Thursday, May 03, 2007

Music Meets Autism Awareness - Again

It has always been a personal goal to combine my music with raising autism awareness.  Many musicians already have done that in the past, and many more continue to do so.  Red Thread shared this information with me about a band, Five for Fighting, that is doing that very thing right now:

 The band Five for Fighting is generously donating $0.49 to AutismSpeaks for *each time* this video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along to your friends and family. They were aiming for 10,000 hits, but last time I checked the page the counter was over 20,000. So check it out before they shut it down and pass the link to all your friends! As April is Autism awareness month I suspect that the 30th will be the last day the hits are counted (speculation on my part) so check it and pass it quick!

Click here to watch the video or copy and paste this link into your browser.  Please share this with all of your friends and family.

Autism Awareness Month may be over.  As 99.9% of parents of children on the spectrum will tell you, this one month just isn't enough, but in that time, let's do all we can and then spend the other 11months reminding everyone again. 

Monday, April 30, 2007

Motherly Bragging

Hi all...I have a bit of motherly bragging to do about Girl.

Each year, as the final art project of the year, the eigth graders are required to replicate a masterpiece by a famous artist. Girl chose a piece by Salvador Dali, entitled, "Mae West as an Apartment." A few pieces were entered into a contest with other schools throughougt the Chicago and suburban area. I am very proud to say that her painting was awarded 2nd place, with other classmates also placing in the top 6.

Girl's piece, as well as all of the eigth grade class, is eligible to receive the school's masterpiece award. If she wins, the school will keep her masterpiece and hang it in the halls of the school for posterity. She would receive a replica of her masterpiece to keep.

As usual, we are incredibly proud of her.

Thursday, April 26, 2007

I'm Here - AND THERE!

Hi everone! I wanted to let you know I haven't dropped off the face of the earth! Some of you, actually, have managed to find me. I am writing as the parent-of-special-needs-child/working mom representative at Chicago Parent Magazine's online component. You'll know how to find me when you get there, I promise. Life is still as crazy as ever. If you read the post below this one, then you know that even our sacred "7th Day" is no longer ours. We've been busier than bees, running to this, that and the other - usually at the same time. The band is on a roll and is gearing up to complete our CD!!! Stop on by ChicagoParent and say hi! There are many posts in there that I'd love your feedback on. Leaving a comment is as easy as clicking in the upper right corner where it says, "Join," creating a username & password (kind of like here at blogger), and then just leaving a comment (also kind of like here at blogger). I'll keep writing here, worries, just not as often!

Friday, April 13, 2007

When Did Sunday Become Everyone ELSE'S Day?

Sunday Morning I miss Sundays.  Waking to the smell of sausage, bacon, & eggs, going to church with my grandparents...the day was ours, as a family, to do as we pleased.  If we didn't feel like doing the church thing, we'd sleep as late as we wanted.   Sunday was the day for family...large dinners, family parties, dinner with our own little family; as an adult, Sunday was a day for me to have dinner with my mother, relaxing, letting the kids run around, having fun just enjoying the day and spending time together.  If we weren't spending the day with extended family, perhaps we were with friends, perhaps we were doing house work, perhaps we were just lounging on the sofa, or playing in the park with our children.  We don't spend our Sunday's like that any longer.  Sadly, we don't "own" our Sundays anymore.

Once upon a time, there were no infringements on spending family time together on Sundays, unless it was by another family member celebrating - with the family, or if it was by our own choice to spend our Sunday with friends.  We used to be able to schedule our Sundays- or not schedule and be spontaneous; now our schedule is provided for us.

 Girl plays sports for school and is also a member of one of our village's traveling softball teams.  Typically, during the week, there are multiple practices and games, with the weekends reserved for an early morning practice or a late evening game, though some are smack in the middle of the afternoon.  We just got Girl's practice schedule for softball.  She'll practice three weeknights, once on Saturday and TWICE on Sunday...TWICE,not just once.  They were considerate enough to at least not start the first Sunday practice until 12:45 so that we can still go to church (or sleep to recover from the rest of the week).  She will have tournaments almost every week during the summer  - to the point where we had to schedule her graduation party 6 months in advance to avoid conflicting with a tournament...but that goes with the territory of playing on a competitive traveling team.  It's the twice on Sunday that's killing me.

