Our event on March 30th was a success!
My kiddo was a rockstar of his own. He transitioned so well during the
week in Ohio, meeting and seeing lots of unfamiliar people. I was so proud of
how well he did.
It was a true family reunion. A friends reunion. A band reunion.
And we raised almost $5,000 for Autism Speaks.
I was so proud to be a part of the event, and so humbled by all the support.
When the band decided to reunite and make it a fundraiser for Autism, I had a hard time deciding which organization to support. Should we go more local? But with members living in Ohio and Wisconsin, who's local were we talking about? Also, I knew people would want to support, even if they couldn't be there. So online donation opportunities was a must. That is how we decided to support Autism Speaks. They have nationwide support system, and a broad usage for monies raised.
However, I had a true realization. The realization of how polarizing the Autism community can be.
With April being Autism Awareness Acceptance etc Month, I've read a lot of other people kind of poo pooing Autism Speaks and the "Light it Up Blue" campaign.
As parents of children with ASD, yes, we are aware of Autism ever day, of every month, of every year. And I'm sure some breast cancer patients don't want to wear a pink ribbon, or have that color represent them. The month of April can be daunting. But Autism is daunting. Cancer is daunting. Hell, sometimes getting up to go to work is daunting!
What I want to say is, I don't think it is fair for others to be so judgmental of an awareness campaign. It is one step. And all of us are in various parts of our journey. So yes, I agree that Autism education is needed, as is Autism research, and Autism support, and Autism respite, and Autism therapies for so many children in need.... We, as parents, ARE aware. But others really are not. And the only way for these other needs to happen are if others are aware. It is not Autism Pity Month. It is the need that in the future, 1 in 88 ADULTS (today's children) will have struggled in their childhood to be able to have a conversation, to be heard and to be who they are. And those 1 in 88 adults will be looking for work and struggling to navigate their world.
So for now, I support anyone and any organization that is willing to do work for our kids. Whether it be Autism Speaks or a local organization to help kids get iPads or help pay for therapy for those that need it.
I'm aware...aware that our struggles are not ours alone.
Sunday, April 7, 2013
Sunday, March 10, 2013
Marching into IEPs, Benefit Shows and General Play Time!
March has been busy, fun and overwhelming!
Here is a quick update on us.
THE KINDERGARTEN IEP
We had his Kindergarten IEP meeting.
A dozen adults sitting around the table. Half his current school therapists and teacher, the other half his next year therapists and (possible) teacher. Plus Mike and I.
It was like an introduction... THIS IS JONATHAN.
They read his current report of how he is doing. And then we assessed what support we could use for next year.
It went so well.
Everyone seemed genuinely interested in helping him transition to "Big School." We took notes on ways to help him over the summer. We planned on what the first month of school will look like. The teachers asked about current peers that knew him, to see if they were registered for Kindergarten yet and took notes.
It was not a fight. It was a discussion. It laid the ground work for our team for next year.
And I have hope and less anxiety about it. At least for now.
BENEFIT SHOW
Jonathan and I leave for Cleveland in a few weeks for the big benefit show .
And it has not only become a band reunion, but a FAMILY reunion.
My brother is coming from Nebraska.
My Aunt and cousins are coming from California.
My cousins are coming from Maryland.
Close friends are coming from Columbus, Wisconsin and Massachusetts.
There has been an unbelievable amount of support and excitement about this show. And I am just floored, touched and a little overwhelmed.
So I'm prepping now for the trip, even though it is a few weeks away. I made my packing list, schedule the car to be checked, and am outlining Jonathan's book.
Cleveland or Bust! I can't wait!!!
GENERAL PLAY TIME
So my buddy has been playing really well recently. He is interested in Candyland (even though he cheats), Chutes and Ladders and Uno. At school, we got a picture sent by the teacher of him building a car ramp with a friend. And it was reported that they played together like that for 20 minutes. I guess Jonathan had a hard time initiating the play, but the peer asked him, "Do you want to play with me?" To which Jonathan replied, "Yes!"
Amazing.
Jonathan has also been going to a social skills class once a week with other kids on the Spectrum. He has been pretty quiet the previous few weeks, but this last week he was calling the other kids by their first name and saying the scripted sentences that he leaned, "I had a fun time with you playing ball!"
Amazing.
He continues to communicate with Mike and I more and more about what he is thinking. Even if it comes out as small, three word sentences.
"No wash hair."
"I go too?"
"It's Friday! Last day of school!" - yes... my five year old has discovered the wonders of the weekend.
And he has been reading, reading, reading!
My boy. He amazes me!
Here is a quick update on us.
THE KINDERGARTEN IEP
We had his Kindergarten IEP meeting.
