We Chose This Life

We have a child who has special needs, and we chose this life.  S was adopted at the age of 4, and we knew that he had Cerebral Palsy.  It was a choice we made.  We had a checklist we had to fill out as part of the process.  

What does that mean?

Because we chose this life, we had months to learn about CP.  We had time to talk to professionals and the school to get their input.  We could prepare others for his arrival.  We had doctor’s appointments scheduled for him prior to bringing him home.  

We had to visit S in Bulgaria prior to his adoption being finalized.  This allowed us to see what he could do and take video to bring back to the professionals who were going to work with him. He received PT 5 days/week in his orphanage.  

Even so,

we have pulled every trick out of our bag and then some to parent this child - not because of his disabilities.  He is a strong-willed child!  We have always said if we can channel that energy into him advocating for himself then he will be just fine.  

As S is approaching graduation, we can see that he is there.  He is still strong-willed, but he uses that strong-willed personality to help himself be successful.  Don’t ever tell him that he CAN’T do something.  

Through the years, we have added a few more labels to his medical diagnosis (ADD, Scoliosis, Low Vision). He likes to tell us, “I am the enigma you call S.”  To this I say, “Amen!”  He is an enigma.  He is a very unique shape that society wants to place in a standard shape opening. That doesn’t work!

You will not hear us complain about his disabilities.  Because we knew.  We chose this.  We might complain about his teenage behavior and attitude.  Did we know everything we were getting into?  Absolutely not!  Would we have it any other way?  No!

I will be on the couch with chocolate appreciating all the blessings I have in my life.

Gymnastics, Horse Show, Break

On the Homefront

I am mixing my format up this week!  I figured that I should explain how crazy busy last weekend was in order to wrap everything up for the week.

Friday night we headed up to northern Virginia for J’s state gymnastics meet on Saturday.  We slept in Saturday and headed over to the Udvar Hazy Center which is an annex of the Smithsonian National Air and Space Center.  My husband, J, and I have been there before. S had not.  He loved it!  For my history loving son, there isn’t anything much more exciting than seeing World War II aircraft.

After a late lunch at Saladworks, we headed out for J’s meet.  He had a great meet!  After the meet, we ran to Starbucks and then ordered pizza.  We ate at 11:15 that evening.  Sunday morning we were up because we needed to be back for S’s horse show.  I was able to get his time slot changed from 11:15 to 2:00.  That was wonderful.  We could leave a little bit later.  It allowed us time to stop at Quantico for Jamba Juice.  It’s the little things in life that make us happy.  

We arrived an hour ahead of time for the horse show which gave us time to visit with other families and staff at the arena.  The weather was very nice for the show.

That brings us to Monday.  We were all quite tired on Monday.  It was a fairly routine week which was nice other than my husband coming home sick from work on Wednesday.

This weekend will be more relaxing than last weekend.  Thank goodness!  

The Senior

S was not excited about having to go up to northern Virginia with us; however, he had a great time at the Udvar Hazy Center.  He is ready to go back for a longer visit.  He enjoyed looking into the restoration hangar area.

He rode well at his horse show.  He has come a long way since he started riding out there. One of his former instructors was there to watch, so that was nice.  His side walker was able to be there since they switched his time to the later slot, so he was quite happy about that.

This week for school S finished his research paper!!!  He continued to work on College Algebra, History, daily journal writing, editing, and German IV.  He is almost done with the book, Without You, There is No Us.  He is on a 2 week break right now.  I’m sure he will be keep busy watching History videos and sleeping.

S has been busy finishing up some of the life paperwork things he needed to do.  He filled out his application for transportation on Sunday.  He also needed his doctor and ophthalmologist to fill out some papers for the application process.  He received an email Wednesday evening saying it had been processed and approved! Amazing!  Now, we just need to figure out how it all works.

He looked at some Career Interest websites since he will need to create his plan for employment with Vocational Rehab.  He gathered some documents together for his SSI application. He's getting quite annoyed with all of the processes and paperwork.  I understand, but it all needs to be done.  It was encouraging to hear back so quickly on his transportation paperwork.

S had a chiropractor appointment on Monday. He will start going every 2 weeks instead of every week. He has horseback riding this morning and will volunteer 4 hours on Saturday.

The Sophomore

I have to start J’s section off with an update on his state meet.  If you will allow one very proud mother to gush a little, stay with me.  He had the best meet of his season!  He improved his score in 4 of the 6 events and his All Around score.  He took 9th on floor, 11th All Around, and 1st on Parallel Bars!  This mother may or may not have been screaming, hooting, and hollering quite a bit!  He qualified for the Regional meet which will be next month.

Thanks to my husband for taking pictures and video taping the events.  My job is to text scores to family, friends, and our coach’s wife.

