jade in the parke

Saturday, September 6, 2014

Special needs siblings serving their family


Special needs siblings serving their family & how do you measure service hours for college applications when your service is normal in the abnormal world.
http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html


This is the story of today:

My husband is out of town for a much needed R&R fishing trip with friends, 
http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html
 2012 Photo Cred: Doug Parke http://goodimagephotos.com
I needed to teach at the gym early this morning. No problem, right?

Well.... let's just say that at 7:05am, I stop brushing my teeth sensing I should check my 9 year old's blood glucose.  Climbing up the bunk bed ladder with her Vera Bradley's Happy Snails wallet which holds her testing kit in one hand, I wake her and find out she's 71. 

Potential crisis averted after ingesting a handful of Cotton Candy grapes (15 grapes to be exact as most grapes are one gram of carb per grape) as I do the "Wake up" drive by to my groggy 15 year old who has to be up at 9:10 am for her ride to Marching Band practice. 

http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html
Feeling a bit overwhelmed, I wake up my exhausted 17 year old son who had three Varsity Soccer games this his first week of school with multiple assignments due including a college resume (still working on that one). 

He woke up and stumbled out into the hallway to help check on his little sister with his cell phone in hand ready to text me her updated test numbers after 15 minutes have passed.  With only 45 minutes until my class, I grab my gym bag and finish getting ready. A sideways glance in my oldest girl's room catches him lowering the bed rails on her cool remote bed aka a rented hospital bed that she's had since her big surgery
http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html
He has her manual chair ready for her transfer. As I am running back and forth from the car to the house as I forget my water bottle, I get a text with a crazy high number of 314.  What? It went up that high in 15 minutes? I wonder if juice from those super sweet grapes (that have notes of cardamom in case you were wondering if they tasted like cotton candy) are coating her finger tips and altering the reading. I call up to him, "Please ask her to wash her hands and try again" as I walk out the door for the final time. As I reach the end of our street, the phone rings and I hear a "155" and he passes onto me her request to go back to bed. After expressing my appreciation, I remind him to help Abby get her leg braces on and help her stand up from her tiny wheelchair, so she can do her morning routine.

I pull out onto the main road relieved knowing my son stepped into the gap. He may have memories of battles with his mom on the amount of time he gets on the computer from not that long ago ("Why do we watch other people playing video games on youtube? But I digress), but when push came to shove, he knows what's important. A part of me, the worry wart mom that projects 10 years down the road based on habits now, started to melt away. 

I marvel at him becoming an adult this week. Eighteen years ago on September 10 (Five years and one day before the day of infamy 9-11), my nine pound, ten ounce chunky baby was born. 

http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html
J center surrounded by two cutie pie girls

Now, he is looking at colleges and beginning his busy senior year with a thesis, speeches, co-leading his philosophy club, running his own part time lawn mowing business and the uber stressful period of navigating the college application process with deadlines looming on November 1st and continuing until May when final decisions are made.
http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html
Athens, Greece

We have been stuck in a rut with writing his resume, especially in this pesky area which he seems weak in: Service and volunteer hours. He has some, but not near the amount as his peers. We have been on the receiving end countlessly during surgeries and recoveries, having babies, multiple hospitalizations with our special needs kids and my husband's battle by the River Styxx (this is my cryptic way of saying he lost his Achilles' tendon to MRSA last year) by hot meals being brought to our home, grocery shopping errands ran, a lawn mowing by a co-worker, child care, carpool help and even our laundry being picked up and delivered back to our home (that was very humbling and I cringe a little to think I said yes to the prodding from our meals coordinator at church). 

Have we served others in the same way? Have our actions been loud enough to be "caught" by the next generation of Parke's. If someone looked at our volunteer hours, it has been centered on our kids and their activities and increasing in hours and commitment as our kids have grown and we have emerged from the diaper bag trenches. I think that is normal and it is blessed. 

