Tuesday, September 30, 2014

Wheelchair Costumes

Trick or treat!  What an exciting time for young kids!  It's a little bit of a challenge for a child who uses a walker or a wheelchair because you have to make sure the child can still get around safely with the costume.  


When our children attended school at Fort Rucker, AL, there was an annual costume parade there.  It was so much fun to see the kids and the staff dressed up in their costumes.  When S was in PreK, the staff pulled him in a wagon so he could keep up with everyone. However, he had a wheelchair for longer distances the next year, and mom and dad had some good ideas.  


My husband and I are a great team.  I can come up with ideas, but I lack the creativity to follow through with them.  My husband is a visionary.  There isn't much he can't build with cardboard and duct tape.


KINDERGARTEN (Alabama 2002)
S wanted to be a bus driver.  Not just any bus driver.  He was going to drive Bus #5, his bus.



               


 





FIRST GRADE (Alabama 2003)
S liked ambulances.  His ambulance was complete with a siren.  He managed to wear out the batteries to his siren prior to the costume parade starting.  Apparently, we didn’t take any pictures of the build or I just can’t find them.
























SECOND GRADE (California 2004)
S has always enjoyed farming.  Even now, he still likes riding in tractors with his uncle and his great-uncle.


           


That would be my very creative husband pushing the wheelchair.



[If you will notice, J is a dalmatian in 2003 and 2004.  He was a dalmatian for four more years until he stopped trick or treating.  I got my money's worth out of that mask and a white sweatsuit.]


As S became older, Halloween became a little scarier.  That probably has something to do with his vision.  I always wanted S to be a "head on a platter" by building a table around his head. He wanted nothing to do with that idea because that was too scary.


So, he is quite content to stay home, hand out candy, and wear a t-shirt that says, “This is my Halloween costume”.  That works for me because I can hang out on the couch with chocolate that I may or may not have taken out our our candy bowl; however, my husband misses making these costumes.





Friday, September 26, 2014

Minnesota, Bonus Time, and Schedule Changes

The Senior:  S is enjoying his time in Minnesota.  He has been visiting family and friends.  He has been to the lake.  He attended his cousin's football game where my nephew injured his elbow; however, it isn't broken! Very thankful for that.  He has been playing games with family members. He has watched some World War II DVDS from The Great Courses and the America at War series that he brought to Minnesota (checking off a little bit of schoolwork). 

And, the whole reason for going to Minnesota right now....




I'm so thankful that he is homeschooled, so he has the opportunity to go and do these things.  

Volunteering:  This weekend S will be participating in the Leukemia and Lymphoma Society's Light the Night walk at Target Field.  He will walk with my sister and nephews in honor of my brother-in-law (a leukemia survivor) and my grandma (a lymphoma survivor).  I'm so glad he has the opportunity to do that with them.


The Sophomore:  It has been a busy school week.  J had a lot of AP History that was supposed to be due this week.  He has been working diligently on it.  We thought he might miss a day of practice to finish everything; however, the two big assignments were moved to next week.  He's breathing a little easier.  He has one of them already done.  


He had a Spanish oral assignment to do this week.  We are amazed at how far he has come in Spanish.  He is enjoying this teacher; however, he is glad that this will be his last year.  The mere suggestion of taking Spanish IV next year gets a little bit of the teenage eye roll in return. PE is the one class he doesn't care for which is very funny considering how many hours/week he spends in the gym for gymnastics.


J is in an Art Magnet program. This year he is taking Photography which is his favorite class. They are in the darkroom doing activities.  Apparently, he has finished his darkroom activities, so he is doing class work now. Next week, they are getting the cameras out. They use cameras with film, so that will be fun for him.


Practice:  He had 14 hours of practice this week.  He is taking tonight off to attend his school's Homecoming football game.  We received this season's meet schedule.  Looking forward to that. The team will be participating in a new meet this year.  It's always fun to attend the meets.  


J's former coach from his previous gym (she also coached at his current gym for 1 year) is back in the area and helping at the gym when needed.  Her parents lives about 6 blocks away from us. When she works, she has been taking J to and from practice.  That has been so nice for us!  We have bonus time at home.  The one night I just kept saying, "We have 5 bonus hours!"


On the Homefront:  We have been busy working on our to-do list.  Good thing because my husband found out on Wednesday that his shoulder surgery which was scheduled for October 29 is being moved to October 1.  Yep!  Next week.  Be flexible!  


This past week we ordered fireplace logs.  We are having our fireplace converted to gas logs. We had the workers out who will install them to give us an estimate. This is one household project that is coming in way under budget (about half the price we anticipated). The window people were at our house to give us an estimate for our broken window.  Fortunately, these things are all scheduled outside of the surgery date so we don't have to move anything around.


