Teach him how to fall

When our son first arrived home from Bulgaria at the age of 4, we started his PT in Alabama. The PT asked what goals we wanted her to to work on with him.  We told her, “We want you to teach him how to fall.”  This might seem like a strange request for the PT.  There are so many other skills we could have asked for her to list in S’s goals.  As we continued our conversation with her, it made perfect sense.  

As a 4 year old, S was very impulsive.  He didn’t realize that he needed to slow down a little bit. He had a reverse walker and was ready to roll!  The problem came when he fell in the hallway or off of the curb.  When you use a walker, you have both hands on your walker.  When you fall forward in a reverse walker with your hands still on the walker, you catch yourself with your face. Unfortunately, this happened more than once multiple times.

They worked on that skill.  He learned how to fall without using his face to catch himself.  We were so excited with this new skill that we would praise him when he fell.  Imagine the reactions of other people observing us as S fell in the store; praising the boy with a walker for a “good fall” instead of running over to coddle him.  Don’t judge!  He worked many hours to make that fall look that good, and he didn’t catch himself with his face!

As S progressed from a walker to crutches, his falls became different and more frequent. Crutches are much less stable than a walker.  S learned how to handle different terrains and floor types.  

Watching him fall

The natural instinct for those around S is to try to catch him if he falls.  That is problematic at this point in his life. It was different when he was younger...and lighter.  He’s not heavy, but he is like a dead weight when he is falling.  We have had to tell people you need to let him fall.  He knows how to do it; if he does, he will get back up because my son is not a quitter.

What does falling look like now?

As a young adult who is in college, falling looks different for our son.  It is more figurative than literal. Entering adulthood brings more challenges into life.  College comes with challenges - meeting deadlines, getting your work done, studying, turning assignments in, making choices about how to best use your time.  Many of these challenges are magnified due to S’s ADD.

My husband and I gave S quite a bit of guidance first semester as he was learning his way through the process.  He has been given the tools he needs to be successful.  He needs to choose to use them or he is going to fall.

Watching him fall

As I stated above, “the natural instinct for those around S is to try to catch him if he falls.  That is problematic at this point in his life. It was different when he was younger.”  At this point in his life, he needs to learn from his choices.  It doesn't mean we can't holler out an occasional warning about a "trip hazard"; however, there are many times my husband and I need to stand back and “watch him fall.” It’s not easy, but he has the tools to catch himself...or get himself back up.

I will be on the couch with chocolate….reading my book....reminding myself it is okay if he falls. He will get back up. 

The first week of college

My son started college this week.  This is a BIG deal at our house.  S has worked very hard to get to this point in his life.  He hasn’t done this alone.  We haven’t done this alone.  It has taken a village to get our son here.  In the post, “I have been successful”, my son writes about the help he has received from others.  It has truly been a group effort.

Let me tell you about this week.

The day before college starts

This post talks about all we have done this past year to get to this point.  It has been a lot of work, but we made it to the day before.

The first day of classes

I dropped my son off before his morning class.  His last words to me were, “Pray for me.”  Oh, I have been...a lot.

The second day of classes

Today was just one class, English.  My son had already had contact with the professor.  He said this classroom is smaller than the other classrooms he is in, so there are challenges maneuvering himself to the front of the room.  Other students helped get the table where he needed it.  The helpfulness of others has been a true blessing!

This weekend

This weekend we will be helping S get himself organized.  This is a challenge for him, but he is motivated.  He already has his new digital recorder.  He has purchased new Dragon software for himself (appreciate the student discount).  He needed the Premium version which is supposed to transcribe his recorded lectures.  Can we get a Hallelujah for that?  Technology is a wonderful thing!!

In addition to starting classes, my son also had a dental appointment and a chiropractor appointment.  Fun, fun, fun!

Next week should be a routine week of classes for him.  My friend who has offered to help with transportation has already asked about next week.  I told her we need one full week to really work through the logistics of everything - timing for drop off/pick up, tutoring schedules, additional meetings, and which parking spaces are the best options for S to get himself to class.  We had some issues with Thursday’s parking spaces and the path that a wheelchair is expected to get through and around.  S decided he would rather wheel himself for a longer distance than have the closer route.

This weekend will be spent on the couch with chocolate enjoying my son's successful week!

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!

Who knew buying a bag was so difficult?

