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.

http://www.whatkindofworlddoyouwant.com/videos/view/id/213154

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, too...no 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 experience...is 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
3/20/2007
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.

http://www.washingtonpost.com/

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 still....how 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 www.rockautism.vh1classic.com 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: info@bethclay.com 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: info@bethclay.com 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: _______________________________________

Wednesday, March 14, 2007

SHAMELESS SHAMELESS Band Campaigning

Hi Guys! I know I've not really been around, but I've been busy doing band stuff, SmallBoy stuff, work stuff, and well, life stuff. Head on over to my NEW CHICAGO PARENT blog for the latest on SmallBoy at the Bulls game - I'll post it here sooner or later, but if you want to read it sooner, pop over there!

In the meantime, I need to do some shameless campaigning for our band. One of our fans thought we were pretty good and entered us into a contest to be New Country Star's Favorite New Country Artist/Band! You can listen to a bit of our song, "Pick the Tune," written by our bass player, Peter, and if you love it, you can vote for our band once every hour through the month of march.

There is a great deal of phenomenal talent in this contest in all categories, Female Vocalist, Male Vocalist and Band/Duo. Click on the link above or on any of the pics below (or even of the pic of PC & me on the sidebar) and vote. A lot. Here's the band!

CHRISTINAImage Hosted by ImageShack.us

MIKEImage Hosted by ImageShack.us

SCOTTImage Hosted by ImageShack.us

PETERImage Hosted by ImageShack.us

JOEImage Hosted by ImageShack.us

Tuesday, March 06, 2007

Get Your BookMarks & Your BookClubs Set

It's getting time to pull out the summer reading again, and boy do I have a great one for you! Following up her first book, Confessions of A SuperMom, Melanie Lynne Hauser is releasing SuperMom Saves the World. Super Mom picks up after the Horrible Swiffer Accident, and has our main character, Birdie (and her alter-ego, SuperMom) struggling with many things: The Phantom of the BallPark and the Secret Super Duper Swiffer, her ex-husband, her fiance, the Astro Park-O-Dome that seems to be an all consuming thing for the town, and a teenager who drives.

I haven't finished yet, but reading it is so much fun, I hate putting it down. I MUST go back and read her first book! What I really enjoy, aside from the fact that I can relate to Birdie, as she tries to do 12 things at one time. Go to Amazon NOW and order this book!!!!

My next MUST HAVE book, I recommend on a personal note. I know the author well and can tell you, without ever having read the book that it's fabulous, because I'm extremely familiar with the story. The book is called, Daddy's House by Jane Meadowcroft. It is the story of a little girl who lives with her mom. She visits with her daddy every weekend. Jane's book tells about all of the adventures the two have in their precious time together. It is the story of a beautiful relationship between a girl and her Daddy. It is a story of love, unconditional and from a bit of a unique perspective. This is a perfect book for families with children who travel between two houses. Check out Jane's book. You can buy it at Author House. This book is soon to be followed up by the story of a Prince Charming who sweeps an exhausted over-worked, underpaid mother of three (with one child on the Autistic Spectrum) off of her feet, and how they all begin, as a family, to grow together and create a whole new life.

I have more - but I haven't finished. I've been trying to read multiple books all at the same time and am still finishing a few. I'll keep them coming for you, though, I promise. Check out these books and let me know what you think!!!

Thursday, March 01, 2007

Can They DO This?

"They" being the legal system, the special ed teacher, the school. I found this through the myspace site that I write on and was just floored. Can they REALLY do this?

FOR IMMEDIATE RELEASE

Evelyn Burgo
Patricia Genders

6-Year-Old Autistic Boy Charged with Assault II
WHO: Evelyn Burgo
WHAT: Disabled child charged with Assault II for jumping on teacher
WHEN: February 26, 2007
WHERE: Kailua-Kona, Big Island, Hawaii
WHY: Child attacked special education teacher after repeated warnings from mother of his violent nature


On Monday, February 26, a 6-year-old autistic boy was read his rights and charged with Assault II for jumping on his special education teacher. This arrest was made when he and his mother went to pick up some files at the Kailua-Kona, Hawaii Police Department.

This same special education teacher took out a Temporary Restraining Order against this student and his mother.

Ho'okena School, as well as the teacher and the District Superintendent are well aware of this child's violent outbursts. In the past, he was moved out of a summer school class because he attacked other students. Prior to jumping on his teacher, he was removed from his current classroom because the staff was worried he would hurt himself or others, and kept him in time- out from 10:55 a.m. until his mother picked him up at 2:00 p.m. The school has been asked repeatedly to at the very least provide a one-on-one aide that is trained in the art of dealing with autistic children, or move him to a school for autistic children.

Even with all of this, the school contends they can handle him. All the testing says that this child is at a pre-K level. But he should be at a first grade level.

His mother, Evelyn Burgo, says: "I am at a loss as to what to do. I feel my son needs help, not punishment, and he needs it now, as the window of opportunity to help him is running out.

Many people have told me that I need take this to the media to finally get the help we need, and that is what I hope to do. I have done everything the school has asked and tried to work with them, to no avail. Now, here I am with a disabled 6-year-old with Assault II charges against him.

We are filing for a Fair Hearing. But I understand this will take months and my child is not being educated nor is the school providing any help with his education, even though they know neither he nor I are able to go on school grounds because of the temporary restraining order."


