It has taken a village...

As my son prepares to graduate from high school, my husband and I have spent a lot of time reflecting on the group of people who have helped us get S to this point.  We have most certainly not gotten him here on our own.  We refer to this group of people as Team S.

How do we go about recognizing all of these people who have helped S and our family get him to this point of graduation and preparing to start college?

We made a list.  This list includes people from Alabama, one person from California (not such good experiences there or as my mom, a retired teacher, says "they weren't very nice to him there"), Virginia, North Carolina, and South Carolina.  (There is a HUGE list of people from Minnesota, but they all received invitations to the party.)

It was quite humbling to see this list of people who have made a difference in our son's life. They have encouraged him, given him the support he needs, and pushed him to be the best he can be.

Our list includes principals, a Special Education director, teachers, assistants, Assistive Technology personnel, Physical Therapists, Speech Therapists, staff at his therapy clinic, horse handlers, volunteers at his riding facility, instructors at his riding facility, pastors, Sunday School teachers, his Pediatrician, his Ophthalmologist, the person who does all of his paperwork for equipment, his equipment rep, his chiropractor, his massage therapist, and friends.  

Some of the people we have stayed in touch with throughout the years.  Others we haven't. We had to do some searching to get addresses.  We sent the announcement with a thank you from S printed on the back.  

We have heard back from so many people.  

One person wrote, "It means so much to me but I want to point out that it's you who has done all of the heavy lifting."

Another person wrote, "THANK YOU with all my heart....please know that I learned so much with you and from you in our time together. You were a milestone in my professional world....I took the lessons we learned together and helped other students with your ideas."

His first grade teacher posted it on facebook, and it was so fun to read the comments from staff members who remember him.  

What we have learned through the years is that as much as people touch our lives and S's life, he touches their lives.

I am writing this post as I sit at the community college's Office of Student Success waiting for my son to finish his college placement tests.  I can't help but appreciate the name of this office whose staff will be such an important part of my son's college life. We are continuing to add to Team S

I will be on the couch with chocolate thanking God for blessing us with all of these amazing people who make up Team S.  

High Blood Pressure Awareness Month

May is High Blood Pressure Awareness Month.  I had no idea there was such a thing until I Googled it.  Why is this important to me?  

I have a child who has high blood pressure.  My child isn't overweight.  My child doesn't have a horrible diet.  My child isn't a video game junkie who doesn't exercise.  My child who has pediatric hypertension is an athlete.  It is J, a gymnast who practices 17.5 hours/week.

Imagine our surprise two years ago when J was at the pediatrician for a physical for gymnastics camp, and the nurse told me his blood pressure was high.  It's never high.  She said she would retake it at the end of the appointment.  It was still high.  

We thought it could be attributed to a decongestant he was taking for his allergies.  We were told to stop that medicine, monitor his blood pressure, and bring him back in 2 weeks.  It was still high.

In the meantime, we had Googled pediatric hypertension.  It says that children should watch their diet (not an issue), lose weight (not an issue), exercise more (not an issue). It could be caused by kidney problems, or it could be genetic.  Since J is adopted, we have limited medical information for him.  Given the fact that J is quite healthy and active, the doctor ran some additional tests which came back okay.  That led them to believe that the hypertension was the primary condition.  

J was referred to a pediatric nephrologist who follows him.  He has had to wear a blood pressure monitor for 24 hours on more than one occasion, and he dislikes that a great deal.  That is enough for him to monitor his blood pressure at home.  The blood pressure cuff and monitor sit out like they are decorations in our living room.  

The doctor determined that J's blood pressure is high, so he does take medication for it.  He is on a low dosage, and it is helping him.  

You will find me on the couch with chocolate next to the blood pressure monitor thankful for a wonderful pediatrician who was concerned enough about my son to follow up so this condition could be diagnosed and treated.

It's been one of those weeks!

The Senior

S has been on break this week.  You would think he would be sleeping in since he loves to do that during school weeks.  Nope!  He has been up earlier this week than he is during school weeks.  When asked why, he replied, “I have things I need to do.”  

