Saturday, March 23, 2013

Double the Meaning- Single Donations Helps 2 Organizations


Just wanted to send our thanks to all who purchased Girl Scout cookies from Sophie this year - she met her goal and


sold 250 boxes!

Of those 250 boxes, Sophia also gave the option for people to donate cookies to the St. Joseph's Food Pantry - and she was able to get

42 boxes donated
to families in need right here in our community!  We are so lucky to have such generous friends and family to help out Sophia, the Girl Scouts and the Food Pantry - that's the way to do it!

We avoided doing online requests this year - because the Troop doesn't cover shipping costs - so it was hitting Mom and Dads wallet kind of hard. 












We look forward to another great year next year!  Thanks again!

Tuesday, March 19, 2013

Yankees

Trying to teach Zach to say "I love you" while using sign language as a visual prompt.

 Zach: " I love Yankees" 

Well there you have it folks! 

Music Therapy week #3

Photo: Music therapy. We started Music Therapy. This was Zach's 3rd appt - and each time it keeps on getting better and better. This woman is wonderful in so many ways. She definitely has a calling for this field and we are lucky to have her and her family in Syracuse.

She is a board certified music therapist and her level of professionalism shows.  To find out more about this credential you can check it out here www.cbmt.org

Some research to look into can be found at National Institute of Health Publications

Saturday, March 16, 2013

Sophia' Sentiments # 376



While talking to her girlfriend about her chameleons who have been fighting...

Sophia: "Sometimes life is tough."

Thursday, March 14, 2013

Party Invitations

Zach received his 1st invitation to a birthday party from a typical classmate this year. He will go, I will be there for support, and it will be great! This is an example of what those with typical kids can do to make the day of a special needs parent and their child. :) Another lucky duck moment brought to you by the Morphets.

All year I have wondered why he hasn't received one single invitation: Did they know he had special needs and didn't invite him because of it?  Were the teachers not putting the invitations in his backpack? Either of these scenarios stings a bit, but I sort of understand why parents might make this choice,too - they are scared because they have no experience with special needs. I know before Zach I would have been scared too.  But one walk into Zach's school to drop him off says it all - things I wish people could observe about their kids - these kids go out of their way to greet him.  "Hi, Zach" echoes down the hallway as I walk him to class.  The occasional free spirit will break away from their lunch line to ask Zach for a high five, a skill we had to work on, which is now automatic for him.  

Our kids are better at this stuff than we are.  And I think we have inclusion to blame for that.

Tuesday, February 12, 2013

Happy 43rd to Me!

After one of the rockiest autumns I can ever remember, things seem to have taken a turn and I feel comfortable taking the time to tell you about them.  Zach had a really rough fall.  Toileting was lost, language languished, sleep lessened, crying increased, property damage increased, safe behavior decreased, and phone calls came from school on what felt like a near daily basis. At some point, getting only a few hours a sleep a night, I managed to crumble into tears as I asked those whose job it is to help us why it felt like they were giving us a hard time.  Did they not see the exhaustion?  And of course, I was met not with understanding and compassion, but with excuses and defensiveness.  Did they not see the struggle?

He was still my little boy whom I love with all my heart, but  he was requiring constant supervision for his waking hours. With Steve still having to go to work and Sophie to school, that meant all my energies were directed at Zach, and Steve tried to take over when he could. 

All my plans for my advocacy work seemed lost.  How long we could bear the pace was an unknown.  I wasn't angry - just weak. I went to my doctor to tell him there was something wrong with me - I was so tired even when I did manage to get 6 hours of sleep.  He set me straight:  Most people REQUIRE 8 hours.  This is not a flexible ideal, it is not a sign of weakness, it is something intrinsic to the human species.  Those who do no get this much sleep are either outliers or liars or hurting their bodies by not getting enough rest.  I was so glad that he made me feel not so guilty about feeling a desperate need to sleep.  So many people seemed to laugh at our situation - we are not talking about a newborn people!  We are talking about a 6 year old with no end in sight!  And by the way - no one is offering to come over and watch my baby so I can take a nap like they did with when they were my new bundles of sleeplessness.  And there are no naps - well except if you count the ones he takes at school.  Ugh!  (He only goes to school for 2.5 hours - so when the notes were coming home that he was sleeping for an hour or hour and a half of that time, you could say that I was not the happiest of campers.)

There is more to come - and good news at that!  But not for tonight - 'cause I am going out with some friends to celebrate.  Before I do, I want to share a few things with you all.  I had the pleasure of  having lunch with my Mommy today.  She took me out to a favorite restaurant and even though it was cloudy and grey, it was so pleasant to look over Skaneateles Lake while we dined.  It was such a gift to have a moment, just her and I, together.

Even though I know I am not her favorite, and we are alike in some of the not good ways, and differ in opinions on others,  she is my Mom, she tried her best to do what was right, she gave me life and love, too.

Anyhow, it got me thinking after I dropped her off, about everyone, the state of my life, the struggles we have gone through, the struggles we know others are facing, and the fact that one never knows when their time will come. I have a terrible fear of public speaking that I have been slowly working on, and even a more fierce fear of seeing myself in pictures or videotape.  As I have gotten older, I have begun to realize so many of my fears only hurt me, not protect me. My biggest concern is in not letting those who matter to me know it before it's too late.  So here it goes:




Thursday, January 3, 2013

Tears at the Eye Glass Store: A Revelation that Love Still Exists

I am completely aware of some things going on in our lives that others might think I don't.  I either feel that I have no control over them or that I am too under water to handle them.  I know that I am chronically behind in paperwork, thank yous, getting things organized for Zach and Sophie, cooking healthy meals, and doing those things for loved ones that need a little help and encouragement that I would like to, let's not even talk about my attitude.  As I had mentioned in our Christmas/ New Years letter, Mom is now on oxygen full time.  As much as others don't like to think about it, I do all the time; we are on limited time with her. 

