I can't speak for Steve, but I can certainly speak for myself when I say thank you to everyone for stopping in and logging in to our service. It certainly was very Catholic which I hope didn't turn too many people off - we certainly wanted all faiths to feel comfortable.
One of Zach's therapist called to tell us she wasn't going to make it - she just got news that her mother's breast cancer had spread to her other breast, and her bones. Stage 4. That broke my heart, as this therapist is trying to deal with her home which had a severe fire several months ago and isn't living in her own home right now. Plus her family is mostly out in Massachusetts and here she is in Syracuse.
One of my college friends drove in for the event - and I haven't seen him in like 15 years! What a terrific guy! And his poor wife was left to attend to their 3 beautiful daughters. Thanks to her.
A friend from work was there - that really touched my heart.
Two of Zach's current teachers came by too. His one teacher has a 2 year old, and her husband was diagnosed with testicular cancer a year ago. They have been going through quite a lot this past year.
The support helped take the edge off the bad taste in my mouth after the school district meeting this week. There are some really awesome people out there. Thank you for helping to restore some faith in humanity!
Wednesday, September 30, 2009
Tonight's Prayer Event Website
Here is the link for the broadcast. Zach's Prayer Service
You will not want to link ahead of time or it will not stream correctly.
Please link in at 6:35 to allow for those who will be here in person to arrive.
Here is the actual URL: http://www.justin.tv/morphet
Thanks!
You will not want to link ahead of time or it will not stream correctly.
Please link in at 6:35 to allow for those who will be here in person to arrive.
Here is the actual URL: http://www.justin.tv/morphet
Thanks!
Monday, September 28, 2009
Sideswiped
Went in with low expectations, was baited at our last meeting with the Special Ed department with a yeah "One hour a day at home has been done", and ultimately today told nope to providing a therapist in his home environment. Went in with low expectations and were still disappointed in the outcome. We were duped into thinking we would receive something when there was really no intent at all. That makes twice in one year, once by EI when we got the "sure we'll get you ABA. We're looking into it." and now with the school district. I'll spare you the details, but let's just say they made sure to have someone their that was rude and I don't take kindly to that. Isn't that nice to have someone be nasty to people who are going through something really devastating? Nice. Real nice. There was no need for that.
We need those prayers folks.
Hey - and if God doesn't help than we will have to resort to lawyers. Friggin lawyers.
We need those prayers folks.
Hey - and if God doesn't help than we will have to resort to lawyers. Friggin lawyers.
Sunday, September 27, 2009
Prayer Service
A man I once called Father had a saying:
Come join us in a prayer service at the house for Zachary.
Wednesday September 30, 2009, 6:30 pm
Should be around a half hour service.
We invite ALL our friends and family, regardless of spiritual belief, to be there with us.
If you are a believer, you likely know the power of when more than one gather together in prayer.
If you are not, it will be a show of support for our family that we will very much appreciate.
We hope to have a webcast of the event, and ask those of you not able to attend to to log on and be there with us via the web. The web address will be posted on our blog on the day of the event.
As we approach the one year anniversary of realizing Zachary's illness, we could really use your physical presence to get us through this time! Won't you please stop in?
We hope you can join us.
"You've tried everything else, why not try God?"
Come join us in a prayer service at the house for Zachary.
Wednesday September 30, 2009, 6:30 pm
Should be around a half hour service.
We invite ALL our friends and family, regardless of spiritual belief, to be there with us.
If you are a believer, you likely know the power of when more than one gather together in prayer.
If you are not, it will be a show of support for our family that we will very much appreciate.
We hope to have a webcast of the event, and ask those of you not able to attend to to log on and be there with us via the web. The web address will be posted on our blog on the day of the event.
As we approach the one year anniversary of realizing Zachary's illness, we could really use your physical presence to get us through this time! Won't you please stop in?
We hope you can join us.