He is using his time during break to try to finish some things up.  He is REALLY close to finishing up his College Algebra course, so he took an assessment.  Close but not quite.  He is working on a history project and doing some German.

It has been a productive week regarding some of his “life” things he needs to finish.  His FAFSA is complete (only because we finished our taxes).  He spoke to the historian where he volunteers and asked if he could job shadow him.  That was initiative!  The historian is a wonderful man who told him yes.  He also offered to go over his research paper with him and give pointers!  He still has a list of items on the whiteboard, but it is getting shorter and shorter.

S attended a Seder Meal at church last night with my husband.  He enjoyed that.  He has horseback riding this morning.  After that, we will go to church for a noontime Good Friday service. Tomorrow he will help fill Easter eggs with candy for our church’s Easter egg hunt on Sunday. After that, he is volunteering for 4 hours.

The Sophomore

J had a busy school week since the quarter is ending.  He had two projects that were due this week, so that was how he spent his Saturday.  He worked diligently and never complained about that.  He complained about having to read 4 chapters from a novel for English.  Really?

This week at school he had an AP History test, an AP History quarterly exam, a Chemistry test, a Math test, an English test, an English quarterly exam, and a Spanish presentation.  He will be on Spring Break next week, so that is the light at the end of his tunnel.

J had an Orthodontist appointment scheduled for this week.  Fortunately, I had the date wrong since the date we thought was scheduled didn’t work because of his test schedule.  When I called to change it, I found out the correct date which didn't interfere with his testing schedule. He would have missed his appointment if I hadn't called.  We don’t miss appointments.  

He was hoping the Orthodontist would tell him his braces are coming off sometime soon.  He has had them on for 32 months.  The end is not as close as we had hoped after his last visit.  It is getting there, but this has been a very SLOW process for J.  He has been a trooper.  We looked at his initial x-rays.  Wow!  

J has been busy at practice, 17.5 hours this week.  He has a meet next week, so they are working on adding some new skills and cleaning things up in his routines.

On the Homefront

It's been one of those weeks!  The calendar is a little crazy with the color codes for everyone overlapping throughout the week.  Activities and appointments on the calendar have included: Orthodontist, Pest Control, picking up medication for S at the pharmacy, picking up medication for me at the pharmacy, picking up medication for the dog, eye appointment, back to the eye doctor to pick up J's new contacts, church council meeting, Seder meal at church, horseback riding, J's 5 nights of practice.  In between all of this, we found out I needed new brakes on my van.  We were able to get that done which was nice since we are traveling to Pennsylvania next week for J's meet.  Safety first! As long as we were swapping vehicles out at the mechanic's shop, why not take the truck in for an oil change?

We are getting together with friends tomorrow evening for an early Easter meal.  J is making the cake with an ice cream filling.  We shall see how that turns out.

On Easter Sunday, our family will attend the sunrise Easter service which is held at 6:30 am. We will head home for egg bake because that is tradition (S is adamant about that!).  Then, we will go to Busch Gardens for some fun followed by a nap when we get back home.

Here are a couple of Easter pictures from our time in Alabama.  J was in preschool, and S was in Kindergarten. As I was looking through Easter pictures, I realized that S has spent two Easters in double casts.

Happy Easter from me, the one on the couch with chocolate (possibly taken from Easter baskets).

What did I write this week?

We Chose This Life

I have things I need to do.

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The "Great Big Book of S".

As a parent of a child who has special needs, I feel like I need to be prepared for whatever life throws at us.  I, along with my husband and other parents of children who have special needs, are asked to do many things for our children.  We are asked to be advocates for our children in the educational arena.  We are asked to convey medical information between specialists.  We are asked to schedule numerous appointments with therapists and coordinate insurance referrals.  We are forever filling out paperwork for some office or agency and dropping it off at the clinic so our doctor can sign it.

As a former Special Education teacher, I knew the importance of keeping all of S's documents. In meetings, I would tell parents that they needed to keep all of the papers together .  What I didn't know was the volume of paperwork that these parents were handling.  Also, it's not always clear divisions of paperwork.  Sometimes medical crosses into educational and vice versa.  

