T Week: To do, Trip, Transition

The Senior

S has been busy working this week on his two remaining classes:  English and German IV. For English, he is still doing daily journaling and editing along with his To Kill a Mockingbird literature study.

S's inclination is to sleep in every morning, but that won't help him finish his work.  There is a balance there.  He was better about getting up once he looked at a calendar and realized he might not be finished by the target ending date.  “In order to get your work done, you must get up in the morning and work without distracting yourself.”  He has heard this a time or two thousand.

S took some time off Tuesday afternoon to watch some live stream sessions from a work conference that my husband was working/facilitating.  He enjoyed that.

S went to Youth group Wednesday night.  We are lucky that we have friends from church who live near us whose son also attends youth group.  They picked S up and brought him home. He had to wait to come home until their son was done with music practice after youth group. He didn't care as long as he could get to youth group.  

He had horseback riding this morning.  This weekend he isn't volunteering.  We are going to take some time and try to finish up some tasks on his to-do list which include contacting people and coordinating some appointments.

The Sophomore

J had kind of a crazy week.  I had to pull him out of school Tuesday for a couple of hours to go to the Orthodontist.  He had a bar put on his bottom teeth, and he finally heard the magic words, "We are almost done."  So almost done that we have scheduled the appointment for "debanding". Yeah!!!  

He came home from school Tuesday afternoon and the bar was already loose.  Back to the Orthodontist we went.  The staff member who needed to fix it wasn't there, so he had to go back Thursday morning.  He missed a little bit of school again.

He has been doing AP History review.  He had a math test, Chemistry test, and Spanish quiz this week.  He took his final test for Drivers Ed, so now we can look at scheduling his behind the wheel instruction once he gets his “green card”.  Unfortunately, I don't think he can do that until July.  It would have been nice for him to finish that before school was out.  

J had practice for 17.5 hours this week.  They are working skills and conditioning.

On the Homefront

Last weekend we sat down and planned a tentative route/timeline for our trip to Minnesota this summer.  We are driving.  We never drive there.  We fly.  The boys are NOT excited about the road trip.  They don't really believe us when we say it will be fun.  We are driving because we have to transport the items for S's graduation party.  Also, we are going to do some college visits for J on the way.  He is going to tour the University of Minnesota and possible the University of Iowa.  S may go visit another college too.

We also went to Busch Gardens on Sunday.  They have a new roller coaster, Tempesto, that opened last weekend, and the boys really wanted to go try it.  It was quite chilly and rainy here, but Sunday afternoon it cleared up and warmed up a little bit.  Off we went.  I did not ride it. Just watching it made me want to throw up.  My husband, J, and S rode it.  S has always been the daredevil and thrill seeker, but one time on this ride was enough for him.  It is, however, J's new favorite ride.  He and my husband rode again.  S and I bought popcorn and a pretzel and enjoyed that instead.  There are a couple of roller coasters I do ride there, so I had the opportunity for some fun also.  My husband told me he felt bad that I had to sit there while they rode.  I told him that was a much better option than me riding and throwing up (motion sickness).

After a fairly relaxing weekend, it was a busy week for us.  My husband was up in Washington DC for four days for a work conference.  He was quite busy.  I was busy since he was gone.  I had drop off/pick up for three days.  He was home in time Thursday night for pick up.

Because my husband was gone, I had a lot of time to spend at Starbucks this week since I stayed while J was at practice.  It gave me the opportunity to create a very detailed to-do list for everyone and for S's graduation party.

J told me that he appreciates my very detailed to-do lists.  My husband said, “You know what S will say.”  Oh yes, I do.  Yesterday, he told me what we knew he would say.  “I think it’s funny that you get to sit and create to-do lists for everyone else, but where’s your to-do list?”  There is a story there that involves a broken arm, surgery, and an 8 month recovery.

I spent time getting needed addresses for invitations.  I also used this time to look up some information for myself about things I might want to do as I make my transition from a homeschooling mom to mom.

What did I write this week?

Transitioning Mom

I will be on the couch with chocolate and my many lists.

Linking up with:

Cerebral Palsy Awareness: Mom's Perspective

For today’s post, I answered my own questions on being the mother of a child young adult who has Cerebral Palsy.

What were my thoughts when we first made the decision to adopt a child who had Cerebral Palsy?  

When we were ready to adopt our second child, we knew we would adopt a child who had special needs.  We initially thought we would adopt a child who was deaf or hard of hearing since that is my specialty area in special education. We thought that would be a good match for us....God had other plans for us.

When we identified S as the child we would adopt, we immediately started learning about Cerebral Palsy. We didn't know much about it. On our initial adoption paperwork we filled out, we checked "possibly" for Cerebral Palsy. We knew it was what we were supposed to do. Since Cerebral Palsy impacts each child differently, I will never profess to be a subject matter expert on Cerebral Palsy; however, my husband and I are subject matter experts on the impact it has on S and his life.

