Wednesday, July 30, 2014

Wait until things get back to normal…

How often in life do we say the words, “Wait until things get back to normal.  Then we can _____.”  I have said those words quite often throughout my husband’s Army career, but I feel like I have said that phrase a lot while living in Virginia.

We moved to Virginia right before Christmas in 2005.  Once we were settled in the beginning of January 2006, my husband went away to school for 4 months.  Our normal was that dad wasn’t home.  That’s not how we want normal, so we always said, “Once dad is home, then we can ____.”

Things were “normal” for a little while here.  When my husband switched offices, he started traveling a lot.  He was gone half of each month.  He mostly traveled stateside, but he did make more trips than he wanted to overseas during that time.  Again, we didn’t want our normal to be three of us at home and dad gone most of the time.

“Maybe when he retires things will get back to normal.”  Things were better the first year he retired. He was still traveling but not as much.  

Then he switched jobs and started traveling again - a lot of traveling.  Our youngest son who is a gymnast had also switched gyms around this time period.  His new gym is 21 miles from our house, and he practices 4 days/week (5 days/week in the summer).  The catch was his school was 14 miles the opposite direction from our house, and he needed to be picked up from school on practice days in order to get his homework done and make it to practice on time.  We developed a new normal for our house which meant a lot of road time for mom and dad.  

It was during this time period that I realized “what if this is normal for us”?  There would be no waiting until things get back to normal.  This is it.  

Shortly after we came to this realization and embraced this new normal for our house, I broke my arm in a car accident.  It was a bad break which required surgery and a lot of hardware. It was an 8 month recovery.  I was unable to drive for 2 months.  I couldn’t dress myself.  This was not our normal, but a new normal was established quickly.  It had my husband doing a lot of stuff; his work was very accommodating and didn’t require him to travel until I was ready to take care of myself.  

Once I was cleared to drive again, I was so happy to be able to make that daily practice drive with my son.  I was thrilled to be able to drive S to his therapeutic riding lesson (31 miles away).  I learned to appreciate the fact that I had the ability to do these things rather than view them as chores. It’s all perspective!

Normal at our house isn’t normal at other homes.  Each household has their own “normal”.  We aren’t bored at our house.  We are too busy to be bored.  We get a lot of one-on-one time with our teenage sons on our drives.  We talk.  Sometimes we listen to the radio.  Sometimes they play on their phones.  We appreciate down time in our home.  

The other week I logged 204 miles driving to “normal” activities in two days.  It doesn’t leave me with a lot of free time, so I do appreciate being on the couch with chocolate.

Tuesday, July 29, 2014

A Few of Our Favorite Things...

Favorite items for day-to-day life

ADLs are "activities for daily living".  They are things the majority of us do in our everyday lives and don't think about.  For someone with a disability, the ability to perform ADLs can be difficult.  For some, the ability to perform or not perform the ADLs will determine their living arrangements - independent living, care provider, group home, care facility, etc.

Our goal for S is for him to live independently.  This is his desire also.  We have always had a great team working with him whose goals were the same as our goals - make S functional so he can live on his own.

Because of his CP, he needs to perform some ADLs differently than we do.  We try to keep things as "normal" as possible for him.  He doesn't want to stick out, and anything that is "therapeutic" costs more.  

Here are things that we have found to be very beneficial for S in the various aspects of his life:

1.  Clothing/Dressing:
Hickies:  J found these online, and they have been wonderful.  S has never learned to tie shoes due to the fine motor complexities and the gross motor issues of getting his body in the right position.  Hickies allow S to put on his own shoes, so we don't have to tie his shoes for him.  Trust me, it was a lifesaver for us.  We had to schedule our life activities around when he was getting his shoes on, so we could be available to tie his shoes.  Bigger factor is that S doesn't have to ask people to tie his shoes for him.
Buckle-down Seatbelt Belt:  Again, J to the rescue!  S has often had pants that have the adjustable tabs or elastic waist.  This style of clothing is more and more difficult to find as he has become an older teen, and we have tried to find clothing that looks age appropriate. When he had to get jeans that no longer had the tabs, my husband and I were racking our brains about what to do for a belt.  S would probably be able to use a typical belt, but it would take him a LONG time to work it.  J told us that he had seen kids at school with belts that had a seatbelt buckle.  He was under quick instructions to look them up to see where we could get them.  We were so excited when we found they had them at the mall.  We have never been so excited to get to the mall!  They work wonderfully.  Again, S doesn't have to ask for help with getting dressed.