A dozen adults sitting around the table. Half his current school therapists and teacher, the other half his next year therapists and (possible) teacher. Plus Mike and I.
It was like an introduction... THIS IS JONATHAN.
They read his current report of how he is doing. And then we assessed what support we could use for next year.
It went so well.
Everyone seemed genuinely interested in helping him transition to "Big School." We took notes on ways to help him over the summer. We planned on what the first month of school will look like. The teachers asked about current peers that knew him, to see if they were registered for Kindergarten yet and took notes.
It was not a fight. It was a discussion. It laid the ground work for our team for next year.
And I have hope and less anxiety about it. At least for now.
BENEFIT SHOW
Jonathan and I leave for Cleveland in a few weeks for the big benefit show .
And it has not only become a band reunion, but a FAMILY reunion.
My brother is coming from Nebraska.
My Aunt and cousins are coming from California.
My cousins are coming from Maryland.
Close friends are coming from Columbus, Wisconsin and Massachusetts.
There has been an unbelievable amount of support and excitement about this show. And I am just floored, touched and a little overwhelmed.
So I'm prepping now for the trip, even though it is a few weeks away. I made my packing list, schedule the car to be checked, and am outlining Jonathan's book.
Cleveland or Bust! I can't wait!!!
 |
| My Boys help me practice. Farley Family Jam! |
GENERAL PLAY TIME
So my buddy has been playing really well recently. He is interested in Candyland (even though he cheats), Chutes and Ladders and Uno. At school, we got a picture sent by the teacher of him building a car ramp with a friend. And it was reported that they played together like that for 20 minutes. I guess Jonathan had a hard time initiating the play, but the peer asked him, "Do you want to play with me?" To which Jonathan replied, "Yes!"
Amazing.
Jonathan has also been going to a social skills class once a week with other kids on the Spectrum. He has been pretty quiet the previous few weeks, but this last week he was calling the other kids by their first name and saying the scripted sentences that he leaned, "I had a fun time with you playing ball!"
Amazing.
He continues to communicate with Mike and I more and more about what he is thinking. Even if it comes out as small, three word sentences.
"No wash hair."
"I go too?"
"It's Friday! Last day of school!" - yes... my five year old has discovered the wonders of the weekend.
And he has been reading, reading, reading!
My boy. He amazes me!
Sunday, February 17, 2013
Reunting and it Feels So Good!
Once upon a time...ok, more like 12 years ago, I was a singer in a rock and roll band.
Ahh my twenties! Weekends of gigging. Performing the 10pm to 2am shift at local bars with my best friends. Of course back then I was always tired, often grumpy, and really had no clue how wonderful that time was.
Fast forward to today. Being a working Mommy for a special needs kid, working hard at being a good wife, and still trying to maintain a self-identity...I am more exhausted now then back then. Biggest difference: I know and appreciate how wonderful it all is.
So when the idea of having a band reunion came up, I thought, why not?!
One of the other band members has a son who is also on the Spectrum. And because this show would be more about fun and reuniting, the idea of turning it into a fundraiser seemed to make the most sense.
Now, I have not performed AT ALL since maybe 2006...pre-Jonathan. So I have some work ahead of me. But have missed singing, more the I really realized. And now, I feel like I'm singing for a reason.
March 30th at the House of Blue in Cleveland, OH. A fundraiser for Autism Speaks.
Click HERE for our Fundraising page.
I will be singing with my son in my mind and heart. He inspires me so much. It feels amazing to be working towards something so positive and with purpose and passion.
Feel free to donate towards the event, if you are so inclined. The fundraising page is for those that would not be able to make it to the show, or for those that purchase tickets, but want to donate more. All ticket sales will go to Autism Speaks as well.
Life is good.
Ahh my twenties! Weekends of gigging. Performing the 10pm to 2am shift at local bars with my best friends. Of course back then I was always tired, often grumpy, and really had no clue how wonderful that time was.
Fast forward to today. Being a working Mommy for a special needs kid, working hard at being a good wife, and still trying to maintain a self-identity...I am more exhausted now then back then. Biggest difference: I know and appreciate how wonderful it all is.
So when the idea of having a band reunion came up, I thought, why not?!
One of the other band members has a son who is also on the Spectrum. And because this show would be more about fun and reuniting, the idea of turning it into a fundraiser seemed to make the most sense.
Now, I have not performed AT ALL since maybe 2006...pre-Jonathan. So I have some work ahead of me. But have missed singing, more the I really realized. And now, I feel like I'm singing for a reason.
March 30th at the House of Blue in Cleveland, OH. A fundraiser for Autism Speaks.
Click HERE for our Fundraising page.
