The day before college starts

Here it is!  We made it.  It is the day before college starts.  It has been a process to get to this point. There have been many appointments scheduled, many trips to the college, many assistive technology decisions made, many logistical things that we have had to think through….but it has arrived.  The day before school….

How did we get here?

It has been a process.  We like to tell our son that these are all learning opportunities for him.  I think he’s tired of all of these opportunities.

The following list of blog posts is kind of a picture of what the process has been like the past year.  We started working toward this transition a long time ago, but some things just can’t be done until the end.

6 Steps for Transitioning a Child with Special Needs
When the insurance authorization letter arrives...

Low Vision Diagnosis
We visited the college.

Senior Stress and ADD

Visit with DBVI Vocational Rehab

Get through the wave

Getting ready for college

Ummmm...you don’t know what it’s like

A day at the college

Who knew buying a bag was so difficult?

Stop looking at me!

A Week of College Stuff

College just got real.

Homeschooling was REALLY comfortable!

What have we been doing this week?

This week has been a collaborative effort on our family’s part to make sure that S has everything he needs to be successful.

We have been to campus a number of times in the past week making sure S can get himself around campus.  The challenge he has with his Low Vision is that he can’t see the building names across campus.  He needs to know his exact path to follow to get from A to B.  We have visited campus frequently.  He has wheeled himself around.  We have talked out a path.  We have found landmarks for him to identify.  

Oh...another challenge is that it’s not just a matter of getting to the building and entering a door. He has to find the door that has the handicap accessible button or the door with the ramp.  

One more challenge S has is that he has a horrible sense of direction; however, he is very good with maps and creating a picture in his head.  He has studied the campus map.  We created a campus made of Legos, and he has moved the Lego man around campus and talked about the path.

He has his school supplies.  His supply list is somewhat different than other students.  He has Assistive Technology devices and software to help with his Low Vision and fine motor issues due to Cerebral Palsy.  He is using Zoom Text, Dragon Dictation, and the EmPower program through efofex software (free software for students with special needs to help with math and science equations and graphing) along with:

The Transformer which projects an enlarged image onto his laptop screen.  He has just received this, so he needs some practice with it to see how helpful it will really be.

He received a syllabus already from one teacher with her supplies on it.  We have had to try to figure out exactly what he will need from that list as we look at how he will adapt her requirements to fit his needs.  He has emailed her, and she seems quite receptive to what he has suggested.

S also has ADD which presents a challenge when we are talking about college.  Time management and planning are going to be key in his success.  He likes using Google Calendar and the task list.  He has already entered all of his assignments from the syllabus he has received.  (I won’t tell how long it actually took him to do that task.)

S likes looking at a calendar also.  We have a 4 week calendar on our fridge that he frequently stops by to look at and gets sucked into the “Calendar Zone”.  We purchased a 4 month calendar to hang on the wall near his desk.  J has filled it in for him for this semester and color coded everything for S.

At this point, we believe we have everything in place for S to be successful.  I'm sure we are missing something. I am anxious to talk to him tomorrow afternoon to see how his first day went. As he likes to tell us, “You are more excited about this than I am.”  Maybe...just maybe….

I will be on the couch with chocolate looking forward to seeing how this next chapter in my son’s life plays out!

Ummmm...You don't know what it's like.

My husband and I have two sons, J and S.  J will be a junior in high school and is starting to look at colleges.  S graduated last month.  He starts classes at the local community college next month.   He has paid his tuition.  He has purchased his books.  He has his bag for school.  He has attended the New Student Experience.  We have transportation figured out (kind of).

Our son has multiple disabilities.  He has Cerebral Palsy which impacts gross and fine motor skills and his speech.  He has ADD.  Last year he was labeled with Low Vision.  He doesn't drive.

We have been working with our son for years to get him to achieve his goal of attending college. A few years ago we created the "Four Pillars of Life", listing skills he would need to be independent and successful.  We made sure he had the proper courses in high school to prepare him for college.  We have called various agencies and talked to numerous professionals to make sure we were on the right path of finding appropriate services and getting them in place prior to this point.   Our son works with two Vocational Rehab counselors from two different agencies. He has Assistive Technology people helping him through three different organizations.