Today there was an opportunity for him to serve a family from his school moving to a new home, usually we jump on that type of service, but we had to decline which filled us both with regret and a bit of guilt. Sometimes being a special needs family means that we have to say no to worthy endeavors to huddle close and to care for those we are called to serve. A mental plan to join in with our church's Habitat for Humanity's building project was stalled before it even began when my nine year old developed Juvenile Diabetes. We are THAT family. We can be embarrassingly needy at times. So, we love it when there is a need where we can serve someone else. 

Yet, when the opportunity arose for him to step up to serve our own little, needy brood, and go against the normal desire to sleep in as every teenager in America would love to be doing after the first week of school, he stood up by God's grace. He woke up without one ounce of grumbling and served quietly not in the college application with documentation kind, nor in the Presidential kind, but he did it with no expectation of thanks and recognition which is the best kind.

I come home and find Abby made it off successfully and cook up a hot breakfast. He is curled up half awake on the couch with his little sisters body slamming & giggling way too loud for the morning hours. While eating our eggs, I hear from the kids nonchalantly that Abby walked into her bedroom, fell hard as she tripped over a hair dryer left accidentally on her floor. Her long leg braces called KAFO's (Knee Ankle Foot Orthoses) have to be in a locked position at the knees to keep her straight so she can shuffle walk. Darn that hypotonia! Her littlest sister put the tripping hazard away and her big brother stepped in and lifted her up back onto her feet. 

The mom guilt thing is real, people. If I had known she needed to be there early to practice, I would have secured a sub for my class. I am so thankful that there was peace and calm in our home in the midst of the crisis and my boy is becoming a godly man who cares for his family. 

There are eternal blessings that can't be documented nor proven.

After he curled back up on the couch in a bagel coma, this momma made the biggest, baddest cafe mocha I could brew. 
http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html

Happiest 18th, son! We are blessed.

Moms with little ones, remember:
The Days are long, but 

http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html

Friday, June 20, 2014

Release

These words have been prompted by lisajobaker.com and her writing prompt of "Release" I sat down to write a few words of letting go of my expectations for my husband's healing after a surgery this week to restore his mobility and another story tumbled out. 
A story of grace, suffering and healing.
Of Ellen Belliveau.
______________


Release. Letting go of my dreams. Letting go of my unbelief. Letting go of my expectations of a pain free life. Letting go that there are guarantees of full healing this side of heaven.

Releasing as the Lord calls us to have an open palm lifted up to heaven with our dreams and desires laid bare as He sifts our plans in His perfect will leaving there some of my longings fulfilled and lovingly placing what we would not ask for nor even want for our enemies. Yet, here the latter sits in my hand, unwanted and we wish we could close our grasp on the good and squeeze out the suffering from our lot in life. The world is groaning and my hands are heavy. "Come to Me all who are heavy laden, burdened and I will give you rest".

This story of release is about a dear woman who came alongside me 18 years ago in the Titus way as an older woman teaching the younger woman. She read (and approved) my parenting books that I clung to as a new mom-to-be, showed me how to care for my first born, dispensed advice to keep the fire burning in my marriage and showed me homeschooling wasn't for the weirdos. I still remember sitting in her backyard under the drape of the fragrant lilac flocked trellis as we sipped iced tea, her little ones milling about and she shared her method of getting her babies to sleep through the night. A conversation cut short as we saw her oldest son, Michael, climbing onto the eaves out from his second floor bedroom window which had her racing from her chair to stop what seemed natural to him. She kept her boys safe.

And when my mother died of breast cancer when I was 26, she swooped up my 15 month old to give me time to grieve and comforted me that I wouldn't suffer the same fate. We nursed our babies. We did everything right. It was what I needed to hear.

She taught me how to keep it simple when offering hospitality, how to iron tissue paper to reuse for gift bags and she taught me how to use a sewing machine and lived in a little wooden house with a beauty in and through her. Ellen was the original hipster interweaving flowers and natural materials found on the side of the road into a stunning arrangment. She nurtured her beautiful daughter to value matters of the heart. She did good.

