Sophia is making a
request...
She is selling Girl Scout cookies - if you would like to place an order -
please send an email to
her mom at leanne.morphet@gmail.com and tell us how many of which type you
would like. You can also reach us by phone at 446-1970 (Cookies are
$4/box)Gluten
Free Toffee Tastic $5
Sophie
has a Goal: DONATIONS
For 3 years in a row, Sophie has
been overwhelmed with the generosity of our community, friends and family. Not
just because she met her goal of 250 boxes sold - but we were surprised to have nearly 300 boxes to donate to local food pantries. Sophie is hoping to get 100 donated
this year. Can you help?
201320142015
Sophie and
her Donations Collected to St. Lucy’s, Holy Family and St. Joseph’s Food
Pantries
One Donation Two Causes
Also - if you don't want the cookies - but want to donate anyhow, we are taking
cookie orders and delivering them to a local food bank for distribution - help
two causes at once! Please make note when ordering.
Allergies/Intolerances/Nutrition
Info
If you need nutritional and allergen information about the cookies that can be
found by going to:
Not a lot of blogging going on. Things are anything but boring, energies are expended in different directions, and fearing issues we waited to let everyone know about Zach's education. As we complete 2nd grade for Zach - we can let you know a bit about what the last 2 years has been like for Zach. As I decide what to share - I will get everyone briefed by sharing the article. And I hope to share more of our moments of the past 2 amazing years.
Sometimes analytical looks a lot like pessimistic. Indeed, if I reflected only on the probability of things instead of the possibility, I would be just that. In a world where so much is unfair, it's easy to be of the "woe is me" and "people suck" sort. And there are days ... well, yes there are days.
But indeed there are days - as long as I live to see another day, I see that as the opportunity to change statistics. Today of course is a good day, so my attitude is a reflection of my feelings.
If there is anything I realize, it's that in the heat of battle, when things are dismal, I need a record of when things aren't to help get me through, to remind me it isn't always bad.
Without people who are exceptional, my attitude would be much different. What makes for exceptional people? A lot of people like others who are famous, wealthy, etc. They hope it will either rub off or fall off. I am always suspicious of such folks, myself. In such an laborious if not unpopular life as I have, I am blessed with meeting some of the most amazing people on Earth. People who WITHOUT being asked, or being paid, or being recognized, or earning credit, reach out to us. These people stun me every time. And because of Zach's autism, we have met way more of these exceptional people than the average person.
Take last night as an extraordinary example. It was our Thursday night baseball game - through the Syracuse Challengers - a league based in the Little League for kids (and now adults too!) with disabilities. Some 450 kids get to wear a jersey, grab a bat, feel the dirt under their feet just as any other kid. The concept of this league, let alone the number it serves is just amazing. Run by families with special needs kids - they have been able to capitalize on the great intentions of ordinary folks to generously donate so that no one is turned away and no one has to pay to play.
But while the concept of the league along is amazing - it provided way more opportunity last evening than just my child's opportunity to play. Last night, 2 of my son's therapists - who did not know one another, who did not ask us, nor did we ask, showed up to watch him play.
The one therapist is about to move out of the area and I am sure has plenty to do to get ready. And he is a single young man who could probably find a lot more exciting venues to show up at then the 2 inning no score game of my son's. He included some baseball skills into his therapy with my son. And he even helped him to bat at 2 of his games.
The other therapist brought along her own family - her husband and son, age 1. Like having a full time job and a family of her own, and a newly walking child doesn't keep her crazy busy!
When I contemplate their attendance, I am blown away; all beliefs of people as being inherently selfish seem to be inaccurate.
And then there is Zach's aid. She has constantly encouraged me to have Zach do things I would otherwise be too wary of attempting. Things like going to the movies or out to dinner. We have had so much fun taking on the challenge of bringing Zach to such places knowing she was there as our safety net. And more often than not, he has risen to the occasion. She likely is unaware of how brave she has helped me to be.
And least not are the kids in Zach's class, who when given the
opportunity, choose to spend their free time (playtime) to engage with
Zach.
These people are the very people that help make me get up in the morning after a night of no sleep when the future is looking fairly dim. The motivation will always be to help and support Zach, but these people reinforce my efforts, which results in more opportunities and successes for my dear son. They are the ones who didn't need a special needs child of their own to recognize the needs and supports a family like ours has. I was not one of these people myself. I needed Zach to teach me those lessons. These people are gifts to the rest of us.