I will be singing with my son in my mind and heart. He inspires me so much. It feels amazing to be working towards something so positive and with purpose and passion.
Feel free to donate towards the event, if you are so inclined. The fundraising page is for those that would not be able to make it to the show, or for those that purchase tickets, but want to donate more. All ticket sales will go to Autism Speaks as well.
Life is good.
Sunday, January 20, 2013
More Mommy Appreciation
It's been a while since my wife, Jonathan's mom, went on a business trip or girl's weekend. This weekend she is, and she's running a half-marathon in sunny Phoenix, Arizona while Jon Jon and I are curled up in our warm house while the temps hover around 10 degrees with plans to dip below zero in the next few days.
This is also one of those times when I realize just how much Jen does for Jonathan, and how much she does around here. And we both appreciate her more than we can usually say.
It also says a lot that of all the books Jonathan has, the ones he wants read to him at night the most are the social stories about our family, and specifically about times like this to help him understand that Mommy isn't going to be home every day--that life includes business trips and other events that throw routine out the window. And since most kids on the spectrum want structure and are anal retentive about that structure and routine, it's doubly difficult to guide them through the adjustments. Those books are comforting to him and I'm glad Jen takes the time to put them together.
She also quarterbacks a rigorous morning and nighttime routine that requires a several-page manual, right down to the scripted conversation we're supposed to have on the way to school.
I will say it's nice to have some one on one time with Jonathan, and I think the older he gets, the more he appreciates that time together.
So today is a day of appreciation for Mommy, as she is running that half-marathon right now. We are sending vibes of love and good luck, and we also are looking forward to appreciating her in person tomorrow night.
This is also one of those times when I realize just how much Jen does for Jonathan, and how much she does around here. And we both appreciate her more than we can usually say.
It also says a lot that of all the books Jonathan has, the ones he wants read to him at night the most are the social stories about our family, and specifically about times like this to help him understand that Mommy isn't going to be home every day--that life includes business trips and other events that throw routine out the window. And since most kids on the spectrum want structure and are anal retentive about that structure and routine, it's doubly difficult to guide them through the adjustments. Those books are comforting to him and I'm glad Jen takes the time to put them together.
She also quarterbacks a rigorous morning and nighttime routine that requires a several-page manual, right down to the scripted conversation we're supposed to have on the way to school.
I will say it's nice to have some one on one time with Jonathan, and I think the older he gets, the more he appreciates that time together.
So today is a day of appreciation for Mommy, as she is running that half-marathon right now. We are sending vibes of love and good luck, and we also are looking forward to appreciating her in person tomorrow night.
Wednesday, January 2, 2013
Happy 2013!!
My husband writes a newsletter for his business every month. The latest one included a cute story about Jonathan with a thoughtful message attached. I wanted to share. He says...
"Happy New
Year everyone, and welcome to 2013.
Sometimes we learn things from our kids, and sometimes they do things
that inadvertently send us subliminal or not-so-subliminal messages. Recently our five-year-old son, who has
autism, has become obsessed with digital clocks, and in particular with trying
to literally turn back time. The clock may
change from 9:31 to 9:32, and he will say “thirty-one!” and change it back to
9:31. This sometimes will go on for a
while, off and on, and as a result I may walk into our bedroom, and the clock
may tell me it’s 10:15 even though it’s really 11:20.
We all joke
about wanting to turn back time, and on how time flies, blah blah blah. But we also accept that we cannot stop time
from whizzing by. What our son taught me
is that while that may be true, it doesn’t mean we can’t try, or throw a Hail
Mary every once in a while. Breaking the
rules or trying to bend them or somehow trying to alter what we typically accept
as set in stone is usually futile, but may someday be exhilarating if we keep
at it.
Where am I
going with this? My son’s message to me,
though probably not intentional, is that anything is possible—you just have to
try. There is nothing wrong with asking,
“What if?” (and nothing wrong with
having an extremely active imagination, either). That’s also how some of the greatest music
has been created. "
Happy New Year all!!! Looking forward to a year of growth, celebration and being present in the moment.
Sunday, December 23, 2012
Autism Shines
There is nothing like turning a negative into a positive. To embrace a challenge and making it into something empowering.
That is what happens when you put Autism parents' backs against the wall.
There has been some, should we say, negative and uneducated press about Autism and Aspergers in relation to the tragedy at Sandy Hook....a correlation that has no merit, I should add. People were looking for ONE thing to blame...Autism came up as one of those one things (along with many many other things).
So....here comes Autism parent bloggers!
An amazing network of parents started a Facebook site, based off a meme one of the other parents created. It is called Autism Shines. And I have to say, already in a few short days it has become MORE than just a response to negativity.