Friday, September 25, 2009
Dread
I have recently received many comments of consolation regarding my unfortunate tooth issues leading up to my recent root canal. As many of you may recall, this tooth issue first occured right after I managed to cracked my tooth from clenching my teeth last October when we first realized Zach had autism.
I was not expecting such outpouring of sympathy over my (stupid) tooth. I guarantee you, although it hurt like hell, it no where felt or feels like the sadness in my heart over what is going on with Zach. I would gladly live with that pain if it meant Zach miraculously could be back to his old self.
So why is it that people had no problem reaching out to me over my tooth - but not the ordeal we have been going through this past year? There are two things that come to mind when pondering this thought: 1) people can relate to a hurting tooth, people don't all have children with special needs, 2) a hurting tooth is most likely treatable/fixable, uh autism, not so much, at least that's what most people think.
Well, I almost felt like telling people to take a hike when they showed me sympathy. I certainly wasn't expecting it, and it almost irritated me. I guess I now realize that I don't want sympathy with any of what's going on with us, what I want is understanding, consideration, contact with others, a helping hand once in awhile.
A recently heard a story of a woman coming back to her hometown of Syracuse, and being asked to visit a family friend whose husband had a freak accident and is now left a quadriplegic. This is a man who was a well respected doctor in the area and had many a friend prior to his accident. The woman was dreading going to visit, but felt obligated to.
There is a switch that most people don't likely flip in their lives that results in a different approach to this problem. No one likes that someone is having difficulty in their life. If it is something you yourself have not gone through, the unknown is very scary. If I had to hammer out a guess a person with a lack of introspection and who has been blessed with little struggle in their life will likely run the other way. A person who is familiar with loss, or true soul reaching pain, will know that it's only an hour of their life and will attend.
I once heard someone thank a friend for visiting a near death woman at the hospital. What I didn't expect was to hear the person respond in kind that they were grateful to have been their to comfort such nice people. This remark has always stayed with me. Was the experience pleasant? Well, I am sure it wasn't like going out for ice cream. However, much of the time the life we lead is not the reality of our existence. It is the filler. Things that cause us to have meaning in our lives are these exact significant events, uncomfortable as they are, they are what give us meaning. We still like going out for ice cream. In fact, it tastes even better now that we truly acknowledge that simple pleasures are indeed a blessing to be cherished as much as the great new sports car or trip to Hawaii.
In the Catholic diocese which I was raised, we were mandated to perform community service as a requirement for confirmation into the church. Guess what I did? Worked with the retarded and autistic. Yup. Used to come home crying because of how dire the situation was for some of the kids. Also had to teach how to make grilled cheese for some of the older students who were learning life skills. The funny part of the story was that I had never made one for myself before! (Mom hated us in the kitchen to cook.) I also taught a few students how to take the city bus and purchase items at the farmer's market. Being from suburbia I barely knew how to do this myself. I will always remember that time. I was proud of the work I had done and used to share my stories with others frequently.
Avoiding someone because of what they are facing? Well, my recommendation is don't. You will be cherished for making the effort, feel better about yourself, and will be doing the will of that which created us.
Did I happen to mention I am dreading Zach's upcoming IEP meeting on Monday? Wish us luck.
I was not expecting such outpouring of sympathy over my (stupid) tooth. I guarantee you, although it hurt like hell, it no where felt or feels like the sadness in my heart over what is going on with Zach. I would gladly live with that pain if it meant Zach miraculously could be back to his old self.
So why is it that people had no problem reaching out to me over my tooth - but not the ordeal we have been going through this past year? There are two things that come to mind when pondering this thought: 1) people can relate to a hurting tooth, people don't all have children with special needs, 2) a hurting tooth is most likely treatable/fixable, uh autism, not so much, at least that's what most people think.
Well, I almost felt like telling people to take a hike when they showed me sympathy. I certainly wasn't expecting it, and it almost irritated me. I guess I now realize that I don't want sympathy with any of what's going on with us, what I want is understanding, consideration, contact with others, a helping hand once in awhile.