What has helped us stay sane throughout all of this?  We have what we call "The Great Big Book of S".  Through the years, we have compiled 3, 3-inch, 3-ring binders filled with S's information. 

We learned the organization techniques for S's book through Pam and Pete Wright's book, From Emotions to Advocacy, http://www.wrightslaw.com/nltr/12/ss.organize.file.htm, and additional helpful reading from http://www.wrightslaw.com/. We have adapted these techniques as we have needed for our situation.

*What goes into the "Great Big Book of S"?

1.  Anything pertaining to S and his care

2.  We have a list of all of his providers with phone numbers, fax numbers, addresses, and email addresses.  My husband has a copy of this document at work in case he needs to make phone calls.

3.  We have a plastic protector to hold any business cards we receive from providers.

4.  Medical reports

5.  Documents from school (IEPs, report cards, notes from the teacher, etc.)

6.  Any testing reports (school or elsewhere)

7.  Copies of any correspondence from us to others about S

8.  Insurance referrals

9.  Copies of prescriptions

*How is the "Great Big Book of S" organized?

1.  Organize everything chronologically.

2.  Create a "table of contents" for your book.  

3.  We printed calendars and put in the binder also to record appointments and meetings.  That was very helpful for us.  

4.  We used sticky flags to mark new months, so we could find things easier..

*How is the "Great Big Book of S" beneficial?

1.  There is a definite attitude shift on the part of professionals when they see us whip out the book(s).  We have traveled with some large bags to get these books to appointments.

Example of the benefit:  

Shortly after moving to Virginia, I attended a triennial review for S by myself since my husband was gone.  I came in with my bag full of binders, notebook, and pen.  Since we had just moved, I was talking to the team members from the school discussing S's transition.  An administrator from the district office came in, looked around, visited with everyone, and said that the meeting could start as soon as the parents arrived.  Imagine her surprise when she found out mom was there already..

2.  It saves our sanity to know that we have S's documents all together, and we don't have to dig for them.
Example:

A couple of months ago, we received a statement from the insurance company that they had paid a medical bill for S...to a gastroenterologist.  The problem is he has never seen a gastroenterologist. The date of service was the day he saw the ophthalmologist.  This was a call to the insurance company which was made much easier because we had the insurance referral, the medical bill, proof of our co-pay, and now this statement all together in one spot.  

3.  We are going to be able to hand him the books as he becomes an adult, so he has necessary information together.   Since he is now 18, I have started to weed out some of the documents. He probably doesn't need Explanation of Benefits from bills that were paid 12 years ago.  

Thank you Pam and Pete Wright for teaching us how to organize our book!  Their book, From Emotions to Advocacy, lays it out quite well.  It is a lot of work initially, but it is such a timesaver and lifesaver!  

Because their system made my life easier since S's paperwork was so well organized, I have free time to be on the couch with chocolate.

The Beginning of the End: Senior Year

The Senior

This is it.  We have started the second semester of S's senior year.  Woo hoo!  There is a lot to be done in the next few months.  He needs to work hard!

Prior to break, S needed to finish writing his research paper.  He didn't.  He had to work on it in Minnesota.  While we were in Minnesota, my husband and I had the opportunity to make some observations about the challenges S has with his writing.  Hopefully, we can help him continue to work through these things.

This week S was back at it.  He worked really hard this week.  He worked on College Algebra, Human Eye Lesson 4, History, German IV, daily journal writing, essay writing, editing practice, and going through his research paper.  [At this very moment, S is finding numerous things to do instead of editing his essay he wrote this week which is all he has left to do for schoolwork this week. ]

S had time to sit and play his computer game multiple times this week or as he told me,  "I'm not playing.  I'm learning tactics."  

He attended Youth Group Wednesday night, and he has horseback riding today.  He was thankful that he didn't ride on Thursday when we had a wind chill advisory here.  