This weekend we will be finishing up a few tasks around the house and relaxing on the couch with chocolate.

Linking up with:



Weekly Wrap-Up




Tuesday, September 23, 2014

It wouldn’t be fair to the other kids.

IMAGINE:
Imagine being the parent of a child who has special needs.  This child can’t walk like the other kids.  He can’t run.  Writing is very difficult for him.  Speaking is difficult for him (hard to believe if you have spent time with him).  He has vision issues.  Every task for him is difficult to achieve, but he does it.  Everything he does takes much longer than it does for a child without special needs; his life would be easier if we did these things for him, but it wouldn’t be beneficial for him.  This is a child who could have had reduced assignments given to him in school, but he refused that accommodation as an elementary school age child.


IMAGINE:
Now imagine being the parent of this child as you sit in a school meeting trying to make sure he is receiving his “free and appropriate education” which is mandated by law.  [You haven’t experienced fun until you have had to sit through IEP meetings (sarcasm button).]  Imagine that you ask for some basic accommodations to try to level the educational field in which your child is expected to play and you are told by a school employee or someone from the state that the accommodation you are asking for “wouldn't be fair to the other kids.”  What?????  


You are seriously telling me that asking for my child to have accommodations put in place to access his education won’t be fair to the other kids.  We aren’t asking for anyone to do his work. We aren’t asking for him to be excused from work or tests.  We have already established that he wants to do the same work as the other kids.  We are asking for tools to be put in place for him to do the work and prove that he can do the work.


CALIFORNIA:
S’s second grade class took timed math facts tests.  They had to solve 100 facts correctly in 5 minutes in order to move to the next level.  There was a big bulletin board in the room showing their progression, and it was a BIG deal to have your name moved up to the next level.   They took these tests on Wednesday afternoons.  


Because of S’s CP, his fine motor skills are impacted, and he has functional handwriting which doesn't include writing for a timed test.  He had an aide who came in to write for him during these timed tests.  While the other kids had to write for themselves during the 5 minutes, S had to tell this adult the answers and wait for her to write them during this same time.  If the kids missed any, they had to repeat the same facts the next week.  Getting 99 facts right in 5 minutes was not acceptable!  


There were a couple of weeks that this aide was unable to come into the class during this time; therefore, S was expected to write for himself during the timed math test.  There was no way he was going to pass because he can’t write fast enough to complete 100 problems in 5 minutes.  We asked the teacher if he could have a little more time during tests where he was expected to write for himself, so he could have the satisfaction of passing without anyone writing for him.  “That wouldn’t be fair to the other kids.”  Are you kidding me?????  Forget the fact that he has an IEP that states he gets additional time on work and tests.


VIRGINIA:
Because S has fine motor issues, writing is extremely difficult for him (see above).  To solve math problems, we used graph paper with large squares. We would write the problems out so they were lined up, and he could solve them independently.  This was how he did math.  


We asked for him to use graph paper on his Math SOL (standardized test).  We had to submit the graph paper we wanted him to use.  We also submitted two math samples for S:  1.  One using the graph paper where the problem was solved correctly because his numbers were lined up.  2. One using regular paper where the problem was solved incorrectly because his numbers were all over the place.  


The state of Virginia told us that "it wouldn’t be fair to the other kids" because it was homemade graph paper and not store bought.  


Kudos to our principal for being brave enough to tell me that piece of information face to face. Kudos to me for not completely losing it in the school hallway.  I asked the principal if the state was testing math skills or writing skills.  I told the principal that “those people” need to come and spend one day in school with S to see what it is like for him to get through a school day.  I also asked the school if they could make the graph paper so it wouldn’t be homemade.  The reason we had to make it is he can’t write small enough for the graph paper sold in the stores. If he could write that small, we wouldn’t need it.


VIRGINIA:
Due to the level of his needs, S requires a number of accommodations to level his playing field.  It was extremely frustrating his fifth grade year as we went back and forth with the state trying to get his accommodations in place for the SOL testing that they require.  I remember telling our principal at the time, “We can’t possibly be the first people in the whole state to ever ask for these accommodations.”  His response, “You might very well be.”  He told me that most kids who have required the quantity of accommodations that S does typically don’t have the cognitive functioning that S does. (http://onthecouchwithchocolate.blogspot.com/2014/07/tell-us-little-about-your-son.html)


S is very aware of the challenges his special needs bring to his life.  He also knows he is entitled to accommodations by law.  He isn’t asking for an easy way out.  He is looking for ways to level the playing field for himself so he can be educated and become part of the work force.  The paralympics finds ways to level the playing field for their athletes.  You think society would realize that’s all we want for our son instead of telling us “it’s not fair”.