Ellen wrote notes that would chastise and ask you to fight evil and were filled with poetic words that in her ethereal way drew you closer to the Lord. I have them still. She wrote gospel drenched words in a journal that she presented as our wedding present. This jumbo sized journal covered in a quilt pattern and shlepped to every anniversary dinner for the last 20 years writing down our memories-pleasant and painful. This record grounded us, helped us to marvel at God's goodness to us. The journal was her encouragment to our newlywed selves to keep communication open in our marriage. Write letters to each other, rant, dream as we travel along this road together and we did. Like a quilt weathers and softens through generations of use so my marriage fibers were stressed and pulled and rubbed and made stronger with softer, grace filled hearts.

I wish I could say we were as close these last several years as we were then. I wish we could go back and I could be who I am now and we could be sisters instead of mentor/mentee. But this is our story and it is life and His grace and it is good. 

We want to clamp our bony fingers down on the blessings He gives, yet He calls us to open our hands. This week she passed from the pain of this world and her spirit was released from her cancer riddled body.
Released to Her Father's care. 
Released to worship. 
He did good.
___________________________________


Sunday, June 15, 2014

4 Mini Tributes to our Special Needs Dad on Father's Day


Being a Dad is a fearsome thing, a "shaking in your boots" kind of fearsome: 
Leading a family of little humans, navigating life's storms, weathering weaknesses and failures. 
There are joys, laughter and deep wholehearted goodness to pad the path. 
Kudos to all of the fathers out there (and especially to all of the moms doing it alone) on this Father's Day.
http://www.jadeintheparke.com/2014/06/4-mini-tributes-to-our-special-needs.html
2014

But there is a part of my heart buried deep on the side of Dad to our JADE gang: 
  • A man who climbs the bunk bed ladder every night at his bedtime, reaching over the sleeping nine year old to find a plump, warm finger to prick and squeeze a drop of blood on a strip which will dictate the next few hours of his night-staying up to repeat the climb 20 minutes after rousing a sleepy girl to eat candy or a night off to get some much needed rest.
  • Or to stay up late helping his wheelchair rolling 15 year old daughter transfer from her rolling throne to bed regardless of when her adolescent, circadian rhythm is done with her evening routine. 
  • Or to prepare Bible studies for a bunch of cool teens who congregate three times a month leading them in the study of the Word. Words that are life giving & showing them Jesus. 
  • Or to chicken dance and be goofy, well, just because. 


Many men are fabulous fathers, but those who are present in the lives, albeit imperfectly this side of heaven,  with their special needs families are worthy of all kinds of crazy accolades. 

Thank you for reading mine.

http://www.jadeintheparke.com/2014/06/4-mini-tributes-to-our-special-needs.html
Junior Soiree: The J guys

Special Bonus: Go to our FB page to watch the video of our "Top Ten Reasons Why We Love You" and the Florentine wallet which we picked up on the Grand Tour for him. CLICK HERE. Don't forget to "Like" our page for really intermittent updates.

Tuesday, May 27, 2014

Greece and Italy: Here we come!

DAY ONE: Travel Day

Hello! Yiu Su! Ciao! 

You are invited to join J (of JADE) and myself for an once in a lifetime field trip visiting many of the ancient relics, sites, museums of Ancient Greece & Rome as well as the cities that served as bastion of Renaissance art as a culmination of his entire classical education beginning in third grade. 

Rockbridge Academy has been a blessing to my son as he transitioned from classical homeschooling with our challenging tutorial (Yay to Granite Classical) to a full time school in tenth grade. In the classical education model, there are three stages of learning: Grammar, Dialectic & Rhetoric. 

My son, an eleventh grader, is in the thick of the Rhetoric stage where they work on perfecting the skill of public speaking and writing with the emphasis on expressing their thoughts, ideas, and convictions in an informative and persuasive manner. His school takes all of the eleventh graders on a Grand Tour to fill out their classical learning. We will be on this adventure for 18 days! 