Prior to our trip, we talked to S about things he needs to be doing when we get back - applying to college, applying for HandiRide, filling out the FAFSA form, etc.  We told him we will help him, but we are not going to keep reminding him about these things.  So, the other day S looked up the application process for the community college.  He knows he needs to apply and take the placement tests for the school.  When it is time to take the placement tests, he will need to coordinate with the Disabled Student Services Office to make sure he has the correct accommodations in place.  

We found out today that S's Vitamin D level is still low. He needs to continue with his supplements, and they will check it again in a few months.

It has been a productive week for him.  It will be nice if he can keep the personal motivation going (a mom can dream, can't she?).

The Sophomore

During break J had some assignments that he could work on if he chose to do so, but there wasn't anything that was due when he returned on Monday.  He did work a little bit on some of the work.  

This week he had a Spanish project due and AP History questions and writings to do.  Next week, he has a History project to turn in.  They are starting to do some review for midterms and SOLs.  Hard to believe first semester is almost over for him.

He had an Orthodontist appointment Tuesday morning.  He was finally told that there is an end in sight.  We still don't know how much longer he needs to keep his braces on, but this is the first time we have been told that.  He goes back next month to have another bracket put on.  

He is currently at 30 months with his braces.  He is looking forward to having them removed. We are thankful that we paid a flat fee for his braces and treatment rather than having to pay/visit since this has become a long process.

J had practice for 16 hours this week.  They had an earlier, shorter practice on Wednesday which threw our schedule off.  He has a meet this weekend and competes on Saturday afternoon/evening.

On the Homefront

We are not in vacation mode any more.  We have all of our Christmas decorations packed up and put away.  We have groceries in the house.  

My husband has been sick, so he was home on Monday.  He probably should have stayed home on Tuesday also, but he made it through the day.  He missed PT on Monday but had appointments on Wednesday and today.  They are pleased with his progress.

We will be busy this weekend attending J’s gymnastics meet, but Sunday should be a relaxed day after church and Sunday School.  Our adult class started a new session on Marriage.  It was pretty interesting.

My husband and I are going to be working with S on improving his executive function skills. That will have to be a separate blog post one day.  It is a struggle for him.  We are reading the book, Smart but Scattered Teens:  The “Executive Skills” Program for Helping Teens Reach Their Potential.  We made it through Part I before Christmas, “What Makes Your Teen Smart but Scattered”.  That was interesting, so we are looking forward to working our way through the book to see if it helps.  I will keep you posted as we journey through this book.

I also just bought the book, Brielle and Me.  I look forward to reading this.  Maybe I will have time to do that while I am on the couch with chocolate.

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Sick, Parents Visiting, and Headed to the Beach

The Senior

S worked REALLY hard on Monday to try to finish his work for the week.  He didn’t want to have to do anything after that day.  He came close to completing his work but not quite.  It did allow him to sleep in a little bit on Tuesday though.  His focus right now is College Algebra, World War II unit, and his Human Eye course.  That will be enough since we have company for the next 2 weeks.

S was not happy with us Wednesday morning because he had an 8:40 doctor’s appointment. He doesn’t like “early” appointments, and his brother had the opportunity to sleep in since he didn’t have school that day.  S met his new PCM, and it went well.

Volunteering

S volunteered 6 hours last weekend.  He will not be volunteering this weekend because we are going out of town.

The Sophomore

J only had 2 days of school this week.  He was pretty excited about that.  He turned in his Science Fair project which made him very happy.  He has a little bit of homework to complete during Thanksgiving break, and I believe it is all done.  He is in relax mode!

Practice

J only had 3 days of practice this week due to the holiday.  He practiced for 10.5 hours.  He has a meet coming up next weekend hosted by his gym.  It will be a busy time in the gym.

On the Homefront  

Last Saturday my husband and I previewed S's senior pictures and ordered them. The photographer did an amazing job. His pictures turned out great, and it was difficult deciding which ones to order. We had a list and a budget. Thank goodness because it would have been very easy to go a little crazy ordering pictures.

It has been a weird week at our house.  I became sick Sunday afternoon and spent most of Monday in bed.  It was not a convenient time to get sick.  There was cleaning to be finished because my parents were flying in Monday night for a 2 week visit.  My husband who is awesome took the afternoon off from work to come home and clean.

