But that is for people with disabilities

If you have been reading my blog, you know that my oldest son S has Cerebral Palsy along with some other medical conditions.  As he is gearing up for his senior year, we are also preparing to transition him into adulthood and life in the real world.  Part of his transition plan includes, among other things, him being enrolled as a client of DARS and receiving services they provide.  

Imagine our surprise when his comment to us regarding DARS was, "But that is for people with disabilities."  Ummm...yes, it is.  

We have, apparently, done a great job of raising S to know that his disability does not define him. Yay for that!  He also does not want to be known as the person with a disability.  

However, we don't want him to be in denial about his disability ("Mom.  I live with it.  I know I have it. If I didn't have it, I wouldn't need these crutches.").  We want him to access the services that are available to him to help him be successful.  But, I get it.

Yeah, he will be okay.  I just need to go hang out on the couch with chocolate.

The Four Pillars of Life: Part 2

Quick recap:  My husband and I came up with four different categories and related skills that we felt S was going to need in order to be successful starting as a young adult heading off to college.  The categories are physical, educational, financial, and spiritual.

2.  Educational:

a.  Work breaks:  S tends to hyperfocus when he works (ADD) and will not get up from the computer until tasks are completed.  This is not an issue if it is a shorter task, but he has been known to sit at the computer for hours at a time without moving.  That isn't good for anyone to sit like that, and it is especially not good for someone who has CP.  Using his iphone to set alarms/reminders for himself is a tool that he uses.  This has improved.  Our goal this next year is to mark it as done.  For now, still working on this step.

b.  Prioritize work:  This is difficult for him (ADD - can you tell we have been reading A LOT about ADD this past year? http://www.additudemag.com/adhd/article/10117.html).  What I see as a priority, S does not.  His mind does not put importance on anything until he is in crunch mode. Then he is full steam ahead.  This is where using a calendar to input deadlines will at least give him a visual on what is due in the upcoming days/weeks.  Still working on this step.

c.  Work efficiently:  This just means working smarter not longer.  S has been known to spend hours at the computer and finish nothing one day.  The next day he might accomplish record amounts of work in 3-4 hours.  This could be related to ADD, CP, or a combination of the two. What we have found is that he is more productive on days that he gets up earlier in the morning. By earlier, I don't mean 5:00.  We are talking 7:30/8:00.  He wants to be in denial about that because he thinks he is entitled to sleep until 10:30/11:00.  That's not reality unless you are on the night shift.  Still working on this step.

d.  Be aware of distractions/redirect:  Of course, this is related to his ADD.  It becomes a huge issue when he needs to look something up on the internet.  He can jump down rabbit holes in a heartbeat. He is working on checking up on himself in 15 minute intervals to make sure he is doing what he is supposed to and, if not, redirecting himself.  Again, using his iphone is beneficial for this.  This is coming along, but we are still working on this step.

e.  Continue to take assignments seriously:  We are not concerned about this when he is at college. This has been more of an issue with being homeschooled.  We had one year where he thought (incorrectly) that he didn't have to do work that he didn't feel like doing.  He thought he would get credit for it and move along.  He quickly learned that doesn't happen when you are in high school even if you are homeschooled.  He attended summer school that summer to get caught up.  He worked quite efficiently during that time and finished his work in record times (ADD hyperfocus was his super power during that summer).  This past year he demonstrated that he had learned his lesson.  DONE!!

f.  Meet deadlines:  This will always be difficult for him.  It doesn't mean he doesn't get his work done.  It just means he does it in a way that is very different than anyone else in our house does it with our very left-brained thinking.  It doesn't become a priority (see b above) until it is crunch time (http://www.additudemag.com/slideshow/36/slide-6.html).  He will get on it with such intensity and drive that it is amazing; however, we are working to get him to understand the importance of giving himself some wiggle room with due dates so he doesn't drive himself crazy.  Still working on this step.

g.  Write faster/Use speech recognition:  S is a good writer, and he has A LOT he wants to tell others; however, he doesn't see any sense of urgency with his writing.  He thinks an acceptable amount of time to write a paragraph could be 2-3 hours.  He sees nothing wrong with taking a week to write a 5 paragraph essay.  These are not reasonable times, so we are working on speed.  He distracts himself with Dragon Dictation (i.e. watching the words type out on the screen and not speaking while watching the screen or wanting to go back to correct every little thing immediately), so we are working with him on that.  He has seen how quickly he can write if he uses it in the manner it was designed to be used.  Still working on this step (it is a priority for his senior year).