A recently heard a story of a woman coming back to her hometown of Syracuse, and being asked to visit a family friend whose husband had a freak accident and is now left a quadriplegic. This is a man who was a well respected doctor in the area and had many a friend prior to his accident. The woman was dreading going to visit, but felt obligated to.
There is a switch that most people don't likely flip in their lives that results in a different approach to this problem. No one likes that someone is having difficulty in their life. If it is something you yourself have not gone through, the unknown is very scary. If I had to hammer out a guess a person with a lack of introspection and who has been blessed with little struggle in their life will likely run the other way. A person who is familiar with loss, or true soul reaching pain, will know that it's only an hour of their life and will attend.
I once heard someone thank a friend for visiting a near death woman at the hospital. What I didn't expect was to hear the person respond in kind that they were grateful to have been their to comfort such nice people. This remark has always stayed with me. Was the experience pleasant? Well, I am sure it wasn't like going out for ice cream. However, much of the time the life we lead is not the reality of our existence. It is the filler. Things that cause us to have meaning in our lives are these exact significant events, uncomfortable as they are, they are what give us meaning. We still like going out for ice cream. In fact, it tastes even better now that we truly acknowledge that simple pleasures are indeed a blessing to be cherished as much as the great new sports car or trip to Hawaii.
In the Catholic diocese which I was raised, we were mandated to perform community service as a requirement for confirmation into the church. Guess what I did? Worked with the retarded and autistic. Yup. Used to come home crying because of how dire the situation was for some of the kids. Also had to teach how to make grilled cheese for some of the older students who were learning life skills. The funny part of the story was that I had never made one for myself before! (Mom hated us in the kitchen to cook.) I also taught a few students how to take the city bus and purchase items at the farmer's market. Being from suburbia I barely knew how to do this myself. I will always remember that time. I was proud of the work I had done and used to share my stories with others frequently.
Avoiding someone because of what they are facing? Well, my recommendation is don't. You will be cherished for making the effort, feel better about yourself, and will be doing the will of that which created us.
Did I happen to mention I am dreading Zach's upcoming IEP meeting on Monday? Wish us luck.
Thursday, September 24, 2009
Jett Travolta
My heart goes out to the Travolta family as they admit that their son had autism.
I cannot imagine the heaviness in their hearts. All the money in the world doesn't assure that you are happy - having a disabled child, an ill child, and losing that child in death - I cannot imagine any greater pain.
Just to let people know - there are a lot of conditions that are co-morbid with autism. Epileptic seizures are frequently reported in as high as 40% of those who have autism. Indeed, it was this sad connection that helped researchers realize that autism was not a psychological condition (sometimes deemed as refrigerator mother syndrome or schizophrenia) but a true medical illness perpetuating in the brain; neurological.
Autism is serious. To call it a learning disorder trivializes the nature of the disease, and doesn't recognize that indeed those with it could be at greater risk for severe health problems, perhaps even death. Most prognosis for autism is that there is a normal life span. However, this doesn't consider the other ailments that are commonly comorbid with autism such as seizures and genetic problems. A child who cannot communicate about how they feel are likely not to receive the treatment they need for other medical conditions.
I hope the Travolta family can come to terms with all the terrible public scrutiny they are facing. I with them peace as they are lingering in the darkest trenches a parent can be in.
I cannot imagine the heaviness in their hearts. All the money in the world doesn't assure that you are happy - having a disabled child, an ill child, and losing that child in death - I cannot imagine any greater pain.
Just to let people know - there are a lot of conditions that are co-morbid with autism. Epileptic seizures are frequently reported in as high as 40% of those who have autism. Indeed, it was this sad connection that helped researchers realize that autism was not a psychological condition (sometimes deemed as refrigerator mother syndrome or schizophrenia) but a true medical illness perpetuating in the brain; neurological.
Autism is serious. To call it a learning disorder trivializes the nature of the disease, and doesn't recognize that indeed those with it could be at greater risk for severe health problems, perhaps even death. Most prognosis for autism is that there is a normal life span. However, this doesn't consider the other ailments that are commonly comorbid with autism such as seizures and genetic problems. A child who cannot communicate about how they feel are likely not to receive the treatment they need for other medical conditions.