My parents arrived Monday night.  I didn’t go pick them up.  I was parked on the couch asleep. I am now starting to feel better, but I am tired.  Lots of naps this week.

My mom wasn’t feeling well Wednesday morning, so she has been taking quite a few naps also. No one else has gotten sick which we are thankful for.

We had a very relaxed Thanksgiving.  We celebrated last Saturday with friends, and my parents celebrated Sunday with family prior to their trip.  Here we had brunch, Gluhwein, games, and a roast beef dinner followed by some desserts.  

We are headed to the Outer Banks this morning for a relaxing weekend.  Looking forward to getting away.  My parents have never been there.  We are thankful for friends who have a house we can use while we are there.

I hope everyone had a great Thanksgiving! I will be enjoying time at the beach on the couch with chocolate.

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S had an appointment with his new Primary Care Manager.

We just returned home from S’s appointment with his new Primary Care Manager (PCM) at the Family Practice Clinic.  This was a big deal because S had no desire to leave Pediatrics, but he is aging out of Peds next week.  His pediatrician had a plan to move him upstairs.  Things didn’t go according to plan, but it all worked out in the end.  (My husband is awesome at making phone calls and emailing people).

S met his new doctor’s nurse first.  She was quite funny and joked around about S having to leave Peds.  He laughed.  Then the doctor came in and joked around about having to leave Peds.  First impressions were good.  [My husband and I are both seen in this clinic, but we have different providers.]

The doctor was very thorough.  He asked S a lot of questions about his medications and why he takes them.  He asked which specialists he sees and why.  S had prepared for this prior to the appointment.  He made a list of his medications.  He had a list of provider’s names and locations. He put these lists on his phone.  He left his phone at home.  

We discussed protocol for refilling prescriptions, how often the doctor wants to see him, the best way to contact him, etc.  The doctor did a good job of talking to S and not us.  The doctor put in a prescription for him to be picked up today and lab work that needed to be done to check his Vitamin D levels and Thyroid.

We went to the pharmacy where we waited 30 minutes for S’s number to be called only to find out there was nothing in the system yet.  This is not uncommon for him.  We don’t know why. He is convinced that there is a virus in the hospital’s computer system that does this to him. The pharmacy tried calling back to the doctor and no one answered the phone.  At that point, we just went to the lab.  It was a prescription that isn’t critical to be filled right now.

We went to the lab next.  That was fast.  He checked in, waited a couple of minutes, and they called his number.  When asked which arm he preferred to have his blood drawn from, his response was, “Neither.”   

Overall, it was a good morning at the hospital.  S liked the nurse.  He liked the doctor.  His comment when we left was, “Everyone was very polite and helpful.”  He was right.  I had soldiers offer to load his wheelchair for me.  A soldier came and closed the van door after S got in the van.  People offered to switch seats with us in waiting rooms to make things easier for S to get around.  

After a good morning like this, I need to sit on the couch with chocolate and enjoy it!

And it is getting busier....

The Senior  
S has been working hard again this week.  He has worked on College Algebra, The Human Eye Lesson 3, World War II unit, Grammar, German IV, and his research paper. He’s almost finished with his notes for his paper!  My husband had Tuesday off for Veteran’s Day, so he supervised note taking that day.  It was a productive day.  

S heard back from his supervising teacher at the School for the Blind for his Human Eye course. He received an A on Lesson 2. He was happy about that since he got a B on Lesson 1 after she had asked him to fix some things. He didn’t really like that.  I told him to be thankful that she gave him the opportunity to make the corrections.

S had horseback riding this morning, and it was cold!  Next week is his last week of this session.  He will have his regular lesson in the morning and a makeup lesson in the afternoon. He will be tired next Friday night. We found out he has a noon slot on Fridays for the next session. That means we can leave our house at 11:00 rather than 7:30. Woo hoo!