2.  Personal Care:
This has been an area that S has not really had any issues with; however, we have found things that make his life a little easier.
Norwex face/body cloths:  S has had some struggles with acne and has used special soaps which were expensive and bleached my towels.  I read some reviews about the Norwex face cloths and people not needing to use their face soaps anymore.  I figured it was worth a try. Love them!  He uses the cloth with water and that's it.  He hasn't had any issues with acne. The cost of the cloth will more than pay for itself many times over.  It also becomes  a one step process for him instead of multiple steps and manipulating other items.
Sonicare toothbrush:  J's orthodontist recommended this when he had his braces put on.  It is a great toothbrush for S.  It cleans his teeth well.  
Reach Access Flosser:  Because of his fine motor issues, this has been a good flossing option for S.  

3.  Cooking:
Toaster oven: S wants the ability to cook for himself.  Using a traditional oven isn't practical for him.  This provides him with a great alternative to cook that is much safer.  He can cook a variety of things in his toaster oven.
Ove Gloves:  S loves these for his toaster oven!  Oven mitts are difficult for him to put on, and he feels unsure of himself when he is wearing these.  With the Ove Gloves, he is very comfortable working with the toaster oven and hot pans.  If he is comfortable, he is relaxed.  If he is relaxed, his tone doesn't kick in.  If his tone doesn't kick in, he can move much better.
Rubbermaid containers:  These are S's best tool in the kitchen.  It allows him to carry his food without spilling as he walks (remember he's walking with crutches).

4.  Cleaning:
Thirty-One Large Utility Tote-Camo pattern:  This is a great bag for S to carry his laundry to and from the laundry room.  It is very functional, and the amount of clothing it holds is a manageable amount for him to carry along with being a nice sized load of laundry.  (Yes, he has to do his own laundry.)
Laundry Pods:  Easier to handle than a bottle of detergent
Norwex:  S is responsible for cleaning one of the bathrooms in the house.  
He uses the Enviro cleaning cloth, toilet cleaner, and the mop.  He likes not having to touch the chemicals in other cleaners.  Just the ease of needing the cleaning tool and water makes the job much easier for him.

5.  Medical:
Daily pill cases:  S has 2 large pill cases.  We use the large cases because they are easier for him to manipulate, and some of his pills are large in size.  He has a morning case that stays in his bedroom so he can take his pills when he wakes up.  He has an afternoon case that sits next to the computer because that is typically where he is at when it is time to take his afternoon pills.
Stretching strap:  S needs to stretch daily (especially since he's no longer going to PT).  He's working on doing that.  His stretching strap helps him to be positioned better and get a good stretch.  Stretching is vital to his overall functioning ability.

6.  Technology Tools:
Google Calendar:  We realized the benefits of Google calendar this past school year for him. He loves being able to look at the calendar to see what is scheduled for the day and week. We also used the Task functions for his schoolwork, so he could check his work off as he finished it.  It definitely gave him a feeling of accomplishment, and he was in control of his work.  He also uses the calendar to remind him when he has to take his afternoon pill, eat lunch, contact the doctor for medication refills.
iphone:  S uses his iphone in a number of different ways.  He sets alarms to wake up or remind him when he needs to do something (helpful with his ADD).  He uses Siri for texting, and speech recognition software for taking notes.
iPad:  Useful for so many different things.   S can use it for school.  He can use it to organize his daily life.  He can use it for his online banking.  He uses the "Checkbook - Spending, Income, Cashflow, and Account Tracker" app to keep track of his checkbook (he needs to get better about keeping this current).  He uses the Kindle app.  He uses the Bible app and the Lutheran Hour app.  He has apps for Daily devotions.  

7.  His bag:
The one thing he uses every day from morning until bedtime is his personal bag.  He uses it to help carry things (wallet, gum, books, papers, etc).  His pediatrician and PT would often ask him how he was going to carry things.  He realizes the value and helpfulness of his bag.  We have tried different bags to see what would be best.  Some bags are too big.  Some get in the way of his crutches.  Cinch bags are too much of a hassle for him to take on and off.  He needs something that he can access from the front of his body without having to remove the bag and/or his crutches.  