As we are preparing for our son to start college next month, one of the things S needed to buy was a bag to carry his books and laptop.  Most college students go to a store and buy a backpack, messenger bag, or sling bag, and they are set.  Of course, it can't be that simple. Since most things in S's life aren't easy, why would buying a bag be any different?

Backpacks

Because S will be using his wheelchair on campus, he needs a bag that he can easily get to while in his wheelchair.  Some people who use wheelchairs have no problems putting a backpack onto the handles of their chair and turning around to get things out of it.  S's CP and scoliosis prevent him from turning like that.  A backpack doesn't work.

Messenger Bag

He has a messenger bag that he uses on a daily basis; however, it is too small for what he will need at college.  It also doesn't lend itself to being used in his wheelchair.  Because of the way it hangs on him while he sits, it impedes him pushing himself in his wheelchair.  Sometimes he just throws it around his neck wearing it like a feed bag; however, put a laptop and a textbook or two in there and you are asking for a lot of neck problems.  He doesn't need anything else that needs to be dealt with.

Another issue he has with his messenger bag is that there are too many pockets that he can throw "stuff" into.  The problem with this is twofold:

1.  He has a hard time seeing into the deep, dark abyss that are the pockets of his bag to see what he is looking for.

2.  ADD:  He finds something else that he was looking for earlier and distracts himself from what he is supposed to be finding.

If you are ever doing a scavenger hunt, his bag would be the one you would want to dig through to find random things that most people would never carry around.  Guaranteed that you would probably find it in that bag!

Wheelchair Carry All

S has a Carry All that attaches under his wheelchair seat.  It is nice for carrying things, but it is very difficult for him to get things out of it himself.  It requires him to spread his legs and bend over at the same time.  His CP doesn't allow him to do that.  He can spread his legs OR he can bend over.  Take your pick.

Sling Bags

We think this is the best option.  He is going to have to wear it on his chest rather than his back because he won't be positioned in his wheelchair correctly.  The challenges we have found with a sling bag include:

1.  How is the zipper positioned on it? Is it angled or more a straight line at the top?

2.  What is the size of the bag?  S isn't very tall, so there isn't a lot of body space for the bag to sit on his chest/lap.

3.  Regarding the size of the bag, will a laptop fit in the bag that best fits his body?

We ordered two sling bags, one smaller and one larger.  The smaller one is a great fit for S’s body and doesn’t look like he could fit in it.  We were originally told that he was going to be getting a Surface tablet for school (one of his agencies is providing AT support for college).  The Amazon review for this bag said that a Surface tablet fits with a book.  Perfect!

Not quite so simple….S met with AT and was told he will be getting a laptop.  Guess what is just a little too big for the perfect bag?  The laptop.  We have to decide if he will use the bigger bag which is quite big but would fit his books and laptop or if we start a new search.

Who knew buying a bag was so difficult? Difficult enough that I wrote a whole blog post about it. Go figure!

I will be on the couch with chocolate and the ipad searching for the perfect bag.

A Day at the College

Once again, my son and I were at the college.  He had an 11:00 appointment with the TRIO office on Monday, but we went early since he had other things to do on campus.

To start with, S was exhausted.  We were at a pool party the night before, and he spent 3 hours in the water.  Wore him out!  We headed out in the morning, and it was a balmy 96 degrees with a heat index of 106/107 degrees.  There was a heat advisory.  This is a child who sweats clicking the mouse on the computer in an air conditioned house.

Every time we are on campus, we discuss where we are at and where he needs to go.  We talk about what buildings he needs to be in for his classes.  We look for the doors that have the handicap accessible buttons.  

Just what he wants to do on a day when it is hot. Since we were there, we were going to be productive.  

Stop #1  ID Card

We arrived at the ID card office and read the sign listing the required documents.  S had all of them, but he needed to write his name and student number on his schedule.  No pen.  We decided to use the pen in the office.  "What is your student number?"  He needed to look it up on his phone.  We have been telling him for the past 2 months that he MUST memorize this number. We went into the office, and I quickly wrote his name and number on his schedule.  

The woman inputting the information started asking me questions about S.  This is a problem.  If he is attending school, he surely should be able to answer basic questions about himself (his address).  Then, she told me that S's student number is wrong.  Tell him, not me!  He's missing a number.  Of course, he is!  I said we would go out and look it up.  Another worker in the office had someone else pull it up.  S is missing the middle number in his student number.  (I found out when we left the college 2 1/2 hours later that S knew this earlier.)

