After two days of him balking at his sleep medication, I finally got Jimmy to take it. He is fast asleep... which is good because I am sick and need the rest now too. Now if I can get Jacob off...
I finally got ahold of someone at the CSB. Jimmy's psych eval is going to likely cost about $500, an evaluation that needs to be completed before we get him on the DD Waivers list. I am going to apply for a community grant for the funds. It's absurd that it costs money to get on a list from which it will take years to see any services or results. I feel like life is about jumping through hoops and it always will be.
Monday, November 05, 2007
Sunday, November 04, 2007
Up All Night
The local police have had a helicopter hovering over our neighborhood for the past hour. Why does this stuff go down at night, never in broad daylight. Oh, and we have morning session tomorrow.
Ugh.
Ugh.
Saturday, November 03, 2007
Interesting Statistics
"Department of Education statistics indicate that the number of students with autism rose steadily, from about 42,500 in 1997 to nearly 225,000 in 2006. Meanwhile, the number of students counted as mentally retarded declined from about 603,000 to about 523,000.
CDC scientists believe education numbers are misleading, because they reflect only how kids are categorized for services. They say there's no clear evidence doctors are substituting one diagnosis for the other.
Some parents believe environmental factors — ranging from a preservative in vaccines to contaminants in food or water — may be important contributors. (The last doses of early childhood vaccines containing the preservative thimerosal expired in 2002, although some children's flu shots still contain it.)
Dr. Gary Goldstein, scientific adviser to the national advocacy group Autism Speaks, said the explanation for the rising autism prevalence is probably complex. Labeling and diagnosing probably play a role, as do genetics, but he believes the increase surpasses those two explanations.
"I'm seeing more children with autism than I ever would have expected to see," said Goldstein, who is chief executive of the Kennedy Krieger Institute, a treatment center for pediatric developmental disabilities in Baltimore.
Autism Speaks budgets more than $4 million each year to research the causes of autism, and about 90% of that has gone to genetics research. But organization officials recently have been talking about changing that mix, and spending as much as 50% of that money on potential environmental triggers, Goldstein said."
CDC scientists believe education numbers are misleading, because they reflect only how kids are categorized for services. They say there's no clear evidence doctors are substituting one diagnosis for the other.
Some parents believe environmental factors — ranging from a preservative in vaccines to contaminants in food or water — may be important contributors. (The last doses of early childhood vaccines containing the preservative thimerosal expired in 2002, although some children's flu shots still contain it.)
Dr. Gary Goldstein, scientific adviser to the national advocacy group Autism Speaks, said the explanation for the rising autism prevalence is probably complex. Labeling and diagnosing probably play a role, as do genetics, but he believes the increase surpasses those two explanations.
"I'm seeing more children with autism than I ever would have expected to see," said Goldstein, who is chief executive of the Kennedy Krieger Institute, a treatment center for pediatric developmental disabilities in Baltimore.
Autism Speaks budgets more than $4 million each year to research the causes of autism, and about 90% of that has gone to genetics research. But organization officials recently have been talking about changing that mix, and spending as much as 50% of that money on potential environmental triggers, Goldstein said."
Sorry to leave you hanging...
Let's see... the boys went trick or treating on Wednesday. It was a mixed success - we went across town to stop at my assistant's house and then back to our own neighborhood. Jimmy did well for two house and then was brought home after melting down at some of the decorations. Jacob brought back a ton of candy in less than an hour. Thursday we had session and did our outing at Chick-fil-a, where we pissed off some guy when Jimmy dived over the back of the booth to get to his kids fries. He was really terse at first (which intellectually I understand) and seemed to calm down as I explained that he was autistic. It sort of set me off for a while, though - it is difficult to explain it all the time. I wanted to scream at him that he should be grateful that his kids were healthy and normal. I didn't, of course, but it wears on you.
Last night was respite at McLean Bible Church - I really needed it.
Last night was respite at McLean Bible Church - I really needed it.
Tuesday, October 30, 2007
How to keep Jimmy from wandering the house...