I live a very extraordinary life, even if it does involve the mundane or even tedious. Sometimes I actually feel bad for everybody else.
Sophie's take on the current situation in Ukraine:
Rough Draft:
"The title of the article I read was “Cease-Fire in Ukraine Fails and Preparations for War Begin” by Simon Shuster for Time magazine at Time.com. This article is mostly about Ukraine fighting pro-Russian rebels. Russia is helping the pro-Russian rebels and saying this is all a civil war and they're just offering humanitarian aid. After reading this article I felt really ticked at Russia for being land greedy and probably trying to take over the world and start world war 3 (witch we don’t need thanks a lot Russia)."
MOM'S INPUT: Can you add a few more details, specifically ones that support your feelings on the article?
Her Response and Final Copy:
"The
title of the article I read was “Cease-Fire in Ukraine Fails and
Preparations for War Begin” by Simon Shuster for Time magazine at
Time.com. The date of the article is November 5th 2014 at
1:37 PM. This article is mostly about Ukraine fighting pro-Russian
rebels after new parliament was elected. The pro-Russia rebels don’t
like the new government so they ended the cease-fire from the earlier
conflict. Russia is helping the pro-Russian rebels and saying this is
all a civil war and they're just offering humanitarian aid. Also
Russia is trying to claim the area around the city of Mariupol for
themselves because they have occupied the area with military troops.
After reading this article I felt really ticked at Russia for being
land greedy and lying to Ukraine about helping them although Ukraine
knows they probably are lying and also for breaking the cease-fire
which is a signed document. If the pro-Russian rebels like Russia so
much why cant they just move there?"
I learned when I attempted to help her edit that it is not The Ukraine - it is only Ukraine. Using the article "The Ukraine" his how Russians refer to it - but because they are trying to emphasize themselves as an independent country, they want the article dropped. OK now! Some might see this as a PC issue - but having Polish ancestry - I am sensitive to the simple ways we try to show our autonomy over those whose goal is to control us - so from now on Ukraine it is.
And I have to be honest, my following of news, especially of the international variety, has been greatly diminished as researching what gets urine smells out of hardwood, how to clear toilets of toys, and the best way to get sand out of carpets seems to take most of my time in my current path of life. So I enjoyed reading the article with her (she picked it out!) and helping her understand the issues. She is grounding me back in the real world.
A few might not know this about me, but when I was younger, I was an intended music major. I fell in love with my violin teacher, Mrs. Felice, and wanted to be just like her when I grew up. I sang in the choir at school, and was envious of my cousin whom took lessons for piano.
Having paid for 3 children to take piano lessons, all of whom had questionable practice habits, Mom and Dad decided not to offer me the same perk. But all the books were there. And so it began. I was in 2nd grade, and I voraciously went through the Leila Fletcher piano course books as best as I could myself.
In the meantime, I began violin in the 3rd grade. Mrs. Felice used the Suzuki method which I really like - it's very ABA-like in that a fundamental component is breaking things down into steps small enough for a young learner, loving encouragement, and constant repetition. It's designed so that even a non-musician parent can instruct their child on how to play a stringed instrument, again a tenant of a good ABA program.
At some point, my music teacher at school heard me tinkering with the piano prior to music class and asked me who my instructor was. When I told her I was self taught, she offered to take me on as a student. Around the time I began private study with her, she began a children's chorus up at Syracuse University and asked my parents if I could audition. My mother and father had never thought of me as a singer. Nor had I.
When the music director called to speak with my parents about auditioning, my mother explained I wouldn't be able to, as I had recently broken my arm rollerskating, not understanding that it was not a violin audition. My mom, surprised, said to the director "She sings?" to which the director responded: "Yes, and she sings." I auditioned, and I got in; I am one of the founding members of the Syracuse Children's Chorus.
Time marched on and I had outgrown my piano teacher, and had begun study with a professor at Syracuse University. He was German. I mean really, the accent and the whole thing. He made me nervous. I began barfing prior to lessons, recitals, etc.
At this point, music was quickly becoming my life. My intolerance for individual performance was definitely a problem. I realized I would likely never be a solo performer - my anxiety so severe that nearly every time I had to perform individually in front of others, I would lather myself into a tizzy either all out vomit producing, fainting, or terrible shakes that impacted my ability to perform. No one mentioned beta blockers back then. But I like "reading" music and being part of a larger group. I like assembling and leading. It was an "aha" moment when I decided I wanted to be a conductor. And so it began. I started to read orchestra scores and practice simultaneously reading the various lines of music.