What can Mom do? Anyone? Forgive my ignorance, but wouldn't this be something for which the special ed teacher would be prepared, especially working with kids on the spectrum? I'm appalled.

Friday, February 23, 2007

I've Been Meaning to Write...

...but life just keeps happening around me and not leaving much time to breathe. I've been meaning to write about the things that have been coming home in SmallBoy's notebook, good & bad. I've been meaning to write about Girl's latest round of injuries (none due to her insane sports schedule, believe it or not). I've been meaning to write about LargeBoy's first "big purchase," and I don't count the iPod, since that was gift money. I've been meaning to write about the new paint job in the house so that we can jack up the equity and hopefully get a good re-finance rate. I've been meaning to write about how North Country is just crashing onto the scene. I've been meaning to write about SmallBoy's sleepover, when his bestest bud, PQ, stayed, and how the whole social thing played out. EEEEEEEEEEEEEEKKKKKKKKK....I've had a lot to write about, but no time. When I manage to find the time, either someone else is on the computer, I'm insanely busy at work, or my laptop is busy crashing for the 10th time in 4hrs (no virus, it just hates me).

Let's start with SmallBoy, though, since he's the important one in this whole posting. I've mentioned before what great success we're having with the notebook that we're using to communicate between school and home. It's been helping all of us - SmallBoy, the teachers, and us, of course, to keep track of SmallBoy's comings and goings, send suggestions back to the teachers, send notes from J the Fabulous OT, etc... I've made smaller, one page, mini-notebooks for the teachers that he sees for the specials - music, art, Spanish, computer, library, gym. It truly is an amazing tool and I can't believe it took so long for me to pick up on it.

Every once in a while, though, I seem to be unprepared when the notebook comes home saying that SmallBoy had a bad day, even less prepared when he's had an awful day, and just dumbfounded when he's had an atrocious day. Why? Don't know. Last week, after having just a terrible week or so prior, due to schedules, Ex being a schmuck, SmallBoy feeling under the weather and just down on himself in general, the notebook came home and I was prepared. All week I had read about the difficulties that he had been having and sending the notebook back the next day with my tips and bits of SmallBoy wisdom. I didn't expect this entry to be any different than the rest, but was hopeful for something good. HA. I wish I could quote it verbatim, but I don't have it in front of me, but the premise was this: the teachers were chatting and thought that perhaps SmallBoy could also have ODD (for those of you not in the land of abbreviations, learning disabilities, and spectrum disorders, who just happen to be popping by for the first time, ODD is short for Oppostional Defiant Disorder). She asked if this is part of Asperger's, if it is something completely separate, etc. I've gotta tell you, I had that same, WTF moment that I had the first time the school suggested that there was something "wrong" with my child.

ASD, yes, maybe even a little ADHD when his engine gets really revved, but ODD???? Knowing now, from experience and learning, what I didn't know back then, I tried to push out the immediate reaction and attempted to look at it from the teacher's perspective, and consider everything that's been going on with SmallBoy. He's been melting down more frequently in class, especially when he has to make corrections or is overloaded on directions, etc...He's been not "showing respect" to the teachers in the school by speaking to them as he would a friend or a brother & sister when he disagrees with them. He's been melting even further if the teacher gets a little frustrated when he tries to leave the room during the middle of an assignment or classroom project because he's melting down. He's being loud and vocal in his objections to things. He's getting up from his seat and moving around more frequently. He's JUST NOT getting it with some of his assignments and getting upset by that.

Ok, I could see some of his behaviors mimicking those of ODD, but these behaviors are not exhibited outside of the school, and if they are, we understand why he's doing what he's doing and act appropriately, in ways, I suppose, they can't (or won't) at school. Don't get me wrong, I'm not speaking against the school or the teachers, I adore them, they're doing a wonderful job, and were it not for the notebook going back and forth, this situation could have gotten MUCH worse. I knew, again from the experience and scads of books that I've read, that ODD was NOT what we were looking at. The teachers happen to be with SmallBoy for some of the things that set him off the most - FRUSTRATION: due to comprehension issues with reading, due to not knowing how to handle his own disappointment, due to not being able to self-manage a meltdown, due to not being able to sit still, due to his need to be perfect to be "accepted," (gee, I'm pretty sure that I know from whence THIS came, Ex's lack of acceptance of him because in his eyes, SmallBoy is less than perfect?).

I wanted to be certain that I wasn't seeing this with the eyes of denial, as I did initially with the "something's wrong, we need you to have SmallBoy evaluated by the school district," conversation, so when we went to OT that night, I talked to J about the teachers' thoughts. She completely disagreed with the idea of ODD, but agreed with me, that yes, indeed, the teachers are with him for most of the things that will "set him off." She offered suggestions to the teachers, (ie: visual directions on the board in addition to oral directions to the class, allowing him to leave the classroom to a predetermined spot in order to self-manage a meltdown with the caveat that he must ask permission first, and a few more which I'll expand on in another post), and to us on helping SmallBoy learn more self-management techniques.

I am very pleased to report that since this "conversation," things have been better for him. Granted, he's still forgetting assignments, still having outbursts, etc, but he's learning to manage them MUCH better. One such instance happened just last week at an all-school mass. It was a LONG service and, in addition to the homily, there was an additional speaker. A 45-minute long mass is difficult on ANY child his age, especially when expected to act in a "proper" manner, but put this on an ASD-er, and then add an extra 15minutes for a speaker and the scene is set for trouble. Well, our SmallBoy, bored off his rocker with this ridiculously long service, let it be known that the speaker was taking WAAAAAAAAAYY too long! Everyone, of course, turned around to look and, instead of freaking because now everyone was staring, he used that moment of embarrassment (or the "oh-shit-moment"), to self-mange and compose himself. I have to applaud him for that! Since then, he's been fantastic! I'm SO proud of him.