Put on Sesame Street... as much as he loves Sesame Place, he is extremely adverse to the show. Runs out of the room every time.
Sunday, October 28, 2007
Birthday Party photos...
T took some amazing photos... I am going to have to hit her up for more. I think she has found another talent!
Saturday, October 27, 2007
Most Expensive Birthday Ever
Well, it stopped raining this morning. We were able to hold the party at the pumpkin patch after all, where much fun was had by young and old alike. There were three moonbounces and two inflatable slides. We bumped into Jimmy's teacher, whom he readily greeted with a hello. I didn't get any pics, but my in-laws and T all got photos, so I should have some shortly.
Jacob got quite the haul in presents. He got the Optimus Prime foam launcher toy, which he has coveted for awhile. He went behind the TV to retrieve a missing dart and PUSHED THE TV OVER. Killed it. I had to go to Walmart to get a new one. An extra $300 I didn't expect to spend this weekend. He is seriously on my poo list.
Oh, and we left the car door open as we were unloading it. The chief of police knocked on our door to let us know. He had the mayor in the car with him, out for a Saturday night patrol. They got a good laugh at my day. Just another quiet evening in Manassas Park.
Jacob got quite the haul in presents. He got the Optimus Prime foam launcher toy, which he has coveted for awhile. He went behind the TV to retrieve a missing dart and PUSHED THE TV OVER. Killed it. I had to go to Walmart to get a new one. An extra $300 I didn't expect to spend this weekend. He is seriously on my poo list.
Oh, and we left the car door open as we were unloading it. The chief of police knocked on our door to let us know. He had the mayor in the car with him, out for a Saturday night patrol. They got a good laugh at my day. Just another quiet evening in Manassas Park.
Friday, October 26, 2007
Another Rained-Out Birthday
We have had a pumpkin patch birthday planned for Jacob for a month now. It's a part of a nursery, but has four moon bounces. Seems perfect for the kids. We've been in a drought, so it has been weeks since it rained. Until the past two days - and through tomorrow now as well. I have a plan B in place - Chick-fil-a, which has a small play place. But both Jacob and I are kind of bumming. But T is bringing her kids over and I have two good friends from working bringing friends for Jacob as well.
This is the second outdoor birthday I have planned. Both have been this year. Both have been dampened by the rain. Never again.
This is the second outdoor birthday I have planned. Both have been this year. Both have been dampened by the rain. Never again.
Wednesday, October 24, 2007
Little Boy Lost
Or maybe Mom is just overtired. The consult that was approved at FAPT six weeks ago has yet to be completed. It is harder and harder to measure his progress as he makes strides in some areas and slips around in others. The school didn't even do a proper report card for him - because they are doing nothing academic with him. Again, I have no sense of what he does with his day. There is no data collected for him at school, so I have nothing tangible with which to assess his progress. I feel like the wheels are spinning and time is slipping away.
I guess the bright spot is for the second day in a row, he was asleep by 8pm. Of course, Jacob didn't let me finally go to sleep until almost 11. Hopefully, I will get to sleep a little earlier tonight.
Tuesday, October 23, 2007
My day...
I went to Starbucks, only to have it take so long that I was forced to leave without my paid for coffee. Fortunately, my neighborhood store was nice enough to give me a free one this afternoon. I am home alone tonight, but I am going to medicate Jimmy at 7. Both the boys as well as myself need the sleep...
It's 3:30 am...
And I have been up for two hours. Jimmy is up pacing his room with some insane vocal stims. It's nuts. I dealt with it for an hour and then tried to fall back asleep with Jimmy safely in his room. Didn't happen. So I am up... And it is bookfair week, so I can't call out tomorrow. Ugh.
I did see the middle part of "Transformers" - it's a pretty good movie. No wonder the boys are so into it.
I did see the middle part of "Transformers" - it's a pretty good movie. No wonder the boys are so into it.