Is it any wonder I need time on the couch with chocolate (and wine)?

Friday, September 19, 2014

School, Minnesota, and Gymnastics

The Senior:  It has been an eventful week for S.  He had one day of school which he didn’t believe he should have.  
“You know, I’m flying to Minnesota on Tuesday.  I thought I would just sleep in on Monday.”
“You thought wrong.  You have some things you need to finish before you go.”


We were excited when his course, “The Human Eye 1”, arrived from the Hadley School for the Blind.  We were hoping it would have arrived a few days earlier, so he could have completed the first assignment before he left.  We read through the whole lesson.  We copied pictures of the diagram and colored in the parts of the eye.  I, repeatedly, kept telling him how fascinating it was to try to make him enjoy it more.  


S is not a fan of science and, especially, body parts.  Yet, he has taken Anatomy and Physiology (We were lucky enough to have the “Bodies Revealed” display at the Virginia Living Museum last year.  Lots of field trips!) and now a course focusing on the eye.  Could it be that his parents want to fill him with knowledge about his body so when he is in with the specialists talking about his body he will understand, at least on an elementary level, what they are talking about so he can ask questions?


He has agreed that flashcards will be beneficial for learning the vocabulary.  I went to Quizlet.com and typed the words and definitions for him.  He has the app loaded on his phone. Maybe he will study while he is in Minnesota.


Prior to his trip, S worked on some College Algebra and writing.  He worked on his German IV the weekend before he left.


Then, he packed for his trip to Minnesota….He had a list.  He gathered his clothes and put them in his suitcase.  Then, he needed to work on his carry-on bag, and there was a list.  His carry-on bag will be the death of me at some point.  It is every time we are going on a trip!  For the few items he needs in there, he just cannot get that bag together!


Between Sunday evening and Tuesday morning at 6:00 AM, he needed to get the following items together to put in his bag:  phone, charger, headphones, pills - already counted out and bagged for the trip, book, wallet, granola bar, and gum.  Let’s just say when he left Tuesday morning, he did not have his headphones, granola bar, or gum.  He almost didn’t have his charger.  


He made it, and he’s having a good time.  He has already spent time with the majority of my family.  It helps that they all live in the same area as my parents.  My sister and her family are there.  My aunt and uncle live nearby.  Their three children all live nearby.  In fact, one of my cousins lives three doors down from my mom and dad.  He saw my grandma on Wednesday. My husband’s dad is going to touch base with him, so they can get together and possibly visit my husband’s grandma.  He will see everyone and do everything he wants to do since he is there for 3 weeks.  He has been out in the field for harvest which is why he goes at this time.


Volunteering:  S volunteered for 8 hours last weekend.


The Sophomore: J is in the school groove.  It’s nice that his classes are every other day. He is very good about prioritizing his work and determining what can wait until the weekend.  He came up with his Science Fair project idea.  He will work on writing that up this weekend.  He has an AP History paper due next week, questions, and a test.  He has Spanish homework he will work on this weekend.  He is enjoying Spanish more this year which is nice.  He worked on English assignments related to his two summer reading books.  


My husband and I went to back to school night on Tuesday night.  It’s nice to meet J’s teachers. They all seem very nice.  I can see why J is enjoying their classes.  We really like the school J is attending, but we have a hard time imagining S being in that building.  The school is so large!  The high school my husband and I graduated from was much smaller.  Our entire high school population was, and still is, less than the population of J’s sophomore class.


Practice:  J practiced 17.5 hours this week again.  He and his coach worked on setting some goals for the year.  We are very thankful that J made the move to this team four years ago. The whole dynamic in this gym is wonderful:  the coaches, the athletes, the family, and the support for everyone.  


I can’t talk about gymnastics practice without mentioning that tomorrow, September 20, is National Gymnastics Day.  It is a day to celebrate the sport of gymnastics.  J started taking classes when he was starting Kindergarten.  He started competing when he was in the fourth grade.  It’s pretty much a way of life at our home.  








My husband was home sick on Monday, but he’s feeling better now.  No one else caught what he had.  Happy for that!  


I have been working on deep cleaning the house while S is gone.  Apparently, I need to clean more often.  I realized yesterday that one of our upstairs windows is broken.  Always something….

S is gone.  J is at practice.  My husband is feeling better.  Life is good.  I will be on the couch with chocolate and my new book.

