The Daunting Notion of Homeschooling

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!!!

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.

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.

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.