h.  Set educational goals for self:  He has come so far this past year regarding this goal.  Up until this past year, he would try to deflect the conversation about college and career plans.  Now that he has friends who have graduated, it is a different game.  He has set plans for himself.  He knows that people change their minds and don't have to decide their specific career at the age of 17 or 18; however, you need a plan to start moving forward with.  This will always be a work in progress, but he has a plan for now.  DONE!!

i.  Education requirements for 4 year colleges:  S has decided to start at our local community college and finish 2 years there before transferring to a 4 year program.  He needs to look at courses he will take and make sure they will transfer to the college of his choice.  This will be something he will look at during his 2 years at the community college.  Still working on this step.

j.  Self-awareness for accommodations planning:  S needs to know what his specific needs are when he goes into the Student Services office at college to ask for his accommodations.  This has always been a strength of his, so we don't have any concerns about him not knowing.  He just needs to know he is entitled to these accommodations, and he needs to make the time to go in and ask for them in a timely fashion.  Still working on this step.

Again, there are many things that are still works in process; however, every area is being addressed. It will be interesting to revisit this pillar at the end of his senior year and the start of his college career. What an exciting time for him!

All of this excitement is getting to me.  I think I need to sit on the couch with some chocolate!

Link to Part 1: Four Pillars of Life - Physical

Linking up with:

http://www.weirdunsocializedhomeschoolers.com/

Weekly Wrap-Up: School Supplies, New Label, and a New State Agency

Again, it has been a busy week at our house.  We kicked off last weekend with longtime Army friends coming to visit from South Carolina.  They arrived Friday afternoon.  We all waited, impatiently, for my husband to get back from Washington DC so we could attempt to make our way to Virginia Beach for the Def Leppard/KISS concert.  S is a HUGE Def Leppard fan, so he was quite excited.  Def Leppard did not disappoint.  It was a great show.  Even J didn’t mind the concert.

Saturday:  It was a practice day for J, so we were up early and on the road to practice.  Saturday morning practices are made a little easier by trips to Duck Donuts (yum!).  While at the gym, I was talking to a new team mom.  They have recently moved here, and she is going to homeschool.  I told her if she had any questions I would be happy to try to answer them.  She looked at me and said, “I’m so confused.”  It was nice to be able to answer some questions and encourage her on this new journey.

Our friends spent the afternoon at Busch Gardens.  We didn’t go with them.  Between the two of them, they have 8 children and they were alone this weekend.  We thought they might enjoy the adult time.  They came back to our house for supper.  We had a great meal and a lot of laughs!  Wish they lived closer!

Sunday:  In the morning, we headed out for church while our friends prepared to leave.  My husband and J had to leave at the end of church because J was attending a trampoline clinic.  We enjoyed some family time Sunday evening and ate Papa Murphy’s pizza.  

Lead up to Monday:  On August 8, S went back to the Ophthalmologist to test out some Low Vision tools.  S has always had “vision issues”, but he has never been labeled.  It is now official.  He has Low Vision and was referred to the Virginia Dept. of Blind and Vision Impaired (DBVI).  The doctor told us he would submit the paperwork and start the process.  He said it could take 2-3 weeks.  

Monday:  At 10:05 AM, the phone rang.  It was the intake specialist from DBVI calling about S’s referral.  I was amazed!  This phone call came within 24 business hours of our visit. She talked me through the process and told me that the Education Specialist would be contacting me in the future. Again, I was amazed when I received a phone call a few hours later from the Education Specialist. She said she would need to come and meet with us and asked, “Would Wednesday morning work?” Yeah!  

Practice night.

Tuesday:  J and I went shopping for his school supplies.  Every year, we buy extra supplies so we have them on hand, just in case.  This year I told J to go through everything we had to see what he might need.  It was very nice when we walked out of the store with all of his supplies for under $25. Not a bad deal!

Since J does not have practice on Tuesdays, we had decided that Tuesday nights would be Busch Gardens nights during the summer.  We have yet to get there on a Tuesday.  If we have been home on Tuesdays, it has been a heat index of 100+ degrees or storming.  This was no exception.  It was storming.  We watched a Harry Potter movie instead.

Wednesday:  The Education Specialist came from DBVI.  She was very nice, and we had a good visit.  We found that S falls into a gray area again.  This worker serves kids from birth-high school.  S falls into that category for one more year; however, his vision isn’t impacting his access to education (benefit of homeschooling).  She is going to refer him to Vocational Rehab which we all think will be a better fit and more beneficial for the stage he is at in his life.  She also sent some scholarship links. S was excited about that.

Practice night.