To finish off his "lovely" week, SmallBoy had his "bestest bud" sleep over on Friday night. PQ is SmallBoy's rock and helps keep him on an even keel. He's a truly wonderful kid, we adore him! SmallBoy, as excited as he was about this sleepover, was off in SmallBoy Land. Oh yes, the boys definitely played together for quite a while, but when SmallBoy got bored, that was that. He would go off in another room and hole up with his GameBoy. PQ tried, I tried, PC tried...we all tried to get him to participate in fun things with us but all he wanted was his GameBoy. Perhaps this was his release for all of the stress from the week, because normally, he will come out of SmallBoy Land to hang with PQ and his buds, especially if it's on his turf. Not this time. He'd come out if he felt like it, or if they were playing the Game Cube, but other than that, it was a battle.

The next morning started off very well, the boys got up and played and were happy as clams. They discussed going out in the snow, since we had TONS of it outside. They played video games until I told them to stop. Yeah. That's when it got a little hairy, again. I asked them if they'd like to come and help me make breakfast, to which they both boisterously agreed. They wanted scrambled eggs, and we were going to make biscuits - something quick and easy, and something fun and tactile. I made the eggs and had the boys do the biscuits. Well, this time, SmallBoy was so upset with me for making him come and participate and turn off his game, that even the sensory that he loves so much of handmixing the biscuit dough and squishing it and getting it all over his fingers, was just way too much, but we got it done. It was time to roll and cut. I figured this would be fun, and it was. Each boy took turns rolling out the dough and using the glass to cut the biscuits. We got the biscuits out of the oven just in time for PQ's mom to arrive. We sent them on their way with half a dozen steaming biscuits fresh from the oven and all was well. SmallBoy, after PQ left, was totally bummed that his bestest bud was gone. Though I see this on a regular basis, I'm constantly amazed by the fact that, though SmallBoy wanted more to play with his GameBoy or Game Cube independently, and only interacted with PQ minimally, that he missed him so much when he was gone. What are friends for, though, right?

Ahhhh, m'ijita, my wittew goowah, Girl, in all her glory has managed to injure herself not once, but twice in different parts of her body over 4-day span. This used to be a regular occurence when she was little; we had a pool going on the block to see how many times in one summer she could skin her knees - no, seriously, we did. This time was beyond knee-skinning, however. This time, she was going for something big like "contusions" (she's rather fond of those). That's my Girl!

It all started on Friday at Mission Day, the school fair that benefits the Ursuline Sisters Mission. This is a big deal at school, and, being in 8th grade, it was her last one. She went all out. She won the "sacred" goldfish (long standing tradition - ring toss game, I think), and won a white cake, with chocolate frosting, topped in snow caps candies!! YUMMO!!!!! As the storm on Tuesday had dropped quite a heavy blanket of white fluffy snow upon us (not to mentione dropped the temperature quite a bit), the ground, as you can imagine, was quite frozen. Girl, SmallBoy, & Snood were getting a ride from Snood's father and, on her way to the car, she slipped. In the process of falling, she dropped the cake (which was saved by Snood's father, who would never let anything bad happen to chocolate), and tried to stop herself with one arm while attempting not to drop the goldfish bags. Let's just say the goldfish was in one piece.

(Update: I am now starting day 2 of this post) I was hopeful, when she called me at work and told me she fell, that she had just banged up her funny bone, because we all know what a sting that leaves. Those hopes were dashed when she delivered the next line, "Well, I can't really move it, and my arm is hanging funny." Thankfully I was at the end of my work day, so I bypassed my workout and went straight home to don my Dr. Mom hat. Her arm was definitely hanging funny, but I'm fairly certain that was due to the gigantic swelling of her elbow. She was able to bend it up and touch her shoulder, with pain, mind you, but she could do it. That pretty much quelled any worries I had about it being broken, but you never can tell. I thought about taking her for "just-in-case" x-rays, but they would have been fruitless with all of the swelling. Instead I plied her full of Ibuprofen and the heat/ice treatment and just made her rest. I kept her home from softball practices all weekend, and, thankfully, there wasn't much in the way of basketball. Within a couple of days, the swelling, and the pain, had gone...

...just in time for the 8th grade ski trip. Yep. I said "ski trip." This was a MUCH anticipated trip that had already been cancelled once due to the freezing temps with an even more freezing -30degree windchill. Fortunately, the two week span allowed the sun to awaken from its winter slumber and force its way out from behind the dreary gray winter clouds to warm the earth, or at least out little part of it, to a beautiful 35degrees. The ground was covered with many more inches of snow due to a massive snow storm earlier in the week (see pic at right), and the kids were more than willing to get up at the crack of dawn on their day off to hop on the bus at 6:30 in the morning. They skied all day, somewhere up in Wisconsin or Michigan and finally called around 8:30 that night to say they were almost home, exhausted, but exhilirated. When I spoke with Girl, I asked how the trip was. Her answer, "Well, mom, the first two hours were great, but I hurt my ankle and spent the rest of the day in the lodge. I'll tell you about it when I get home."