Care to join us? Subscribe to my blog for email updates daily (daily is based on my availability to utilize wifi). I am so excited you can be a part!

Some fun pictures:

We left Sunday, May 25th from Dulles and flew through the night to Frankfort, Germany. Lufthansa served a hot meal and the staff were professional and courteous. And the plane? Lovely. 

I can't sleep, and it is 1 am EST.


We arrived around 2:30 am EST. With only one hour to traipse through long corridors, up then down the escalators, caught a train to queue up for passport controls, security screenings, and to catch our flight to Athens.

Here is our luxury jet at the Frankfort airport:
The coolest feature of this Lufthansa aircraft was the live cam footage of us landing. I will update this post with the video when I am able! Stay tuned! 






Thursday, May 8, 2014

Grateful

Grateful.
Gratefulness is in bed with thankfulness.
They go hand in hand on the boardwalk on a hot summer night licking ice cream and craving boardwalk fries.
Thankfulness flows when my heart is being showed grace in abundance.
Gratefulness is the outpouring of my heart to the One who has bestowed His mercy and grace to me a gossip and a selfish mommy-servant.
Gratefulness flows out of my heart to the ones who have bestowed kindness to me and especially my needy little special family.

In just one hour this week at a 7:30 in the morning this past Wednesday, I saw my diabetic daughter's blood sugar climb higher and higher, then vomiting. The swirling fears of DKA (ketoacidosis) flow through my mind, as I am madly searching my emails and cell phone list for a sub for my kickboxing class that I teach in two hours. Time is ticking and I hear my other daughter with Arthrogryposis downstairs sitting in her wheelchair unable to stand until someone helps her. I can't leave my nine year old as I am fumbling with the shrink wrap on her translucent pink pump inserter trying to redo my botched pump insertion from last night. Emails come in on my iphone from managers asking me to call for a sub, my youngest asks 10 times if she can have a banana and I want to curse, but I say, "Just eat it, I don't have time for this".  I ask this sweet six year old to help her 15 year old sister. Then, I stumble in to the bathroom seeing D getting sick one the floor one foot away from the toilet and I wish I could say I just let her, but I didn't. I moved that poor girl to the right spot. While texting other instructors, I give D her bolus of insulin through the pump and set my clock to check again in 15 minutes. My six year old running to grab the uniform for her big sister and then off to make her a lunch. I text my husband. I am going to get fired. I don't know what to do...He steps out of meeting to drive home.

Blood glucose tested, down 30 points as insulin is finally getting absorbed and she is on the mend. My six year old has opened up our van, deployed the wheelchair ramp and has helped her sister into her power chair. Thirty minutes late to school, a quick conversation with another supervisor extending grace and mercy as the class is cancelled, crisis averted with Type 1 Diabetes and I hear my six year old dragging 8 bags of trash to the curb. Thankful for the Lord's protection and grateful for humbling me before my servant hearted child. I am beyond blessed.


http://www.jadeintheparke.com/2014/05/grateful.html
(Clockwise from top) Me, A, E, D


Thank you for listening in on a moment of time that thankfully is not a usual moment anymore. And, yes, I am grateful that chaos is not a part of our dailies.
I am writing with Five Minute Friday at LisaJoBaker.com with the writing prompt of "Grateful". 
So no editing: Changing the weak metaphors, cleaning up the unflattering view of myself, just 5 minutes  (plus a couple extra to finish the story...shhh).  
Please note that this awesome view greeted me that very morning at my daughter's tutorial on behalf of Senior prank day. 
Pink flamingos in contrast to my morning. Just made me laugh. 

http://www.jadeintheparke.com/2014/05/grateful.html
"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus" 1 Thessalonians 5:16-18

Saturday, March 29, 2014

Science Fair Projects Part 3: Janice Van Cleave Weighs in!

If you are an educator or administrator, please weigh in with your comments! Let's take this wonderful ball that Susan pushed down the hill and keep it rolling! 