Monday, October 22, 2007
Poop Patrol
I have to listen for every trip to the bathroom now. How does a kid who was doing so well come to be one who can't help but to play in his own poo? It is making me crazy.
Friday, October 19, 2007
A Kick in the Teeth
So, I have been looking for a DAN doctor. Most aren't accepting new patients. I found one that I heard that wasn't. One that was listed as taking my insurance. She isn't taking new patients either. For some reason, I took this news really hard, harder than intellectually I know I should.
Her office gave me a reference to a doctor in Lynchburg - three hours each way. She was listed as accepting insurance on my company's website, but her website said that they are no longer taking insurance. Doctor's visits are $350. You have two of them in the first month. How depressing is that?
Why won't conventional doctor's look into this whole yeast thing? Why can't DAN doctors take insurance? Can someone please explain it to me?
Her office gave me a reference to a doctor in Lynchburg - three hours each way. She was listed as accepting insurance on my company's website, but her website said that they are no longer taking insurance. Doctor's visits are $350. You have two of them in the first month. How depressing is that?
Why won't conventional doctor's look into this whole yeast thing? Why can't DAN doctors take insurance? Can someone please explain it to me?
Wednesday, October 17, 2007
For my sister Becky...
...who will likely file this under "You never shut up!"
Do your duty: come out and vote on Nov. 6
LETTER TO THE EDITOR
Potomac News
Tuesday, October 16, 2007
With the upcoming elections for state office rapidly approaching, I am saddened when I think the vast majority of registered voters will not even take the time to go to the polls. There are those who feel like a single vote won't make a difference or feel that the issues that the candidates are discussing are not relevant to their lives. If that's the case, it is a voter's responsibility to dig deeper.
For a voter like myself -- whose greatest passion and issue is the one that touches my life the most: autism -- getting the answers that are important to me requires more than just reading what arrives in my mailbox. Fortunately, I have found Jeanette Rishell, Delegate Jackson Miller, Bob Fitzsimmonds and State Senator Chuck Colgan more than willing to return a call and talk to me about what is most important to my vote -- the range of needs of autistic children and adults and how to best meet them in the public and private sectors.
All have been gracious, engaged, and attentive. Not one has offered miracles, but they have listened and promised to continue to do just that if elected.
As frustrating as politics can be at times, the right to vote is a gift that many in the world never get. I would encourage people to ask questions of these candidates, think about what is important to you, and vote. Democracy was never meant to be a spectator sport -- please be an active participant on Tuesday, Nov. 6.
Do your duty: come out and vote on Nov. 6
LETTER TO THE EDITOR
Potomac News
Tuesday, October 16, 2007
With the upcoming elections for state office rapidly approaching, I am saddened when I think the vast majority of registered voters will not even take the time to go to the polls. There are those who feel like a single vote won't make a difference or feel that the issues that the candidates are discussing are not relevant to their lives. If that's the case, it is a voter's responsibility to dig deeper.
For a voter like myself -- whose greatest passion and issue is the one that touches my life the most: autism -- getting the answers that are important to me requires more than just reading what arrives in my mailbox. Fortunately, I have found Jeanette Rishell, Delegate Jackson Miller, Bob Fitzsimmonds and State Senator Chuck Colgan more than willing to return a call and talk to me about what is most important to my vote -- the range of needs of autistic children and adults and how to best meet them in the public and private sectors.
All have been gracious, engaged, and attentive. Not one has offered miracles, but they have listened and promised to continue to do just that if elected.
As frustrating as politics can be at times, the right to vote is a gift that many in the world never get. I would encourage people to ask questions of these candidates, think about what is important to you, and vote. Democracy was never meant to be a spectator sport -- please be an active participant on Tuesday, Nov. 6.
Tuesday, October 16, 2007
Celebrating Post 501...
I just looked at my Blogger Dashboard and it said I had 500 posts. I am kind of amazed that I have stuck with it this long.