Personally, I think practicing at all on Sunday is wrong, but I also understand that, as a traveling team, they do not have access to a regular practice space and have to take what they can get.  I'm willing to work with that.  My daughter is an athlete, and incredibly intelligent to boot.  I'd like for her to be able to go to college with a little bit of help from a scholarship, so I'm willing to make the sacrifices...but TWICE on Sunday?  12:45 - 2:30, 4:00 - 6:30....Time for the family comes when?  Time for the rest of the family to do anything comes when?  Time to spend time with OTHER family members comes when?  Nope, not during the rest of the week, there is practice then, too.

Rapelling at ScoutsSmallBoy is in Cub Scouts.  We have our big giant pack meetings one Thursday evening a month.  This typically conflicts with SmallBoy's OT, but the Scoutmaster is aware of this and is totally fine with us being a tad late.  Flexibility.  Wonderful!  Our individual outings as a den, though, are typically held every other Sunday afternoon at 2 or 3:00.  Again with the Sunday.  Mind you, SmallBoy loves scouts and our leader is phenomenal, plans amazing activities for our boys (they're learning how to rapell for their next hike), and the boys get a LOT out of each meeting...but SUNDAY

This week, SmallBoy is starting in an instructional basketball league at school for our 4th graders to get them ready for next year when they really play organized basketball.  I'll give you one guess when it is....YEP.  Right on the nose.  Sunday...sometimes at noon, sometimes at 1:30, sometimes at 3:30.  Again, Sunday's the only time they can get the gym for practice, so I understand, but this is getting a little much.

I sound like I'm complaining quite a bit, but when did my family's time get turned over to everyone else without my permission?  I'd like to say,

"No, my child isn't going to be there for practice (or meeting or game) because it's Sunday, and that's the ONE day that we get to spend as a family doing family things,"

but then the coach's response would be,

"Ok fine.  Then Girl/SmallBoy won't get the opportunity to play,"

or the scout leader would say,

"Ok, but then SmallBoy won't be eligible to receive the badge for this particular activity."

My children attend a Catholic school.  Within the last couple of years, they instituted a rule, due to parents' complaints about Sunday practices, that no sports - practice or game - could begin before noon on Sunday, to allow families the chance to at least attend mass together.  The coaches obliged.  Practice starts at noon, with players required to arrive 15minutes prior.  Go figure. 11:46 is late. 

So we're stuck at the mercy of everyone else.  I feel bad because I get so upset by this and, unfortunately, the kids feel it because it is their activity (that I want them involved in) that is causing this massive upheaval.

I won't ever pull Girl from sports, she loves them, she excels at them, and she has scholarship potential.  I won't pull SmallBoy from Scouts or sports. He loves them, he needs both to help him learn the social pieces that are so difficult for those with Asperger's and autism.

I'm calling out to you for advice, for words of wisdom, for lessons learned by it worth it to say something to the coaches, or just suck it up?  Should I keep the kids from doing the things they love because we, as a family, don't have any time together (bear in mind that we rarely eat dinner as a family during the week either)?  Should I petition for a 4-day work week so that we can have ONE DAY, a measley 24-hours without having to do anything with/for anyone else but my family.  Yeah, pipe dreams.  What do YOU have to say? 


Wednesday, March 21, 2007

'Tis the Reason for the Blog

According to the Washington Post Article, posted yesterday, March 20, our "Mommy Time" with our children has increased since the 1960's from 10hrs/wk to 14hrs/wk....That is supposed to somehow ease our mommy guilt. I'm not certain I agree. Read the article and then we'll finish this story.

Mommy Guilt
by Washington Post
For all the rush of modern life, recent research suggests that mothers are actually doing a better job than they may think, at least by historical standards.According to a University of Maryland study, today's mothers spend more hours focused on their children than their own mothers did 40 years ago, often imagined as the golden era of June Cleaver, television's ever-cheerful, cookie-baking mom.In 1965, mothers spent 10.2 hours a week tending primarily to their children -- feeding them, reading with them or playing games, for example -- according to the study's analysis of detailed time diaries kept by thousands of Americans. That number dipped in the 1970s and 1980s, rose in the 1990s and now is higher than ever, at nearly 14.1 hours a week.

This is especially striking because it is at odds with how today's mothers view their own lives: Roughly half of those interviewed said they did not have enough time with their children.