I hope the Travolta family can come to terms with all the terrible public scrutiny they are facing. I with them peace as they are lingering in the darkest trenches a parent can be in.
Wednesday, September 16, 2009
Jean Valjean
Second time is the charm. The sore tooth appears to have finally taken the hint and gave me some peace. About time. It all started in October 2008 - almost one year and I can finally eat on the left side of my face.
OK - so does anyone else think it's great that the President called Kanye West a "jackass".
Zach had another "he's happy" day at school. Happy is OK. I would like to see him progressing. I know that he has only been there since last Wednesday - but I really would like to see them placing some demands on him. Compliance is not one of Zach's strong suites. The kid is amazingly cute - blond, blue eyed, smiley, dimples, but when you ask him to do something, all bets are off.
The school requested copies of Zach's current programs and testing. It looks like they are gearing up to start actually getting down to business. This will hopefully be start of some nice skills.
So far, though, so good. He seems to be transitioning well, in fact , when Steve dropped him off at school today, he didn't cry. We are mimicking all the meals that are served at the preschool with GFCF items. That is keeping Steven very busy. I am hoping he may expand his repetoire further by seeing other children eat these things - but I can't complain about his current level of variety.
Zach has also taken a particular interest in some flash cards Babcia Morphet purchased with numbers and Thomas the Tank Engine characters on them. Thomas is very reinforcing to Zach right now. I am hoping we can see if we can conquer his numbers within the next month using these cards.
Sophia has made a friend on the bus. Her name is Heather. And from what Sophia has told me, she is fat. Uhhh... How did I handle this one? Well, first off, Sophia told me she wanted to be fat like Heather. Uhhh, no. I told her that being fat is unhealthy, so we don't want that. Then I told her that she shouldn't tell Heather that she thinks she's fat, because it likely would hurt her feelings. Sophia's response? "Momma, she probably already knows!" Yup. Sophia is so incredible this way - she sees being fat, as she does being black, as she does being tall, as she does having red hair. They are attributes that are interesting, but how could they be hurtful? She is such a great kid.
After reading a recent Newsweek article on baby's and racism, I was interested in seeing how Sophia responded to some questions about skin color. Sophia makes me so happy - she is the nondiscriminating person I wish I was. When on a recent trip to North Carolina, she went up to a guy in a wheelchair and and started talking to him about his dog (also who had a wheelchair.) She also went up to a bunch a Mexican immigrant workers after acquiring a new toy and asked them if they wanted to see what was behind her back - she had her new toy hidden there. That same trip she approached two young black children and asked if she could play with them. They were taken back at first, but when she had to leave, the one little boy gave her some play money they had been playing with as a gift and flashed a smile and waved goodbye. If ever I were to have any pride in my child, these would have to be the moments I will always remember. No judgment, opening herself up to those who are different without even a second thought. Nothing will ever make me more proud than seeing my daughter do what she does best - reach out to people. I can't wait to see where that will take her in life; I am sure she will get hurt by it sooner or later, but I truly think she has a gift that way.
So I asked Sophia if she thought that people with white skin were nice, and she said "yeah". I asked her "do you think people with black skin are nice?" Her response: " I only really know one person with black skin, and that is Megan, and yeah, she is very nice!." It'll be interesting to monitor this now that she is in school.
I had to fill out paperwork while at the dentist's office today - it asked me my profession. Whoa. Couldn't believe how much it made me trip. After deliberation, I wrote in SAHM. I feel like some people will likely have lower expectations of me when they see this. I guess I was sort of proud of my profession? Weird. I am no longer an electrical engineer. I spent several years of my life educating myself for this, many more years working in this, and now it is just something in my past, like an old boyfriend or pair of sneaks.
I feel so selfish for feeling lost without this identity. It seemed to command some amount of respect or purpose I suppose. But it never has been who I am.