BACKSTORY: After seeing this poster peppering my facebook feed, I pinned it, but had no idea how to give the proper attribution to the creator. ==>
http://www.jadeintheparke.com/2014/03/science-fair-projects-educators-weigh.html

After an hour or so of googling, I found the original Huffington Post article and the link within for Susan Messina's facebook page. I am not sure how they found it, but it was a brilliant gem. I wrote my post here, and sent a message to Susan with the link. She and I began an interchange that morphed from an idea for a comment posted, to doing a Q & A to a full blown article that was eventually published. The story will be picked up by a larger blogging platform on the national stage. Stay tuned.

The ideas discussed were how to do science fair projects that give each child an even playing field. One of her educator friends suggested that kids should do projects at home with just the supplies of paper and a pencil.

I have thought a great deal about that: How is a science fair project done at home that is required by our local public elementary school to be TYPED with computer made graphs NOT a measure of the parents' abilities? Our school system is one of the best in the country serving a highly educated population. But the child who has a college educated parent with mad Excel skills will have a project that shines compared to a child whose parents may have to work very long hours, more than one job to make ends meet or be a single parent working and is just surviving. Are science fair projects DONE AT HOME truly a testament to the child's learning or the parents?  Let's discuss this very important educational epoch for our kids! How do we keep the educational value, preserve family time and respect the fact that kids don't come from similar educational backgrounds while teaching the scientific method?


I contacted Janice Van Cleave who has written many books on this topic and whose materials I used in my homeschool to see if she would like to weigh in and follow up on her comments to Susan. I am so honored that she left her comments which I have included below (edited down from the original which included her insights into her particular state, Texas and their educational system).  

Susan, I must admit that I join your campaign to stop the lunacy of what is being called science fair projects. The attention of the entire world focused on your poster expressing how the majority of kids, parents and yes, even teachers feel---Everyone HATES Science Fair Projects.So, Let's Fix it. 1. Any one assigning a mandatory science fair project must go home with students and help them prepare it. 2. I agree with Susan about elementary projects. Science Projects at the elementary level should be done at school.
Know that I am very passionate about science and loved what could be in the past called "Science Fair Projects." My students from middle and high schools did projects some that were entered in district, regional and one entered the International Science Fair. It was fun for the kids, and a chance for kids of all abilities to be proud of their work. NOT ANY MORE---- Susan's poster could be on any billboard--maybe someone will put it there to let our run-a-muck education system know that enough is enough. Just like the requirements of science fair projects, educational demands for testing and collecting data on our children is strangling any spark of excitement left in our teachers. What lunatic demands that kindergarten kids give a hypothesis? But even more absurd is for any teacher to tell kids to think of a topic and then write down a question about that topic they want to solve. It cannot be just any question, it has to have one independent variable and one dependent variable. I forget, to solve this problem the experiment must have measurable results--in metric measurements. YIKES! Most elementary teachers are honest enough to admit they just want kids to take the textbook length instruction booklet home--bring back a poster board with something glued on it and don't asked them any questions. I am retired from writing and publishing books. My time is now spent tutoring local kids as well as kids on line for free.  I will stop now and design a few posters of my own. Fluorescent colored poster board is what I need. 
But for now: Here are some ideas for making changes to science fair projects: scienceprojectideasforkids.comLet's all join together and fix the wrongs in education. Thanks Susan.

Thank you, Janice! Please check out her resources if you are looking for help. 

Her passion, the emotions in Susan's poster, the viral response to it & my personal experiences that spurred this series is hitting on something, people! Please comment with your ideas and experiences.


Monday, March 17, 2014

The Story behind the Fake Science Fair Board

If you saw the "Everyone Hates the Science Fair!" board that was floating around on the blogosphere last month 
http://www.jadeintheparke.com/2014/03/the-story-behind-fake-science-fair-board.html
The Poster that started a revolution.

or you read my take on it HERE
My friends, you are in for a treat as I am pleased to introduce to you the full story written by the author herself. 
How often do you find out the story behind a viral meme? 
Let's engage on this worthy issue, shall we? 