S has become more slack about getting up in the mornings this week.  He had done pretty well with getting up, getting ready, and taking some time to chill out before he started work at 9:00. That seemed to help him focus more on his work.  This week he has decided that he will sleep in. No reason.  Just didn’t feel like getting up when he was supposed to.  We have been trying to get him to understand that you can’t be on a schedule like that when you have college classes to attend.  The professors don’t want to hear that you were tired, so you just thought you would sleep in instead of attending class.

S will be staying with friends this weekend.  We are going out of town for J’s gymnastics meet. S has no desire to attend those any more.  It’s not enjoyable for him to sit there for HOURS, so I can’t blame him.   Often, the venues are difficult for him to get around, and he can’t see well. As soon as the meet schedule comes out, he coordinates for weekend stays with our friends. He’s taking initiative!

Volunteering
S volunteered 6 hours last Saturday.  My husband and I finally met the museum historian.  S often talks about him and the conversations they have.  We are hoping he will have some opportunities to job shadow him in the spring.  

Our church is hosting the homeless this week at our church.  We coordinate with other churches in the area for this ministry.  Our church provides the workers and the meal for the first night.  We have a site rep at church the other nights.  S loves volunteering for this.  He is very comfortable sitting and talking to the guests at our church.  They love talking to him too. He definitely has a servant’s heart.   My husband will be the site rep one night next week, so S will be going back.

The Sophomore
J has had a busy week at school.  He has had quite a bit of homework for AP History; however, he does a good job of working ahead.  He started his Science Fair project presentation.  He will be glad when that is finished.  He had a half day of school on Tuesday, but he had to go to the dentist that afternoon.  He was moved out of the pediatric dentistry side to the adult side, so this was his first appointment on the adult side.  

J is happy because one of his favorite winter beverages is back in stock at Trader Joe's. Every time I'm at the store, I buy 3-4 boxes of this.

Practice 
J had practice for 17.5 hours this week.   His first meet is Saturday afternoon/evening. He’s looking forward to it.  It’s always nice to get the first meet done.  It helps set a gauge for scores since he’s at a new level with new skills.

On the Homefront

Sunday at church I had this conversation with the photographer (C) who did S's Senior Portraits:

C: Can I talk to you?
Me: What's up?
C: I talked to S in the Fellowship Hall. He asked if I could please post some sneak peek photos because his mom is getting quite antsy, and we don't want her antsy.
Me: I know you are busy, so there's no rush. We are looking forward to seeing them when you get to them. I know you are busy.

After church, I asked S about his conversation with C. His response, "I didn't use the word antsy. I told her you were impatient." Well, that's even better....She did post a couple of sneak peeks, and they are really good. I'm anxious to see the rest - not antsy or impatient but anxious.

I baked cookies on Sunday afternoon for the meals for the homeless at church. This is what 16 dozen cookies looks like. We had to eat the cookies that fell apart.

My husband is finally out of his sling!  He’s very happy about that.  The doctor was pleased with his progress, and his PT is going well still.  He has been very good about doing his exercises at home.

We have scheduled an appointment for S to meet with his new PCM up in the Family Practice clinic.  That will be in a couple of weeks.  Looking forward to meeting him.

My husband had to go to the DC area for work this week.  He went up Wednesday night and came home late Thursday night.  

We are heading back up to the DC area tonight after J is done with practice.  We were going to go up on Saturday for the meet and stay with old Army friends Saturday evening; however, we found out that our niece is going to be in the DC area for a conference and flies in today.  We are going up tonight, so we can spend time with her before the meet on Saturday.  Her conference starts Saturday afternoon, so she can’t attend the meet.  There’s a possibility that we will get to spend some time with her Sunday morning before we head home.  What a bonus for this weekend!  We are not staying with our friends now.  Fortunately, they are very understanding friends.  They are all about family.  Needless to say, my sister-in-law is a little jealous.  Even though we get to see our niece, S decided to still stay with friends.  We will all be together for Christmas next month.

This is the craziest time of year at our house.  That’s why I said last week it was the calm before the storm.  Fortunately, we know it is crazy.  We block out family time on the calendar to make sure we can all decompress.

I do make sure I have a few minutes to sit on the couch with chocolate.  Enjoy your week!

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