This is in the back of my head, probably even more-so than my siblings, most likely since I have had a fear of my parents dying since I was really young.  My parents were older when they had me, a little bit more unusual than it is today, and it was a frequent topic of conversation.  At one point a school acquaintance saw me and my father at the all, and thought he was my grandfather.  The notion of them being so much older always caused me to worry about losing them.  I frequently had nightmares as a child of them dying.  I was in my late 20's when Dad passed, 14 years ago today. Every time I go to a wedding and see that the father/daughter dance is about to commence, I excuse myself; it's a little too difficult for me to witness.  I think about what life would be like if my father was around for my kids all the time.  He was such a terrific grandpa - it is such a loss for my kids to not have him.  They don't know what it is like to have someone so jovial and funny go out of their way for them like he did.  He was the type of man that made everyone feel like they were his favorite; he was adeptly skilled at how to make people feel special.  I try to fill that void for my kids since really there is no one to step up and take the place of them having grandfathers.  I admit to being indulgent and wanting to give them things not yet worked for.

I tried to repay Dad for all he did for me when he was alive - but I was just starting out didn't have a ton to offer.  I will always be happy to know I helped him by his first brand new car.  Doing things for Mom has been tricky for me.  When Pops first died, we organized a trip to Paradise Island - she still will talk about it!  As her health began to fail, it was things like taking her out to dinner, fixing things around the house, and gift cards to favorite stores and restaurants.  I have felt guilty that for the last three years, I have been able to take my dear mother-in-law to NYC to a show and dinner for the day, something her, Sophie, and I love. I haven't been able to bring my own mother, who I also know would love it, but would be unable to withstand the required walking in NYC.  So this year, I was able to get show tickets for White Christmas, playing right here in Syracuse.  I was so excited that I was going to take my mother to a show!  And then the day came, and when I called to check on her, she was wary of the trip and the venue, and decided against going.  I was able to find a replacement to take her ticket, and the show was very good - she would have loved it.  But it was hard for me to enjoy, the intent had been lost.  It caused my heart to ache.

It's so hard for me to do things for Mom right now.  Zach is a ball of fire - needing to be carefully watched, having little support to help, working and going to school, attending to the house, the husband, and Sophie too.  There is no time left over - in fact, usually, there is time carved out of sleep and caring for ourselves to get those things done.  I am torn right now, knowing it's her last years and I am not really able to do much to bring her any joy.  Guilt plagues me daily. 


Christmas was nice - filled with lots of festivities, parties, eating, get togethers, eating, shopping, eating playing, eating... Steve and I struggle at this time of year.  Steve, because it is so heavily ladened with memories of his father who adored Christmas, and mine because it was when my father passed - a week or so before Christmas throughout the New Year spent at Crouse Hospital ICU.

We tend to spend the holidays by staying very busy - trying to keep the kids active and our brains not focused on our sorrows.   Zach doesn't appear to love Santa - but did allow him to rock next to him. 

I will carve out the time and spend it with Mom.  I realize that it won't be how I want it to be; I  can see that we are approaching a sunset.  I also need to carve out more time for us - I think filling life with all this work all the time does offer a sense of purpose, but I finally have come to the realization that repression is a real thing in my life.

With Aunt Cindy in town to offer up a little help, Steve managed to take some time off, and we were able to go to the updated Carousel Mall, now known as Destinty USA.  We are not mall goers, but without the sense to know where to go for eye glasses, we thought we would just hit the Lens Crafters there. Steve has been wearing and old prescription for almost 2 years now, all after an incident with his old glasses.  A friend's teenage son, who has autism, took Steve's glasses off of him while visiting their pool, and threw them into the bottom of the pool.  Upon retrieval, they were thoroughly scratched. He didn't have the heart to tell the boy's mother, nor did we have the insurance coverage to purchase another pair for the year.  So time marched on, and life got too hectic, too hectic for Steven to even think to go the following year and replace his old glasses.

Steve's vision, particularly in one eye, is pretty severely limited.  I have known for many years, that one of his dreams would be able to not require glasses, but with present technology, that is not possible.  He tried contacts in the past, after several fittings, he realized his astigmatism was too severe for him to ever be comfortable. 

So here we were nearly 2 years later, getting those new glasses ordered.  As the sales people helped him pick out frames, we then sat down to pay for these bad boys.  All of a sudden, I was overcome with emotion, and sat their tearing in the middle of the eye glass store at the mall.  I knew two things at that moment:  Steve and I neglect ourselves too much too often, and despite our strained relationship, I truly love my husband. It felt like a relief to go and be together without children.  It felt sad to realize that my husband's comfort and vision were being neglected because of the constant needs we are attending to.

If there is one thing I learned from my parents, it's that a good parent will sacrifice for their children.  If there is another thing I learned from observation, it's also important to recognize that we are part of humanity and need to treat ourselves with the kindness we wish to treat others with; after all, we are not taking care of Zach and trying to help others as a flagellation or other form of punishment.  We are doing it because of the love in our hearts and the desire to share this love. Tears in the eye glass shop made realize these lessons, something I hadn't known about myself or believed in.  I am still surprised at all the lessons to be learned at this ripe old age.

14 years and I still miss him so much. I heard Steve crumple a shopping bag this morning and thought of him.(Pops was a chronic shopper and could probably taught a course in consumer economics with his coupon prowess!)  I wish I could ask him what he wants for me to do to make sure these years count for Mom.  He hasn't come to me in my dreams in several years now.  I guess his passing reassured me of a lesson that he had always lived, not to take this time and those you love for granted.  Love you Pops.