Again, we had to use some out of the box thinking to find the right bag for him.  We needed something age appropriate that would stand up to a lot of use.  We found a bag at Barnes and Noble.  It is not as large as a messenger bag, so it doesn't bump his crutches.  It has multiple compartments, so he can organize himself which is not one of his strong suits.  It also holds his iPad which is nice.He has popped one of the zippers on it.  That's only because he likes to stick all of his really important things in the small pocket which is good for his phone and wallet - not his phone, wallet, Bible, book, etc.  We will get that fixed.  

Getting S to this point has been years in the making.  I think I will relax for a little bit on the couch with chocolate.

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Friday, July 25, 2014

Weekly Wrap Up (We already have a curriculum change.)

What a busy week we have had at our house!  I guess it has been a normal week then.  They all seem to be crazy - some more than others.

Curriculum change:
For starters, we have already made a curriculum change for S’s senior year.  After looking at other’s posts, I looked up the Brave Writer ( curriculum. Writing is an area that I want to make sure S has a solid foundation.  I liked the idea of some of the online course options, so we decided that he would take one or two online classes.  They line up perfectly with work I had planned and our timeline.  Prior to the online courses, he is going to work through the "Help for High School" course to make sure he is on track with the style of this program. He worked on Module 1 this week.

VBS Prep:
We have VBS at our church next week.  Our family heads up Registration.  This is our sixth year of doing it.  The previous two years I have said I was not doing it any more.  I have been saying it a lot this year.  Think I really mean it this time.  It’s a lot of time and work on our part.  This week I have sent 29 emails out regarding various Registration issues and received 29 emails regarding VBS issues.  Everyone in our house helps, but I think it is time to pass the baton.  

The boys had three appointments this week.  
1.  J’s hip had been bothering him, so he went to see the chiropractor.  It didn’t take very long with her, and he felt much better.  He often wants to put off going to see her, but he always feels so much better afterwards.
2.  S had a dentist appointment for a cleaning.  He has been complaining about his 10:00 appointment and how ridiculous it was to have a morning appointment.  I told him he could make his own appointment next time.  The other day he realized he had picked the 10:00 time slot because Rachel Ray is on then, and there are TVs at the dental chairs.  Ha!  Not my fault!
3.  J had a physical appointment.  We only realized he needed it because he needed medication refilled.  He has attended gymnastics camp the previous 5 years, so he always went in for a camp physical.  This year he decided not to go to camp, so he didn’t go in for a physical.

Both boys have volunteered this past week.  S put in 4 hours at the Casemate Museum.  J volunteered 6 hours with a family friend at her stables.  

J had 18 hours of gymnastics practice and the end of the year party.

J is flying to Minnesota next week to spend time with family.  Other than a niece who lives in Tennessee, everyone else lives in Minnesota.  It is important to us that our boys get alone time with grandparents and other family members.  They have been taking their individual trips for a number of years.  It has been good for them.  This is J’s first year making connections as an unaccompanied minor.  He has been traveling his whole life, so he’s a pro.  We are trying to finalize trip plans for him.

The highlight of this week was celebrating my 26th anniversary!  I can’t believe I am old enough to have been married 26 years.  We did marry young (19 and 20), but it is still hard to comprehend.  It’s been quite a journey with my husband, and I can’t imagine it any other way.

Because of J’s practice schedule, our family went out to eat the day before our anniversary so we could all celebrate together.  On the actual day of our anniversary, my husband and I were like two ships passing in the night.  Between dropping off and picking up J at practice and S at Youth Group, we did manage to meet up for a quick supper.

I will be resting on the couch with chocolate.

Linking up with:
Weekly Wrap-Up

Thursday, July 24, 2014

Transitioning with DARS Part 3

After playing phone tag with the Assistive Technology coordinator, S had his AT assessment scheduled.  We thought it was going to be 30 min-1 hr. long.  It ended up being 2 ½ hours long, and S decided that his dad and I could just wait in the waiting room during the assessment.  It was boring for us (picture any waiting room of a government funded office), but it was him being independent. Yeah!