My immediate thought went to how lucky she was that she hadn't broken her elbow a few days back, and that I hoped we weren't tempting fate. After hobbling through the door with PC & ET, we did the ibuprofen heat/ice thing (again) while we listened to her tale of woe. The story began with her all so brief lesson on the bunny hill. She quickly ascended through the ranks and graduated from her 20minute course with flying colors. Next she moved on to the beginner hill, which she conquered with ease. Feeling bold, as she is want to do, she took to the intermediate hill. She was cruising along, and was almost to the bottom when IT happened: her ski fell off. Thankfully, she was pretty much at the bottom and was preparing to stop anyway. Unfortunately, the lack of ski left her a little out of control and as she tried to stop, she tumbled into a woman who had already finished the hill. If someone had a video camera, this would have made perfect fodder for AFV, as, after Girl fell into the woman, a classmate came down the hill and fell onto them. I'm not going to get into how rude and uncaring the ski patrol guy was because that's another story, but we'll just leave it at the fact that he was a very incondsiderate jerk who told my daughter that he could have her thrown in jail for being out of control on the ski hill...even the woman she fell onto was defending her.

ANYWAY, of course she did something in the fall to injure herself. We're still not quite certain what it is, but she wasn't swollen this time. Perhaps x-rays would have been helpful, but, nah. We think that she pulled a ligament or something. Thankfully, some pain spray and a couple of really hot baths helped to work this out and she was back at basketball practice the next night. Wearing the Smart Mom hat this time, I intercepted one of the coaches who, thankfully, had already heard the story, and let him know that she was insisting on practicing, but not to let her run. She's fine now, just home with the flu, or something normal like that, now.

LargeBoy - my child is growing up on me. Many moons ago, he played the cello and has since abandoned it for the bass guitar. He is quite accomplished in his songwriting (and novel writing), and has also taken up the acoustic guitar. Taking after his mother and step-dad, he and his buddies are working together to write music (I'm beaming with pride). LargeBoy's had a few issues with his bass, as it's old - I bought it used for him in 2002. It finally cashed out on him last weekend while he was at his friend's house writing. He called me and said, "Mom, is it ok if I buy a new bass? I've got the money, and I've already called the store and they've got one for $500, one for just over $200, and a couple for $99. I'm not even thinking about the $99 ones and I can't afford the $500 one. So, since I have the money saved up, can I go buy it?" We had a conversation about what he was saving the money for, originally - and is still saving for, an Outward Bound trip, and came to the conclusion that, well, it's his money, and he can spend it as he chooses; that he won't be going on the Outward Bound trip for at least another year or two, and that gives him time to save up again. For the most part, just the fact that he called me to ask my permission to make a major purchase, even though it was with his own money, showed me how incredibly responsible he's getting. He'll have no problem saving up the money for his trip! I'm so proud.

I was hoping to have the pictures of the new paint job that we did up already, but they're still in my camera and my laptop is just being stupid, so I haven't loaded them, but I promise I'll try real soon. The colors are fab!

Finally, the band is just bursting out into the world right now. This is keeping us oh so busy, and we're loving it. We've been writing, recording, promoting and haven't had a whole heck of a lot of time to do much else. We put together a demo of a few of the songs we've written, and a couple of cover tunes, and made a fabulous, professional looking insert for it....just tickles me pink. This is so much more than we ever got done with the previous band - and North Country's only been together since January, really. We've received airtime on a few internet stations, including the Susie Doo & Mandy Too Show on Thursdays 1:00 on HomeGrown Radio. Next week we'll be doing a live interview on the airwaves between 5 & 7 CST. See the widget in my sidebar for more info. I'm blanking on the station's .com, but I'll have that and post it ASAP. AND, if you haven't already, click on the little box off to the side here, to listen to our originals. We're extremely pleased with them. The most recent, Pick the Tune, was written by our bass player on Feb. 12, recorded on Feb. 13, and given to his wife as a Valentine's gift the next day. Click here to find out when and where you can hear and see North Country. I can't begin to tell you how incredibly exciting this is!

In the meantime, since I've "talked" your ear off, I'll post this and go back to doing my day job (since I'm sitting at my desk in my office on company time).

Tuesday, February 13, 2007

Family of 5 Autistic Children on Extreme Home Makeover

I read this through my myspace site and wanted to share it with you.

Also, thanks so much to the outpouring to my previous post. Cherie was quite thrilled by all of the responses and support from the community. You can check in on her blog to follow the progress of the IEP, as it was rescheduled (which seems to be the way IEPs go). I'm so very proud to call all of you my friends.

Now, check out the bulletin below!

----------------- Bulletin Message -----------------
From: AUTISM CONNECTIONS
Date: Feb 13, 2007 3:38 PM

Family With Five Kids With Autism: Extreme Home Makeover Feb. 18

Next Episode: Sunday, February 18, 8/6c "O'Donnell Family"

The only documented family in the U.S. with five autistic children will receive a much needed home. Country music star Trace Adkins performs at a benefit for the family. Click here for more info: Family of Five Autistic Children on Extreme Home Makeover

Friday, February 09, 2007

For A Friend in Need

Hi my favorite sources of support and sanity! I have a friend from my myspace site, Cherie, who is in need of some advice. She lives in Ontario Canada and has a sweet little 4/5 y/o boy named Aidan. He's on the spectrum. Mom is making no headway with the schools and is pleading for advice and suggestions. I'm reposting one of her myspace blogs here and asking for your comments and ideas which I will, then forward on to her (unless, of course you have a myspace account - then you can reply directly to her myspace blog).

