Thursday, December 5, 2013
I did my due diligence, believe me. Spinal surgery isn't something you jump into just because one or two specialists tell you to. The first neurosurgeon I met with impressed me. Kind, patient, thorough and smart he instilled confidence as he explained my options. Despite having done my homework on the two surgical approaches, I learned quite a bit from him. He did a series of neuro tests and we discovered that my walking had been altered, a fact I hadn't noticed. It's strange how we compensate without realizing it. He asked me to do the field sobriety test that police use, walking heel to toe in a straight line. I flunked as I could not take one step without falling over. I admit, it jarred me.
The pain in my neck, shoulders, and left arm had continued to increase daily and my right arm and hand is now symptomatic. Although I hated to do it, I had finally accepted that I could no longer work and went on medical leave. Though I had tried a long list of medications, I had declined pain killers any stronger than Ibuprofen, wine, and muscle relaxers. Something about failing the walking test and the potential permanence of my condition led me to accept the neurosurgeon's suggestion that I try a nerve pain killer as well as a narcotic pain medication. The good doctor ordered additional tests including a C-spine CT and X-rays. In the meantime I continued to seek additional opinions.
Research kept pointing me towards Jefferson University. Still, I met with another neurosurgeon that my neurologist had recommended. He was very pleasant but was ruled out almost immediately as his medical group was not authorized to perform the type of surgery I was hoping for. In most cases like mine, the bulging disc is removed and replaced with a bone graft either taken from the patient's own body, typically the hip, or from a cadaver donor. The vertebrae above and below are fused with a plate and screws. This limits mobility of the neck. Also, just as with my congenital partial fusion of C5/C6, the added stress on the bones above and below the fusion will begin to degenerate. Additional surgeries are likely. The other option and the one I prefer is an artificial disc replacement. Just as with the fusion surgery, the bulging disc is removed. Then a metal plate is secured to the bones above and below with a plastic ball in the middle creating a ball bearing. Mobility is much greater and the stress on the bones above and below is not a concern.
This doctor agreed that artificial disc replacement was a good alternative and he began to think out loud of colleagues he could refer me to. The first place he mentioned was Jeff (Jefferson). I told him I was aware of Dr. Heller at Jefferson and his response sealed the deal. "I couldn't be in better hands," he said. He couldn't be happier that I would be with Josh, his good friend. Dr. Joshua Heller was the first opinion I had sought. Happy with the ringing endorsement, I was relieved to have made my decision. Next was the CT and X-rays.
I've taken my meds as instructed, though they don't really make a dent in the pain. The zapping electric shock in my hands has been unrelenting. I constantly drop things due to weakness. Simple tasks like washing my hands or buttoning buttons are difficult and increase the sensation. The meds have, however delivered their promise of weight gain as a side effect. I feel like a hose has been plugged into my belly button as I've blown up at an alarming rate. My face is as round as a cherry tomato. My eating hasn't changed and I actually crave salad, but I am not able to move around much. I've also developed twitches that occur while awake or asleep. I get woken often by them and also by my jaw opening and slamming shut, sometimes catching my tongue to the point of biting into it. This is likely caused by the spinal cord damage, almost like I'm getting erroneous signals from a fried wire. So, I've done what anyone would do in my position. I've watched all of the episodes of The Good Wife (prior to this season) and I'm on the last season of Breaking Bad on Netflix.
Mark is my Prince Charming. He's everything to everyone in our little family, mostly without complaint though he has episodes of what he calls "Rage Cleaning." I am grateful that he is on sabbatical this semester and able to take over for our family. He not only shops, cooks, cleans, and chauffeurs the family, but he also spent most of Thanksgiving decorating for Christmas. The outside of the house can be seen for miles and it is fabulous.
At my second appointment with my neurosurgeon, he ordered more X-rays as he needed additional views with my neck in different positions to gauge stability, so I headed back to radiology. While waiting for him to decide if I would qualify for disc replacement versus fusion, I watched a few videos of the surgery on youtube. Mark can't stand the site of a needle, so he thinks I've completely lost it. I used to be squeamish, but having three kids and being a fan of horror films and zombie shows has desensitized me. At one point I caught myself thinking of tandoori BBQ chicken while watching a disc being removed and it was my own thought that grossed me out.
My mentor, friend, and boss Diane picked me up at 7:15 am and took me to my pre-op appointment on Tuesday so that Mark could get the kids off to school. At noon my friend Lauren brought me lunch and stayed with me through the many questions, poking, and proding. These are the kind of Wonder Women that I draw to me. I spent all day getting my blood pressure checked (3 times), giving my health history, list of allergies and medications, an EKG, a blood draw, and conversation with an anesthesiologist. I even had a chest X-ray and I swear in the dark I emit a soft glow.
Mark's mom will be here for two weeks, thank the lord, though getting here has been it's own challenge due to fog. Yesterday she had flight delays and cancellations, arriving in Chicago last night only to have her last leg cancelled. She's in the air as I type. She too is Wonder Woman.
My health insurance approved the surgery with a modest co-pay and the good doctor approved the artificial replacement. There is a chance that once he gets a closer look, he may decide fusion is necessary, but he is prepared for it. I have been carrying the CDs of the MRI, CT, X-rays and reports in my purse along with my health care declaration and living will for weeks, just in case. My bag is packed with a change of clothes and toiletries. I haven't eaten since midnight when I wolfed down a salad and a Little Debbie Christmas tree cake (don't judge) and I stopped drinking at 8:30 this morning. I'm ready to go.
Recently we have been given hope that I will, in time regain what I have lost. There is no guarantee but the dismal prognosis I had been originally given isn't a guarantee either. It makes sense I suppose to prepare patients for the possibility of permanent damage but I don't accept that. My surgery is at 12:30pm Eastern time today, Thursday, December 5th. It is expected to take 3-4 hours and I will stay for one or 2 nights. Mark will be joined at Jeff by one of our pastors and his mom and will provide updates through my ReJenerationS twitter account and on fb. In addition to prayers and good thoughts, I have another request. I'd like to keep Mark busy and laughing all day. Either on this post in comments or on fb, please post jokes, funny stories, and videos. I want him bombarded and distracted while I'm getting fixed up.
I'm not particularly scared. I just want this over. I've got friends and family all over the globe lifting me up. I'm in great hands at Jeff. I've got the good Lord on my side and plenty of work left to do on this earth. So, me and my brand new Wonder Woman uniform (pajama pants, t-shirt and robe) are headed out the door. After all nothing else would do.