Even though we have been very proactive in this whole process, we are still sprinting through this summer trying to finalize everything.  We are taking S to meet with someone in an office somewhere at least once a week.  I think he has been at the community college every week this summer.  He is headed over there again tomorrow.  

A recent conversation

The other day someone we know was asking S about his plans.  He told her that he was attending community college this fall working toward an Associate of Arts degree with a History focus. He intends to transfer to a 4 year school when he is finished at the community college.

This woman came up to me afterwards and said that S had been telling her his plans. I said we had been crazy busy this summer trying to get everything into place for him.

Her:  "Oh, I know what it's like."

Me:  Ummmm........(killing time....dramatic effect....trying to figure out how to respond)....

[What I wanted to say:  You do know what it's like to send your son off to college but you have NO IDEA what it is like for us.  You don't know what we are going through to send our son to a school 20 minutes down the road.  You didn't have to come up with a game plan more than four years ago just to try to get services in place that we are still working through, and S got a new label and a new organization thrown in his lap last year.  You haven't had to deal with all of these agencies that are known by a group of letters.  Your son doesn't have to keep a binder full of paperwork from all of these organizations in addition to doing the required stuff for college.]

What I said:  There is more involved than just sending him off to college.

Her:  Oh, I'm sure you have to do a little more.

Yup!  That's right.  A little more....

You will find me on the couch with chocolate (and possibly wine) because, if you are reading this, you know what it's like.

The Four Pillars of Life: Pt. 4 Spiritual

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.  

4.  Spiritual:  This is very important to us as a family and as parents.  

a.  Daily Devotion:  ONGOING!!

b.  Regular worship:  Remember back in Part 1 where I talked about S taking A LONG time to get ready in the morning, but we know he can get ready quickly; that is because he gets ready quickly on Sunday mornings.  Part of that could be because we have left him at home a couple of Sundays in years past because he didn't make it on time.  He learned.  Attending church is important to him, so he makes it a priority to be ready. ONGOING!!

c.  Bible study:  ONGOING!!

d.  Spiritual maturity:  This will come as he grows up.  He is a work in progress as we all are.  He has a deep faith in God and works on growing his relationship.  Still working on this step.

e.  Correct Biblical application:  Sometimes S has been known to quote Bible passages in a manner that was not meant to be helpful.  As one of our pastors has told the youth, "Don't be a jerk for Jesus."  The kids get that.  This has improved and goes hand in hand with spiritual maturity.  Still working on this step.

f.  Service to others:  S loves to volunteer.  There are few things in our church that he isn't willing to help with.  He has a way with people.  They are drawn to him, and he is comfortable talking to anyone.  As mentioned in Part 1, he has expressed some interest in mission work. We can see him doing this.  We have explained to him that it is a calling, and he needs to pray about it.  This will always be an ongoing step since we are never done serving others. ONGOING!!

We are anxious to see God's plan for S's life play out.  There will be some great things coming in his life.  He will go on to do great things!

You know where to find me - on the couch with chocolate!

Link to Part 1: Four Pillars of Life - Physical

Link to Part 2: Four Pillars of Life - Educational

Link to Part 3:  Four Pillars of Life - Financial

6 Steps for Transitioning a Child with Special Needs

From the moment we become parents, our job is to prepare our children to leave home and go out into the world.  We teach them how to get dressed, to feed themselves, to go to the bathroom (in appropriate places), and how to get along with others.  We make sure they have an education that is appropriate for them.  Some children will go to college, some will go to technical/trade schools, some will get jobs.  Some children will move out right away, some children will stay home for a while, and some children may never leave home.  

From the beginning, our plan for S has been that he will attend college, get a job, and move out some day.  Through his academic years, we have realized that college is a reasonable goal for him.  Since he became a high school student, he has heard us tell him at least once a day, “You are not going to live at home forever, so what’s your plan?”  On days that he is less inclined to get his schoolwork done, he might hear this repeated multiple times.  

How do we go about getting this particular child into college so he can get a job and move out?  