In addition to his exciting weekend, J had AP History homework to complete.  He had a Driver’s Ed test, an AP History test, and a Chemistry test this week.  He has an AP History project due on Monday and a Spanish project due on Tuesday, so he will be busy this weekend.  Can you tell the end of the quarter is coming? I promised Starbucks as a treat.  He has one week left of school before he is on break.

This week J had 17.5 hours of practice.  He is working on some new skills to include at the next meet.

What did I write this week?

California School Experiences

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

Therapy with Games

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Therapy with Games

During our many snow days last month, we played a lot of games.  When J pulled out the game Trouble, it took me back to a time in Alabama when we realized S couldn’t push the bubble on the game to roll the die.  His Occupational Therapist told me to bring the game to therapy, and they would work on it.

Any type of game is beneficial for S because of the fine motor skills involved - holding cards, sorting cards, rolling dice, organizing and manipulating dominos, pushing the bubble on the Trouble game, moving game pieces.  Games can also be beneficial for vocabulary, math skills, logic, and strategy.  Games involving speed tasks are difficult for S.  Pictionary is a challenging game for him also; however, it is still beneficial.

S tends to pick dice games over card games.  He enjoys cards but manipulating the cards can be a task.  We have two different card holders for him.  He prefers the one that holds the cards in a straight line.  It is easier to put them in.

He also enjoys playing dominos.  We have domino holders to help organize his dominos and make it easier to manipulate them without knocking them over.  He will not create a train for his dominos.  Not sure why.  If we help him create one, he doesn’t follow it.  

Games in Minnesota

When we were in Minnesota for Christmas, we played a lot of games.  During one card game, my cousin, who had worked on her doctoral degree in Special Education, was sitting next to S. She just kept shaking her head.

The following conversation took place between my cousin and me:

What’s up?

I just can’t figure this out.

What?

I have no idea how he is organizing his cards.  I can’t figure it out.  It doesn’t make any sense.

S laughed because he was beating all of us at this point.  He then proceeded to tell us, “I am an enigma and can’t be figured out.”

Although playing games is fun, it is also a great tool for therapy.  Fun and good for my child.  I like that combination!

S’s Favorite Games

Fill or Bust

Dominos

Spinner Dominos

Apples to Apples

In a Pickle

Ticket to Ride

Risk

I will be on the couch with chocolate enjoying some family fun time.

Linking up with:

http://asheleadsisjoy.blogspot.com/

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!

California School Experiences

When S was finishing up first grade in Alabama, we found out we were moving to California. We were excited when we were notified of our upcoming PCS (permanent change of station). When I had taken my Education courses in college, we heard about how progressive California schools were.  Imagine the possibilities for S in these progressive schools!  Knowing what had been done for him in Alabama at a Department of Defense School (great experiences), we could only imagine what California had to offer.  Imagine was all we could do. Here is what we encountered....

Early notification:

While we were still in Alabama, my husband called the school to talk to them about our upcoming move and the fact that S would be attending their school.  Their first response when told we had a child who had Cerebral Palsy was, “He will go to a special school.”  Really? The only information you have about him is that he has a disability.  You don’t know the severity of it, what his functioning level is, etc.  Papa and Mama Bear came out, and he attended that school.  As my husband said, “If you want to call your school special, you are right.  He will attend a special school.”

Playground:

S was asked to not play on the playground equipment because he might get hurt. Don’t the other kids ever get hurt on the playground equipment?  

Special Education Teacher:

After I sent a clarification letter to the Special Education teacher after our initial IEP meeting, she asked me in the walkway, “You are going to keep me on my toes, aren’t you?” (Thank you Wrightslaw).  

Emergency Evacuation Plan:

S was left in the classroom during a fire drill because the staff member (see above reference) who was supposed to get him didn’t.  Her response the next day to him (a 2nd grader) was, “You got out, didn’t you?”  

Classroom:

Spelling tests were given when he was at Adaptive PE so the teacher didn’t need to wait for him since it took him longer to type his answers.  

He wasn’t given extra time on the timed math facts tests if he had to write for himself because that wouldn’t be fair to the other kids.  

Field Trips:

S’s class went on a number of field trips during the school year.  That was good.  The problem was the school REALLY expected either me or my husband to chaperone to “help” with S.  My husband was in graduate school, so his attendance on the field trip depended upon his school schedule.  

Since I am a SAHM, I could usually go with; however, for one field trip, I ended up being very, very sick.  I was going into my fourth week of strep throat (I don’t have a spleen).  After an emergency visit to the ENT, I was placed on bed rest.  I was told I could only get out of bed to go to the bathroom and make sure my children had something to eat.  Needless to say, I wasn’t going on the field trip.

