With homeschooling, the
benefits are wonderful. Benefits
start with the health issues of course. Since we started, TLC has had very few breakouts
to deal with, fewer sprains and less stress.
Your
child is able to take learning at their own pace. They can be quick at learning
or can slow it down. In our state the only two requirements state that
we must be in a homeschool cover and that the children must attend
school 170 days a year. A day is defined as four hours. Most often
times the work is done in two hours or less and the rest of the time can
be spent on practice problems, "homework," or field trips. A school year is defined as
August to July.
You can easily take days off when the kids are sick and start right back a day, two days or a week later.
You can go on vacation whenever you like.
As
long as you include the basics, English, Math, Science and History,
you can teach anything you want and how you want. Public Schools teach
for the SAT/ACT tests. The teaching is usually rushed and is usually
geared regardless of the slowest child in the class. With
homeschooling, you can teach them the way we grew up learning, breaking
it down and knowing the details.
If
your child does not understand a topic and does not do well on a test,
you can do the topic over again or do the test over again once the
problem areas are worked out.
The
cost does not have to be very high. You do not have to teach. As a
matter of fact, with the exception of Algebra, I do not teach, the
software does. Also, I do not have to be present, I work 8 hours a day.
Mind you, my daughter is much older and loves to learn so I know she
doesn't get distracted doing other things. The software also helps just
in case I am not sure. I also break her four day down into two
segments. She works two hours by herself in the morning and I work with
her for two hours in the evening.
Lack
of socialization is not a problem either. With the right homeschool
cover, church activities or other activities that you participate in,
kids are well socialized. You could arrange for kids to come to the
house to play.
Homeschooling
is no where near as scary as it seems. You and the child will need
dedication and commitment to set apart time during the day and stick
with it everyday possible. If you get backed up, be committed to get
caught up during the summer or when time is available during the regular
school year.
You can do it, it can be done in an affordable way and the kids will love it!!!
Sunday, April 28, 2013
Live and Let Live
Having a child with a life threatening condition is scary. A parent worries about every environment where the child exposed. Preparation and planning are important for every trip.
In the early days of being diagnosed, we were very protective of our daughter. In part because we did not know what we were dealing with. Also, she was be putting on meds that did not always help. We slowly learned that others were not as protective of her when she was outside of our care, no matter how much we prepared them. Yet, there was fear, fear of not knowing what would come. All the what if's.
We did not live in some far remote area where we could be in a cabin for half a year and have no where to go the other half. We were in a sizable city and very active. Our child was a social butterfly, she had experienced eight years of being out and about, being social prior to her development of Cold Induced Urticaria.
Because of her diagnoses and the limitations that come with them, she became a prisoner in her own home. She could only be out when her father and I could be around. She even had to be homeschooled. Her only opportunity to be socialized was at church, during the Miracle League season and through her violin lessons. She went from being very outgoing prior to the health issues, to being withdrawn. Her hope for getting better was gone. In just a couple years, her childhood was gone.
We were able to get her on medications that helped stabilize her conditions. We decided to allow her to live as a child and not as a prisoner; as much as reasonably possible.
Swimming - A big no, no! Yet, she can swim for up to 30 minutes at a time in an unheated pool while on her meds. On a 100 degree or higher day, she can swim for an unlimited amount of time. We still have to go through a routine when she comes out of getting her dried off immediately. However, she got to be involved, she got to be a child. We even take trips to the beach (rarely) where we just sit on the beach, no swimming. She still gets the excitement of building sand castles and digging holes in the sand, chasing the birds.
Sports - This one is a biggy. It impacts her on every front. However, with the support of those in charge, modifications, sports can be safe. We chose to allow TLC to participate in the Miracle League. She is able to play baseball each spring. With her team, kids can play when they are able and don't have to worry when they can't. If TLC has to leave mid game, she can. No problems.
Shopping - The doctors were completely against us buying a wheelchair for our daughter who has Orthostatic Intolerance with severe blood pooling and Ehlers Danlos. However, since we bought it, she has been involved in every facet of life, once again.