Today, as is everyday, was one of highs and lows, dealing with the school and therapists, a career and two boys. Jimmy said "Goodbye Taylor" to a girl who ran up and told me that she was Jimmy's friend. Everytime that sort of stuff, I sort of mist up, usually with joy, but today it was a mix of grief. Jimmy is never invited to school birthday parties. Of course, we get invited to T's parties and some of my other friends with kids, but never any from school. There is a whole life of being a normal child that he will never, ever have. That I will never, ever share with him. It is painful in a way I can't even articulate because I love him so much and wanted so much for him. I still do, but is diminished in some respect by where he is today. He's in the tub right now because he climbed in the kitchen sink and pooped, still in his dress shirt from school photos. The school photos the school secretary forgot to give Jimmy's teacher for the class of four. At Cougar, he is well known, but is seemingly invisible in so many ways. There was the bus saga. The PTO snub last year, as well as the art show. And for the second year in a row, they forgot to give his class the picture form. How is that shit not supposed to hurt? (I know a few important people read this blog and I shouldn't swear, but you would swear too!) It is a pain that isolates you in this shared experience that people of a certain age have in raising a family.
But I am proud of him. Taylor hugged him when he said goodbye. I think it was the first time that she heard his voice. The elation of the small victories saves you from the pain. Victory and my love for him saves me every day.
Today, as is everyday, was one of highs and lows, dealing with the school and therapists, a career and two boys. Jimmy said "Goodbye Taylor" to a girl who ran up and told me that she was Jimmy's friend. Everytime that sort of stuff, I sort of mist up, usually with joy, but today it was a mix of grief. Jimmy is never invited to school birthday parties. Of course, we get invited to T's parties and some of my other friends with kids, but never any from school. There is a whole life of being a normal child that he will never, ever have. That I will never, ever share with him. It is painful in a way I can't even articulate because I love him so much and wanted so much for him. I still do, but is diminished in some respect by where he is today. He's in the tub right now because he climbed in the kitchen sink and pooped, still in his dress shirt from school photos. The school photos the school secretary forgot to give Jimmy's teacher for the class of four. At Cougar, he is well known, but is seemingly invisible in so many ways. There was the bus saga. The PTO snub last year, as well as the art show. And for the second year in a row, they forgot to give his class the picture form. How is that shit not supposed to hurt? (I know a few important people read this blog and I shouldn't swear, but you would swear too!) It is a pain that isolates you in this shared experience that people of a certain age have in raising a family.
But I am proud of him. Taylor hugged him when he said goodbye. I think it was the first time that she heard his voice. The elation of the small victories saves you from the pain. Victory and my love for him saves me every day.
Monday, October 15, 2007
Colin Farrell interview
His son suffers from a rare form of CP - he gave this really touching interview to a British media outlet.
Combating Autism Act Appropriations
For those interested in the appropriations part of the Combating Autism Act. I hope these appropriations will be supported as they have the potential to benefit kids like my son.
October 1X, 2007
Dear Chairman Obey and Ranking Member Walsh:
On behalf of the estimated 1.77 million American families affected by autism spectrum disorders (ASD, hereafter referred to as autism), we thank you for your leadership in including $16.5 million at the CDC for autism activities in H.R. 3043, the 2008 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill, and respectfully request that you provide at least the House level for autism activities at the CDC and support at least the Senate level of $37 million in HRSA, for autism activities in the Conference Report on the Fiscal 2008 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill. In addition, we respectfully request that the House conferees agree to the Senate level of $1 million within the Office of the Secretary of Health and Human Services for administration of the Inter-Agency Autism Coordinating Committee.
As you may know, it is estimated that 1 in 150 children in this country has autism or another Autism Spectrum Disorder (ASD), making it more common than pediatric cancer, diabetes, and AIDS combined. The condition has truly become an epidemic, yet federal funding for autism research is less than that for much less prevalent diseases.