The teacher went into slight panic mode when she found out that neither one of us would be attending.  Here’s the deal, S is quite self-sufficient.  He was going in his wheelchair. He just needed some extra assistance maneuvering his chair around.  He might need help getting his drink open.  Not much more help than any other 2nd grader might need.  The school was able to get the Wednesday afternoon aide to come along to be his helper - not much of a stretch since she was going to drive the bus.  The biggest issue was that his wheelchair would be taken apart and stored in the storage compartment under the bus.  “Who is going to be able to put his chair together?”  (Really? It involved sliding the two wheels onto pins.)  My husband had to clarify for the teacher that the dads who were chaperoning, and had degrees in aerospace engineering, would be more than qualified to put the wheels on the chair.

End of Year Testing:

At the end of the year, we were asked if it would be possible to keep him home during standardized testing.  My husband told them that anything was possible. We asked if other students were being asked to stay home during testing. This question was never answered. Needless to say, S went to school.  

Homeschooling:

After all of this, the school was surprised that he was homeschooled the next year until we moved again. As his Adaptive PE teacher told me the next year, “They have not had to deal with parents like you before.”  We decided to take that as a compliment.  [We were very visible and vocal parents at the school. Can you blame us?]

Side note:  Despite all of this, our youngest son had a great time and experience there.  There were good teachers there.  You would have thought the two went to two different schools to hear us talk about their school experiences.  In fact, people who heard our stories asked us if they went to different schools.

Through all of this, our children have both learned how to advocate for themselves and stick up for each other.  What more could we want?  Maybe some time to sit on the couch with chocolate…

7 Weeks Left - Ready for a Busy Weekend

The Senior

Can you guess what I’m going to write?  S had a productive week working on the usual: College Algebra (another assessment - the end is in sight), daily journal writing, editing, German IV, History, and writing his research paper.  He finished his rough draft!  Woo hoo!! Next week, he will edit and submit.  

We are hoping he did better on his paper this time, so he doesn’t have to do another one. If he is having struggles, he has time to write another one.  As we told him, we feel that strongly about him having the skills to write a research paper that we will keep working on it if need be. (Confession time:  My husband and I snuck a quick peek at his paper.  It needs to be edited, but we are pleased with it.)

S had a chiropractic appointment on Monday.  On Wednesday, he and I attended a Lunch in Time on the Construction of Fort Monroe.  It was quite interesting. The Volunteer Coordinator from the museum recognized him from a training meeting that was held jointly with the Casemate Museum, and she was talking to him about volunteering at their museum also.  

He had Youth Group that night followed by the Lenten service.  During Youth Group, there was discussion about his future and his uncertainty over it.  There was a lot of praying for him that night.  Prayer is good!  

We received S's graduation announcements yesterday! We are very happy with how they turned out. J did a good job. Even S thought they were nice. Maybe we will address them during Spring Break.

He has horseback riding this morning, and it is rainy.  It is a new session, and that means a different instructor and a different time.  He has had this instructor before, and he likes her; however, he has a FAVORITE instructor that he was really hoping to have again.  

S is not volunteering this weekend since we are going out of town for J’s gymnastics meet in northern Virginia.  S is going with us because he has a horse show on Sunday.  On our way home, we will swing by the barn for the horse show.  I need to remember to keep his helmet in the van after his lesson today.  

I found out yesterday that he is slotted for an 11:15 riding time.  We had requested late afternoon knowing that we would be up in northern Virginia.  I asked if they could move him to a later slot.  I guess I will find out at his lesson.  If not, we will be up and on the road early Sunday.  So much for my trip to IKEA before we head back.

The Sophomore

J had a good week at school.  He met with his counselor to register for classes next year.  He will be taking Honors English (He was recommended for AP English but he told his counselor no.), AP Calculus, AP US History, Honors Physics, Personal Finance, Photography II, and Digital Photography/Web Design.  Can you tell he is in an Arts Magnet Program?  The Art classes will help balance some of the other classes.  I’m not sure how much help we will be in Calculus, and I know I won’t be any help with Physics.  

J had a good week at school.  He had a Driver’s Ed project due and completed that. Other than that, his homework load wasn’t too crazy this week.  Thank goodness!

J had a good practice week - 14 hours.  They are taking tonight off because the state meet is tomorrow.  J feels good about it.  He has been working his landings in practice and he has been vaulting quite a bit.  His coach changed up a few things in his routines, and J is comfortable with that.  

On the Homefront

It’s been a normal week - busy!  What else is new?  We are headed up to northern Virginia tonight, and the weather should be nicer than the last time we were up there (6 inches of snow). We are hoping to get to the Udvar-Hazy Center this time.  S hasn’t been there before.  

It is a weekend of activities for the boys. Saturday evening will be gymnastics, and Sunday will find us at S’s horse show.

I guess I should go get packed and get my gymnastics bag ready. It takes a lot to keep the parents entertained at the meets. We are there for HOURS!

What have I written/posted this week?

Cerebral Palsy Awareness:  Dad’s Perspective

Sibling Relationships - Adoption Talk

Visit with DBVI Vocational Rehab (guest post by my husband)

Once I am home from northern Virginia, you will find me on the couch with chocolate in between my loads of laundry.

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