Trips out of town - Wow this is a big one. Put in someone else's care when we as parents cannot be around. This one is still hard, because it depends on the willingness of those in charge of watching the kids to ensure her safety. Some just don't get it. But if you get to send one off with your child that gets it - WONDERFUL! If we don't have enough faith and can make the trip, we will go with her on out of town trips. She doesn't make every trip, but some. ANGER ALERT! We as parents should not have to be with our child on every trip because other adults don't want the worry.
In every case we are careful. We plan and strategize and prepare for safety, but we choose to live, we choose to let our daughter live. We gave our daughter her life back. She is okay with it and understands that there are consequences. She accepts the consequences from overdoing it. But she is happier - she gets to be the child (ahem - teenager) she was meant to be.
In the early days of being diagnosed, we were very protective of our daughter. In part because we did not know what we were dealing with. Also, she was be putting on meds that did not always help. We slowly learned that others were not as protective of her when she was outside of our care, no matter how much we prepared them. Yet, there was fear, fear of not knowing what would come. All the what if's.
We did not live in some far remote area where we could be in a cabin for half a year and have no where to go the other half. We were in a sizable city and very active. Our child was a social butterfly, she had experienced eight years of being out and about, being social prior to her development of Cold Induced Urticaria.
Because of her diagnoses and the limitations that come with them, she became a prisoner in her own home. She could only be out when her father and I could be around. She even had to be homeschooled. Her only opportunity to be socialized was at church, during the Miracle League season and through her violin lessons. She went from being very outgoing prior to the health issues, to being withdrawn. Her hope for getting better was gone. In just a couple years, her childhood was gone.
We were able to get her on medications that helped stabilize her conditions. We decided to allow her to live as a child and not as a prisoner; as much as reasonably possible.
Swimming - A big no, no! Yet, she can swim for up to 30 minutes at a time in an unheated pool while on her meds. On a 100 degree or higher day, she can swim for an unlimited amount of time. We still have to go through a routine when she comes out of getting her dried off immediately. However, she got to be involved, she got to be a child. We even take trips to the beach (rarely) where we just sit on the beach, no swimming. She still gets the excitement of building sand castles and digging holes in the sand, chasing the birds.
Sports - This one is a biggy. It impacts her on every front. However, with the support of those in charge, modifications, sports can be safe. We chose to allow TLC to participate in the Miracle League. She is able to play baseball each spring. With her team, kids can play when they are able and don't have to worry when they can't. If TLC has to leave mid game, she can. No problems.
Shopping - The doctors were completely against us buying a wheelchair for our daughter who has Orthostatic Intolerance with severe blood pooling and Ehlers Danlos. However, since we bought it, she has been involved in every facet of life, once again.
Trips out of town - Wow this is a big one. Put in someone else's care when we as parents cannot be around. This one is still hard, because it depends on the willingness of those in charge of watching the kids to ensure her safety. Some just don't get it. But if you get to send one off with your child that gets it - WONDERFUL! If we don't have enough faith and can make the trip, we will go with her on out of town trips. She doesn't make every trip, but some. ANGER ALERT! We as parents should not have to be with our child on every trip because other adults don't want the worry.
In every case we are careful. We plan and strategize and prepare for safety, but we choose to live, we choose to let our daughter live. We gave our daughter her life back. She is okay with it and understands that there are consequences. She accepts the consequences from overdoing it. But she is happier - she gets to be the child (ahem - teenager) she was meant to be.
Sunday, April 14, 2013
Emergency Kit for Cold Urticaria
Things that we carry with us in the event of an emergency on the road or out and about.
My daughter cannot use an Epi pen due to her high heart rate from the Dysautonomia. If you have that, put it number one!
1. Medical Bracelet - We use a USB bracelet that self installs on any computer.
2. Information Sheet - We put all her diagnoses, meds, doctor names and contact numbers, allergies, special instructions such as warming all IV fluids, prior surgeries and other pertinent information for an Emergency trip to the hospital.
3. A coat - this goes everywhere with us. We use a hoodie during the summer.
4. Hat, scarf and gloves goes everywhere during the winter.
5. A blanket - This stays in the vehicle for use while out and about. We use it at the doctor's office often where it is usually cold.