Wednesday, December 4, 2013
As a tot my heroine was Wonder Woman. Beautiful, strong, justice fighter and feminist icon, I didn't just look up to her. I wanted to BE her. According to family lore, my parents took me to Penney's to buy my very own Wonder Woman costume. This was in the late 1970s and I was about 3. They had other costumes in stock but not Wonder Woman. No other costume would do so I stood my ground and we left empty handed. My Aunt Sandy was living in Florida at the time and she went on a search and found it. Back then we had to wait for Saturday morning to watch cartoons. The way my mom tells it, I woke up early in anticipation of the show and put on my costume believing that it would give me the same powers as the Amazonian Princess. When my powers failed to materialize I had a complete meltdown, barging in on my still sleeping parents. In my first identity crisis I screamed in disbelief that it wasn't working and where was my invisible jet?!
I consider myself to be young, even at 37, with more of my life ahead of me than behind. My purpose here on this planet is to be a justice fighter and I accept that role with joy. When I take a step back and look at my life I am amazed at what I've survived and what I have accomplished either in spite of or as a result of some pretty heavy experiences. Whether it be my work in high school and college in child abuse prevention, my years of community service through AmeriCorps*VISTA, my 20s in domestic violence intervention, or my 30s as an advocate for the disability community, I am honored to serve the underserved and blessed to have found work that shares my focus.
My pain, numbness, and increasing weakness were no longer just annoyances. It was stopping me in my tracks, preventing me from my work. Weeks of conservative care didn't help so I saw a neurologist who ordered an MRI of my C-spine. Our assumption was that I had a bulging disk in my neck that was pinching a nerve. I was given a CD of the MRI images and it was clear that my disc between C4/C5 was herniated. The radiologist posted the written report on-line which I accessed through my health care website on a Sunday morning. I spent the better part of the day combing through the one page report. Going only to well respected medical sites I meticulously deciphered each finding and reported them one by one to Mark. He was dubious about my layman interpretations and reminded me that we would be meeting with the neurologist in a few days. "Leave it alone," he insisted.
By late Sunday afternoon I felt confident in my understanding of mild endplate irregularity, discogenic marrow signal change, mild to moderate loss of height and signal, marked hyperplasia, uncinate hypertrophy causing moderate to severe neuroforaminal stenosis and paracentral disc protrusion that focally deforms the ventral theca. As a Momologist I do not need to have a degree in neurology to read and grasp medical terminology. We Momologists hone skills out of necessity to help our children with special needs.
The third impression in the report is the one that made my blood run cold. Posterior disc bulge at C4/C5 that compresses the spinal cord, eccentric to the left. The central cord shows associated focal T2 hyper intensity at this level consistent with myelomalacia from chronic impression. The report lists 5 impressions. Why the radiologist stuck this one smack dab in the middle baffles me. Irrational, I raged at the injustice of the order of findings that in my mind should have been ranked in some kind of order that made sense, such as; least important to most pressing or the reverse.
Myelomalacia. I searched and searched for more information, desperate enough to peek at Wiki. Mark categorically dismissed my discoveries, even taking away my computer and insisting that we wait to hear from the neurologist, but I knew what I read. I spent the rest of the Sunday and Monday in a very dark place. Then, in the middle of the night I woke up for no reason feeling a peace I did not understand and I knew everything would be alright.
We saw my neurologist who confirmed in the first 30 seconds with him what I had already come to accept. I have a bulging disc that has been protruding into my spinal cord for some time causing damage that is likely permanent. Without surgery it would progress but it would not improve my condition. Mark went pale and got very quiet. I knew he was entering the dark place that I had been just a few days prior. My doctor did a EMG and found that my nerves are fine, giving further support to laying blame for my symptoms firmly at the feet of the spinal cord damage. We left with an appointment to see a neurosurgeon.
In some ways I had come to believe I was a mild version of Wonder Woman or that I at least emulated her in some ways, but my body had failed me and my super powers weren't working.
continued in part 3, HERE
Tuesday, November 26, 2013
Regenerating over and over is how we experience life’s lessons. My greatest challenges, even the most painful have resulted in growth that could not have come any other way. It occurs in cycles, sometimes overlapping, never within our control. Some are more serious and have more impact than others. I’ve come to believe that this is the whole point to life. That we experience the full range of joy and sorrow in order to learn and evolve. We are charged with coming through these challenges better equipped to bring joy to existence.
My current challenge began while I was still being knit together in my mother’s womb. Before I was born two bones in my neck that were supposed to separate failed to do so resulting in a partial fusion of the bones C5/C6. For my whole life I’ve had a slightly less mobile neck as a result. I didn’t know any differently. The trouble with unseparated vertebrae is that this causes arthritis or degeneration in the bones and discs above and below the fusion due to the added stress placed upon them. This degeneration was a process set in motion from my beginning.
As we age the majority of humans, if given an MRI, will eventually show wear and tear of our spines. That is because we carry our 10 pound heads around on little bones designed to be strong, yet flexible. Spines are a fantastic design, but they often experience injury regardless of how careful we are.
In 1997 I was a passenger in a car that was rear ended by a drunk driver on an interstate. My neck suffered trauma but no broken bones. Conservative care for many months by a talented chiropractor brought relief. Through the years I have reinjured the area by seemingly harmless activities like housework or exercise. Chiropractic care has always come through for me.
During the month of August, Mark and I took turns taking Sophie to a feeding program at the children’s hospital every day, Monday through Friday. On my days we would take the train. I would help her on and off and lug her heavy back pack on my shoulders all day. In early September my symptoms set in.
At first I noticed a tingling sensation in my left pointer finger and thumb, like it feels when your hands or feet “fall asleep” by sitting the wrong way. Then my neck and shoulders began to hurt in the old familiar way so I did what I knew and went back to my chiropractor. I’m a busy person so despite the pain, I went sporadically in September. One day, I arrived in a ball of snot and tears from the pain, the numbness that had increased, and pain in my arms which was new.
My doc had a Come to Jesus talk with me (ironic, given that he’s Jewish). With a soft, kind voice but a firmness I had not heard in the three years of being his patient, he spoke about walking the line between offering his patients freedom to dictate their frequency of treatment and insisting on consistency that gets results. “Jen, we’ve talked about this. You don’t just have pain this time. You have numbness and an electric shock feeling in your hands. This is NERVE DAMAGE. If you don’t address this now, it could get worse and it could be permanent. You’re busy. I understand that. You need to decide what is important to you and I strongly suggest that you put your needs at the top of the list.”