Linking up with:

Weekly Wrap-Up

Tuesday, September 16, 2014

Tips for Traveling Alone

Watch out Minnesota!  S is in the air and headed your way.  It is time for his annual alone trip to visit family.  Every year except one since S finished the third grade, he has taken this trip.  It is a reward trip for him because he works hard during the school year.  It has been a great incentive for him through the years.  You will note that he didn't make this trip alone one year...enough said.  


We are a family who travels quite a bit.  Flying is a way of life for our children.  Traveling alone isn't a big stretch.  We just need to plan accordingly.  Because of S's needs, there are a few more things we need to take into account when we send S by himself as opposed to J flying by himself.  


Some helpful tips we have learned.
Flight Planning:
*We opt to have him fly on non-stop flights, so he doesn't need to go through the hassle of making a connection.  We are fortunate that Delta has a non-stop flight to Minneapolis from Richmond and Norfolk.  Both of these airports are within an hour's drive of our house (as opposed to the airport 12 minutes from our house).  The first few years this flight was more expensive, but it is now just a few dollars more.  It has been worth every extra penny for his travel ease.


*We wish Delta's drop-down menu for special services indicated that a passenger has his own wheelchair when we request wheelchair service.  What happens is a wheelchair attendant shows up with a wheelchair.  S doesn't need that. He just needs someone to help him maneuver through the airport.  The challenge in a larger airport is not only getting around in his wheelchair by himself but needing to read the signs. Low Vision is an issue with this.


*Buy tickets well in advance so we have a good choice of seats for S.  When S flies by himself, we want him seated near the front of the plane.


*He must also have a window seat because he isn't going to quickly or easily get up and move for anyone.  


Airport Personnel:
*We always make sure he has tip money handy for the wheelchair attendant.   


*When he was younger, he flew as an unaccompanied minor.  That meant he had to be taken to the gate and met at the gate.  We used those years as practice years for when he would no longer fly as an unaccompanied minor. He needed to talk to counter agents and gate agents. He has to know what kind of help he needs, so he can request assistance.


Security:
*As many times as we have flown, we have never had any issues with TSA.  The agents have always been very good with S.  When he was young and TSA would pat down his chair (shortly after 9/11), we told him they were checking to see if he had hidden cookies in his wheelchair.


*He learned one year that he can't walk through security.  That was a lesson he had to learn on his own.  A TSA agent asked if he could walk through security and he told him he could walk through assisted.  They went to assist him, and he fell.  That was the last time he told them he could walk through security.


At the Gate - Boarding and Departing:
*S knows he needs to get a gate check tag for his wheelchair.  That also notifies the gate agents that he has a wheelchair.


*Pre-boarding is the key.  S opts to use his crutches to walk down the aisle of the plane rather than use the aisle chair.  If he is still walking in the aisle and isn't seated, no one is getting to their seat.  Some airlines are better than others about allowing enough time for this process because it is not done quickly.


*We know that if you need extra time getting on the plane, you will need extra time getting off the plane.  S is the first one on the plane and the last one off the plane.  That means his wheelchair is already waiting for him by the time he gets off the plane.


General Travel Tips that Make S’s Life Easier:
*He checks his bag.  That way he is only responsible for himself and a small bag that holds spare glasses, his phone, headphones, wallet, snack, etc. He also carries his medicine because no one wants him to lose his Concerta!


*He travels in running pants or athletic shorts (something with an elastic waist).  That just makes life easier for him if he needs to use the restroom.  It's faster - enough said.


*The use of electronic devices makes it much easier to pack entertainment for the plane.  He has his phone and headphones.  Done!


Flight Crew and Passengers:
Of course, none of this is possible without the assistance of the flight crews.  Along with the flight crew, S has always had very kind passengers on his flights.


*After his first trip alone, he now wears a watch on the flight, so he knows what time it is.  On that particular trip he kept asking the man who sat next to him what time it was and how much longer they had before they landed in Minnesota.  The man got off the plane, saw my parents waiting, and told them they must be waiting for their grandson who was very excited to be in Minnesota.  After we heard that story, we told him to stop asking everyone around him when they would arrive.  When the plane lands is when you will arrive.


*The flight crews have always been great with him.  One time another passenger on the plane sent a note with S telling us how great the crew had been in their care for him.  That was very nice.  That allowed us the opportunity to pass that information along to the crew’s supervisors.


*One time at a Virginia airport we ran into a woman who had been on a Minneapolis flight with S.  She came over to talk to us.  She remembered him because she had swapped seats with him so he would be closer to the front.


While S is in Minnesota enjoying family, I will be enjoying some quiet time on the couch with chocolate.  Actually, I will be doing some deep cleaning while I have the house to myself, but a girl can dream.