6. Hot Hands - This is a brand of hand warmers that when exposed to air gets really hot and lasts for ten hours.
7. Extra meds - keep labeled bottles in your purse or vehicle for those emergency needs.
8. Umbrella - Seems obvious, but easy to forget.
9. A change of clothes if there is any chance of getting wet.
If you allow your child the opportunity to swim, one parent on the FB group Parents of Children with Cold Urticaria recommended heating blankets in the drier and putting them in an insulated tote. The towels stay warm for a long time.
My daughter cannot use an Epi pen due to her high heart rate from the Dysautonomia. If you have that, put it number one!
1. Medical Bracelet - We use a USB bracelet that self installs on any computer.
2. Information Sheet - We put all her diagnoses, meds, doctor names and contact numbers, allergies, special instructions such as warming all IV fluids, prior surgeries and other pertinent information for an Emergency trip to the hospital.
3. A coat - this goes everywhere with us. We use a hoodie during the summer.
4. Hat, scarf and gloves goes everywhere during the winter.
5. A blanket - This stays in the vehicle for use while out and about. We use it at the doctor's office often where it is usually cold.
6. Hot Hands - This is a brand of hand warmers that when exposed to air gets really hot and lasts for ten hours.
7. Extra meds - keep labeled bottles in your purse or vehicle for those emergency needs.
8. Umbrella - Seems obvious, but easy to forget.
9. A change of clothes if there is any chance of getting wet.
If you allow your child the opportunity to swim, one parent on the FB group Parents of Children with Cold Urticaria recommended heating blankets in the drier and putting them in an insulated tote. The towels stay warm for a long time.
To Medicate or Not to Medicate
I grew up in a military family that traveled the world over. We did not stay in any one location for long. We saw our grandparents, aunts, uncles and cousins once every few years. We really didn't know anyone all that well or know them for long. No one in the immediately family had to take a maintenance medication. When we did get sick, the military prescribed ibuprofen and antibiotics for everything.
When my daughter first started having hives prior to a diagnosis, she was put on five different medications all at once. She had to take every medication every day to prevent the hives. We quickly took her back to the doctor each time one proved to not work or made her feel worse. We went back so many times that the doctor finally told us there was nothing else he could do for her. She either lived with the side effects or lived with the hives.
After six months we found an over-the-counter antihistamine that made a significant difference in preventing reactions. Unfortunately it was not enough, but by this time we knew what she was allergic to, Cold. Within a couple months later, a second off-label medication was added. The two meds together changed our lives. My daughter was able to leave the house more frequently and for longer periods prior to breaking out. As parents, our world no longer revolved around crisis management strategies.
For the first three years I was bound and determined that the doctors would test for every cause to Cold Urticaria and confirm or rule out whether or not we could find her trigger. There were times that we thought the meds were working to cure her and would attempt to take her off of them. Like a headache, the meds were supposed to be a cure. Sadly, she continued to react. We found that during the summers she was more tolerant of cold that she was in the winter.
We did not want her on this medication all the time. I did not want to imagine the damage that these drugs could do long term. My daughter was on a medication as a baby for a long period for stomach issues. After a couple years, the drug was removed from the market as it was killing babies that used it long term. I no longer trusted drugs, other than Tylenol and Advil. The doctors were frustrated with us trying to wean her off hoping she was cured. We were frustrated with them for not doing more to prevent her symptoms.
She never could be removed from her meds. Not only did she have severe physical reactions, but psychological reactions as well. She has been on them for seven years now. They have truly made a difference in her ability to function and be functional in her environment. She still has breakthrough reactions, but nowhere as severe as she did without the meds.
Prior to the controlling meds, she had three anaphylactic reactions. She has had none since. The meds do not mask her reactions, but actually prevents them. It delays the reaction time and allows us the opportunity to prevent more severe reactions. They allow us the time to get her to a safer environment.
Should you medicate your child? It is a hard decision, but a necessary one. I hope my experience will help you in making that decision.