It’s what I needed to hear and I took it to heart.
continued in part 2, HERE
Saturday, October 19, 2013
Team Sophie rocked our 7th year of participating in the Buddy Walk for Down syndrome awareness. To be honest, I wasn’t sure we would be doing it this year for a variety of reasons.
I formed a new Daisy Girl Scout troop for Sophie’s 1st grade and Kindergarten peers. Our troop decided to support Team Sophie and Team Nate. Maddy is in 1st grade and her handsome little brother Nate happens to have DS. Somehow we ended up in the local paper.
By Linda Stein
On Sunday about 4,000 people will gather to take part in the 12th annual Buddy Walk and Family Fun Day which benefits the Children’s Hospital of Philadelphia Trisomy 21 Program.
Trisomy 21 refers to the presence of three copies of the number 21 chromosome, rather than the usual pair. It causes Down syndrome, one of the most common genetic disorders affecting some 350,000 Americans, according to the Down Syndrome Society. This year, 16 Girl Scouts, who are part of Sophie’s Team, will take part.
Sophie Schrad, 6, a Radnor Elementary School student with Down syndrome, will join members of her Daisy Scout troop taking part in the walk, said her mother, Jen Schrad. The Schrad family has participated in the event since Sophie was born, said Schrad, who is also the troop’s leader. read the full article here.
Not only was I blown away by the support from Sophie’s troop sisters, but I came home the other day to find an envelope full of more donations from our elementary school community for Team Sophie. We are overwhelmed.
Darth Vader & a very brave young Jedi
We are exactly where we are supposed to be.
Tuesday, August 13, 2013
(New here? I suggest you read the first post on the Children’s Hospital Day Feeding and Swallowing intensive program, HERE).
It was going so well! Week 1 of intensive feeding school got us to the point of where Sophie happily ate hotdogs and macaroni and cheese in addition to her few preferred foods.
Over the weekend when she does not have the program, I was thrilled to successfully get her to eat 2 hot dogs and strawberry applesauce. Yesterday in therapy she even ate pancakes and pureed broccoli! I made a modification to her umbrella stroller with PVC pipes and duct tape (costing only $3.46) to extend the handles and it worked like a charm. Those original handles are just too short! The compact stroller is good for taking on the train and keeps her from getting too tired from walking.Today was my day with her and the stuff hit the fan. I got into trouble for feeding her in the same manner that she is fed during therapy as I could screw it up. At her first of 3 meals she was introduced to eggs with a little cheese. She spit it out every time and started chucking her toys across the room, yet it wasn’t that bad.
Prior to 2nd meal Mr. P. asked if they could use her iPad as incentive and I agreed. Big mistake. I was gone for maybe 5 minutes to heat up my lunch. We are not allowed to eat in front of her as it is cruel, so that means when she eats we eat behind the two way mirror as we observe the session. When I entered the observation room, this was happening.
What the what?! She is not supposed to know that we watch her sessions so I couldn’t rush in and comfort her or pick her up and run away. So I watched her as my own lunch got cold and she melted the.heck.down.
I am a parent. I am not a feeding therapist so this is my layman’s understanding of the protocol. I understand why they do what they do, but it does not make it any easier to watch. The rules, which are stated at the start of every session are simple and clear. Eat and you get to play. Don’t eat and I will need to help you. Still don’t eat and you won’t get to play.
When sessions go badly, as they did for the duration of this meal and the last meal, they will not alter protocol. She could be having a bad day or not feeling well, so they want to give her the benefit of the doubt. They also want to show her consistency. However, the psychologist sat with me for 3rd meal and we had the talk. She gets one more meal with this protocol. If she continues to refuse food, in order to continue the program we will need to give permission to add a helper to block (hands, turning away) so that the feeding therapist can get the food to her mouth.
It wasn’t even the food that set her off in meal #2. It was using her iPad as incentive. She melted down when she had to take a break from it for the first bite and could not pull herself out of it. After meal #2 we checked into one of the hospital resource center’s sleeping rooms for a nap. (Now I can say I stayed in a room you order by the hour. ha!) The volunteers gave her a choice of a stuffed animal to keep and she selected a pig with wings.
When it was time to get up she was grumpy and was in meltdown before we even started the last session. It wasn’t about the food, but she refused every bite. Remember, the video above is less than 2 minutes and each feeding session is about 30 minutes. It feels much longer.
So, looking for silver linings…
1. We are blessed to live here and have access (fully paid by insurance) to this program which is run by experts who know what they are doing. We have to remember that and trust them when sessions get hard.
2. We are blessed that Sophie’s siblings are having such fun in Iowa and are getting to know their cousins well. Their grandparents are spoiling them and we know they are in capable and loving hands. Sophie talks about them and asks us to take her to Baba’s house (Grandma Paula) every day.
3. On my morning off yesterday I got a mani/pedi and dropped off a load of stuff to the thrift store. Mark and I are de-stuffing our Oreo (ala Amy Armstrong), and decluttering our home feels great.
4. Many friends have been signing up to feed us! We haven’t cooked in a days (which is a huge blessing). Thank you to my boss/mentor/friend Diane for coordinating this and to all you lovely friends who have signed up (Mara, Sue, Mariah, Nancy). Sophie’s program makes for long and exhausting days so we REALLY appreciate it y’all!
5. On Friday we have our fabulous sitter because we have tickets for the Cherry Poppin’ Daddies (one of our favorite bands from way back) at the Sellersville Theater.
6. Mark is on sabbatical until January which allows him to focus on Sophie and finish going through his latest book’s copy edits and indexing.
7. My job is part-time and my boss is amazing. I’m setting my own schedule which changes from day to day.
8. Lastly, we share the cutest pair of feral bunnies with our neighbors. They’ve been hanging around our back yards since Spring. Mark calls them Lounge bunnies. It’s not possible to be upset when we come home to see our friends.
Friday, August 9, 2013
Sometimes kids don’t eat. I’m not referring to picky eaters who hate lima beans. (Doesn’t everyone?) I’m talking about kids that for one reason or another have serious eating problems not caused by lax parenting or strong wills. Some kids require being fed through a g-tube. Others like Sophie and Alexander start out eating a wider variety of foods only to narrow their preferences down and then subsist on these same few foods every.single.day.