The Story behind the Fake Science Fair Board
By Susan Messina
(s.messina03@gmail.com)

Chances are, if you are the parent of a school-age child and you were on the Internet at all the week of February 17, 2014, you saw the bright yellow fake science board with the provocative question, “How Much Turmoil Does the Science Fair Cause Families?” The finding? Of course, “Everyone HATES the science fair!”

A lot of people, and I mean a whole lot of people, thought this was pretty darn funny. The photo of the board went viral, spinning through the Internet through a variety of social media and landing on Facebook pages and in Twitter feeds and inboxes across the world.  Without a doubt, it struck a nerve. The comments revealed the deep loathing felt by many parents about this educational rite of passage. Millions of people saw, shared, and “liked” it on Facebook and other platforms.

Perhaps you thought it was a real project, done by a real (smart-aleck) child. Perhaps you thought it was done by a parent who is against science education. Maybe you were offended because you or your child loves the science fair. So here’s the truth.

I’m a 50-year-old mother of one who created the board as an inside joke three years ago when my daughter was a fifth grader at a public school and she was completing her fifth science fair project, amidst tears and anger. (The tears were hers, the anger mine.)

It was never submitted for a grade (although a lot of people have told me I got an A!).  It has never even left my house; I certainly didn’t bring it to the actual science fair—tempted though I was—because it would have hurt the feelings of all the kids who had worked hard on their projects. 

I’m definitely not anti-science or anti-intellectual in any way. I graduated from Bryn Mawr College and I hold three master’s degrees. I believe that STEM (science, technology, math and engineering) fields are crucial and that, in fact, more women should enter them. Rock on, young scientists and engineers!

However, given the level of rage I have felt during the completion of my daughter’s science fair projects—and the overwhelmingly positive response my fake board has received, there is something wrong with competitive, elementary school science fairs.  So, here’s what I think.

First, any elementary school project that requires a lot of parental time, energy, resources, support, cajoling, and financial investment is just BAD. Such projects privilege students from higher-income families for all the obvious reasons. They also take away from family time that families at all income levels have less of these days. And they definitely are a challenge for the millions of students who live with parents coping with physical illness, mental illness, and/or substance abuse.

Therefore, I’m a strong believe that elementary school projects should be done in class. Science is so important, in fact, that doesn't it make sense to have trained teachers teaching the scientific method rather than a ragtag bunch of parents? I was thrilled when my daughter started middle school and the sixth grade science teachers had the students complete the entire project in class, including the PowerPoint presentation.

But, what if a school is still really wed to the science fair? How about this:  Re-cast it as an elective, noncompetitive family project. If the science fair were re-imagined so that families could decide to explore some cool thing and then truly do it together, we'd get rid of the sham that the kids are doing the projects by themselves (maybe some do, but it seems pretty rare). We'd add in the factor of being able to do more complicated/interesting projects because parental involvement would be assumed. And, by getting rid of the stupid competition aspect, we wouldn't have kids (or, let's be clear, parents) competing to see who does the coolest project or the spiffiest board. Doesn't this sound like a much better idea—and maybe even fun?

Janice Van Cleave, who is well-known in science education circles, wrote to me on Facebook after seeing my board and said, “Susan, I love your science fair display. Sadly it reveals the truth. You have encouraged me to write new rules for elementary science fair projects.”

If millions of parents, and even someone like Janice Van Cleave, see the truth in my joke, something needs to be done. I’d love to have more of a national dialogue about this. Surely, we can figure out a better way to excite students about STEM fields.

To see my original board: Click here

To see George Takei’s posting of it: Click here
Huffington Post: Click here
imgur: Click Here

Blogs:
·         http://mom.me/in-the-loop/11195-moms-science-project-gets-heart-why-we-all-hate-science-projects


Thank you so much, Susan! I am so privileged to be the conduit for your thoughts. What do you think, readers? Do you agree? Disagree?

Please share this article. Would you consider pinning, tweeting, "liking", emailing and sharing this with others?