They moved a chair so S could back his wheelchair into place for his photo.  They took it numerous times because the lighting wasn't good, but they finally called it good.  He now has his student ID.

Stop #2  Parking Permit

S doesn't drive, but the fee for a parking permit is automatically included in his student fees.  He is going to get one.  We saw online that there is a link to fill out the paperwork ahead of time except for the fact that it doesn't get us to the right spot.  On the signs throughout the hallway, it states very clearly that the paperwork must be filled out online.  We found another link to try.  We were going to stop and ask about it, but there was a line.  No time for that.

Stop #3 Quick tour of the building

These offices are in the building that S will be in for Statistics.  We did a quick recon of the building identifying how to find his classroom and peeked in a room to see what kind of seating they had for students using wheelchairs.  In each room, there is a table in addition to the desks. S knows that he needs to be near the front of the room because of his Low Vision.  We talked strategy to make sure the table gets moved for him.

Stop #4 Disabled Student Services Office

S had to drop off his schedule to get his accommodation letters printed.  The secretary offered to print them while we waited.  We did.  She explained to S what he needed to do with them.  She said if he lost them to come back and she would reprint them.  I informed him if he had to go back in for a reprint he better bring her chocolate!  She did not disagree.

Stop #5 Quick tour of the building

S has 2 classes in this building.  One is on the second floor, so we found the location of the elevator and went upstairs to find the classroom.  We identified locations upstairs to help him find his classroom.  "If you pass this, you have gone too far."

Back downstairs to find the classroom downstairs.  It is well marked.  He shouldn't have any trouble finding that.  He was impressed with the bathrooms on the first floor since they have buttons to open the doors.

Stop #6  Library/Tutoring Center

On our way to his 11:00 appointment, we swung by the library to see where he will need to go for tutoring.  We told him the tutoring center needs to be well known by him.  Use the help they have there for you.

Stop #7 TRIO office

Finally, the reason we were there.  His appointment.  He was there to create his Academic Success Plan.  It was supposed to take 30-40 minutes.  It took 75 minutes, and I ended up in there for the last half.

S was a hot, sweaty mess when we were finished.  There was a trip to Starbucks on our way home.

He still isn't done.  We will be back.  I just hope it's cooler.  Until then, I will be in the air conditioned house on the couch with chocolate.

Getting ready for college

The past week has been quite busy for S as he is checking things off his to-do list for college.  

*As I am writing this, he and my husband are meeting with the Assistive Technology person through DBVI to figure out what assistive technology he will need/use during college.

*S attended New Student Experience (NSE) at the community college the other afternoon.  My husband took him and said there was good information given.

*S paid his tuition the other day, so he is officially registered for Fall semester classes.

*S bought his books for his classes.  Welcome to the reality of college expenses!

*S tried to get his student ID and parking permit, but he can’t do that until July 20.  (He doesn’t drive, but the parking permit fee is already included in his student fees.  If he paid for it, we will get it.)

*At the New Student Experience, S met a lady who runs a program at the college that he is interested in.  He applied to be part of this federally funded program that serves low income, first generation college students, and/or students who have disabilities.

*S purchased his bag for school.  (This might have to be its own post some day.  There is a lot of thought that goes into how he gets things from A to B and how he can maneuver himself to utilize the bag.)

*My husband realized that S needs to be on campus more often prior to classes starting to figure out how to get around.  With his Low Vision, he can’t see the signs on the buildings.  It’s also not just a matter of finding the buildings, he has to find the handicapped accessible doors/ramps into the building.  My husband said they received a really good map at NSE that shows a lot of that information.  S is good with maps.  He just has a poor sense of direction.  He can always ask for help.

*S still needs to get a copy of his schedule to the Disabled Student Services Office. He has already met with them to set up his accommodations for his classes.

It’s been busy at our house!  You will find me on the couch with chocolate and air conditioning.  It has been HOT here this week!

Linking up with:

http://www.lovethatmax.com/

An essay from my son: I have been able to be successful.

My son had to write an essay about himself this fall.  I think he did a great job of explaining himself.  I asked him if I could use it on my blog, and he gave me permission.  I have been hanging onto it waiting for the right time.  That time is now.  My son is graduating this weekend.  

You will find me on the couch with chocolate celebrating this milestone in my son's life. He has worked very hard to get here!

I have been able to be successful.

  “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” (John 9:3 New International Version (NIV)) This was my confirmation verse and it has a special meaning to me because I have multiple disabilities. I’ve been able to be successful because of the people God has put in my life to help me on my journey. I think it is important to advocate for people who have disabilities, so they also have the chance to succeed in life as I have had so far.