Sophie and Alexander both eat a small variety of crackers and chips. Sophie’s favorite is baby goldfish crackers from Pepperidge Farm, (must be baby goldfish as she gags on the regular size), but no broken crackers. Alexander prefers BBQ Pringles. They both love popcorn and chocolate milk, though Alexander must have his slightly warmed up. Cold drinks bother him. They also both refuse nearly all fruits, vegetables, and meats. The only exceptions I can think of are the smooth fruit medleys that come in squeezable pouches that Sophie occasionally eats. We call them squeezies. Alexander will eat hotdogs or chicken McNuggets (must be McNuggets) from time to time, but mostly he eats peanut butter sandwiches (no jelly) on wheat with the crusts cut off. He doesn’t like meat now that he knows it comes from animals and complains that it makes his tongue feel funny.
Sophie had her first appointment with the children’s hospital Feeding and Swallowing specialists in September of 2012. Yada yada yada, it’s now August 2013. Alexander and Helena are enjoying an extended visit with the family in Iowa so that Mark and I can focus on Sophie. She began an intensive outpatient program at the children’s hospital on Tuesday, 8/6. For the month, Monday through Friday from 9am-5pm we will be at the Day hospital participating in the feeding program. We hope that Sophie can learn to eat and that we can learn how to help Alexander as well.
Sophie is allowed only 4 ounces of chocolate milk in the morning at home. Then at 10am, 1pm, and 4pm she is with a feeding therapist while we watch behind a two way mirror. During week 4 Mark and I will begin training to feed her ourselves. In the evenings at home she can eat anything as long as we log it and she must drink a specific amount of liquids. The plan is extremely regimented, time consuming, and exhausting. It is also extremely successful.
Tuesday was Day 1. The lead feeding therapist (we’ll call him P.) and I observed as Mark attempted to feed Sophie. This gave P. an insight into her food avoidance behaviors. The rest of the day was mostly meet and greet with tours, a session (for us as parents) with the psychologist, a vitals check and physical exam. Soph will be weighed weekly and her calorie requirements while at home adjusted based on her consumption at the hospital. Her team consists of a lead feeding therapist, a team of feeding therapists, a social worker, psychologist, nutritionist, physician, an occupational therapist, and medical and psychology students.
On Day 2 P. introduced the rules to Sophie, which are pretty simple. Eat your bite = get to play with your preferred toys and receive praise. Don’t eat = you will be helped to eat. Keep rejecting food = no play. There’s more to it of course, but it focuses on lots of praise for compliance while ignoring noncompliance at first. If noncompliance continues, then they might use hand over hand to get the food in. If that doesn’t work, then blocking her hands or even techniques to open her mouth may be used. All of these techniques are discussed with us before they are implemented. It is hard work for our little girl.
Her meals consist of a few different foods that are in Styrofoam cups off to the side of the therapist. She is presented only one bite at a time so that she is not overwhelmed by the sight of the entire meal. Sometimes the spoon or fork will have food on it and presented on a plate. This minimizes the work she has to do so she can focus on eating. Other times she must get the bite from the plate to the utensil herself. A lot goes into good wrist movement, hand control, and coordination. Sophie still struggles with this.
For the first few days Sophie was presented her preferred foods. She was given her favorite toys and bubbles when she complied. This allowed the therapists to earn her trust. Then, slowly, food she used to eat but has lately refused (such as macaroni and cheese & hotdogs) were added. To our shock and great happiness, she complied easily. Today is the last day of week 1 and my first day alone with her without Mark. He prefers to drive into the city despite the heavy traffic. I prefer the trains, so off we went! I appreciated so much the kindness of strangers who held doors, carried our bags, and engaged her in conversations.
At her first feeding P. introduced bananas, which is something she has NEVER eaten. She ate the first bite and I fell off my chair. Then it got real.
These are only a few of Soph’s avoidance techniques.
She successfully avoided or spit out pieces of banana many times during meals 1-2. The bites got smaller and smaller and P. mushed them up to the consistency of pudding to make it as easy to eat as possible. The first time he took her toys away she did not cry, but she was shocked. She didn’t say a word but she looked at him as if to say, “What the heck is going on here?” At this point, if a bite got in regardless if she spit it out, she was praised and the spitting was ignored.
Using her IEP as a guide, Sophie will have two hours of OT/week. I watched this morning as the OT sprayed shaving cream over a foam alphabet. As I could have predicted, when presented with it, Soph flipped it over. She does NOT like getting her hands dirty. They moved from the picnic table to the floor and tried again. Sophie resisted at first but eventually used her fingers to push out the messy letters, one by one. Her OT is challenging her to work through her sensory issues.
By her last meal with a therapist for the week, Soph showed remarkable improvement towards accepting the first new food. As the bites of banana went in easily, they got bigger and bigger.
The first bite (above) was banana. Her only trouble was handling the spoon. SHE’S EATING BANANA!!! This was followed by play and a bite of mac-n-cheese. We are exhausted and happy.
Monday, July 22, 2013
Mark’s paternal grandmother Margaret went to bed as usual on Friday, July 19th. My birthday. Sometime in the night she crossed over, warm in her bed. Though she was 92 her passing took us all by surprise. She had been doing so well. It was exactly the way she wanted to pass. She told us so. Can you imagine, one moment here and the next – gone? We should all have such a sweet sending off.
Our hearts and thoughts have been in Iowa since we got the news. In an effort to celebrate life and recharge our batteries, we headed off for a day at the Shore. Ocean City, NJ never disappoints.
embedded video below or for the link, click HERE
In the coming weeks we will make the 18 hour drive to Iowa. We will attend Mark’s 20th high school reunion, visit with family and friends, and then Alexander and Helena will stay in Iowa for a long visit when we return. Sophie will enter an intensive feeding program at the children’s hospital from 8am-5pm, Monday – Friday for the entire month of August to train her to eat. Sophie and either Mark or I will be at the hospital for the duration.
We are in the midst of grief and apprehension, yet all we can do is move forward. We boogie board. We body surf. We build sand castles and work so hard to create memories filled with joy for our children.
Wednesday, July 3, 2013
When we bought our home two years ago we didn’t have rotten wooden window frames, or so we thought. Being from the midwest, we were unfamiliar with the damage that carpenter bees can do on fascia boards. We would quickly learn about both.