Wednesday, February 07, 2007 - 8:02 PM
It all begins... I knew the day was comign but didn't expect this...

This is going to be a long blog, so grab a cup of tea and sit back.

So this is where things are at:

Aidan attends nursery school three mornings a week for two hours at a time. During this time the nursery school has a schedule and Aidan has done really well in learning how to do all of these activites and transition from one to the next without much difficulty.

The children have 30 minutes of free time a day and during this time Aidan is given about 5 activities to do. Even if he hates the activity he iss till forced to do it. This is something I was not aware of, and it was also not shared with me until today that Aidan was literally having meltdowns after he was being forced to do these things i.e. a puzzle.

So Friday afternoon their is a case conference regarding Aidan being held at his nursery school. At this time his preschool resource witll be there. (This person goes into the nursery school and works one on one with Aidan once a week, and gives the nursery school directions on ways to help Aidan etc... p.s. might I add this woman has been working with Aidan for 1 year now and has done no training with autism...)

Aidans SLP (Speech Language Pathologist) will be attending to give the nursery school different suggestions on how to promote communications with Aidan and activities etc. to keep him using speech. (This SLP has only seen Aidan 3 times and that has been once a month and nothing hands on has happened with her. So I have demanded more one on one speech therapy with Aidan once a week, instead of this once a month for an hour crap.)

All nursery school staff will be present (3 of them) They are great ... really! I swear to god they are all Mary Poppins. Always happy and cheerful... kinda makes me sick haha.... no really they are great.

Anyhow... Aidan SSAH worker (Special Services At Home.... same a s Respite just more hours and she does what I need her to with Aidan. Currently we get about 12-15 hours a week, and we have been concentrating on socializing Aidan out in public, swimming and any activity I feel he needs help with i.e. crafts, task completion activities...etc.)

Of course I will be there as well. I guess I am having a bit of a bitch fit right now, because Aidans Preschool Resource worker has a horrible habit of trying to run the show. It's like she assumes I cannot do it. Trust me, this mamma can more than handle it... infact it is always me giving the sugegstions or getting the tools... I am his advocate. Now I am silly to even say this because we all do this so you know... but these people just don't get it sometimes.

It is important to point out that the Preschool Resource works with all children from all different areas... NOT specifically children with Autism... infact on her caseload,...she has maybe 2 out of 50 that have autism. Ya seriously. She also has not educated herself with autism, learning tools or ways to help Aidan so she in turn isn't able to give those suggestions and advice needed to the nursery school because she doesn't have the training to do it. to me it seems like she is using all methods to teach Aidan... sorta seems like treating a broken leg with a bandaid... She just doesn't have the training necessary. Also being as this is a rural area 2400 people... my options of switching her is pretty limited.

So the preschool resourse phones me at home today to say, "I think we need to video tape Aidan, and send that video in to have him re-evaluated for IBI / ABA" Ok... now in Ontario, Canada only those children who are on the severe end of the spectrum even qualify and Aidan was diagnosed as being mild. Aidan also is past the stages of IBI / ABA and the entire PECS program because he is so verbal, he makes requests, he knows his ABC's, 1-20, Colours and is able to put a few 2-3 word combinations together.

Aidan was seen and assessed by a child psycomotrist (who only deals with autisitc children). I phoned her today as she is the one that the Preschool Rescource wants to haev the video tape sent to. She was as angry and appauled by the suggestion as I am. She said, "Cherie, no matter how many times this child is assessed... he will never be severe... and he defiantly will not benefit from IBI / ABA because he is past that... the skills taught using IBI / ABA ... He already has those skills."

It seems like Aidans Preschool Resource is seeing IBI / ABA as the be all end all therapy to cure this child and that is just not the case. She drives me crazy. I have had to limit her time around me because she seriously makes me want to beat her. I realize that a large portion of her clients parents, ... do not know who to contact or what services to access. A lot also are not really great parents and lack skills, like the ability to do laundry, wash a floor or cook. These are all areas I do NOT need help in. This she knows.

So back to the Nursery School and Preschool Resource. So I am being told when Aidna is at the nursery school that they are having a hard time transitioning him from one task to the next and that he is having meltdowns, or it is taking two of them to physically move him to the next activity.

What are your thoughts???

I am thinking...

1) He isn't getting enough 1 on 1

2) He is being given to many options and is overwhlemed

3) Aidan is being forced to do activities he hates (don't get me wrong of course he has to be pushed and forced to try new things but is in necesssary every morning that he is there??)

4) 3 mornings in a row Aidan has cried when I have dropped him off... this is something that he never did before... why is he doing this???

Again we have a meeting Friday so any imput you could give me or suggestions... hit me with them, because I want him to continue at the nursery school but I also want everyone else to get it together and put some emphasis on Aidan and the fact that he does have autism..... nott hat autism is everything but he does have it.

Ok... what has worked for you guys???

I feel lost...