Last year, Congress very appropriately responded to this crisis by enacting the Combating Autism Act (CAA). For Fiscal 2008, the CAA authorizes a total of $168 million for a variety of critical autism activities, including: (1) $16.5 million for the CDC to conduct its Developmental Disabilities Surveillance and Research program; (2) $37 million for the Secretary of Health and Human Services to carry out autism education, early detection, and Intervention programs; and (3) $114.5 million for the HHS Secretary and the NIH to form and operate an Interagency Autism Coordinating Committee, implement the expansion, intensification and coordination of research on ASD, and fund and review autism centers of excellence.
Both the House and Senate passed these authorizations, the House by voice vote and the Senate by Unanimous Consent. Again, we thank you for your support in the House-passed Labor, Health and Human Services Bill, H.R 3043.
We thank you for considering this most important request. If you have any questions or would like additional information, please contact Kenneth DeGraff in the office of Rep. Doyle at (5-2135), Tim Lynagh in the office of Rep. Chris Smith (5-3765), or Peter Kay in the office of Rep. Carolyn McCarthy (5-5516).
Sincerely,
Mike Doyle
Christopher H. Smith
Carolyn McCarthy
October 1X, 2007
Dear Chairman Obey and Ranking Member Walsh:
On behalf of the estimated 1.77 million American families affected by autism spectrum disorders (ASD, hereafter referred to as autism), we thank you for your leadership in including $16.5 million at the CDC for autism activities in H.R. 3043, the 2008 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill, and respectfully request that you provide at least the House level for autism activities at the CDC and support at least the Senate level of $37 million in HRSA, for autism activities in the Conference Report on the Fiscal 2008 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill. In addition, we respectfully request that the House conferees agree to the Senate level of $1 million within the Office of the Secretary of Health and Human Services for administration of the Inter-Agency Autism Coordinating Committee.
As you may know, it is estimated that 1 in 150 children in this country has autism or another Autism Spectrum Disorder (ASD), making it more common than pediatric cancer, diabetes, and AIDS combined. The condition has truly become an epidemic, yet federal funding for autism research is less than that for much less prevalent diseases.
Last year, Congress very appropriately responded to this crisis by enacting the Combating Autism Act (CAA). For Fiscal 2008, the CAA authorizes a total of $168 million for a variety of critical autism activities, including: (1) $16.5 million for the CDC to conduct its Developmental Disabilities Surveillance and Research program; (2) $37 million for the Secretary of Health and Human Services to carry out autism education, early detection, and Intervention programs; and (3) $114.5 million for the HHS Secretary and the NIH to form and operate an Interagency Autism Coordinating Committee, implement the expansion, intensification and coordination of research on ASD, and fund and review autism centers of excellence.
Both the House and Senate passed these authorizations, the House by voice vote and the Senate by Unanimous Consent. Again, we thank you for your support in the House-passed Labor, Health and Human Services Bill, H.R 3043.
We thank you for considering this most important request. If you have any questions or would like additional information, please contact Kenneth DeGraff in the office of Rep. Doyle at (5-2135), Tim Lynagh in the office of Rep. Chris Smith (5-3765), or Peter Kay in the office of Rep. Carolyn McCarthy (5-5516).
Sincerely,
Mike Doyle
Christopher H. Smith
Carolyn McCarthy
Sunday, October 14, 2007
Fall Festival Photos
Yesterday was an anticipated October event for us... the Manassas Park Fall Festival and Fire Station Open House. We go every year. It was Jimmy's first time on one of those inflatable slides. It was smaller than the ones he has seen before, but he did it. I hope he will make it down the shark slide at his brother's birthday. Jacob didn't want his photo taken, so he turned around mid-slide. The last photo was of Jacob learning how to use the fire hose. Once the fire chief taught him, we couldn't drag him away. He tried to nail me with it - fortunately, I moved quickly.
Saturday, October 13, 2007
Another visit from the Ear Infection Fairy
He is back on antibiotics. I am kicking myself, because I know they are part of what's wrong with him. I feel like a hamster on a wheel. He has been fighting us tooth and nail this time on the medication. We were losing the battle last night - until Dad got him to suck down the medication... as he slept. Whatever works.
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