When a part of a window frame swung off the house this spring, we knew we had a problem. When we were bombarded by low flying Cessnas (dang loud, dumb carpenter bees) and had to avoid their falling larva from the roof (yuck), we took a close look and found that they had pretty much destroyed a number of boards at the roof line by drilling holes for their nests.
Grumble, grumble. After taking a few bids, we settled on a company called PJ Fitzpatrick to help us. We would need the rotten wood replaced, new gutters, soffits and fascia which would be capped (but with wood grain design) to prevent the dang bees from being able to nest and to protect the wood from rotting again. This type of work is way above our skill level so we were happy to let the experts have at it. Frankly having professionals help us makes me feel like I’m actually a grown up. Weird, I know.
They finished at 5pm today, just in time for us to set up for our 4th of July party. They got the job done in two days and spent much of it working in the rain. The crew of hunky Russian guys were skilled, polite, cleaned up after themselves, and I highly recommend them. I sent them home with goodie bags of left over candy from Sophie’s 6th Candyland theme birthday party (which will be another post as soon as I get more pictures from the other parents).
So before I put up our decorations for the party, I decided to quick post the before and after shots. The transformation is amazing and better yet, Mark should have no reason to be on the roof spraying the dang bees! Peace of mind, baby.
*basement and 2nd floor windows had horrible wood rot unrelated to the dang bees. Look at the damage the dang bees did to the wood!
Saturday, June 8, 2013
Helena, (A.K.A. the Schmoog or Schmoogie) and I had a great day together. It started in court for my hearing to contest two tickets related to our annual van inspection and emissions certification. She was great and charmed the police officer that we worked with. We won our appeal!
After our brief court appearance, we decided to hit up our favorite thrift stores. Mark, myself, and Helena love thrifting. To us it is a treasure hunt and an adventure. It’s not wise to head out with a particular item in mind, but rather a “let’s see what they’ve got today,” attitude.
Helena and I like to peruse the toys, jewelry (pins/brochures in particular), hats, books, and antique furniture. I also love to find the exceptionally strange or unique items that pop up from time to time.
After a quick deposit at the bank between thrift stores, I decided to take us out to eat for lunch. No place would suffice except our favorite Indian cuisine restaurant, Ekta. If you know our family, you understand that Sophie and Alexander have very limited foods that they will eat. Mark, while he has expanded his palate considerably in the last decade, is still a mid-western meat and potatoes guy. Schmoog, however, enjoys a wide variety of food.
As we waited at our table by the window, she breathed deeply and listened closely to the music. She exclaimed her joy with the rhythm and declared that the instrumental songs must be about Jesus. I marvel at the way her mind works. The smell overwhelmed her and she became patiently impatient for our meal. We started with vegetable samosas with mint and tamarind chutney.
Then, we split basil naan, basmati rice with chicken tikka masala and saag aur paneer. “MmmmMMMmm,” she declared over and over. We stuffed our bellies and she delighted over a simple slice of orange. Enough was left over for 2 more meals. Yum. As we ate we started getting texts, fb posts, and phone calls about the tragic building collapse in Philly. A building adjacent to the Salvation Army Thrift Store collapsed and trapped a number of people. I had recently posted on fb that we were thrifting and people were worried. Have I mentioned lately how much we love that we are loved?
Logy (loooo-g-E means happily stuffed) after our feast, I thought we should head home for a nap. Instead Schmoogie asked (repeatedly) to go to a candy store. So we did. On the drive home she munched on Swedish fish and I on a dark chocolate covered graham cracker. Then we snuggled and napped. We needed this kind of low key day.
I watched the 11pm news conference that night with Major Nutter about the building collapse who said, “We are a pretty tough city and we are quite resilient.” Nonetheless our prayers go out to those who are seriously injured or who lost loved ones.
Tuesday, June 4, 2013
We enrolled Alexander in Cub Scouts in the fall. As a Wolf he interacted with new and old friends and learned new skills. Tonight we had our end of year awards ceremony and graduation to the next level.
This is the face of pride in accomplishments. He’s now a Bear and we are excited to continue with scouting.
Saturday, May 25, 2013
The following is the text of the Delaware County Right to Education Task Force nomination for a Making a Difference Award that I submitted for Sophie’s friend Eliza. The Making a Difference Award recognizes staff members and students who have gone out of their way through their work, support, or friendship to be accepting, understanding and make sure to include children of all abilities.
“My daughter Sophie, who is in kindergarten at XXXX Elementary, happens to have a developmental disability. Her placement is in the regular kindergarten classroom with supports and services pushed into the class. As excited as we were about our daughter going to school, we were also nervous. Would she be happy? Would she make friends? On the first day we instructed her brother Alexander, who is in the 2nd grade, to sit next to her on the bus so that she wouldn’t be alone. He held her hand and the two of them got on the bus together.
From day one Sophie and Eliza became friends. Eliza is a fellow kindergarten student who does not have a disability. I have watched how naturally this friendship developed into something really special and ordinary at the same time. Parents of children with a disability can relate that the most basic experiences of life don’t always come easily for our children. Having a true friendship is something we dream of for our kids, but often fear that it might not happen.
Our first clue that kindergarten was going to be ok was during the first week of school. As Alexander and Sophie boarded the bus together, we noticed a group of her peers sitting in the front seat next to Sophie’s safety seat. They were excited to see her and clamored over which one of them would get to sit next to her. The same thing happened shortly afterwards when Sophie arrived at Back to School Night. We watched as Sophie ran off with her peers, leaving us behind. It became routine and was apparent that these friends were in it for the long haul. Every day they are excited to sit with her on the bus.
Eliza, in particular, has a special friendship with Sophie that I’ve been blessed to quietly witness. On the many days that Sophie has stayed home sick this school year, as we said good-bye to Alexander on the bus Eliza was visibly disappointed and asked about her friend. In class, Eliza and Sophie are frequently together. They often sit close during story time and next to each other at the tables during projects. When it is time to put materials away, Eliza gently guides Sophie to their cubbies as they scamper off to the next lesson. During one lesson, the children were to draw a picture and write a story. Sophie worked with her aid while Eliza sat next to her. Eliza drew a picture and wrote about the two of them playing together. This friendship extends outside of school as well. When the girls are at a birthday party, for example, they play together beautifully.