Gees I hope this makes sense... lol



I know you guys are full of resources & suggestions. This is what I wrote in response:

Hey Cherie -
First, I want to applaud you for YOUR restraint for not beating the crap out of that woman! Secondly, I also blog at MommyGuilt with a group of wonderful parents of kids on the spectrum. These people are from around the globe, from different population sizes, different school systems, etc... I urge you to also pop over there and start reading and checking out their blogs. A couple of bloggers you should check out are Kristina, whose Charlie is more towards the severe end of the spectrum, andKyra, whose 5 y/o "Fluffy" has Asperger's. Both are fountains of knowledge on programs, schools, resources, helpers, etc. Pick their brains and tell them I sent you.

Extremely important:-YES, YOU are Aidan's advocate! You know what strategies work best with him. Try to, without seeming on the defensive, push this to the teachers, perhaps by writing a "manual" or an "about me" from Aidan - I'd be happy to send you a couple of the ones we did for SmallBoy. Also, very important, especially if the school staff seems to feel the need to take charge of the meeting and push you off to the side. See if the psychomotorist is available to either attend the meeting, in person or via conference call.

In answer to your questions:
1) He isn't getting enough 1 on 1 - Probably not, but from the way it sounds, it's because the school, as we all say, doesn't "get it." They need education from YOU on the best things to do for Aidan.
2) He is being given to many options and is overwhlemed - Absolutely. I hate to use this analogy, but it might be the simplest for the teachers to understand....it's like when your computer is taking too long to process your commands and then overloads because you keep pushing the buttons over and over trying to make it respond...Same theory in play here.
3) Aidan is being forced to do activities he hates (don't get me wrong of course he has to be pushed and forced to try new things but is in necesssary every morning that he is there??) - No, it's not necessary, especially at his age. If they could choose, say , one activity a week to have him work on and let the other ones slide for that week, then perhaps he could slowly be worked into them. Also, if the teachers help him do the activity in a "fun" way....in a way that they are doing it together, that sometimes helps. Look into RDI (Relationship Development Intervention). That sounds like the track that you guys should be doing, particularly if he's well past ABA and is verbal.4) 3 mornings in a row Aidan has cried when I have dropped him off... this is something that he never did before... why is he doing this??? - It could be a number of things: stress, anxiety in anticipation of being made to do something he doesn't want to or doesn't understand.

Oh and back to the meltdowns: If those teachers had any clue, they'd understand that he's in nursery school and he's on the spectrum....of COURSE he's going to have meltdowns. What you need to do now is find a plan to help him work his way out of the meltdowns, either on his own or with their assistance.

Check out my MommyGuilt blog and get in touch with some of the wonderful people on there. They'll give you some guidance and some suggestions. They're great great people.


She needs your suggestions. Thanks guys!

Monday, February 05, 2007

Little Drummer Boy

Thursday and Friday gave a different appearance to my living room. Drums, obviously, recording equipment, etc....The band was doing some recording for our site and for a demo. Needless to say, things were a little different. As you can see from the pics, we moved the coffee table into the tv room and landed ET's drum kit smack in the middle of the front room. We dropped in microphones, recording equipment, chairs, wires, guitars, and all of the necessaries, all of which required precarious stepping when maneuvering through the room. I was hoping that this wouldn't throw off the rhythm of the Not-So-SmallBoy. Oh it certainly did not. He was LOVING having all of the music in his house. He tried out the microphone, helped us check levels and popping p's, come to think of it, checked out the recording equipment, watched with great intrigue as the recording was done. We were a tad concerned, since the mics were live and we were recording in the living room as opposed to a quiet little studio somewhere, but everyone kept their noise to a minimum and we were fine (except when PC was dancing and none of us could hold back our laughter).

We watched as SmallBoy took "notes" on the recording board - lots of buttons, lights, sliders, and dials. To observe him, one would think that he was taking mental photographs of the board so that he could sit down and operate it after just one lesson. He was so intent, hovering over the board, trying to glean as much knowledge as he could. It was amazing. His eyes were ablaze in wonderment and focus...oh yes, he was incredibly focused, especially as he watched our friend, Colondo - who was recording us, use the board. I've only ever seen him focus like this on video games, it was amazing. Oh, you should have seen him. But it was the drums that drew the most interest. I've already got a baby grand piano in my living room, I hope this is just a passing thing...or do I?

It was with the same focus and hunger for learning the recording board that he listened and watched ET show him what to do on the drums. ET showed him how to hold the stick properly, what part of the cymbals to use, how to use the high-hat and the kick pedals, what the snare is for, and away he went. He was happy as a clam. He PLAYED...he didn't just bang away hitting random drums. He was making rhythm patterns...music. This child has never played the drums before and it seemed almost natural to him. Sure, ET kept guiding him, but everything ET said, he absorbed, like a sponge, and applied. He wanted to play those drums all night. He was doing great!

"What a great resource," I thought to myself. A new tool for OT, perhaps? Could this be something to help when his engine is too high, and to help him with the musical blood that runs through his veins to reach its potential? Hell, he can sit down at a piano and make music - he can't play, per se, but he can find chords and patterns that make musical "sense" and that sound good together. He's got a knack for this music stuff. I know they say that kids on the spectrum tend to be really good in areas of music/math, and SmallBoy most certainly is. Hmmm....makes me wonder....should I get him a small drum kit for his room? A drum pad crossed my mind, but it won't be the "same" for him, know what I mean? Anyone have any thoughts on this?