Thursday:  S volunteered at Fort Monroe, so J and I headed to the beach during his shift.  Perfect weather - check.  Water temperature was great - check.  Jellyfish - Seriously!  We spent our time reading and standing with our toes in the water.  I think school should just start when the jellyfish come out.

I ordered myself a FitBit Zip and it came today.  Looking forward to seeing how it works for me.  I am trying hard to walk 10,000 steps/day.

Practice night.  My husband took J to practice.  Once a week, he takes him up to Williamsburg and stays there so he can write for his blog (http://sixbottlestoparis.blogspot.com/). I decided to tag along and have a writing date with him.

Friday:  Hanging out and relaxing.  Practice night.

S has been working on Brave Writer's "Help for High School" and Dave Ramsey's "Foundations in Personal Finance" this week. He finally finished one of his summer reading books - only 2 more to go!

It’s been busy, but I will still find time to be on the couch with chocolate!

Linking up with:

Overheard at the Beach

One weekend, my husband, J, and I were at the beach while S was volunteering.  My husband was walking along the water's edge while J and I were sitting under the beach umbrella relaxing.  While we were sitting there, we heard this conversation take place among the family sitting near us.

Daughter holding a plastic shovel:  "I just dug [brother's name] a port-a-potty."

Mom:  "What?"

At this point, their attention and our attention was drawn to the water's edge where the little boy was at the edge of the hole his sister just dug tugging on his swimsuit. We weren't sure if he was getting ready to pull his swimsuit down or pulling it up.

J and I sat there and laughed!  It was funny on so many different levels.  The best part was that it wasn't my kids who were doing something like that.

I will be sitting on the couch with chocolate and laughing at this memory.

The Four Pillars of Life: Part 1

A couple of years ago, my husband and I were "encouraging" S to do more and more for himself. He felt we were just nagging him.  We tried explaining to him that we were asking him to do things that other teens were doing for themselves, and he needed to do these things in preparation of living on his own someday.  

To give him a visual of what we were trying to accomplish, we made a chart that we call "The Four Pillars of Life".  They represent physical, educational, financial, and spiritual skills that we feel he needs in his life to start out on his own.  This list is created for him based upon his needs. We have a similar list for J, but it has skills that are pertinent to his needs.

1.  Physical:

a.  Getting ready in a timely fashion:  Whether it is his CP or ADD or a combination of the two, S can take up to 2 hours to get ready in the morning.  That is not a reasonable amount of time especially when we know he can get ready in 45 minutes if he puts his mind to it.  Still working on this step.

b.  Setting time aside to stretch:  Stretching is critical for S.  He needs to do it every day, at least once a day if not twice, especially since he has been exited from PT.  Some weeks he is better than others about doing this.  He knows it helps him.  Still working on this step.

c.  Physical activity:  S needs to be active just like we all do.  He enjoys doing Wii Boxing.  He also likes to be in the water.  He rides horse during the school year (it's too hot in the summer).  He enjoys adaptive snow skiing.  We have tried doing Pilates and yoga stretching.  The yoga is easier for him than Pilates. Still working on this step (aren't we all?).

d.  Create a Stretching playlist:  We told him to create a playlist to listen to while he stretches.  He knows that after 4-5 songs he should be done stretching.  He loves listening to music!  DONE!!

e.  Eat correctly:  S is very good about eating foods that are healthy for him.  One issue he has is that he will "forget" to eat if he is playing on the computer, listening to music, watching History programs, etc.  In the past, he would skip meals because his Concerta suppressed his appetite.  In the past few years, we started a split dosage of his Concerta, and it helped with his eating.  We are still working on eating at reasonable times (it's a teen thing).  Still working on this step.

f.  Water intake:  S knows he needs to drink water to help keep his body healthy; however, we are working with him to drink it throughout the day.  He has been known to go the whole day without drinking water and having minimal other liquids during the day.  When it is time for bed, he wants to have all of his water intake at that point.  We have tried telling him that he is not a camel.  He is getting better.  Helpful tools for this include the 24 oz. Tervis Tumbler with a handle.  He can carry this with his crutches.  The Tervis Tumbler water bottle with the screw-on top is also good.  He can hook his finger through it or stick it in his bag.  Still working on this step.

g.  Posture:  This is a work in progress, and it is an uphill battle.  Because of his CP and his scoliosis, good posture is difficult but not impossible.  It is important for him to stand tall and be upright in the correct position because, if he doesn't,  it will cause a number of problems for him later in life that will require surgery to correct.  Trying to prevent that!  Still working on this step.