Eliza is a beautiful child. She accepts Sophie and understands her in a way that I as her mother or the professionals that work with Sophie can only strive to see her. Eliza does not see through a lens of ‘disability.’ She does not care that Sophie has a very limited vocabulary and learns differently. She knows nothing of IEPs, social goals, or modified curriculums and yet she can teach us all about inclusion because it has come naturally for her. She has no idea that her love of my daughter has been a dream realized. She’s a little girl who loves her friend. How amazing and how ordinary.”
I’m thrilled to share that Eliza won! The banquet took place this week and it was a beautiful event. Our family joined with Eliza, her parents, two bothers, 3 grandparents (who travelled to get here), and Eliza’s former pre-K teacher. The girls were glued together and when it came time for them to go on stage, for Eliza to accept her award, and for them to pose for a photo, they both did great!
This is a special and unexpected friendship that we will treasure always. Although I had begun to imagine watching the girls grow up together, her father has finished his residency and accepted a position in another state. They will move away this summer but will never be forgotten. Many tears were shed that night and not all of them were mine. Eliza is a beautiful girl who comes from an amazing family and we are blessed to know them.
Friday, May 24, 2013
continued from part 2
I went back to the office and as I worked my mind kept churning the same questions over and over. How could I have missed this? How could we have explained away so many things? How could we look to his father as a model for why it was normal? And then it hit me. Hard. I stopped typing. I stopped breathing and began to shake. I knew the truth before the thought, which felt gently whispered in my ear, was fully formed.
I sent Mark the following text to which he responded immediately, “yes.” “Mark, have you thought about whether or not you or I have Asperger’s?” I couldn’t just say, “Dude, you totally have Asperger’s,” could I? He responded, “Yes. Most definitely. Did it ever strike you as odd that I can concentrate on writing a vodka book for years on end, or focus on driving for 20 hours straight, but I can’t seem to keep straight our schedules one day to the next? I’ve certainly thought about it.”
That was the moment. The big one. The ground shifting under my feet insight to the reality of our lives that have completely changed my view of the vast complexities of human existence and our family truths. As it turns out we know quite well what Asperger’s looks like and it doesn’t resemble Max from the great tv show Parenthood AT ALL. Except a little, depending on what you’re looking at.
A flurry of texts between myself and my husband continued through the day recounting his traits that seen through the lens of Asperger’s made perfect sense. These are things that I both love, love, love about him but also the things that drive me up a wall backwards. Mark completed a series of Asperger’s questionnaires and would text me the results each indicating a strong likelihood of Asperger’s with something like, “Huh. Who knew?” There is a reason we think of Alexander as little Mark. He is little Mark. He called his mom who said she understood some of the things she saw as he was growing up and beautifully said, “but this doesn’t really change a thing.”
Except it does. It changes everything and I will be forever grateful that my son was diagnosed with Asperger’s. Now we can learn more about it so that we can support him in the ways that he needs. Facing this reality which was at first a trip to Hell is now just our new/old normal. The best part, the BEST part is the fairly certain conclusion that we (admittedly as lay people) came to about Mark likely having Asperger’s as well. He says this is probably why it didn’t faze him much when we learned about our son’s diagnosis. Somehow he felt the truth of it on an unconscious level and KNEW that despite the challenges, the benefits and joy are real. In that millisecond when the thought was whispered in my ear, my heart lightened. My grief left me and I began to laugh so hard I cried.
People say all the time that people with Asperger’s can lead happy and full lives and we KNOW this to be true. We live it every day. Just ask my husband, the mighty professor, author, hilarious, affectionate, kind, father, and friend about his happy and fulfilled existence.
Our journey to accepting (with relief and even joy) our son’s and possibly my husband’s diagnosis of Asperger’s couldn’t have happened any other way. It was all perfectly timed. We have our precious daughter Sophie to thank for teaching us about our own disabled attitudes and our subsequent metamorphosis. As humans, we all are different and different does not equal less than. We all have different skills, interest, strengths and areas that we need support. I thought I understood that but I didn’t truly get it like I do now.
This is the global shift that is happening. As a community, people with disabilities or differences and their loved ones are standing together to demand that the rest of the world get on board. We are blessed to be a part of it. I am so proud of my family and my husband for having the courage to look inward. Despite the struggles that will surely arise, I am GRATEFUL for this life.
to be continued…
continued from part 1
It took a couple of months to finish and the final report itself is 21 pages long. The school psychologist had Alexander self report, she had his teacher, OT and ST therapists complete evaluations, she conducted classroom observations, and Mark and I complete questionnaire after questionnaire. The tests bore out what we already knew. His IQ is 111 or above average. He has a superior vocabulary but delayed processing speed. Areas of significance include emotional control, initiation, working memory, planning/organizing, organizing materials, and monitoring. ADHD was ruled out but attention problems were highlighted as well as adaptability, functional communication, attitude towards school, and activities of daily living.
Perplexed by his speech pattern, his ST called a stuttering expert at CHOP who indicated he has seen the same pattern in people with Autism. This was about the same time that the latest series of parent questionnaires started to scare me. His pediatrician did not think it was ADHD and began asking questions that scared me. We were headed in a direction that I was desperate to stop.
That’s when we got a phone call from the school psychologist and speech therapist. They didn’t want to send home the parent questionnaire for Asperger’s without giving us a heads up, which was a good move. Three days later the reports were completed and we were told that “results of the social-emotional and behavioral assessments along with the testing results, the data from the questionnaires, as well as the observations indicates that Alexander demonstrates behaviors that are consistent with the characteristics of children with Asperger’s Syndrome.”
I spent the weekend alternating between crying, raging, drinking wine, cursing God, painting my kitchen blue, researching Asperger’s, bargaining with God, searching for ways to blame myself, and then landed firmly in denial. Mark was unfazed and that fazed me.
How could this possibly go unnoticed for so long? Taken separately each of the traits that I now suspect are tied to Asperger’s could be explained away. Much of them were exactly how Mark was as a child. The trains obsession, the picky eater, the meltdowns and on and on. I became depressed and felt like such a failure. Still I dragged my butt to work and commiserated with my colleagues who also work in the disability field.
It was a miserable few days and I was so disappointed in myself that I couldn’t stop looking at my son differently. Not negatively per se, but with eyes that know too well the struggles that go along with disabilities and the immense load of work that had just landed on my shoulders to ensure he will have everything he will need.