I had taken up viola, so I could read 3 clefs easily: treble, bass, and C. However, those funky woodwind and brass instruments move those suckers around. I loved music. I was at peace with music. I practiced for hours a day without being asked. Especially my piano. I enjoyed Chopin, Bach, Mozart, Rachmaninoff, but also found a bunch of old sheet music and began playing songs from the 20s, 30s, 40s through ragtime and started to learn some jazz.
Then adolescence hit like a bad tornado. I remember people telling me I was too smart for music, that musicians got paid junk, and that it would be hard for a woman to get a conducting position.
At a party with a bunch of musician friends, I got drunk for the first time ever. I was pretty much a goody two shoes and this was really out of character for me. I was certain to learn a lesson. I thought I had had a bad dream, but the following day I realized, that while I was getting sick in the bathroom of the house where the party was at, a fellow student had told my friend that was helping me yack my brains out that he would take over. He did. He also ended up taking advantage of me.
Up until that point, I was a virgin. I had a boyfriend at another local school, captain of the football team in fact. I was a straight A student, went to Church every week, involved with my family and the community, and all my music. That was all to change. It was a really troubling time for me. My boyfriend dumped me. My parents were both furious at me and devastated at my reaction to what had happened. It was also at this time that after going to the doctor, a large cyst-like tumor was found on one of my ovaries.
I was never particularly adept at social situations- with music bonding me most closely to others. This single night's bad decision annihilated just about every relationship I had, even with my own parents. I tried to persevere, but the ostracizing I faced was too much for me to bear. I switched schools, which didn't solve all my problems. I was despondent. I watched my dream float away. I was at a loss. All joy for me was gone.
I met a boy who didn't care about all that happened to me. His friend was dating my girlfriend across the street. He liked me - and I him. He was very mechanical - I remember being impressed with how he could work on small engines and his own car. He helped me get my groove back - although I would never dare tread into thinking I could be a musician again. He taught me to drive stick, and explained how the gears and clutch worked. Having always done well in math and liking the hands on nature of science, things started to click, and an engineer was born.
I tried to take up with music again in college - I played viola in the university symphony, and sang in the select choir. I even had a few paid gigs at a couple of church choirs. I kept on trying to merge my technical prowess with my passion for music - I even contemplated becoming a sound engineer or digital instrument designer. But anytime I realized there was risk involved, I backed off. I would let fate tell me what kind of engineer to be - where there was demand, I would be the supply.
Is there any doubt as to why my engineering career fell short? Certainly not here.
I didn't want Sophie to really take to music. It brought back some bad memories for me. But I was nonetheless disappointed when I tried to get her to play piano, and she really showed very little interest. Violin has come down to screaming matches, and I have thrown my hands up in the air. I have pushed the sports a bit more - soccer (even though I have little attachment to it) and she has taken ballet since she was in kindergarten. She enjoys them - but I don't really see a natural enthusiasm for them like I have her playing video games and singing.
I haven't really encouraged Sophia with singing because of my intense and near morbid fear of solo performing. I have seen Sophie anxious, and it aint pretty. But guess what? She can get on stage and not even break out in a sweat.
Today, while on facebook, a friend posted how well Sophia had done at the school concert singing her solo. Of course, I had no idea she was singing a solo. I never heard her practice. I had no idea what the song was. This evening, I got to watch her sing as if it was no big deal. She told me she wasn't nervous. She also told me she wasn't proud. She just really loves to sing and would like to do it some more - even solos.
Parenting without fears seams impossible, but I will not let my fears dictate Sophie's path in life. I will not let be a coward anymore. Without further ado, I would like to share my little nightingale and her lovely performance for both yours and mine's pleasure.
The eggs are nor prettier. The process is much messier. So why do it? Sensory issues.
My kids are both tactile learners - and the more input they can get sensory wise - the more they understand the experience. Dyeing eggs is usually more observational - the addition of shaving cream allows for more physical manipulation I think this is a great way to enjoy dyeing eggs! My thanks to Jeanne Sokolowski for sharing this project on facebook - here's how it worked out in the Morphet Household.