The last sentence says it all. Think about it: 14.1 hours spent with our children in a 7 day time period??? That just doesn't add up to me. I spend tremendous amounts of time with my children - almost all of my waking hours when I'm not at work, and that still doesn't feel like enough. We have sports, scouts, therapies, extra time spent at home on projects, studying with my children, at-home occupational therapy that WE do with our son. All of these things take a heck of a lot more time in the week than 14.1 hours, but I, personally, don't feel like it's cutting it. Hence the title of the blog.

I'm taken aback at the stats from the 60's, though. We thought June Cleaver was the bomb! Donna Reed - I mean, who wouldn't want those mothers? They were always there at the ready, cookies baking, dinner ready, blah blah blah, and some of those images make the feminist in me cringe, but did all of THAT time only amount to 10 hours a week?

I would give almost anything to be able to stay at home with my children. I've said it before, I'm not a working mom by choice, but by necessity. If I was able to stay home, my GOD - I'd be able to spend so much more time with my children - or so it may seem. But really, would I?

All three of my children are in school. LargeBoy is a sophomore and is very independent. When he is home from school or not with his friends, he's usually hanging in his room with his iPod - either playing his guitar or bass, playing video games, or working on his next book idea (I wanted to say "novel," because they truly are "novels"). Girl is in 8th grade and quite the social butterfly. When she's not at school or with her friends, she's either at a sporting event - practicing or participating (in which case I'm there, but not WITH her), at a rehearsal for drama club, at a student council meeting, studying, on the computer, practicing the viola, or planning the next social event. SmallBoy, I will admit, gets a lot more of my time. I do most everything with him, but still, when he's not with me, he's playing video games or drawing - two of his favorite things. Would I really be spending more than 14.1 hours a week with them were I a stay at home mom? I don't know.

I suppose, when you look at the big picture, it does boil down to a few short hours per week. And no, that does nothing to ease my mind and make me feel less Mommy Guilt. I'd love to hear your comments & feedback.

Monday, March 19, 2007

Music Meets Autism Awareness

VH1 Classic Plans to 'Rock Autism'<

VH1 Classic announced on March 13 that it will launch its first-ever pro-social initiative geared towards raising awareness about autism. The "Rock Autism" campaign will kick off with a music star-studded public service announcement, or PSA, on April 1 to mark the start of Autism Awareness Month.

"Autism is such a devastating disorder for so many families, and its rate of prevalence is increasing at an alarming rate," said Tom Calderone, executive vice president and general manager, VH1. "VH1 Classic has dedicated itself to making an impact on autism because many of our viewers are parents who are now dealing with this issue. We've also found over the years that this disorder has touched the lives of m any of the artists and musicians that we work with at VH1 Classic."

"Rock Autism" will use the influence of VH1 Classic and its connections with classic rock artists to make a measurable impact in this field by bringing awareness to the facts about autism, and by raising funds for autism organizations. The first 30-second PSA features a lineup of classic rock legends including Steven Tyler and Joe Perry of Aerosmith, Roger Daltrey of The Who, Robert Plant of Led Zeppelin, Tommy Lee and Vince Neil of Motley Crue, Paul Stanley and Gene Simmons of KISS, Rob Halford of Judas Priest, Ronnie James Dio, and Dee Snider of Twisted Sister.

The campaign will feature both on and off-air components, including public service announcements, VH1 Classic news breaks, and on-air fundraising stunts. The April launch will also include "Pay to Play," a fundraiser where viewers can go online and make a donation in exchange for VH1 Classic playing their favorite classic video. Proceeds from this element will benefit Autism Speaks. VH1 Classic previously used "Pay to Play" as a fundraiser after Hurricane Katrina to raise funds for Mercy Corps, an international humanitarian relief organization. This partnership with Mercy Corps was VH1 Classic's first public affairs effort and successfully raised over $150,000 for hurricane relief.

In addition, a website will be created at where viewers can access information on autism, link to autism organizations, and learn about upcoming fundraising events and auctions in conjunction with the initiative.

Friday, March 16, 2007

Autism Research Survey that YOU can Participate in

II hope that some of you are able to utilize this and help aid in the research. There's a brief bio below on the woman who is doing the study and compiling the data. I promise I'll get back to posting more once this New Country Starcontest with the band is over (which reminds me, click HERE to vote!)