Our son Alexander is eight years old and he was just diagnosed with Asperger’s Syndrome. Many shorten it to Asperger’s or AS. Read about it HERE.
Hind sight being 20/20, it seems perfectly obvious that Alexander has likely had Asperger’s his whole life. Mark and I have spent a lot of time combing through memories of our son with a new lens and saying, ah ha! over and over again. I’ve been playing the game Asperger’s or Alexander? Is his demand for peanut butter sandwiches on wheat bread with the crusts cut off served for two meals a day a result of Asperger’s or is it just a preference? What about this preference or that behavior? I’ve started a list that is quite long. I don’t know why but I suppose it has something to do with my own understanding and acceptance of this new/old normal.
We are experts on Asperger’s and yet we know nothing about it. I think it’s safe to say that about the specialists as well. Looking back I can recall incidences at a very young age that point to Asperger’s. Alexander’s food restrictions began as a toddler. One night rather than eat one bite of a vegetable, he waited us out and eventually fell asleep under the table. As we carried him to bed for the night I was so frustrated with my stubborn son. I realize now that this wasn’t him being stubborn. This would become our pattern. Alexander would or would not do something and I would be frustrated with his stubbornness. So it is a relief to finally be given a tool with which to understand my child in a way that I could not prior to this diagnosis. Relief, however wasn’t my initial reaction, but I’ll get to that.
Looking back there were signs all along. Even in preschool he had difficulty interacting with his peers. He has friends now, but not many close ones and still prefers to be at home entertaining himself. His lagging social skills is why we enrolled him in Cub Scouts this year.
He and his father have spent countless hours learning about trains and the railroad, an obsession that we assumed Mark passed down from his own childhood. As a family we all got into trains and have enjoyed this hobby immensely. As the years went on Alexander has had other intense interests. He loves and has an encyclopedic knowledge of the Titanic. This has led to an interest in ships and when he pretend plays it is usually about something real, like the sinking of Poseidon. He talks incessantly about whatever his interests are (currently Minecraft and Godzilla), but who doesn’t talk about subjects that get their juices flowing?
His vocabulary has pretty much always been advanced, which we attributed to his obvious brilliance and the fact that we never have used baby talk with our kids. Although he had memorized Green Eggs and Ham by age 3.5 HERE, he struggled with reading comprehension and received extra help in kindergarten through first grade. Writing has always been a struggle and I had inquired about dyslexia early on. Instead of a diagnosis, he started occupational therapy for poor fine motor skills and a possible processing delay. He is an artist and if he’s not on the computer or iPad you can often find him drawing about his current obsession, which we attributed to the many artists in the family.
Just over a year ago he began an odd speech pattern where he breaks words up with a pause on the vowel. For example he might say bo(pause)oat for boat or do-og for dog. It comes and goes and sometimes is so strong that you can’t understand him. We brought it to the attention of the school, who didn’t see it, until they did, so he started speech therapy.
A social skills program began in December and Alexander was invited to join. He spent six lunch periods with other 2nd graders who were seen as lagging behind socially to play games. The kids just thought it was something fun to do and he was upset when it was over. He was getting upset more and more and it began to cause us great concern. Homework that should take 20 minutes would last at least an hour and would include meltdowns of epic proportions every.single.day. We know he’s smart so we got frustrated with him for not hunkering down and getting it done.
The odd speech pattern became more prevalent. The meltdowns increased to nightly at bedtime, because bedtime means that when he wakes up he has to go to school. He really does not want to go to school. Waking him up leads to a daily meltdown as it means he has to go to school. Breakfast leads to a meltdown and the need to remind him 60-70 times to eat. He struggles with following through with simple directions such as; go upstairs, change your clothes (which we lay out or he would end up in a sweater with shorts or some other odd combination), remember to change your socks AND underwear this time, brush your teeth and come back down. On most days he can remember 1 or two of those steps and we have to send him back up and often fix his miss buttoned or backwards shirts, unzipped flys, missing socks, or unbrushed teeth. He always responds with a meltdown and says he forgot. So we get frustrated at his stubbornness and inattention.
With the addition of ST to OT and perceived social skills deficits he received a 504 plan and a SRT or Student Resource Team. I knew something more was going on, so I did some research, decided he had dysgraphia or ADHD and insisted on a team meeting. Note: don’t say dysgraphia to a team unless you want everyone to freak out. Yet finally they decided to listen and investigate further. This is how the school psychologist began an intensive series of evaluations.
Tuesday, April 9, 2013
Thursday, March 21, 2013
This is Sophie’s first professional photo with her daddy holding her. It was inspired by the cover photo of a book that was very important to me after our prenatal diagnosis of DS called, Gifts, Mother's Reflect on How Children with Down Syndrome Enrich Their Lives.
Why March 21st? Down syndrome, also known as Trisomy 21, means that instead of having a pair, people with Down syndrome have 3 copies of the 21st chromosome. That’s what makes 3/21 our special day.
This is a karyotype, or picture of Sophie’s chromosomes. You can clearly see the trisomy of #21.
In honor of our daughter and all our bazillions of lovies with DS around the world, please enjoy this video created to celebrate this special day by the International Down syndrome Coalition.
While today is a day to celebrate our loved ones with Down syndrome, it is critical to point out that we have SO MUCH work to do in this world of ours. Our loved ones with disabilities are far more likely to be abused in all forms and repeatedly throughout their lifetime. Our culture still supports exclusion in our language making the Spread the Word to End the Word Campaign so important. Our children are still being denied access to inclusive education with critical supports and services far too often. More and more I am hearing of families still facing exclusion from the faith communities that should be at the forefront of acceptance. Mothers receiving a prenatal diagnosis of DS are still given limited, outdated, and gloomy information and are often encouraged to terminate their pregnancy. This has lead to a 90%+ abortion rate once mothers receive a prenatal diagnosis of DS. Outside of the disability community, we face brick walls and locked doors in every direction.
It is a daily fight and it is exhausting and it is worth it. I have to agree with Maureen Wallace in her article Down syndrome: Is awareness overdone and action overdue? when she, in righteous indignation, practically screams her demand for action. As a community we have shown the power we have when we unite. Although regular life is exhausting enough before adding advocacy into the mix, we need more people to pick up this mantle. Whether people are natural leaders or not, our children teach us that we MUST be their voice. We must take a stand and fight for their safety and dignity. We must. We must know our history and honor the warriors who came before us who fought for the rights our loved ones have today. Please visit Visionary Voices, a project collecting information and stories of these warriors so that we cannot forget.