I have three disabilities: CP, Low Vision, and ADD. My CP affects everything. However, the CP primarily affects my arms and legs. I started out using a walker. Now, I walk with crutches and I can also walk with one crutch. I can even walk short distances without any support. I use leg braces to help keep my legs straight when I walk. I use my own personal manual wheelchair to save energy and get around quickly when I have to travel long distances. I have always had problems with my vision; however, I recently received the label Low Vision. In the fourth grade, I was diagnosed with ADD. Even with my disabilities, I still have been successful in my life so far.

The reasons for my success are my parents, doctors, therapists, friends, other people and Faith. My parents have battled school systems to ensure that I’ve gotten a good education like everyone else. One school district suggested that I needed to be in a special school as a result of my disability. My parents said no and that I would be attending a regular public school. I have had good doctors and therapists. I have friends and other people who have helped me when I’ve needed help. My friends have made sure that when they plan activities that I can participate as well. At the end of the day, the number one reason why I am successful is because of my faith in Jesus Christ. I always pray for a better tomorrow, especially on the days that I’m physically struggling.

I think it is very important that all children and adults who have disabilities get the services and tools that they need in order to be successful. If they require certain adaptations in order to get tasks done and make their lives run smoothly, I think steps should always be taken in order that people with disabilities have access to them. If a person with a disability requires therapies, medications, or medical care, then I believe that steps should also be taken to ensure that they can gain access to them quickly without getting the run around from other people. I think it's very important to advocate for those who have a disability because I believe that everybody deserves a chance.

In conclusion, I do have a unique combination of disabilities. I have been able to be successful so far in life because I have had some help along the way. Everybody deserves a chance like I have been given.

Save the Best for Last: My Son's View on Having CP

Every week this month, I have interviewed a member of our family about Cerebral Palsy.  I wanted to kick off the series by interviewing S, but he wanted to be last.  I believe he uttered the phrase, “Save the best for last.”  I honored his request and saved him for my last interview. It has been interesting for our family to dig deep and answer these questions honestly.  

What is your diagnosis?

I have Cerebral Palsy Spastic Diplegia (We found in paperwork we have been gathering for SSI that somewhere along the way doctors re-labeled him as having Spastic Quadriplegia. This is probably a more accurate diagnosis.).  I also have Low Vision and ADD.

How does your CP impact you?

It causes my muscles to be naturally tight.  This can be seen in my legs and my arms.  My legs are impacted more than my arms.  It can also slow my speech sometimes.  

What tools/equipment do you need to use because of your CP?

I now use crutches to walk.  I used a walker when I was younger. I use a wheelchair for longer distances and speed.  I use AFOs to help straighten my legs.  I use a keyboard for typing since writing is difficult for me.

You have spent MANY hours in therapy clinics and doctor’s offices.  What are some memories you have of those visits?  

*Regarding the doctor, it was a long drive (we drove to the Shriner's Hospital in South Carolina from Alabama).  

*People were nice, but I didn't really talk to them (I was 4).

*When we were in California, they did e-stim on my legs.  Did you like it?  I don't know if I liked it but I could feel the buzz in my legs.

*I remember wondering what surgery on my legs was going to entail.

You had Botox injections in your legs when we lived in California.  Do you feel that they were helpful?

I think they helped a little bit, but I have no memory of how effective they were (2nd grade).

You had muscle release surgery on both legs here in Virginia when you were in the third grade.  Do you feel that surgery was worth the pain/recovery?

Yes.

Why?

It helped me walk better.

How?

By lengthening the muscles through the release, I was able to walk better.  

Do you remember how you kept saying, "My heels.  My heels." after you had your casts taken off?  Yes.  Why did you say that?  My heels finally touched the ground, and it was a new feeling.

Any other thoughts/memories about your surgery?

*It was a process to get ready to go to the bathroom with my knee immobilizers.

*Once the casts were removed, I had a rash all over my legs.

*I remember the wheelchair they had me use afterwards was a piece of junk.

Why?

The footrests would fall off and not stay in place.  It was hard to move around.  I couldn't really do anything.

What is the most important thing you should do for yourself?  Do you do that?

The most important thing I should do for myself is stretch.  Sometimes I do it.  I don't do it as often as I should.

What things aren’t you able to do because of your CP?