Informal Survey on Therapeutic Approaches in Use By Individuals with Autism Spectrum Disorders
Launched March 15, 2007
Please Respond by April 15, 2007

Three Ways to Respond: Email to: Fax: 1-202-318-7557 or Mail: 3470 Olney Laytonsville Road #187, Olney, MD 20832 USA

Beth Clay became involved in autism policy in 1999 when she led the Congressional hearings and investigation with Congressman Dan Burton. Now in the private sectgor, she is conducting an informal survey to learn more about the therapies that families living with autism spectrum disorders are using. The findings of this informal survey will be made public by year’s end. Please post this survey on your discussion groups and share freely with families living with autism spectrum disorders. Thank you in advance for your assistance.

I. Responder Details:
Survey Responses Prepared by: ___ Self ___Mother ____ Dad ___ Grandparent ____ Other Caregiver

II. Individual: This individual lives in _____________________ (City, State, Country)

Actual Diagnosis: ______________________________________ Current Age: __________

_____Classical Autism (from Birth) or _____ Acquired Autism (Age of Onset ____)

Other Medical Conditions Diagnosed: __________________________________________________________

Age at Diagnosis: ___________ Gender: ___Male ___Female
Culture/Race: _______________________

Verbal: ___ Yes _____ NO ____ Limited

How Many Siblings ___ brothers ____sisters
If so: Are any of these siblings diagnosed with an autism spectrum disorder? ____ or ADD/ADHD? ____

III. Behavioral Therapies Currently in Use:
1. Please list the current behavioral conditions (such as Lovvas or ABA).

2. Provided by _____public school system _____ private school program _____ in the home _____ in a medical or treatment center _____ by parent or family member
3. Payment _________ covered in IEP __________ covered by insurance _____ covered by MEDICAID _______ paid for out of pocket _____ services donated
4. Explanation if desired:

Behavioral Therapies Previously Used:

5. Please list the previously used behavioral conditions (such as Lovvas or ABA

6. Provided by _____public school system _____ private school program _____ in the home _____in a medical or treatment center _____ by parent or family member
7. Payment _________ covered in IEP __________ covered by insurance _____ covered by MEDICAID _______ paid for out of pocket _____ services donated
8. Explanation of why treatment was suspended or changed:

9.What objective measures do you use to measure success of behavioral therapies? (i.e. additional words in vocabulary, ability to dress, use the toilet, etc.)

IV. Dietary Supplements
Dietary supplements (vitamins, herbs, minerals, etc.) are widely used in the autism community. Please provide a list of products current being used and specific condition or behavior you are using the product to address (vision, chelating metals, behavior, specific diagnosis, etc.)

10. In Current Use

Product Dose per day Brand Condition

11. Previously Used:

Product Dose per day Brand Condition Age and Duration

12. If you previously used products that are no longer in use, did you suspend use because the condition __was resolved, ___ because you felt the product didn’t work, ____because of an adverse reaction to the product, or other reason? Please explain:

13. How do you generally decide to use products?
_________Prescribed by a Physician _________ Prescribed by another health care professional _________ Recommended by a friend _________ Heard about it on the internet _________ Heard about it at a Conference ____ Speaker ____ Booth ___ Attendee _______ Read about it in ____ book ____ magazine ____ newspaper ___ catalogue
Other, Explain if desired:

14. Do you want the National Institutes of Health to conduct or fund research evaluating the _____ safety and/or _____ efficacy of dietary supplements in relation to autism spectrum disorders and related conditions? If so, on a scale of 1 to 10, how high a priority is this for you? ___________

15. Do you want the autism and disability philanthropic community (such as ASA, Autism Speaks, etc.) to fund research into the _____ safety and/or _____ efficacy of dietary supplements in relation to autism spectrum disorders and related conditions?

16. Do you have a priority for specific products you would like evaluated? ___ YES _____ NO
If so, which product(s):

17. Current Approximate Monthly Cost for Dietary Supplements: __________
18. Is this more or less than this time last year? __________

V. Complementary and Alternative Medicine (CAM) Therapies
19. Do you now or have you every included CAM therapies in your treatment regimen? ___ YES ____ NO

Please check if the following therapies are being used or have been used and the approximate age of use and whether you had a positive outcome with the treatment. (Feel free to elaborate as to desired outcomes, actual experience with practitioner, and other details as desired.)
20. Approach Age Positive Outcome?
_______ Acupuncture
_______ Biofeedback (or Biofeedback accessory devices)
_______ Chiropractics
_______ Homeopathy
_______ Music Therapy
_______ Massage Therapy
_______ Rolfing or other body based therapies
_______ Hyperbaric
_______ Reiki, Touch Therapy or other Energy Healer
_______ Ayurveda
_______ Sweat Lodge, Sauna, or other sweat inducing protocol
_______ Traditional Oriental Medicine
_______ Traditional Medicine of another culture ______________
_______ Colonics
________ Other, please detail:

21. Do you want the National Institutes of Health and its National Center for Complementary and Alternative Medicine to conduct or fund research evaluating the _____ safety and/or _____ efficacy of CAM theraies in relation to autism spectrum disorders and related conditions?