In that light and in honor of those who go to battle every day, enjoy the video below. Oh, and happy World Down Syndrome Day!
For more who feel the same about the need for action, visit http://downsyndromeuprising.blogspot.com/
Tuesday, March 19, 2013
The wound that never fully heals, sighs as
I dared to lay down its protective armor hoping
for a moment’s breath without the weight of it
when Ignorance launched a stealth attack.
I am just One but I am fierce. And I am weary.
Stinging, raw pain threatens to bring me down and yet forward.
You gaze at me with beauty, resting in the safety of my arms
which are too weak to protect you always.
As your accidental warrior thrust into the fight
you trust me to be your voice. Failure is not an option.
I’ll never stop. My hands shake with rage or despair
at the indignity of the battle that cares not if I need rest.
I speak out but it is your strength that feeds me.
You deserve nothing less than everything.
When I falter, legions rise to carry us through the task.
I am One but we are countless in our numbers.
No darkness can survive your light.
Every cell of you is love that you give away to all
blessed to cross your path. Drawn to you,
we are forever altered from touching Grace.
The truth of your lessons cannot be denied.
We’ll win them over Baby, for your message is timeless.
I am your accidental warrior and you are my tiny teacher
changing the world with your gentle, forgiving embrace.
Sunday, March 17, 2013
This morning I introduced Sophie to her kindergarten Sunday school class. I explained that she has Down syndrome, that it isn’t anything to be afraid of and that she is so excited to become friends with her classmates. We talked about similarities and differences and that differences aren’t bad. I shared that she may not be able to talk with them like the other kids in class but that she loves to play and learn and have fun.
Her teacher read the book “My Friend Isabelle” by Eliza Woloson. It’s a fun book about a typical friendship between a little boy named Charlie and his friend Isabelle. Isabelle has Down syndrome. Charlie does not. This book highlights the similarities between these friends and encourages kids to understand that they too can be friends with someone with differences.
After the book we made sure that the kids knew that they could ask us questions at any time. A letter modified from the one we sent home at the beginning of the school year to her kindergarten class has been sent to the families from Sunday School. Click HERE. This letter opened up a lot of doors for us at Sophie’s elementary school and we hope it will do the same with her Sunday school peers.
Our new church has a membership of 2,600 and therefore has many staff members to serve our community. We are working with the Director of Children and Family Ministry on finding someone to act as a PCA, (personal care assistant) for Sophie during Sunday school so that both Mark and I can attend services. I have found someone who can provide training to the aid.
Beyond how inclusion will be addressed with Sophie, I’ve felt drawn to look more deeply into the needs of people with disabilities in our congregation. I’ve been reading “Including People with Disabilities in Faith Communities by Erik Carter, whom I saw present at the PDE Bureau of Special Education Conference last week. This interfaith book is so rich with information that we donated a copy to the church and Sophie’s teacher is reading it now.
In my mind, I would love to tap into existing work of the church and be a part of a Task Force on Disabilities. In my research I happily discovered that much work has already been done on the national level. “A task force of volunteers was asked to develop policy and recommendations for the church to work for justice with persons who have disabilities, both within the church itself and the wider social order. A consultation with informed Presbyterians drawn from the synods enriched the work. This policy of the Presbyterian Church (U.S.A.) confirms that the church—the Body of Christ—is to be a fully inclusive body in all dimensions of its life.” Living into the Body of Christ a paper on these policies and recommendations was created in 2006. Click HERE.
Out of their work was written a Congregational Audit of Disability Accessibility & Inclusion which is just a fabulous tool for any faith community to take an honest look at how inclusive and accessible their community truly is. Click HERE.
I can’t possibly list all of the good work they have done on this, so instead if you are curious I will send you to the Presbyterian Health Education and Welfare Association website where you can read about the other important work being done on domestic violence, child abuse, HIV/Aids and more. This link is specific to disability concerns. Click HERE.
So off I go to find out what is happening at church already. When I’m done, I plan to have a replicable module for inclusion available for faith communities. But first, a nap! Happy St. Patrick’s Day.
Saturday, March 9, 2013
Where to begin? I am blessed to have just returned from the 3 day annual state conference put on by the PA Department of Ed - Bureau of Special Education through PaTTAN held in Hershey, PA. I attended as a staff member of Pennsylvania’s Education for All Coalition, Inc. (PEAC) and helped run our table in the exhibit hall. I also attended as a parent of a child with a disability.
As is always the case after an event such as this, my brain is in overload and I need time to process the experience. However, there are a few pieces of this event that I just have to put out there right away.
I have to send everyone I know to visit Barbara Doyle’s website at http://www.barbaradoyle.com Be sure to look under Helpful Handouts for a wealth of free downloads. Her passion for inclusion and protecting our loved ones with disabilities from abuse make us kindred spirits.
Rick Guidotti was our first keynote presenter and I am now an unabashed groupie. An artist and award winning fashion photographer, Rick founded Positive Exposure to put his talent to use in a different way. “Positive Exposure utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences. Our educational and advocacy programs reach around the globe to promote a more inclusive, compassionate world where differences are celebrated.” Meet Rick:
Hopefully the keynote video will be available online soon, but until then, here is a shorter version of the address he gave on his passion for taking photographs of people with different abilities to highlight the beauty that much of the world does not initially see. Be sure to check out the gallery of images which does not get covered in the embedded video.
Some of my good friends and I are planning a trip to his studio in NY as he invited us up for a photo shoot of our kids! Lastly for this post, I highly recommend the children’s book Moody Cow Meditates.
“Peter the Cow is having a bad day. After missing the bus and wiping out on his bike, he loses his temper and gets in trouble. To make matters worse, all the other kids and cows are teasing him, calling him "Moody Cow." Peter's day just seems to get worse until his grandfather comes over. Can Grandpa teach him to settle his mind and let go of his frustration? This vibrant children's book is a fun and funny way to introduce children to the power of meditation. With full-color illustrations by the author, Moody Cow is ideal for parent-child sharing and for repeat reads.”
My kids love it and would recommend it for all young ones. It is a great way to introduce the ideas that all kids have bad days and that there are ways to feel better when angry thoughts have us melting down. My kids also love the Mind Jar app and we plan to make each of the kids a jar of their own. After all, I love projects with glitter.