Friday, February 02, 2007

The Notebook

No, not the movie, sillies, I'm referring to the communication notebook between home and teacher. I have spoken about it before and how helpful it has been. I encourage all of you, especially if you have difficult time getting information from the teachers/school - for whatever reason - to encourage its use. We don't have it mandated by an IEP plan, we just do it because we don't always have time to chat on the phone each day. Mrs. M writes to me each day, just a blurb or so if it's easy, and a bit longer if it's been a rough one, then I respond with what we've done in response to her entry, and add in if he's having a high/low engine morning, what might have happened at home since coming home from school, if he's frustrated over homework, if he's not feeling well, etc...you get the idea. It's an invaluable tool for us.

The notebook is not without its downside, however. Ocassionally, SmallBoy, having had a particularly rough day, will go through the notebook and scratch out (with pencil...LOL) what the teacher had written in the hopes that I won't read it. He'll also forget the notebook - although, I've decided that's not always intentional since he has difficulty remembering to bring home lots of things. Other times, I'll send it back and it won't get to Mrs. M. What particularly gets me, though, are the times when we've had a week of "Great day today," and "Wow! SmallBoy worked himself out of a meltdown and had a fantastic day," and then get one that says how he got upset and refused help and melted because he couldn't understand the assignment, but wouldn't listen when the teacher explained....

I know, we all have them and they're so much fewer and farther between, but it's like we had finally picked up speed and then SLAM!, right into the wall. We work through them, we write our stories, have our discussions, and all comes out in the wash. It seems though, that I have a much more difficult time getting past these than does SmallBoy. I suppose it could be that I see the progress and the great reports and I get this motherly feeling and, perhaps, false sense of security that all is now on the right track to be right with the world and then, when it comes to a halt - or at least a temporary slow-down, it throws MY rhythm off. Perhaps it is because there are SO many other stressors in my life right now - ok, well only a couple, but they're pretty big stressors. Perhaps it is time, like J The Fabulous OT told us last night, that SmallBoy learns how to deal with these things on his own for times when we can't be there to help him out or when no one around him is really quite sure what to say or do to help him when he's so far gone in one of his meltdowns. Perhaps I need to let go. Perhaps I need to start my own notebook to SmallBoy:

2/2/07: Mom had a rough day today. Making lots of phone calls about stuff that gets me frustrated. Had a minor meltdown, but took a big breathe and focused and pulled out of it.

Hey, you know? That sounds like good idea - then HE has some idea of what WE are going through and HE can write back to us:

2/2/07: How about a squish, Mom? Will that bring your engine back to just right? My engine was too high today and it needs to come back to just right, too. Had a good time at the volleyball game (teachers v 8th graders), but had a bad time in Social Studies, or something to that effect. Ya think?

I'd love your feedback on this Parent/Child Communication Notebook idea.

Monday, January 29, 2007

No School, North Country, New Things

I have a love/hate relationship with the kids' days off from school. It makes my mornings SO much easier when, in my rush to get off to work, I don't have to stop mid-routine and wake up one, then the other, then another (repeatedly). Then again, Girl wants to go shopping, LargeBoy has school....what to do with SmallBoy? Granted, he's 10, and, were he NT, he could probably stay home by himself, but I don't think I'd be too comfortable with that ~ a dilemma with which working parents grapple each time the school calendar bolds those two words: NO SCHOOL.

Today we worked out a compromise, Girl didn't leave to go shopping until almost noon, and PC was going to be home around 3. I work 7minutes away, so I can get home in an emergency. We briefed him on what was going on. He's been home alone for 1/2hr/45 minute stints before, when he gets home from school and his brother and/or sister haven't arrived yet. He's fine. He gets up in the morning WELL before we're ready to and is able to occupy himself, although, it's usually with the TV, the computer, or video games...but the point is, he's able. I called a few times to check on him, but he never answers the phone which, I suppose, is for the best. He's fine. I'll be more fine when I get home.

Saturday night the new band, North Country, made its debut. I will have to admit that, although I attempted, and probably pulled off, an air of calm and don't-worry-be-happy, I was PETRIFIED....not because I wasn't confident in the band, I knew they'd rock, but because it was a first. I took for granted the comfort that comes with knowing where everything's going to fall, how people will interact on stage, what people have come to expect of the band...but it was fine. We had a few glitches, but whatever we encountered, we overcame and laughed off, especially our double - time song, Redneck Women (Alvin & the Chipmunks Style). We had a riot, though. I absolutely cannot wait to do it again. These people are so talented and so professional, and we were all right here under each others' noses.

I also had the good fortune to meet fellow autism blogger, Wade and his daughter, L, who had the great timing to be in town over the weekend. I can't tell you how cool it was to finally meet him (THANX FOR COMING - and staying longer than you had planned!) It was really nice to finally put a face, and a voice, to the amazing, "discussion - inspiring" posts over at Injecting Sense. I gotta tell ya, he's really cool! You gotta meet him!

In addition to the band, there are a lot of new things going on in our life, but I'll speak to the most important - that being the Not-So-SmallBoy. He spent Saturday night with my mom (GR), because Girl & LargeBoy were at Ex's. SmallBoy has a great time when he's there, he has a place to chill, sans all the distractions that our house and our schedules and our lives have to offer. Just SmallBoy & GR. When he got home, his engine was nice and regulated, as were mine & PC's, but, of course, as the afternoon rolled on and things got back to "normal," everyone's engines revved up high and we all got a little irritable.