I'm not able to...Let's see....I don't think that's really been identified.  My CP along with my Low Vision will keep me from driving.  I can't go into the military.  

Is that something you wish you were able to do if you didn't have CP?  It would be nice to know I have the option.

What are things you don’t like about having CP?

*I don't like that stretching has such an impact on my ability to get around or not.  

*Even though my braces help me, I don't like having to take the time to put them on.

*Having to use crutches or a wheelchair to get around instead of just being able to get up and go whenever.

What things do you wish you could do if you didn’t have CP?

*If I didn’t have CP to start with, I don’t know if I would be living in the United States since I was adopted from Bulgaria.  Without the CP, I don’t know if I would still be in Bulgaria.

*If I didn’t have CP, going to college in Minnesota wouldn’t cause any problems.  Right now, I’m concerned about the weather and getting around easily.

*I don’t know if there’s anything else.  If my CP were to go away, it changes the equation for my life.  

How?

I think it’s because of the CP that I am able to do and have the experiences that I have right now. I don’t know anything different in my life.

What are things you have been able to do because you have CP?

*I think the idea of going into Carnegie Hall early was related to my physical disability.

*I have attended Victory Junction Gang Camp and met Richard Petty and Kyle Petty.

*Because of my CP, I used to get out of naptime when I was in PreK and Kindergarten.  The school custodian would take me around to help fix things at school.  

*I helped plant a tree at school.

*Because of my CP, I realized firsthand how different the California school system is.  Even though that was a bad experience, I met a really good friend there.

*Because I have CP, my parents and I felt that homeschooling would be a better educational option for me during middle and high school.  Because of this, I have been able to spend time in Minnesota during the fall and going out to my great uncle's farm for harvest.

What equipment do you feel has been the most helpful to you?

*I have a Smart Drive for my wheelchair which I recently got.  I haven't used it much, but I think it will be useful in the near future when I am attending college.

*My AFOs, crutches, and wheelchair are extremely helpful to me.
*Dragon Dictation is a very helpful program for writing.

School Memories:

Alabama:  They were good and pushed me to be successful.  If I needed something fixed/changed to make things more accessible, they were very prompt in taking care of it.  I had the same teacher for PreK and Kindergarten which was very nice.

California:  Oooooh...bum bum bum...I made friends.  The teacher was nice, but she was not very accommodating.  She didn't allow me extra time during timed math tests.  I was left in the room during a fire drill.  I met the principal in the walkway when I left the room myself.  He was very nice, but I don't have good memories of the California school system.

Homeschooling in California:  We went on a lot of field trips.  

Public School in Virginia:  Okay.  Good memories.  Well, anything would be better than California.  Virginia took my education seriously.  One of my teachers took the time to do technology meetings with me after school.  The Assistive Technology person from the district was very helpful.  The teachers were very helpful and accommodating.  The aide who worked with me was very helpful when it was time for standardized testing.  

Homeschooling in Virginia:  Well, there were good days and bad days.  

Was homeschooling a good option for middle school and high school?  I think so.  We didn’t have to worry about a battle for homework.  It provided more flexibility for  me.

Thoughts on college for next year:  I’m not really excited about it, but I know it is the next step in my education.

What are things other people do regarding your CP that you dislike?

*I don’t like when people make assumptions about my abilities because I have CP - like assuming I need to attend a special school.  

*I want people to take the time to talk to me and get to know me, so they understand my abilities.

How do you think your CP has shaped our family?

Our family wants what is best for me, and we will all advocate to get that.

How do you think your CP has shaped you?

Having CP has helped deepen my faith.  There are days that are harder to get around so I have to rely on my faith to get through that.

Any words of wisdom you would like to share with other kids growing up who have CP?

*As stated above, my faith is very important to me for getting through the challenges that CP presents.  

*Do what your therapist tells you.

*If you ever have to have surgery, do everything the doctor tells you.  You won’t want to go through it again.

*Don’t ever let anyone tell you that you can’t do something.

Any words of wisdom you would like to share with parents of special needs children?

My confirmation Bible verse was John 9:3.  "Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."

Any other thoughts?

As someone who loves to study history, it is a little scary to know that in the past people like me who have had disabilities have been killed because of that.

CP Awareness - My Family's Perspective

A Brother's Perspective

Mom's Perspective

Dad’s Perspective

I would like to thank my son for being honest in discussing his Cerebral Palsy with me and his willingness to share it with others.

You will find me enjoying time on the couch with chocolate!