What were my preconceived notions about what life would be like?  

I envisioned us doing many of the same things we did with J:  going to the playground, continuing with activities that we were already doing, teaching S how to do the same things other kids were doing.

What things didn’t I take into account?

*I didn't realize how much of our time would be spent at appointments:  doctor and therapy.  
*I didn't realize the battle we would have with insurance companies to get durable medical equipment. [I don't think asking for a basket for my son's walker so he can carry things would be considered a "luxury" item.]

*I didn't realize how far we would travel for some of these appointments.  When we lived in Alabama, S saw doctors in Mississippi, Florida, and South Carolina.  One doctor came from Louisiana.

*When we lived in California, we drove 2.5 hours up to Sacramento to the Shriner's Hospital for Orthopedic care.

*Appointments became easier when we moved to Virginia.  All of his specialists are located at the Naval Hospital which is about 45 minutes from our house.

*I didn’t realize how much harder he would have to work to accomplish the same tasks as other people (daily living skills, school work, talking).

*I didn't know how many people would approach me in various places with ideas on how to "fix" my son.

*I didn't realize how many stereotypes he would have to battle to prove his ability.

What things surprised me about S and his CP?

I was and still continue to be amazed by his determination.  Don't tell him he can't do something!

Were there differences in how I parented S and J?

This question can be answered yes and no.  The expectations for both of them were the same. The differences weren’t related to S’s CP; they were related to his personality.  They are both strong willed children, but J knew when it was time to stop doing something.  S would try to see how far he could take something and hope that there wouldn’t be any repercussions.  He was very familiar with the time out stool.  

Do I think it will be different parenting J as he approaches adulthood than it was parenting S?  

Yes.

How?

In parenting S into adulthood, there have been so many deliberate choices and plans that have had to be made.  J will need to make decisions and plans also; however, they will happen more automatically in life rather than deliberately.

With S, there has been definite instruction on independence skills.  We have had to think a great deal about how he can best do something and utilize different tools to get things done.  J will just do the things and has been able to pick these skills up through modeling.  

As S approached his senior year and turning 18, he spent a lot of time in denial.  J isn't there, but I don't think he will be in such denial.  J pegged it correctly for S, "It is scary."  Life is going to be scarier for S than it will be for J.  S knows that he faces challenges in life that others don’t have to face.

Any words of wisdom for parents of young children who have CP?
*Take care of yourself.

*Have a sense of humor. Laughter is the best medicine. Sometimes you just need to laugh.

*Enjoy their childhood!  It will go by quickly. You will be busy dealing with so many other things - medical, insurance, education, therapists; it can be easy to forget to enjoy time with your child.  
*Let your child do whatever he/she is capable of even if it takes a little longer.  

*Find a good team you can work with.  You are going to spend a lot of time with doctors, therapists, and teachers. You want to spend time with people you like and respect.

*Stand up for your child.  You know him/her best.

*Keep good paper trails!
*Be proactive rather than reactive. We used to always tell S's teachers, "Tell us if you think there is a potential problem rather than waiting until it is a problem." We were in constant communication with school staff making sure everything was okay.
*Determine which battles are important ones to fight.
*Don't let other people bring you down.  They have no idea what you are going through.

Anything I wish we had done differently?
Relax and don't stress so much!  It all turned out okay.  I wish I could go back and tell myself that.

How would our life have been different if S didn’t have CP?  

I don't even know how to answer that question.  There are things that would have been easier for our family to do.  Any time we have planned a trip, we have to look at accessibility and discuss the feasibility of S getting around without missing out on things.  Because of that, we are very close and spend a lot of time talking about things.  J has become very aware of accessibility issues and whether or not someone is able to participate in an activity.  

On a more humorous note, we wouldn't have to start getting ready so early to go someplace. When we figure departure times, we have what we refer to as the "S" factor. To be honest, more of the time spent getting him out the door is related to his ADD; however, that combined with his CP is an interesting combination.

What opportunities would we have missed out on?

*We have met some amazing people on our journey - therapists, doctors, teachers, other families, service providers, people from service organizations (Shriner's Hospital), staff at camps.

*Because of S's CP, we have been campers at Victory Junction Gang Camp multiple times - family camp, sibling camp for J, and physical disabilities week for S.

*S has had the opportunity to participate in adaptive snow skiing which has been great for him and educational for the rest of us.  We have seen people of all abilities and ages come tearing down the mountain.

*S has participated in therapeutic horseback riding for a number of years.  We have had the opportunity to meet so many wonderful, caring people who have volunteered there and who work there.  They are all very interested in his future and his forward path.

How do I think S’s CP has shaped our family?

Our family has an interesting dynamic.  J went from being an only child for two years to becoming the youngest child. He exhibits many traits of the oldest child.  Is that because we adopted out of birth order or is it because his brother has a disability and J has taken on extra responsibilities?  

