before he even started school).
We started out playing games and building things to help his fine motor skills. Over time I found phonics books, handwriting books and math books. We used these and supplemented them with games and crafts. When I wasn't sure what to teach I just pulled out the math book and I would know he was supposed to be learning coins, or place values etc. As time went on I saw my little boy come back alive. Instead of just laying on the floor for quiet time he would build things and for the first time in 3 years he played with toys and for the first time in his life he would pretend. Before this I would watch my twins play and their pretend play was evolving. His was not, and I tried to tell myself he just wasn't interested in pretending but I knew this should be a natural process of a child's development. I felt such relief to see his play evolve and his creativity emerge. It was like he finally had a voice and confidence.
I am not sure if there was anything wrong at school per say. It's possible he heard kids whispers about his disability but kids are so accepting at that age, I doubt that was the true issue. The first few years of his life were difficult. There were lots of changes and moving and it lacked consistency and stability. I think he needed some time at home where he was loved and accepted and time where life was a little more still. He needed the things only a mother says or does. He needed individual attention. As I prayed about what I needed to focus on most with homeschooling I was told that I needed to build his confidence, so as we would do school I was very careful to be patient and soft with him, a trait that carried over into our everyday life. He just needed to know that he was okay and that his world was safe and stable.
No matter how good a public school is he would not have gotten that from attending public school. I am grateful that I trusted in my maternal instincts and got over my fear. I heard a quote last night as my children and I watched Princess Diaries 2
“Courage is not the absence of fear but rather the judgment that something is more important than fear."
In time I came to realize that my son needed me to homeschool and that the Lord knew my limitations. So if he said it was what needed to be done, then I had better not argue. So this time, I am feeling impressed again to homeschool. School is going great, even better than kindergarten did. We love the principal and the people that take care of his toileting needs. Him and his sisters have friends and I always hear kids yelling their names to say hi. My son is behind but he is quickly progressing. We are seeing some patterns that normally go along with spina bifida such as slow processing but that is to be expected and not something the school is doing wrong. We love the kids teachers. Carl James loves the chance to eat lunch at school and all of the children love recess. All seems well in their world but I am not one to argue with inspiration (okay well at least not for long :)) So this time, I am doing my research. I am reading books about homeschooling and learning different approaches to homeschooling. I am engrossing myself in the homeschooling philosophy and the homeschooling mindset.
One thing I read is that in essence "Homeschooling at it's heart is parenting. When we become parents we are responsible for helping our children grow into healthy and responsible adults. That's a big responsibility! When you first became a parent you didn't know whether you could do it. Yet you did and you are." (this is a very watered down version of what Lisa Rivero says in her book "The Homeschooling Option") If you speak to a homeschooling veteran you will often hear the same thing "Trust your child's innate desire to learn, don't worry about whether they are behind or ahead, each child learns at their own pace." I am learning to appreciate the learning process and to guide it rather than try to control it. Maybe in time I will learn to be lead by it. :)
All I know is homeschooling worked for me and works for many other people. I was homeschooled as a child and I attribute my confidence and self awareness to being homeschooled. When I finally entered public school (in Jr. High) peer pressure was a non issue to me. I knew who I was and who I wanted to be. Nobody could change my core beliefs and core attributes. Something in my heart is being called out to homeschool. I may not understand exactly why homeschooling works. I don't have the luxury of having 20 years of experience doing it and therefore knowing without a doubt that it works but in my heart I know there is good in it and for us it is a good fit.
Saturday, December 13, 2014
Celebrating poop
When you have a child with spina bifida your whole life seems to revolve around poop or the lack of it. For those of you that have suffered with constipation or had a child that has suffered with constipation you will be able to appreciate this post much more fully than those who have not. :) My son, who is now 7, has spina bifida, part of having spina bifida is having what is called a neurogenic bowel. Basically the natural peristalsis of the bowel is severely impaired or nonexistent. Most children with spina bifida need to be on a daily laxative along with daily suppositories or enemas, or cone enemas which is basically irrigating the bowel to produce a bowel movement.
Carl James has been suffering with constipation pretty much since I started supplementing nursing with formula. Breast milk is a natural laxative but as soon as we added even a little bit of formula he started to get constipated and it has only worsened over time. We recently went to the doctor and they told us since March he has gained 20 lbs (it's December right now). I had noticed over the last several months that his stomach just kept growing and the constipation was getting worse and worse. We have been in contact with the spina bifida clinic and changing his bowel regimen but it is a slow process and an adjustment in schedule which always takes time to implement. So I was and am curious how much of that 20 lbs is dried up fecal matter.
