Tuesday, April 2, 2013
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
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
Zach: " I love Yankees"
Well there you have it folks!
Music Therapy week #3
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.
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:
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.)
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:
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