S having CP has made our family very aware of disability related issues.  We are very open in discussing these situations and talking about the rights of all people.

Our family is very close, and I think this is because of everything we have to do on a day to day basis.  It is our normal.  It is a family effort to help S become independent.  We have family discussions about what we can/can't do to help him or what is/isn't helpful to him.

How do I think S’s CP has shaped him?

*S's CP doesn't define who he is but it has shaped him.  He is very strong willed which is helpful for his self advocacy.  When he was young, we alway said if we could harness his stubbornness to use it in a positive manner there wouldn't be anything that he couldn't do.

*S doesn't view himself as disabled. He knows he has to do things differently than others, but it is his normal. The problem we have now is when he is dealing with different organizations trying to figure out where he needs assistance or accommodations; he tells them he doesn't need accommodations. Our house is set up for him, so he doesn't view it as anything extraordinary. We want him to always think of himself as having the ability to do whatever he chooses. He just needs to know what tools he needs to be successful and to ask for those tools.

*S has a deep faith, and he knows that God created him this way.  We talk about how God intends to use him throughout his life.  He has impacted people since he was young with his drive, determination, personality, and perseverance.  When we lived in Alabama, elderly people would come up to us at the hospital and talk about how seeing him helped them change their attitude for the day. One person told me, "I woke up this morning and felt sorry for myself. Then I saw your son come tearing through the doors, and I decided I needed to stop."

How do I think S’s CP has shaped me?

S having CP has helped deepen my faith.  It started from the moment we identified him as our son.  I knew this was what God intended for our family.  I have spent a lot of time in prayer asking for guidance and patience.

I have always been a person who wants what is right for people, yet I don't like confrontation. That being said, I will fight tooth and nail to get things for my son that he needs or is entitled to for his education or medical care.  There is a whole different side of me that has been seen at IEP meetings.  I am aware that I can do that, so my husband and I have a system.  If he gets a leg squeeze from me, he knows he should speak up because I am about to say things that might will not be very nice.

There you have it.  A little view of how my son’s Cerebral Palsy has impacted me and those around me.  I will be hanging out on the couch with chocolate reflecting back on how far my son has come.

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.

Linking up with:  

                                         http://www.weirdunsocializedhomeschoolers.com/

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!

Last day of school!

It has arrived!  What an exciting day at our house.  I think my husband and I are more excited than the kids because we are going to get more sleep.  

Because our youngest son attends public school, he needs to be out the door by 6:25 a.m.  Because this same child practices gymnastics 4 nights/week and Saturday mornings, we don’t get to eat many meals with him.  So, every morning we get up and have breakfast with him.  That means we are up at 5:40 am.  I have never been an early morning person; however, I know these years will go by quickly so I am enjoying the moment (that’s what I keep telling myself at 5:40).  That doesn’t mean that I won’t enjoy the extra sleep this summer.

[So there is no confusion, our older son does not get up to have breakfast with his brother every morning.  He feels there is no reason to get up that early since he is homeschooled.  Can’t blame him there.]  

I am so looking forward to summer break!  When I’m not sleeping in or at the pool or the beach or driving my children around to various activities, you will find me on the couch with chocolate!

What do you do all day?

I was speechless when I was asked this question a few years ago (some people will tell you that doesn’t happen very often).  Ummm….

“I sit on the couch and eat chocolate all day.”  

Chuckles from everyone at the table; however, one person there was a little concerned about this conversation and let my husband know what was happening.  He told her I could handle it.

I have not been asked this question before, so I went with the easy answer of saying, “I homeschool S.”

“I know, but what do you do all day?”

How to answer this question?  Do I tell this person how many hours I spend homeschooling my child? Does this person have any idea how much of my day/my life has been devoted to this one child helping him to be all he can be despite his challenges with Cerebral Palsy (CP)? Does this person have any idea what it is like to parent a child who has ADD and CP along with other medical issues? Does this person realize I have to balance my time between this son and my other son? Does this person realize that I do enjoy spending time with my husband? Does this person realize how much my husband travels? Does this person realize I am: balancing a public school schedule and a homeschool schedule, scheduling appointments for both children, ensuring that everyone has the medication that they need and it hasn’t run out, making sure they both get to their extracurricular activities and church activities, making sure homework is done, making sure everyone has clean clothes, buying groceries, attempting to clean the house, and doing whatever else I can to make sure we all get through life? Does this person realize that I need to get through all of these things so I can get to what I enjoy which is just spending time with my family-laughing, playing games, being together?

I sat there, contemplated the question, and decided that this person probably would not grasp what my life is like.  My very well thought out response was , “This month I took these two children to 17 doctor’s appointments.  That is what I do all day.”

Yeah, I’m a mom.  That is what I do all day except when I’m on the couch with chocolate.