When it was done, we were called back into the room to get an overview of what they had covered. The coordinator was impressed with how much work we have done with him at home.  

They talked about his needs at college:
1.   Note taking:  Using a Livescribe pen, Audio Note on an iPad, getting notes from other students
2.   Power wheelchair vs. manual wheelchair:  S isn’t excited about a power chair because he thinks it will cause him to become lax in getting himself around.  It was suggested that we look at assist wheels which would give him extra propulsion on a manual chair.
3.   Computer needs:  iPad, laptop, desktop.  He will probably use an iPad in class and have a desktop in his room.  At home, he primarily uses a desktop.  He does use the iPad for different tasks.
4.  The coordinator talked about other apps that would be beneficial, and he emailed the links to S.

Our concern with the Livescribe pen is that S will distract himself so much with getting it set up that he will forget to record the lecture and take notes.  He has tried it at home and did well; however, it was a new item.  Will that continue once the novelty is worn off?  Will he be so inclined when it is a class he doesn’t like but is required to take?

We like the idea about the chair.  We will check into that.  We have a great representative/salesman we work with for his wheelchair and other medical equipment.

We went out and bought a new iPad so he can practice with it this next year.  We had the first iPad which doesn’t support some of the tools we would want him to use.

His senior year will be about him finishing up the necessary classes to graduate and practicing techniques necessary to help him in college (note taking, scheduling, putting things on his calendar so they are beneficial to him).

It was a great meeting, and S was quite excited to share all of the information with us after the fact.  It is fun to see him taking on this responsibility for his transition.

Since this transition thing is going well, you know where to find me...on the couch with chocolate.  

Wednesday, July 23, 2014

Transitioning with DARS Part 2

After receiving notification that S qualified for the Vocational Rehab Program, he had to meet with his counselor again to create an Individualized Plan for Employment.  

He had to tell his counselor his educational plans and what he wanted to study.  He had to tell her what kind of job he wanted (Military Analyst) and where he thought he would be employed (Federal Government).

We have talked about this at home, and he is having some difficulty accepting that he is in this phase of life - college, job, moving out, becoming financially independent.  It has become more real this past year as some of his friends graduated, and he listens to their stories.

This was a good meeting.  Also, his counselor went over his responsibilities to achieve his goals (attending appointments, taking his medication, attending class, achieving a good GPA, etc).  This makes it all very real to him, and he knows that he is responsible for achieving his goals.  As I told him, we are all here to help him but we can’t do it for him.  It is up to him.

I will continue to support him in his endeavors while I am on the couch with chocolate.

[Side note:  Since this time, S has talked about some other career ideas.  If he changes his mind, he needs to meet with his counselor to make sure that everyone at DARS is on the same path as he is to help him achieve his goals.  Right now, he is in the information gathering phase and praying about different options.]

Tuesday, July 22, 2014

Transitioning with DARS Part 1

The state of Virginia has a Department for Aging and Rehabilitative Services (DARS).  We contacted them at one point during S’s sophomore year, a file on him was started, but we did not meet with them at that time.  In the winter of S’s junior year, my husband called DARS again.  Because S was 17, they wanted to meet with him.

The initial meeting went well.  It was a lot of paperwork and questions.  S did well, and his counselor was very nice.  I don’t think she’s worked with someone who was homeschooled before.  The majority of the questions for high school age students relate to their public school.  Together, we worked our way through the questions.

At the end of the meeting, S’s counselor had filled out all of her paperwork.  She had all of the papers we brought with (medical documentation, test results, school records), S had signed a number of forms for information sharing purposes, and she explained the process to us.

What she discussed with S:
1.  His plans for the future:  attending Thomas Nelson Community College and transferring to a 4 year college

2.  Application for Handi Ride so he has transportation:  He is not one bit excited about Handi Ride - a little bit of a struggle in accepting that he won’t drive.  We will work through that.

3.  Meeting with an Assistive Technology specialist to see what tools are available to help him.

4.  SSI:  The counselor’s recommendation is to wait to apply until he is 18 since he is so close to his 18th birthday.  Children who receive SSI need to reapply when they turn 18.  He has no desire to apply for SSI.