I look at the cirriculumn up at SU in law and special ed, and I think that is what I want. But I can barely get the hosue picked up- how would I ever pursue this?
I guess I just want to be somebody else, not some has been. I have to figure out who I am. For now, I am 24601.
OK - so does anyone else think it's great that the President called Kanye West a "jackass".
Zach had another "he's happy" day at school. Happy is OK. I would like to see him progressing. I know that he has only been there since last Wednesday - but I really would like to see them placing some demands on him. Compliance is not one of Zach's strong suites. The kid is amazingly cute - blond, blue eyed, smiley, dimples, but when you ask him to do something, all bets are off.
The school requested copies of Zach's current programs and testing. It looks like they are gearing up to start actually getting down to business. This will hopefully be start of some nice skills.
So far, though, so good. He seems to be transitioning well, in fact , when Steve dropped him off at school today, he didn't cry. We are mimicking all the meals that are served at the preschool with GFCF items. That is keeping Steven very busy. I am hoping he may expand his repetoire further by seeing other children eat these things - but I can't complain about his current level of variety.
Zach has also taken a particular interest in some flash cards Babcia Morphet purchased with numbers and Thomas the Tank Engine characters on them. Thomas is very reinforcing to Zach right now. I am hoping we can see if we can conquer his numbers within the next month using these cards.
Sophia has made a friend on the bus. Her name is Heather. And from what Sophia has told me, she is fat. Uhhh... How did I handle this one? Well, first off, Sophia told me she wanted to be fat like Heather. Uhhh, no. I told her that being fat is unhealthy, so we don't want that. Then I told her that she shouldn't tell Heather that she thinks she's fat, because it likely would hurt her feelings. Sophia's response? "Momma, she probably already knows!" Yup. Sophia is so incredible this way - she sees being fat, as she does being black, as she does being tall, as she does having red hair. They are attributes that are interesting, but how could they be hurtful? She is such a great kid.
After reading a recent Newsweek article on baby's and racism, I was interested in seeing how Sophia responded to some questions about skin color. Sophia makes me so happy - she is the nondiscriminating person I wish I was. When on a recent trip to North Carolina, she went up to a guy in a wheelchair and and started talking to him about his dog (also who had a wheelchair.) She also went up to a bunch a Mexican immigrant workers after acquiring a new toy and asked them if they wanted to see what was behind her back - she had her new toy hidden there. That same trip she approached two young black children and asked if she could play with them. They were taken back at first, but when she had to leave, the one little boy gave her some play money they had been playing with as a gift and flashed a smile and waved goodbye. If ever I were to have any pride in my child, these would have to be the moments I will always remember. No judgment, opening herself up to those who are different without even a second thought. Nothing will ever make me more proud than seeing my daughter do what she does best - reach out to people. I can't wait to see where that will take her in life; I am sure she will get hurt by it sooner or later, but I truly think she has a gift that way.
So I asked Sophia if she thought that people with white skin were nice, and she said "yeah". I asked her "do you think people with black skin are nice?" Her response: " I only really know one person with black skin, and that is Megan, and yeah, she is very nice!." It'll be interesting to monitor this now that she is in school.
I had to fill out paperwork while at the dentist's office today - it asked me my profession. Whoa. Couldn't believe how much it made me trip. After deliberation, I wrote in SAHM. I feel like some people will likely have lower expectations of me when they see this. I guess I was sort of proud of my profession? Weird. I am no longer an electrical engineer. I spent several years of my life educating myself for this, many more years working in this, and now it is just something in my past, like an old boyfriend or pair of sneaks.
I feel so selfish for feeling lost without this identity. It seemed to command some amount of respect or purpose I suppose. But it never has been who I am.
I look at the cirriculumn up at SU in law and special ed, and I think that is what I want. But I can barely get the hosue picked up- how would I ever pursue this?
I guess I just want to be somebody else, not some has been. I have to figure out who I am. For now, I am 24601.
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