h.  Taking care of personal needs:  This is an area that he has mastered.  He's not always fast, but he can take care of all of his needs.  DONE!!

i.  Tie your shoes:  We have found a way around this by using Hickies on his shoes.  DONE!!

j.  Organization:  This may never be accomplished.  His ADD mind does not lend itself to organization (http://www.additudemag.com/slideshow/36/slide-9.html).  It is because he has ADD that he needs to be organized.  What we have realized is that the techniques my husband and I use are probably not helpful to him at all.  We have been spending a lot of time telling him what works for us, asking him if he thinks that would work for him, and asking what he thinks would be helpful. Again, he has very creative thinking and thinks outside of the box, so he has the ability to think up ideas that we won't come up with.  It just needs to be functional for him - whatever that might be (http://www.additudemag.com/adhd/article/729.html). Still working on this step.

k.  Use personal bag:  This has come a long way.  He knows his bag needs to be an extension of his body.  He is good about using his bag approximately 90% of the time.  We will call this step DONE!!

l.  Getting around correctly:  For S, this means knowing when it is appropriate to use one crutch or two crutches.  He is good about knowing when it is appropriate to use his wheelchair.  It also means walking correctly and being safe while walking with his crutches.  This has greatly improved over the past couple of years.  DONE!!

m.  Core exercises:  A strong core is the key to S being able to support his body correctly. Again, this is important to be working on since he is no longer in PT.  Some days/weeks are better than others about working on these exercises.  Still working on this step.

n.  Shower faster:  He can take FOREVER in the shower!  Because of his ADD, S has no concept of time (http://www.additudemag.com/slideshow/36/slide-12.html).  When he thinks he's been in the shower for 10 minutes, it could easily be an hour.  We keep telling him he needs to rent a place that has water included in the rent.  Enough said.  Still working on this step.

o.  Cooking:  He has come a long way since we set up the Four Pillars.  We had him back in OT last year to work on some of his ADLs to include cooking.  He can microwave, cook in his toaster oven safely, and he can use the stove.  DONE!!

p.  Shop for self:  This is still a major work in progress.  The most frequent response we get from S is "It's easier if you go."  It is easier; however, it is not helpful to him.  We have told him that his college roommate is NOT going to go to the store for him to buy food, deodorant, soap, underwear, etc.  This is related to the organization skill in knowing that you are running low on something, and you need to make a list.  Shopping trips will need to be planned in advance and transportation arranged since he will not drive.  There is an added level of difficulty in shopping because of his physical disability - getting things off of the shelves, getting heavy items, transporting purchases, asking for help.  He is a fan of online clothes shopping.  Whatever works!  Still working on this step.

q.  Schedule own appointments:  We are working on this, and it is coming along.  The difficult part is the military medical system doesn't really want to talk to "children" when it is time to schedule appointments.  A facility that has online scheduling would be great for him.  We do make him go to the counter at the clinic to schedule his own appointments, and he verifies with me that the time works.  DARS deals with him directly which is nice.  Still working on this step.

r.  Keeping a calendar:  He is working on this, and he knows the importance of this.  Google calendar is his friend.  He knows which tools to use to be helpful.  We are working to get him to understand the importance of using a calendar once he is in college to record due dates and study times.  This school year I will be using a syllabus format and due dates with him, so he can practice recording dates and planning ahead.  He will also be taking an online course, so he will have to be accountable to that instructor.  Still working on this.

s.  Transportation:  At this point in S's life, driving is not in his future.  His mode of transportation has been mom and dad.  We have told him that this will not be his transportation plan forever.  He knows that when he is finished with college he will need to live in a community that has some form of accessible transportation for him (we have traveled to major cities in the US that have "accessible" transportation that isn't the most user friendly).  Where we live now, he can apply for HandiRide.  He needs to work on his application for that this year, so transportation is in place for college.  He needs to take transportation options into account when he looks at 4 year colleges.  Still working on this.

There are a lot of skills in this category, and there are a lot that he is still working on.  Growing up and functioning in life is an ongoing process.  There isn't a single category that he isn't working on at this point.  When we initially brought this up to him, he told us, "That is too much to do at one time.  I will work on one thing at a time."  Life doesn't work that way.  We are handed more than one thing at a time.  The fact that we are working on multiple steps is great progress.  

The other pillars of life will follow in additional posts.  Until then, you know where to find me - on the couch with chocolate!

Linking up with:

http://www.weirdunsocializedhomeschoolers.com/

Weekly Wrap Up: Field Trip, College Visit, and a Concert

What a week this has been!  We had VBS the previous week, so we thought this week would be a little less hectic.  That is not to be in our family.