There are so many kids like my kid. So many varied interests. So many ages, races, level on the spectrum. But we're all there....all swimming in this sea...and for me, I don't feel so alone.
I added my son's picture with a little info about him. And really, it is only just a little info. He is so much more to me.
When you have a moment, check out the site. Throw it a like. And see that Autism can be scary, but also can make the world shine.
That is what happens when you put Autism parents' backs against the wall.
There has been some, should we say, negative and uneducated press about Autism and Aspergers in relation to the tragedy at Sandy Hook....a correlation that has no merit, I should add. People were looking for ONE thing to blame...Autism came up as one of those one things (along with many many other things).
So....here comes Autism parent bloggers!
An amazing network of parents started a Facebook site, based off a meme one of the other parents created. It is called Autism Shines. And I have to say, already in a few short days it has become MORE than just a response to negativity.
There are so many kids like my kid. So many varied interests. So many ages, races, level on the spectrum. But we're all there....all swimming in this sea...and for me, I don't feel so alone.
I added my son's picture with a little info about him. And really, it is only just a little info. He is so much more to me.
When you have a moment, check out the site. Throw it a like. And see that Autism can be scary, but also can make the world shine.
Sunday, December 16, 2012
The Reason for This Latest Hiatus
It has been a while. I know.
The last time I took a hiatus from the blog, our family was in crisis mode. We were dealing and managing and surviving the murky waters of school, therapy, work, back pain, etc sprinkled with dealing with Autism. And I just wasn't it in the mood to lay it all out there.
But this time? This hiatus is due to the other end of the spectrum. We're doing well. We're doing very well. School has been amazing for our buddy....with new and exciting participation from him everyday. Therapy has been going great, and we have an awesome and stable team. Work has been busy for the adults And we're managing the back pain. So again....I just wasn't in the mood to write. I was enjoying myself. We've been living life and cherishing these great moments.
I've realized that we just need to cherish the good moments and survive the challenging ones.
And while I would like to write to catch you up on how things have been going here...a fun Halloween, A great Thanksgiving with a visit from Uncle Joey, looking forward to the Holidays, Jonathan writing his own social stories, his reading and writing, and playing games like Hangman and Hide and Seek.... I just can't.
Like many of you, my heart is broken for Newtown, CT. It has been all I can think about the last few days. Those 20 babies will forever be OUR children. OUR community. OUR teachers. And the reality that this horrific act could happen anywhere.
I read this amazingly written blog post by another Mommy Blogger. It was so well written and hits so close to home for our family...as well as the other families in the Autism / Special Needs community.
Please read this.
http://profmomesq.wordpress.com/2012/12/15/one-truth-about-autism-and-the-sandy-hook-elementary-tragedy/
I also read this blog post as well, and it touched me just as much.
http://thebluereview.org/i-am-adam-lanzas-mother/
All of us have a lot to say. All of us are grieving. All of us want answers.
And all I can do is hug my child.
Which is what I think I'm going to go do right now.
The last time I took a hiatus from the blog, our family was in crisis mode. We were dealing and managing and surviving the murky waters of school, therapy, work, back pain, etc sprinkled with dealing with Autism. And I just wasn't it in the mood to lay it all out there.
But this time? This hiatus is due to the other end of the spectrum. We're doing well. We're doing very well. School has been amazing for our buddy....with new and exciting participation from him everyday. Therapy has been going great, and we have an awesome and stable team. Work has been busy for the adults And we're managing the back pain. So again....I just wasn't in the mood to write. I was enjoying myself. We've been living life and cherishing these great moments.
I've realized that we just need to cherish the good moments and survive the challenging ones.
And while I would like to write to catch you up on how things have been going here...a fun Halloween, A great Thanksgiving with a visit from Uncle Joey, looking forward to the Holidays, Jonathan writing his own social stories, his reading and writing, and playing games like Hangman and Hide and Seek.... I just can't.
Like many of you, my heart is broken for Newtown, CT. It has been all I can think about the last few days. Those 20 babies will forever be OUR children. OUR community. OUR teachers. And the reality that this horrific act could happen anywhere.
I read this amazingly written blog post by another Mommy Blogger. It was so well written and hits so close to home for our family...as well as the other families in the Autism / Special Needs community.
Please read this.
http://profmomesq.wordpress.com/2012/12/15/one-truth-about-autism-and-the-sandy-hook-elementary-tragedy/
I also read this blog post as well, and it touched me just as much.
http://thebluereview.org/i-am-adam-lanzas-mother/
All of us have a lot to say. All of us are grieving. All of us want answers.
And all I can do is hug my child.
Which is what I think I'm going to go do right now.
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