Friday, September 12, 2014

Prism Lenses, School, and Getting Ready for Minnesota

The Senior:  We survived Week 2!  It went as it should when your child is a senior.  S woke up, got himself ready, had breakfast, and started his work.  This year is about working independently and having me facilitate.  It’s what we have been working toward all of these years.  I told him this year is "Pre-College".


We watched “Schindler’s List” last Friday.  Such a powerful movie!  We spent a lot of time discussing the movie.  When my husband and I lived in Germany (1996-1999), we spent a week in Krakow and visited Auschwitz and Birkenau.  This is why we must study this...


S worked on College Algebra and A LOT of writing related to World War 2.  S knows a great deal about World War 2, so we are using the Uncle Eric book, “World War II:  The Rest of the Story and How it Affects You Today”, and the study guide.  


The first thing it asks for is for the student to write everything he knows about WW II.  S couldn’t wait to get started!  He uses Dragon Dictation when he writes (typing is very slow because of his CP).  He talked and talked and talked and talked.  Then he stopped, looked at me, and said, “I should have had a plan.”  That might have been a good idea.  He also kept telling me how he was hyperfocused!


He has finished editing his writing, so he gets to open the book and start on the study guide questions.  He is quite excited about that.  Speaking of finishing things - his summer reading is finally done!


We are still waiting on his coursework from the Hadley School for the Blind. Hopefully it arrives soon so he can get started on it.
We were out the door early this morning for S's therapeutic horseback riding lesson. He didn't even mind getting up early for it. It was great to see so many of our friends at the barn. S doesn't ride in the summer, so we had to get caught up with everyone. One of the great things at this facility is that all of us are parenting a child who has some kind of special need. It is nice for us to be able to sit and visit with each other during the lesson and share laughs, concerns, thoughts, etc. On our way home, we stopped in Williamsburg for some sweet deliciousness from Duck Donuts! And yes, my donut was gone before S even made it in the house.

The big news this week was S’s glasses came back from the lab.  He now has prism lenses to help stop the turning of his head related to his nystagmus.  He wasn’t sure at first since they were causing things to be slanted and tilting and diagonal.  He’s getting used to them, and they seem to be helping.  That is the key.  His big question is “Why didn’t anyone do this for me before?”  I will say again how thankful we are for his ophthalmologist and his knowledge (along with him being a family friend)!


Volunteering:  On Saturday, my husband and S volunteered with the NASCAR Foundation at the Richmond International Speedway for 8.5 hours.  They had a good time, but it was HOT that day! They were able to go to the race that night also.  They had a good time, but they left before it was done.  It was late when they made it home.


He is volunteering 8 hours at the Casemate Museum this weekend.  He needs to get his September hours since he is going on vacation for the rest of the month.


The Sophomore: J also survived the second week of school.  We spent time this past weekend with a calendar and his syllabi (had to look up the plural of syllabus).  It was helpful for him to get everything on the calendar.  With his 5 day/week practice schedule and his school work load, he needs to be organized.  He has always been responsible and kept up with his work; however, this will be more helpful.  It was nice for him to be able to walk into the house every day and look to see what was due the next day.  He is enjoying his classes.  PE and Spanish are his least favorite. This is his last year for both subjects!


Practice:  He has practiced 17.5 hours this week.  He has even driven home a couple of days. He is becoming more and more comfortable behind the wheel.


Coming Up:  S will be volunteering.  J will sleep in on Saturday.  We have early church Sunday morning and Sunday School starts.  


I have a Honey-Do list for my husband.  He has things he needs to finish before his shoulder surgery next month.  He will be working Saturday because Sunday he will be watching football.  
He is a Vikings fan, and we don't get many of the games broadcast here. Here is his solution. He tunes into Verizon's Red Zone on the TV and has the iPad next to him so he can read updates on the game. Sometimes he sits there with headphones plugged in and only one ear bud in his ear so he can listen to the updates via the web and the TV.


Our big task this weekend is to make sure S packs for his 3 week trip to Minnesota.  Oh, the joys of homeschooling!  This will be the last year he can take off in September/October to visit because college schedules don’t work like this.  


What he will be doing:
*He will be visiting everyone.  
*He is participating in the Leukemia and Lymphoma Society's Light the Night Walk at Target Field with my sister and nephews.  They are walking in honor of my brother-in-law and my grandma.  
*He will be out in the field for harvest - the primary reason for visiting at this time of year. He also likes to ride in the truck.  
*He will get to attend some sporting events in our hometown.
*He will be eating at some of our favorite local restaurants.

Since it appears everyone has something to do, you will find me on the couch with chocolate and a new book that my friend dropped off for me to read.

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