Saturday:  We went to Richmond for a field trip and a college visit.  We started the day at the Virginia Holocaust Museum.  S will be doing an in-depth study of World War II when we start the school year. This visit along with a future visit to the United States Holocaust Memorial Museum are part of this study.  This museum is good.  It's hard to describe a museum like this that deals with such an intense topic.  The displays are good, and the audio tour was done very well.  It is told by a survivor and follows his story.  We would definitely recommend this.

After the museum, we headed over to Virginia Commonwealth University (VCU) to do a self-tour. We started by parking on the street, and the sidewalks there weren't in great condition.  This is not such a big deal for someone walking, but it is a huge issue when you are trying to maneuver a wheelchair over uneven sidewalks and bricks sticking up in the sidewalk.  That wasn't very impressive to S.  It did improve as we ventured more into the heart of campus.  We have to look at proximity of buildings, dorms, dining hall, student center, etc.  What doesn't seem like a long distance when we are walking is much more difficult as he has to push himself around (a power chair might not be a bad idea).  He was concerned about how busy it is around the campus.  There is a lot of traffic.  We told him part of the college visit is not to only find things you like but to find things you don't like.  He, obviously, would prefer a campus that is not near a lot of traffic (although he really likes a college in St. Paul, MN).  He said maybe we could go back at another time for a guided tour.  

Sunday: My husband was trying to fix the external hard drive to my computer - the drive that I use to back up my computer.  The same drive that has ALL of S's homeschool documents on - transcript, high school course descriptions, reading logs, a 12 page unit study for this next school year, etc. You get that this was a big deal.  My husband tried everything he could think of.  He even went to the Geek Squad at Best Buy.  They didn't have any luck.  As I was envisioning myself spending hours during the week recreating all of these documents from notes I have, I realized that a few of these key documents had been uploaded to Google Drive for whatever reason.  I was so excited when I found the high school course descriptions document, the unit study, and an older transcript which was quickly updated.  I had printed out necessary documents last month for S's junior year.  Not as big of a deal as we thought; however, our itunes library and our iphoto library was on this drive (had just uploaded a few hundred pictures to snapfish a couple of weeks ago).

Monday and Tuesday:  S did some school work this week.  He is working on College Algebra and Rosetta Stone German.  He has also been working on Brave Writer's Help for High School prior to taking an online research class with them in November (registered for that on Monday).  The writing instruction works with his way of thinking.  He is a good writer.  We continue to stress speed with him.  He is also going to be doing Personal Finance this year using Dave Ramsey's Foundations in Personal Finance course.  He has been watching some of the videos.  He is listening to Dave's words - sat down and started looking up scholarship opportunities the other day.

We had planned on touring the local community college with him on Tuesday; however, the tour office didn't return any of our calls until Wednesday afternoon at 4:40.  Not impressed with that.  This is where he is going to start his college education, so we will tour the campus eventually.

Wednesday:  J flew to Minnesota to visit family on July 29.  He came home Wednesday afternoon. He had a great time!  He sent a couple of texts and that was all we heard from him.  He ended his trip with a MN Twins baseball game (a birthday gift from my husband's sister).  He has flown by himself many times, but this was his first trip making connections.  He was a pro.  He was happy that he had enough time in Philadelphia to get himself a Jamba Juice before his flight took off.  He flew in around 1:00 pm, and we were on the road at 4:45 for practice.  

Thursday:  My husband worked a few hours in the morning and then came home since he had to travel up to Washington DC for an early work meeting on Friday.  We spent time doing odd jobs around the house.  We finally got S to look at a calendar and tell us when he is going on his trip to Minnesota.  We purchased his ticket today.  He likes to go in the fall, so he is there for harvest.  He is going for 3 weeks in September/October - one of the benefits of homeschooling (this is why he works on schoolwork  in the summertime).

Friday:  S had an 8:00 appointment with the Ophthalmologist to try out some low vision tools.  I have been reminding him that he scheduled the 8:00 appointment (he likes to complain about how early I schedule his appointments). It was a good appointment - a lot of information and paperwork. We are very blessed with the doctor he has.

We are wrapping this week up with good friends of ours coming to visit for the weekend, and we are all going to the Kiss/Def Leppard concert Friday evening.  S is a huge fan of 80's music, so he has received some early birthday gifts this year in the form of concert tickets (he has already been to the Foreigner/Styx concert).

After all of this excitement, you will find me on the couch with chocolate.

Linking up with: