The autism walk at the zoo was a big success. Our fine motor station was a big hit thanks to the efforts of Jackie and Steve. We had play doh and tools, fruit loops and yarn to make necklaces, pull tubes and fuzzy balls and lentils for sensory stimulation. I was really excited by the constant stream of kids. I am learning so much from volunteering. I am also learning that I think I might need to lie low on the volunteer work for a bit and stick to the letter writing campaign (if you haven't contacted your NY state legislators please do so now - by visiting here.....) and a project proposal for a workshop for local pediatricians for early diagnosis.
Zach is saying and signing a few words regularly: no (says), candy (signs), hello (says) and bye (says) amongst a few words reported by the therapists that I haven't heard such as movie. However, we don't think he is quite getting the purpose of language because he is using words to request things that don't make sense. For instance, this morning he wanted a bottle (don't ask me how I know, I just know! Mommy-sense) and he gave me the sign for candy. I said: "do you want milk" while doing the sign for milk, and he shook his head while saying "no" and then pointed "up" while getting frustrated. He then reached for his sippy cup of milk on the counter. I tried to make him say milk, but alas I only got a point and a growl. It was as if he tried every trick in his book - he just didn't know which one was appropriate. The therapists believe he is overgeneralizing his limited words, and claim it is common. He still hasn't had that "ah ha" moment where he gets why the rest of us all talk.
The funny thing is watching him pick up a phone and say "hello" which comes out more like a "ha-whoa". What is going on in that cute little head of his?
Have a field trip to the most on Friday. Can't wait!
Monday, April 27, 2009
Friday, April 24, 2009
What popped out of his mouth today?
"Sit" and "Orange juice" came out today.
"sit" was said right after his father told him to quit standing in his chair and to sit down.
He said "sit" as he sat down.
While running around on what must be one of the most perfect weather days we'll have, he proceeded to climb the rock wall with his bare feet in like 15 seconds in the backyard. He accidentally went down the slide face first, flying off the end of the slide, but shielding his face from anything major. He looked right at me after the surprise and said "OK". ha ha
After sliding and climbing for around 20 minutes, he came up to me and said "orange juice". Steve was there to hear this. It was really cool. Of course it took a bit by the time we got into the house and gave it to him. But it is exciting nonetheless.
Go Zachy go!
"sit" was said right after his father told him to quit standing in his chair and to sit down.
He said "sit" as he sat down.
While running around on what must be one of the most perfect weather days we'll have, he proceeded to climb the rock wall with his bare feet in like 15 seconds in the backyard. He accidentally went down the slide face first, flying off the end of the slide, but shielding his face from anything major. He looked right at me after the surprise and said "OK". ha ha
After sliding and climbing for around 20 minutes, he came up to me and said "orange juice". Steve was there to hear this. It was really cool. Of course it took a bit by the time we got into the house and gave it to him. But it is exciting nonetheless.
Go Zachy go!
Thursday, April 23, 2009
What do you say?
I really am looking for input here.... so don't be shy.
What do you say when someone asks you how your kids are when you are in my shoes?
Do they really want to know?
My usual response:
"They're crazy." or "They're keeping me busy."
So, what should I say?
What do you say when someone asks you how your kids are when you are in my shoes?
Do they really want to know?
My usual response:
"They're crazy." or "They're keeping me busy."
So, what should I say?
Wednesday, April 22, 2009
Syracuse Autism Awareness Walk - please join us!
Sunday, April 26, 2009 - 9:30am (registration begins at 8:45am)
"one piece at a time" Autism Awareness WalkWhere: Rosamond Gifford Zoo.
Description: The 4th annual CNY ASA "one piece at a time" Autism Awareness Walk seeks to promote awareness about Autism Spectrum Disorders including Autism, Asperger's Disorder, PDD-NOS, Rett's Disorder and Childhood Disintegrative Disorder throughout Syracuse and its surrounding areas.
"Kohl's Kid's Korner" sponsored by Kohl's Cares for Kids and the Margaret L. Williams Developmental Evaluation Center will feature the KidzClub TumbleBus as well as a Playplace provided by FEAT of CNY.Walk Highlights:
- The KidzClub TumbleBus
- Playplace by FEAT of CNY
- Community art project by SU Art Education
- Local vendors, resources and support
- Free access to Rosamond Gifford Zoo
If you have additional questions, please e-mail us at cnyasa@yahoo.com
Tuesday, April 21, 2009
Quickie
Zach said "car seat" yesterday after I told Sophia to go get into the car on the way to school.
Later that evening he was playing wildly with his sister (which I totally love) and he banged his knee pretty good. He came over to me and put my hand on his knee and pouted. I told him "oh no Zach - boo boo, let me kiss and make better." He sat in my lap for a moment while I kissed his knee and then went on to run around the house with his sister like a bunch of banshees. This was so great - it was so normal and he showed he was hurt. Bizarre that this would make me happy but it is a relief to know that he can express to me hurt and I can comfort him and let him get on with things. This is what a mother needs to be able to do for a child, feel like they can comfort a child who needs it and know when a child needs comfort.
First team meeting with the therapists at our house tomorrow night. Go Zach!
Later that evening he was playing wildly with his sister (which I totally love) and he banged his knee pretty good. He came over to me and put my hand on his knee and pouted. I told him "oh no Zach - boo boo, let me kiss and make better." He sat in my lap for a moment while I kissed his knee and then went on to run around the house with his sister like a bunch of banshees. This was so great - it was so normal and he showed he was hurt. Bizarre that this would make me happy but it is a relief to know that he can express to me hurt and I can comfort him and let him get on with things. This is what a mother needs to be able to do for a child, feel like they can comfort a child who needs it and know when a child needs comfort.
First team meeting with the therapists at our house tomorrow night. Go Zach!
Monday, April 20, 2009
Offline
If you are wondering why I haven't posted as much lately - I have been in my hole.
In a recent post I stated how I am having a real hard time of it right now. A relative who I believe has not read a lot of my blog read this post and my rant about not getting a lot of support, particularly familial, and sent me an email. I read one paragraph into the email and realized that they were upset with me and were about to chew me out. I had a break down in my house that moment. I sat in the corner crying as the two kids ran around the house, Sophia asking me what was wrong. I didn't read the message any further. Apparently, this person truly did not understand the edge I was standing on. Steve was at work, and unreachable. I called this person's house and got their spouse. I basically told the spouse I was losing it and that I didn't think I could handle reading the message.
I have a feeling that this person took my generalized post and concentrated it on their relationship with us. I was complaining about many people, and not just this one. I want everyone out their to realize that - yeah - maybe I was complaining about you, but no one person, or family, were the source of my complaints. I still stand by my post, and my disappointment and hurt. I will go on to say, that perhaps I have concentrated a little too much on my family, because I was raised and always felt that they would be there for me, above anyone else. I had a huge loyalty and sense of pride as to how my family was this way.
I realize now, that I am the one who needs a paradigm shift, not necessarily them. If we cannot seek and find the support we need from them, then we will get it from some of the other loved ones in our lives - terrific friends, old and new. I don't want to demean my family, and certainly they don't get where we are at if they decide that showing support includes making sure we are put in our place. This doesn't make the situation better at all for anyone. I certainly never want to hurt anyone else, and so perhaps it is just best to shrug this off, and agree to disagree on what constitutes support.
I am sorry that these posts are not more about Zach's progress - but it has been limited, and perhaps, our frustration with that has made my posts turn into more rants. I am angry. Not at Zach's condition, as much as those who blundered in regards to his diagnosis, care and treatment. Add that to the other things life is throwing at us.
His EEG as an anomaly on it - his neurologist said it is normal, two other neurologists who read it said that it was suspicious. What does this mean? What do we do?
Our sitter announced on Wednesday that she can only work 1 day (and we suspect will likely leave us soon) - so now I have to find a trustworthy sitter that can deal with two special needs kids and a crazy schedule at our home. It took me several months to find her! Anybody gotta name?
My Mom can barely walk and has been told she needs a hip replacement. However, her health condition doesn't make her a candidate for surgery.
Zach needs to go in for the following tests: Lyme, Fragile X, genetic testing, allergy testing - do you know how many vials of blood they will need to take from him - and I cannot explain to him, because he has no receptive language meaning he has no idea what we are talking about.
We are still figuring out Sophia and what to do for her. We are getting conflicting advice from various people. Her meeting for the school district comes in a few weeks. She will likely continue services because her OT has been really fighting for her.
Remember the autoimmune virus I contracted late last summer? I realized a few days ago - it is still going. Gotta ask the doctor why. Could this be the reason for the mega hair loss? The various rash/skin patches all over my body? How tired I am? The fever I run from time to time?
Layoffs anticipated at work. $50,000 costs anticipated for Zach next year without that insurance reform. Messing up at work makes me a likely candidate, don't you think?
Looking for one more therapist to work with Zach. Send me resumes!
I write what is on my mind at the moment. This is a log of our families experience trying to help Zach, and I will not censor it, may it be offensive or not. If you find you cannot bear to read my words, I kindly ask that you do not read.
In a recent post I stated how I am having a real hard time of it right now. A relative who I believe has not read a lot of my blog read this post and my rant about not getting a lot of support, particularly familial, and sent me an email. I read one paragraph into the email and realized that they were upset with me and were about to chew me out. I had a break down in my house that moment. I sat in the corner crying as the two kids ran around the house, Sophia asking me what was wrong. I didn't read the message any further. Apparently, this person truly did not understand the edge I was standing on. Steve was at work, and unreachable. I called this person's house and got their spouse. I basically told the spouse I was losing it and that I didn't think I could handle reading the message.
I have a feeling that this person took my generalized post and concentrated it on their relationship with us. I was complaining about many people, and not just this one. I want everyone out their to realize that - yeah - maybe I was complaining about you, but no one person, or family, were the source of my complaints. I still stand by my post, and my disappointment and hurt. I will go on to say, that perhaps I have concentrated a little too much on my family, because I was raised and always felt that they would be there for me, above anyone else. I had a huge loyalty and sense of pride as to how my family was this way.
I realize now, that I am the one who needs a paradigm shift, not necessarily them. If we cannot seek and find the support we need from them, then we will get it from some of the other loved ones in our lives - terrific friends, old and new. I don't want to demean my family, and certainly they don't get where we are at if they decide that showing support includes making sure we are put in our place. This doesn't make the situation better at all for anyone. I certainly never want to hurt anyone else, and so perhaps it is just best to shrug this off, and agree to disagree on what constitutes support.
I am sorry that these posts are not more about Zach's progress - but it has been limited, and perhaps, our frustration with that has made my posts turn into more rants. I am angry. Not at Zach's condition, as much as those who blundered in regards to his diagnosis, care and treatment. Add that to the other things life is throwing at us.
His EEG as an anomaly on it - his neurologist said it is normal, two other neurologists who read it said that it was suspicious. What does this mean? What do we do?
Our sitter announced on Wednesday that she can only work 1 day (and we suspect will likely leave us soon) - so now I have to find a trustworthy sitter that can deal with two special needs kids and a crazy schedule at our home. It took me several months to find her! Anybody gotta name?
My Mom can barely walk and has been told she needs a hip replacement. However, her health condition doesn't make her a candidate for surgery.
Zach needs to go in for the following tests: Lyme, Fragile X, genetic testing, allergy testing - do you know how many vials of blood they will need to take from him - and I cannot explain to him, because he has no receptive language meaning he has no idea what we are talking about.
We are still figuring out Sophia and what to do for her. We are getting conflicting advice from various people. Her meeting for the school district comes in a few weeks. She will likely continue services because her OT has been really fighting for her.
Remember the autoimmune virus I contracted late last summer? I realized a few days ago - it is still going. Gotta ask the doctor why. Could this be the reason for the mega hair loss? The various rash/skin patches all over my body? How tired I am? The fever I run from time to time?
Layoffs anticipated at work. $50,000 costs anticipated for Zach next year without that insurance reform. Messing up at work makes me a likely candidate, don't you think?
Looking for one more therapist to work with Zach. Send me resumes!
I write what is on my mind at the moment. This is a log of our families experience trying to help Zach, and I will not censor it, may it be offensive or not. If you find you cannot bear to read my words, I kindly ask that you do not read.
Wednesday, April 15, 2009
Conflicted hope
Many of you know about our persistent fight with the county about procuring an ABA team for Zach. During the whole process, I had it in the back of my mind that this was worth the effort for my child and for others out there who were not receiving this type of therapy. There was a family who requested it after we did, and they were given service quickly. I spoke with the mother at some point, and she stated that we had paved the way for them. I knew she was right, and this brought joy to my heart like you could not imagine.