5.  Medical insurance:  S is covered until 26 under my husband which is good.
6.  Other services that would be available to him if he becomes a DARS client.

All in all, it was a good meeting.  We liked his counselor.  S has a little bit of a struggle with this process because he doesn’t like being classified as disabled.  We understand that, but we want him to have access to services that can be beneficial in achieving his goals.

Working with DARS is one more tool to help him transition and start his independent life.  It will mean more time for me on the couch with chocolate!

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Friday, July 18, 2014

Senior Year!

This is it! Senior year!!  S didn't think he would ever make it.  I have told him throughout the years, "If you just follow my plan, your senior year will be relaxed and fun."  Through a lot of parental encouraging or as he calls it "nagging", we have made it to senior year.  He has now agreed that it will be relaxed and fun.

Here is the plan:
1.  English:  Writing, writing, and more writing.  S will be doing daily writing - possibly through his own blog.  We have some research papers and larger writing projects scheduled that are related to his history course.  Our ultimate writing goal is to get him to write faster through typing or through speech recognition software (Dragon Dictation).  He will be reading literature for school and reading on his own.

2.  Math:  S is working on College Algebra using ALEKS -- Assessment and Learning, K-12, Higher ....  We have used ALEKS for the past 4 years.  It is an online math program which is great for S and his fine motor issues.  He enjoys it.  It is an ACE credit recommended course.  Our hope is that the community college will give him credit for this course.  If not, College Algebra will be a review for him. Math is a subject that he tolerates even though he does well in it.  He would probably enjoy it more if he were able to write the problems out himself.

3.  Science:  S is working on a .5 credit Equine Science course using Simple Schooling's "The Science of Horses" along with Rick Parker's Equine Science 4th Edition textbook.  Because he takes therapeutic riding lessons, this course is pertinent to him.  

4.  History:  S will be finishing up History Odyssey Modern Times History from  Since he loves history, we spread this history course over his Junior and Senior year, and we have delved deeply into the assigned topics and branched off into other topics.  We will be starting this year with World War II.  Because it is a level 2 course, we have supplemented with a lot of extras.  
a.  Uncle Eric books (Bluestocking Press):  The Thousand Year War in the Mideast:  How It Affects You Today, World War I:  The Rest of the Story and How It Affects You Today, World War II:  The Rest of the Story and How It Affects You Today.  We have used the study guide for the WW I book and will use it for the WW II book this year.
b.  Videos from The Great Courses ( to include:  "Turning Points in Modern History", "Churchill", " A History of Hitler's Empire", and "Utopia and Terror in the 20th Century"
c.  "America at War" DVD set
d.  "America:  The Story of Us" DVD set
e.  "The Presidents" DVD set
f.  Movies related to history
g.  Field trips
h.  Literature

5.  German IV:  Rosetta Stone Homeschool Version (

7.  Business elective:  I purchased Starting a Micro Business for Teens by Carol Topp and the accompanying workbook.  There are 2 other books in the series:  Running a Micro Business and Money and Taxes in a Micro Business. We will see how S enjoys the first book before I purchase the other two.  He would love to have his own business, so we will see how this works.

8.  Russian II:  Rosetta Stone Homeschool Version ( S hasn't decided if he is going to continue with Russian or not.  He likes his foreign languages.  We told him that he will graduate with 5 foreign language credits without taking Russian II, but it is up to him if he wants to put the time into the course.  We will see as the year moves along.

9.  Nutrition:  Just this week, S told me he might enjoy taking an elective course in Nutrition.  That is what his senior year is about.  I am looking at different books he could read, websites, videos, etc. to come up with a plan for him.  

Hard to believe we have made it to this point.  We are looking forward to this last year of our homsechool journey.

Since everything is all under control, you will find my husband and me on the couch with chocolate!

Linking up with:

Weekly Wrap-Up

Thursday, July 17, 2014

“What’s wrong with him?”

Mmmmm….”I know I didn’t hear you just ask that question,” is what my internal voice says.  My external voice responds with “Nothing.”  

Person who just asked rude, inappropriate question looks at me strangely like I don’t know what I’m talking about.  Uncomfortable silence followed by them walking away.  I’m sure they are thinking what a poor, confused mother I am living in denial about my son.  Except I’m not.