His regimen now is to take 1 1/2 pills of Senna every night and then do the cone enema in the morning. Here is what the system looks like.....
Carl James has been suffering with constipation pretty much since I started supplementing nursing with formula. Breast milk is a natural laxative but as soon as we added even a little bit of formula he started to get constipated and it has only worsened over time. We recently went to the doctor and they told us since March he has gained 20 lbs (it's December right now). I had noticed over the last several months that his stomach just kept growing and the constipation was getting worse and worse. We have been in contact with the spina bifida clinic and changing his bowel regimen but it is a slow process and an adjustment in schedule which always takes time to implement. So I was and am curious how much of that 20 lbs is dried up fecal matter.
His regimen now is to take 1 1/2 pills of Senna every night and then do the cone enema in the morning. Here is what the system looks like.....
I start by having my son remove his diaper and sit on the toilet. Then I fill the bag up with 500 cc of water and add 1tsp salt. Then I lubricate the cone and insert it in and open the valve to let the water flow. We leave the cone in for a while to allow the stool to soften and then we remove the cone and have him push.
This is where we hang the bag. It's nice décor don't ya think? ;)
We have been doing this off and on for a couple of years but in the last few months it has been a daily routine. He wasn't receiving any relief and so we changed things up and still was only receiving minimal relief. So here is the part I am excited about....I have always thought that sitting on the toilet (working against gravity) was counterintuitive but I knew he would whine and complain about laying down in the tub but it was finally worth the fight. So I looked online for cone enema solutions. I was surprised to find many. As I was scrolling I found one that involves using lemon juice. When I am feeling a little sluggish I do something called a liver cleanse which is
The 1 Tbsp of Fresh Lemon Juice
1 drop of Lemon oil
1 drop of Peppermint oil
I always go running to the bathroom half an hour after this. So I figured lemon just made sense. So we changed our routine a little and had him lay in the tub on his left side. I added the juice of one small lemon to his cone enema bag and we also decided to wait a full 5 minutes before pulling the cone out. At first there were not much results and so we decided to move onto his morning bath but then we realized we needed to move to the toilet and wow!!!! Can I just say WOW! Never have I been so happy to have a clogged toilet! It seems silly to be happy over a bowel movement especially a large smelly one but I was in tears!!! It had been so long and he has been so bloated. The doctors said the x-ray (of his bowels) looked good and he had hardly any stool in there but my mommy gut new better. You shouldn't be able to watch someone's stomach grow over months (unless they are pregnant). He shouldn't fit into pants one week and then not the next.
If anything, my child having spina bifida has helped me appreciate the small things in life. Even if it is that I have the ability to relieve myself regularly :)
(I apologize to those of you that were offended or grossed out by this but I know we are not the only ones suffering this fate and I wanted to post not only my success but also my gratitude for something finally working!)
Tuesday, December 9, 2014
I am done
I am done. The house is a mess. There is laundry to fold. The kids are tired and whiney. I just got done volunteering at the daycare at a gym so that I can get free daycare when I go workout. The kids are hungry again even though we ate dinner before we went to the daycare. When we went to leave the daycare Jaidyn didn't want to leave and refused to put on her coat and shoes and suddenly thought she needed to wash her hands. When I wouldn't let her she then decided she needed to put on her shoes. I practically had to drag her to the car. I left the library books there since I was distracted fighting with her and I was almost home when I realized I didn't have them, so we drove back because I figured library books at a daycare with toddlers was probably a bad idea.
Now that we are home there are kids begging to sleep in my room, my son needs laxative and a diaper change but he is so tired he doesn't want to deal with it. I'm looking at the house thinking "Clean so I can have a fresh start tomorrow or go to sleep so I can wake up refreshed?" Decisions, decisions. I don't want to clean. I am done. At least until tomorrow. I will wake up again, start the day again. Kind of reminds me of the movie "Live, Die, Repeat." Pretty much sums up a mothers day, right? ;)
Now that we are home there are kids begging to sleep in my room, my son needs laxative and a diaper change but he is so tired he doesn't want to deal with it. I'm looking at the house thinking "Clean so I can have a fresh start tomorrow or go to sleep so I can wake up refreshed?" Decisions, decisions. I don't want to clean. I am done. At least until tomorrow. I will wake up again, start the day again. Kind of reminds me of the movie "Live, Die, Repeat." Pretty much sums up a mothers day, right? ;)
Subscribe to:
Posts (Atom)