When my daughter first started having hives prior to a diagnosis, she was put on five different medications all at once. She had to take every medication every day to prevent the hives. We quickly took her back to the doctor each time one proved to not work or made her feel worse. We went back so many times that the doctor finally told us there was nothing else he could do for her. She either lived with the side effects or lived with the hives.
After six months we found an over-the-counter antihistamine that made a significant difference in preventing reactions. Unfortunately it was not enough, but by this time we knew what she was allergic to, Cold. Within a couple months later, a second off-label medication was added. The two meds together changed our lives. My daughter was able to leave the house more frequently and for longer periods prior to breaking out. As parents, our world no longer revolved around crisis management strategies.
For the first three years I was bound and determined that the doctors would test for every cause to Cold Urticaria and confirm or rule out whether or not we could find her trigger. There were times that we thought the meds were working to cure her and would attempt to take her off of them. Like a headache, the meds were supposed to be a cure. Sadly, she continued to react. We found that during the summers she was more tolerant of cold that she was in the winter.
We did not want her on this medication all the time. I did not want to imagine the damage that these drugs could do long term. My daughter was on a medication as a baby for a long period for stomach issues. After a couple years, the drug was removed from the market as it was killing babies that used it long term. I no longer trusted drugs, other than Tylenol and Advil. The doctors were frustrated with us trying to wean her off hoping she was cured. We were frustrated with them for not doing more to prevent her symptoms.
She never could be removed from her meds. Not only did she have severe physical reactions, but psychological reactions as well. She has been on them for seven years now. They have truly made a difference in her ability to function and be functional in her environment. She still has breakthrough reactions, but nowhere as severe as she did without the meds.
Prior to the controlling meds, she had three anaphylactic reactions. She has had none since. The meds do not mask her reactions, but actually prevents them. It delays the reaction time and allows us the opportunity to prevent more severe reactions. They allow us the time to get her to a safer environment.
Should you medicate your child? It is a hard decision, but a necessary one. I hope my experience will help you in making that decision.
Saturday, March 30, 2013
Ask Me a Question and I Will Tell You No Lies
Other people's reactions to our coping mechanisms for my daughter's conditions are expected, they are welcomed, they are innocent, but it does not change how they can sometimes embarrass us or remind us of how imperfect we are.
Several years ago, I was the family provider for my husband's grandmother. I had a wonderful job that allowed me to take off quite easily when needed. One day she was taken to the hospital. We got up early in the morning to make the two hour trip to the hospital. We took care of all of the paperwork and asked the questions that were needed and got her taken care of. At one point, a nurse walked in and saw my daughter all curled up in a chair attempting to go back to sleep. She made a big deal about it. She was loud and got other people involved in the moment. She reminded my daughter how young she is and that children of her age should be bouncing with energy. To any other child in any other family, everyone would agree, chuckle and move on.
My daughter's condition demands much of her energy and time. The autonomic nervous system controls the balance of control in the body. It generates energy at the right moment, for the right amount of time. It also saves energy, keeps the body from expending too much energy. When it is time to settle down, it sends out a signal that says, "Hey cool it." The body responds appropriately.
With Dysautonomia, this system is broken. For my daughter, TLC, she never has enough energy for any task. Her body is always wanting to sleep. Most days she sleeps between 10 and 12 hours. Sadly, this is never quality sleep. Yes, yes, yes! I know what you are thinking. Too much sleep can also make a person tired all the time. You are right! But that is not the case here.
I used this as a teaching moment for my daughter, to remember how special she is. I reminded her that people like this nurse just don't know, it was an innocent response. She would have never said anything had she known. It is moments like these that we can teach others and bring awareness.
If you see someone doing something different, ask them why. Ask them about their condition, don't be afraid. We welcome people that want to learn, know and understand.
Several years ago, I was the family provider for my husband's grandmother. I had a wonderful job that allowed me to take off quite easily when needed. One day she was taken to the hospital. We got up early in the morning to make the two hour trip to the hospital. We took care of all of the paperwork and asked the questions that were needed and got her taken care of. At one point, a nurse walked in and saw my daughter all curled up in a chair attempting to go back to sleep. She made a big deal about it. She was loud and got other people involved in the moment. She reminded my daughter how young she is and that children of her age should be bouncing with energy. To any other child in any other family, everyone would agree, chuckle and move on.