22. Do you want the autism and disability philanthropic community (such as ASA, Autism Speaks, etc.) to fund research into the _____ safety and/or _____ efficacy of Cam therapies in relation to autism spectrum disorders and related conditions?

23. Do you have a priority for specific therapies you would like evaluated? ___ YES _____ NO If so, which ones:

24. Where you referred by: ____ Physician ____ Other Health Care Professional ___ Family Member ____ Other Autism Parent ___ Conference _____ Online ___Self Referral____ Other Please Explain:____________________________________________________________________________________________

25. Where these treatments paid for by _______ Insurance ________ Medicaid ____ Out of pocket _____ donated __________ Other, Please Explain: __________________________

26. Was the use of a CAM therapy specifically for the diagnosis of autism? _____ YES ____ NO
(Chiropractic for back pain for example would be a non-autism diagnosis) .
27. Approximate Cost for last 12 months for CAM therapy Use: ________

VI. Special Dietary Approaches
28. Is the individual currently on a special diet? ______ YES _____ NO
29. Type: ____Gluten Free ______ Casein Free ______ Organic Other: _______________
30. How long on the diet? ________ Are their noticeable improvements in symptoms? ______ YES _____ NO
31. Is this diet the result of a diagnosed food allergy (i.e. celiac disease) ______ YES _____ NO
32. Have you previously tried a different dietary approach? ______ YES _____ NO
31. How long was the previous approached used? _________________
32. What precipitated the change? ______________________________________________________________

VII. Physical Therapy and Exercise
33. Are any physical therapy, occupational therapies currently used? ___ YES ___ NO Please describe:

34. Trampoline ___ YES ___ NO
35. Participate in any Team Sports ___ YES ___ NO Please describe (including where offered – i.e. school, club, non-profit like NYFAC or YMCA, etc.):

37. Individual Sports ___ YES ___ NO Please describe:

38. If school age, has the individual involved in any sporting events in school? ___ Yes ___ NO

VIII. Spirituality and Religion (for parents response only)
39. Do you consider yourself a religious person? ______ YES _____ NO _______Spiritual but not Religious
40. After having a child who was born with or developed an autism spectrum disorder, did your church attendance change? _____ YES _________ NO (______ Increased ______ Decreased ____ Ceased)
41. Do you find comfort in prayer? _____ YES ___________ NO

IX. Prescription and Over the Counter Drugs 42. Are Any Drugs Currently Prescribed? ____ Yes ___ No Please List:

43. Approximate annual cost for medical serivces, drugs, and therapies. _________________
a. ____ % insurance b. ____ % MEDICAID c. ____ % out of pocket d. ____ % donated

X. Please check all that apply 44. I believe this individual developed autism as a result of a vaccine injury. ________
45. This individual has been diagnosed with mercury toxicity. ________
a. Other metals as well. ______________ (Please List.______________________________________________)
(Please describe how verified.______________________________________________)
46. This individual is using or has utilized a)___ Chelation Therapy. __________ b. ___ IV Chelation c. ___ Oral Prescription Chelator d. ___ Oral Dietary Supplement Chelator e). ___ Topical Chelator f. ___ Suppository Chelator g. ___ Other (Please explain)

47. This individual has been diagnosed with an inflammatory bowel condition. _____
48. This individual has been diagnosed with post MMR measles infection. _____
(Please describe how verified.______________________________________________)
49. This individual is currently on a Medicaid waiting list? _____
50. The parents of the individual with autism remain married (or together). ________

Please Respond by April 15, 2007 Three Ways to Respond: Email to: Fax: 1-202-318-7557 or Mail: 3470 Olney Laytonsville Road #187, Olney, MD 20832 USA You assistance in this is greatly appreciated. All individual-specific information will remain confidential. Please do not worry if the formatting becomes distored. Feel free to insert additional lines or information. If you wish to receive information as a follow up, please insert an email address here: _______________________________________