You see, there is nothing wrong with my son - nothing more than any other teenage boy has going on in his life (messy room, oversleeping, talking back, not wanting to do schoolwork, wanting to play on the computer longer than he is supposed to, etc.).  

Does my son have a disability?  Yes, he does.  You didn’t ask me that question.  We don’t mind talking about his disability (see What’s wrong with your legs?).  

Maybe that’s the question you should have asked.  We would have answered that one.

Is it any wonder that sometimes I need to be on the couch with chocolate (and sometimes wine)?

Wednesday, July 16, 2014

“What’s wrong with your legs?”

This is the question a young boy asked S the other day while we waited in the hospital lab for a blood draw.  Kids will often ask, and S doesn’t have an issue answering their questions.  We have always talked about the importance of children learning because it is part of the acceptance of others.  Even when he was younger, we encouraged S to answer the questions himself.

S responded by telling this boy, “I have CP.”  (I whispered that the boy probably didn’t know what CP was.)  

“I have Cerebral Palsy.  It means my legs don’t work like your legs do.”

“You don’t have any legs?”  (S was sitting in his wheelchair in a pair of shorts with both legs visible.)

“I have both of my legs.  They just aren’t very strong like your legs are.”

I asked the boy if he liked to run.  He told me he runs very fast.  I told him that S has a hard time running, but he uses crutches to walk.

“Oh, ok.  I have bug bites.  They itch a lot, but they are going to go away.”  And with that, the conversation was over because he needed to get a drink from the water fountain.

If only adults were as upfront, honest, and accepting as kids are.  We could learn so much from them.  

I do have to give a shout out to the parents of this child.  During this whole exchange, the parents never came over to shush their child or shoo him away from the teenage boy in the wheelchair.  They let it play out.  Good for you mom and dad!

I think this happy exchange calls for some time on the couch with chocolate!

Tuesday, July 15, 2014

Tell Us a Little About Your Son

Every time we have moved or every time we have had to see a new doctor or the start of every new school year get the picture...we are asked to tell this person or people a little about S.  That is easier said than done.  There isn't a little to tell about him.  There is a lot to tell.  The individual parts don't do him justice.

I will attempt to tell you "a little about S".
1.  He has Cerebral Palsy-Spastic Diplegia.  
a.  His CP impacts his legs primarily.  He used a walker when he was younger.  He walks with crutches now and uses a single crutch around our house.  He uses a wheelchair for longer distances. He had Botox injections for his legs when he was in the second and third grades.  He has also had muscle release surgery on both legs - heel cords, adductors, and hamstrings.  
b.  His fine motor skills are also impacted with the right side being impacted more than the left.  He has functional handwriting - words, numbers, signature.  His primary mode of writing is through word processing.  He types - slowly.  He also uses some speech recognition software.  
c.  His speech is also impacted a little bit by his CP.  His speech is breathy, sometimes he stutters, and sometimes he locks up and is unable to speak.  
d.  He had PT, OT, and Speech for a number of years.  He is currently not doing any outside therapy.
2.  He has Attention Deficit Disorder.  
3.  He has some vision issues which include nystagmus.  He may actually get a label of Low Vision, but we haven't had that conversation yet.  His accommodations for his CP have always covered any accommodations we might need for his vision.  He had muscle release surgery on both eyes when he was in the first grade.
4.  He has scoliosis.  He has been monitored by his Orthopedic Surgeon for a few years now.  There has been no treatment for this.
5.  He was treated for a number of years for Growth Hormone Deficiency.  He decided last year he was done with that.  The Pediatric Endocrinologist continues to follow him.
6.  He is allergic to Penicillin.  We found that out the one time we had to take him to the doctor for being sick.  He is extremely healthy!
7.  He is very smart.  He loves history and foreign languages and tolerates other subjects.
8.  He is a Christian.
9.  He doesn't like being called disabled.
10.  He loves rock music from the 80's.
11.  He turns 18 in December and will graduate in 2015 which is why we are working hard on transitioning him to adulthood.  

All of this listed above is why we always tell people, you have to meet him.  He is more than just a bunch of medical labels.  He is a whole package.

I will be on the couch with chocolate as I contemplate what else I could tell you about S.

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