My daughter's condition demands much of her energy and time. The autonomic nervous system controls the balance of control in the body. It generates energy at the right moment, for the right amount of time. It also saves energy, keeps the body from expending too much energy. When it is time to settle down, it sends out a signal that says, "Hey cool it." The body responds appropriately.
With Dysautonomia, this system is broken. For my daughter, TLC, she never has enough energy for any task. Her body is always wanting to sleep. Most days she sleeps between 10 and 12 hours. Sadly, this is never quality sleep. Yes, yes, yes! I know what you are thinking. Too much sleep can also make a person tired all the time. You are right! But that is not the case here.
I used this as a teaching moment for my daughter, to remember how special she is. I reminded her that people like this nurse just don't know, it was an innocent response. She would have never said anything had she known. It is moments like these that we can teach others and bring awareness.
If you see someone doing something different, ask them why. Ask them about their condition, don't be afraid. We welcome people that want to learn, know and understand.
Thursday, March 14, 2013
What Cold Induced Urticaria Looks Like
One of the first identifiers that a reaction is about to begin is that her face loses most of its red or pink coloring. The bottom eye lids turn a purple color.
Red flares begin to show on her ears, face, and joints; elbows, knuckles on her hands, knees and ankles. Starting on the joints only are not typical for all sufferers of Cold Urticaria.
Here is how they appear on the elbows when they first begin to swell just prior to becoming wheals.
__________________________________________________________________________________
People with this condition do not have to be cold to breakout. This welt was caused by direct exposure to cold air.
Warm sunny days with a light breeze can cause a reaction on exposed skin.
Skin not directly exposed to cold can also have a reaction.
With a large enough reaction, it can look as though the person was bit by many mosquitos or fire ants. It feels the same way too. Reactions on the surface of the skin starts with a burning sensation and then added to that is intense itching.
Eventually, when exposed long enough, swelling occurs in the affected area.
Though my daughter's reaction typically begin on the joints, the reactions spread to all areas in between. Every area of the body is affected.
The appearance of the reactions can change in appearance depending on the type of medication taken to prevent them. As you can see in this picture, some people may have an associated discoloration (blue tint) to the skin during a reaction. Some can be much more severe than this.
This reaction originally looked just like the pictures of the arms above, completely covered. After dipping in a warm bath, this is what the reaction looks like as it goes away.
_________________________________________________________________________________
Again, you can see the blue tint in the skin. In this case, it is known as Acrocyanosis.
These reactions are flat, they don't wheal up. In my daughter's case, they usually had a white halo around them.
After the reaction goes away, a scarring effect occurs. These are like water stains left on a table after a glass is removed. These usually remain for a couple days until full healing has occurred.
Friday, March 8, 2013
A Devotion from IntentionalLiving.com
Lord, you have been our dwelling place throughout all generations.
Psalm 90:1 NIV
Psalm 90:1 NIV
Looking for Shelter
When horrible tornados and hurricanes rip through communities, people look for safety in storm shelters.
That's
the way it is for those who follow Jesus. There are times when the very
nature of life feels like one big storm after another. It's like the
power is out, and the lights are off.
Are
you facing a storm today? Remember that this world is just a temporary
place. But God is your refuge--your dwelling place yesterday, today and
tomorrow. He is the One who created you, the eternal God who fully
sustains you, carrying you through this world and into everlasting life.
You can draw closer to Him enjoying safety in any storm.
Today's One Thing
Choose to rely on God to carry you through today, remembering you can trust Him!
Go Deeper
Psalm 90; Psalm 71:1-6; Isaiah 32:18-20
Credit:
Intentional Living with Dr. Randy Carlson - www.intentionalliving.com daily devotional on 3/8/13
http://archive.aweber.com/edevo/J_BXw/h/He_s_got_you_covered.htm
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