So the crying has continued. On again, off again for the last few weeks. Much better than before, until yesterday. It has begun escalating again. He cried for his aid today for 30 minutes straight while attending a bouncy house, and then it subsided. Now tonight, his cries have risen to the inconsolable screams, we are 30 minutes in, and 10 minutes after an ibuprofen dose. My hands are sweating and I feel nauseous. He pushed me away when I asked if he wanted me near him, so I have left the room and said a prayer that the ibuprofen give him some relief. It's a Saturday night, there is no doctor to call. An emergency room visit makes me shudder - their ability to handle a non-verbal autistic child flailing will likely lead to restraint - I have been supporting enough other families in the area to know the deal.
Sophie has closed her door in her bedroom and fallen asleep - a defense mechanism we all have adopted from time to time to get us through these times. Listening to him cry is exhausting, even if it is shorts bursts let alone an hour or 2. Sophie's exceptionally keen hearing (a trait she inherited from her own father) makes the crying unusually difficult for her.
And then it happens. The crying has stopped. He has eaten some dinner and is back to his jovial self. The ibuprofen has done its job, again. Thank God.
Steve and I did decide to take our weekend away in nearby Skaneatateles a few weeks ago. An amazing couple have a charitable organization called David's Refuge that they created after the loss of their son to a rare genetic disorder. David's Refuge, is a respite ministry for parents of children with special needs. It provides caretakers with a weekend getaway in order to recharge from the day to day care-giving duties involved in raising a special needs child.
Warren and Brenda Pfohl decided to create the ministry after the loss of their son at the age of 22 after extensive care-giving for their him for 13 years when diagnosed with Batten's Disease at age 9. This genetic disorder causes progressively debilitating symptoms such as loss of sight, seizures, lack of motor control, and mental impairment. Batten's Disease is always fatal.
Watching your child lose their faculties I understand to some degree, as Zach had lost his speech and social skills. However knowing that they will eventually perish is the worse this world can offer after all your diligent care. The only consolation is to know that they are no longer suffering from their physical ailments and the associated psychological and emotional strain associated with that. To take that pain and turn it into something so needed and genuine is a blessing beyond belief for those who have a hard time sometimes leaving for an hour.
From what I have read of David, he was quite the spiritual young man. He and his family made sure there were opportunities to reflect and laugh amongst the despair. To have had the opportunity to meet them as they extended themselves to us was very moving and indeed supportive. While the weekend was not as relaxing as it could have been, the thoughts of Zach crying for our caregiver and stressors from our work-lives looming over our heads, it still has played a pivotal role in our current role as caregivers. As we returned from our weekend, and I went on to read Warren's blog of their journey, I realized that they were able to provide us with something I had no idea we needed, namely, to know that we are not alone and that what we do matters. So often I feel invisible and that Zach too is invisible.
The other caregivers at the refuge that weekend were all variations of a theme. We were all tired. Two of the women their told of their medical issues themselves on top of caring for children with special needs. What amazed me was the smiles that we could offer one another - not patronizing or pitiful, but the jokes and opportunity to laugh amongst the knowledge that sometimes this stuff really stinks.
Several hours have passed since I started this post. He is once again a ball of tears. We must get him through the night and then calls to the doctor will need to be placed in the morning. Steve, Sophie and I are sitting in the basement, Zach has been administered another dose of pain reliever and is settling down a bit. I look around at Steve and Sophie and can only imagine what I look like, their long faces are drawn and look weary. Well, Sophie is brightening as she plays Growtopia on the iPad. I thank God for devices that help take our brains away for these increments of time when not much else would.
The other solace I have taken up is extreme eating. My weight, after losing 15 pounds, has begun to creep up again, just after I was so proud to get it down healthy without crazy diets or extreme fads. I recognize that I have taken on too much - especially now that Sophia has begun to struggle a bit with her own issues on top of our hectic family life. I am heart broken that I cannot pursue things that I would like to, and know that I have disappointed others who had been accustomed to me rising to the occasion.
On top of my weight gain, I have been struggling with fatigue, memory loss, and confusion. We live at the doctors offices around here, always hopeful, yet there never seems to be a solution. And yet amongst these things, we still manage to laugh from time to time, to take time for one another and to be grateful for what we have.
In those few hours this evening when Zach's twinkle was back, Steve made homemade pizza and chicken wings, and a beautiful salad. We sat around the kitchen table, and Steve teased Sophia while Zach jumped up and down and ate french fries. We have learned to take advantage of moments around here. I highly suggest everyone else do the same. It makes a world of difference.