Her son's progress has been incredible. He is 6 months younger than Zach, and he was totally not verbal. He is now saying many words, and pointing, and interacting. I have a feeling he will likely fall of the diagnosis. I am so happy - but it hurts at the same time. I wanted this to be Zach's story. I get angry knowing that the lazy county workers and financially wary managers wasted 9 months of extremely valuable time in his life that could have made a significant difference. I will not leave this alone.
I am trying to meet with more executive levels of the county government to let them know of our experience. I am in the process of creating an early diagnosis workshop for pediatricians. I am also looking into legislation to make mandatory reporting of therapists for children at high risk for a positive autism diagnosis. We will see where this will all go.
Zach is doing OK. He is saying a few words (not persistent enough for me to call it vocabulary) and doing some signs (cookie, ball, movie, up) and has begun to show progress in imitating behavior. This is very significant.
We are looking to hire 2 more therapists privately since it appears he may be on the verge of a breakthrough. Ka-ching. I am doing lousy at work again - I guess the depression is in a wave of overwhelming me once again. Steve is totally picking up the slack at home, and this just adds to the guilt and feelings of incompetence. I wonder if this is the reason Zach may not be picking up as quickly - I am not providing the appropriate carry through he needs at home because of my own issues. UUGGHHHHHHHH
Many of you might not know this, but autism is treatable. There are known and documented cases where kids "fall off" the diagnosis even - many of them after intensive therapies have been put in place. (Studies by an ABA researcher named Lovaas indicated 50% of those who received intense ABA fell off.) This is NOT A CURE. It is a treatment that is effective and can make some kids indistinguishable from their peers. I feel like we still have a shot at this. We are going for it - no expense will be barred. He will get the chance that others almost blewaway for him. That is, if I can only keep myself from getting fired in tough economic times so we can afford all this. Please pray that I can get my brain back in some capacity or another as I say a prayer of thanks for an awesome husband.
In the spirit of hope I am trying to instill in others, please watch this and do not to let perceived notions get in the way of reality, All Things Possible:
http://www.youtube.com/watch?v=9lp0IWv8QZY
Her son's progress has been incredible. He is 6 months younger than Zach, and he was totally not verbal. He is now saying many words, and pointing, and interacting. I have a feeling he will likely fall of the diagnosis. I am so happy - but it hurts at the same time. I wanted this to be Zach's story. I get angry knowing that the lazy county workers and financially wary managers wasted 9 months of extremely valuable time in his life that could have made a significant difference. I will not leave this alone.
I am trying to meet with more executive levels of the county government to let them know of our experience. I am in the process of creating an early diagnosis workshop for pediatricians. I am also looking into legislation to make mandatory reporting of therapists for children at high risk for a positive autism diagnosis. We will see where this will all go.
Zach is doing OK. He is saying a few words (not persistent enough for me to call it vocabulary) and doing some signs (cookie, ball, movie, up) and has begun to show progress in imitating behavior. This is very significant.
We are looking to hire 2 more therapists privately since it appears he may be on the verge of a breakthrough. Ka-ching. I am doing lousy at work again - I guess the depression is in a wave of overwhelming me once again. Steve is totally picking up the slack at home, and this just adds to the guilt and feelings of incompetence. I wonder if this is the reason Zach may not be picking up as quickly - I am not providing the appropriate carry through he needs at home because of my own issues. UUGGHHHHHHHH
Many of you might not know this, but autism is treatable. There are known and documented cases where kids "fall off" the diagnosis even - many of them after intensive therapies have been put in place. (Studies by an ABA researcher named Lovaas indicated 50% of those who received intense ABA fell off.) This is NOT A CURE. It is a treatment that is effective and can make some kids indistinguishable from their peers. I feel like we still have a shot at this. We are going for it - no expense will be barred. He will get the chance that others almost blewaway for him. That is, if I can only keep myself from getting fired in tough economic times so we can afford all this. Please pray that I can get my brain back in some capacity or another as I say a prayer of thanks for an awesome husband.
In the spirit of hope I am trying to instill in others, please watch this and do not to let perceived notions get in the way of reality, All Things Possible:
http://www.youtube.com/watch?v=9lp0IWv8QZY
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