1.  Prayer, prayer, and more prayer!

2.  Education

3.  Testing

4.  College visits

5.  Finding resources to assist with these plans

6.  Creating a family plan

Prayer:

Philippians 4:6-7  “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Education:

In the 8th grade, we looked up different colleges and saw what they required for high school courses. Our education plan for him included making sure he had all of those courses.  There have been many times he has told us he wished he didn’t have to take ____ (fill in the blank). Not an option if you want to graduate from high school and go to college.  Some classes are optional. Science and math classes are not.

Testing:

Planning for the SAT or ACT is different for us with S than it will be for J because we have to get accommodations in place, and that process is easier said than done.  We have searched the websites; we have made phone calls; we have talked to our case manager at the hospital; we have contacted the special needs coordinator through our state homeschool organization. No one can give us much help.  ACT provided the most help on the phone.  Most suggestions are contact your high school counselor.  Sure, that is us (mom and dad).  Now we know that we can’t be the first homeschool family to try to get accommodations for our child, but it sure feels like that.  As S’s 5th grade principal told me a few years back, “You might very well be the first ones asking for this.”

We found a counseling center that would do psychoeducational testing on S and provide us with recommendations for testing accommodations.  Their results weren’t anything different than we would have asked for except that they aren’t coming from mom and dad.  Because he requires so many accommodations, we decided that it was going to become a hassle that we just didn’t feel like battling.  Our energy and his energy can be better spent finishing up his high school education, making sure he is prepared for college, and making sure the college is prepared for him.

We decided, in the long run, that S will start at the local community college where he doesn’t need to take the SAT or ACT.  Will he lose out on some scholarship opportunities?  Maybe. Maybe not. It depends how well he would have done on the test.  The time we have gained by not worrying about getting accommodations or testing, we can use to find other scholarship opportunities for him.  

College visits:

Our pediatrician, who is a wonderful man, told us when S was a 9th grader that we would want to start visiting colleges a year earlier than usual because there were so many different aspects we would have to consider.  He was right.  We are looking at facility accessibility along with academics. The office we most want to visit is the office that serves students with disabilities. Each school has one, but they are not all created equal.

Because S has decided to start at the community college, we have some extra time in our timeline; however, he has visited some colleges which has been beneficial.  He will have to coordinate transferring credits when it is time.  He has currently visited two colleges in Minnesota-Concordia St. Paul and Southwest Minnesota State university.  He would love to attend college in Minnesota because it is where all of our family lives (my husband and I both grew up there).  We are okay with him looking there because he would have a huge support network there.  Of course, looking at schools that far away means he needs to have a solid plan in place for himself to transition there.  He needs to look at many areas of his life and make sure everything is in order. He has also visited VCU in Virginia. He didn't really like how busy it was around campus, but he hasn't completely ruled it out.

Available Resources:

This is where life gets tricky.  There are so many agencies and resources out there.  Some are state specific.  Some are disability specific.  Some are dependent upon showing financial need. Some are for those who are on SSI and Medicaid.  Some depend upon the level of disability.  S falls into a very gray area as he has so many times throughout his life.  Obviously, we can look at what the state of Virginia has to offer - the Department of Aging and Rehabilitative Services (DARS) - he is now a client.  We don’t have financial need.  He’s not on SSI or Medicaid and has no desire to apply.  His level of disability is severe; however, he does not have an intellectual deficit.  Fortunately, I am great at searching for things, and his dad loves to get on the phone and make phone calls. [Since I initially wrote this post, S has also become a client of the Department of Blind and Vision Impaired (DBVI).]

Creating a Family Plan:

My husband and I sat down a couple of years ago and created a plan for S and J.  We call them the Four Pillars that they need to have to be successful adults.  It lists different categories and skills that need to be achieved to go out into the world.  S’s response was, “I can’t work on all of those.  I will work on one thing at a time.”  Not how life works.  He is the king of doing one thing at a time and doing it well (could be his hyperfocus related to ADD).  In the real world, we know we are juggling more than one thing at a time to get through life.  J was more receptive to it; however, he was younger at the time so it wasn’t as real to him.  It is a little more real now that he is a sophomore.

This just all seems like a lot of work.  If I kept them home, they could wait on me while I sat on the couch with chocolate.  Not a good idea!

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/