SmallBoy ended up in his room cooling off/arguing with me over his GameBoy until I told him he had to clean his room. That, as you would expect, was met with a great big, "WHAT?!?!?!?!?!?!" As we sat and talked together, I explained to him that I did not expect this Herculean task to be done all in one session, and made him a list of what he needed to do - Lists are beautiful things! After a few more trips up the stairs by PC & me, and some gentle prodding, the task got done. We had also turned on some of his Listening Therapy music (btw - the frequencies still play on the boom box the way they do in the headphones). His engine came WAY back down. I went up at 9 to check on him and he was, for the most part, done with the list I had written for him. Of course there is still some work, I called it "fine tuning," to be done, but he had finished what I had set for him. Dressed in his blue fuzzy sports robe and his boxer shorts, he was ready to come back down stairs and join us, but stopped before he did so. We are keeping Snood for a few days while her parents are out of town, so SmallBoy has an extra sister, and he knows that, even though she is at our house so much that she is practically another one of our family, she is still a guest. He stopped and said to me, "Mom, I need to put my clothes back on. We have Snood here and I can't go downstairs in my robe & sleep shorts." COOOOOOOL!

We have been trying, for a LONG time, to get him to grasp the concept of being dressed appropriately when we have guests, even when it's bedtime. He would always come down in his tighty whities when he was getting ready for bed, or if he got up first (which he usually does). This time, though...it was as though something clicked. TaDA!

I'm going to try and write more again, but we're making some huge decisions in our life right now and they're wracking my nerves a bit, but hey, that'll be something to write about, won't it. Tonight, though, I don't think I'll get to it. My goal is to get the DAMN TREE DOWN! Yes, my Christmas tree is still up. I just haven't had time to get to it. It's never an easy thing, and it's never even close to as much fun and festive as putting it up. One year our tree was up til Valentine's Day (and beyond~~~sorry, my brain was invaded by the spirit of Buzz Lightyear). It WILL come down tonight. We actually discussed putting a drop of superglue on each ornament and just carrying it out to the garage...LOLOLOLOL. We also thought of telling people that yes, in fact, we had already taken our tree down, but that we looked at our calendar and saw that we have no time between now and next Christmas to put it up again, so, the only logical time to put the tree of for Christmas 2007 was, well, now.

I need coffee....anyone have coffee???????

Friday, January 26, 2007

"You Must Respect My Authoritah!"

For those of you who abhor South Park and all of its content, I apologize, but considering the post, I think that was a very appropriate opening line. For those of you who LOVE South Park, you'll understand. For those of you asking, "Just what the HELL is she talking about," well, just keep reading.

At the beginning of 2nd quarter, we started sending "the notebook" to and from school - the Communication Notebook. It's been a lifesaver for both PC & me and for SmallBoy's teachers. It has become something that we NEED...I need that notebook when I get home to find out what happened during the day; Mrs. M needs the notebook first thing in the morning to find out how he's doing, where SmallBoy's engine is, and how his spirits are, if he's having issues with homework, behavior, whatever.

The end of last week and beginning of this week were great. The only thing the notebook said was, "Great day today," or "Another GREAT day." I was SO excited, we were on a roll after coming out of a slump that, I believe was fueled by the bug that was visiting our house, anxiety about a test, and the stress around the house of trying to be in 12 places at once. The last couple of days, however, the notebook has said, "Great morning, but this afternoon at the all-school assembly, SmallBoy got upset when not picked by the presenter for an audience participant. Ms. B (the principal - also a lifesaver), had to take him out into the hallway and calm him. After the assembly, he joined us back in class." Yesterday, I ran into Mrs. M after work, we occasionally cross paths where we exercise....she decompressing from a day with high strung students, including SmallBoy, and me decompressing from a day with high strung students, a totally silly corporate system, and getting re-fueled to go home to SmallBoy and to play cab driver to all of Girl's sports (it's playoffs this week). Mrs. M said to me yesterday, "We had a FANTASTIC afternoon, but the morning was terrible. He's having a problem with being disprespectful."

I wanted to be surprised and say, "NO, not MY SmallBoy. He knows better. He has been taught to respect those in authority roles," but I knew that what comes out of an ASD mouth can VERY easily be taken as disprespectful, though it is not. Angry outburst, inability to pre-censor and think twice to rephrase and change the tone of voice....yeah, that can very easily be taken as disrespect.

I guess what happened was that Ms. R, the Social Studies teacher, had given them homework for that night, and SmallBoy wanted to do it right then and there. She told him that it was HOMEwork to be done at HOME. He was not satisfied and asked if he could go out in the hall and do it. She stressed to him, again, that this was classtime to work on the lesson, not homework time. I guess he then got extremely upset and threw a marker across the room out of frustration, and proceeded to have a bit of a tantrum.

We had a little talk when I got home last night. SmallBoy was very aware that what he had done was not appropriate for the classroom. I applauded him for being able to tell me WHY he had gotten upset (and identifying that he was, in fact, upset - AND SORRY). I asked him why he had behaved the way he had and he told me, simply, "Mom, I wanted to do my homework then, not later and I got angry when I couldn't get my way."

WOW!!He told me that he was angry and WHY he got angry. I was so happy I wanted to hug him and tell him how awesome it was that he did that, but it was time for me to play the bad cop. "SmallBoy, who is in charge at school?"
"The teachers and the other grown ups."
"SmallBoy, when you're at school, does anyone else get their way by throwing things, yelling, or having tantrums?"
"No."
"Does anyone else yell at the teacher?"
"No."
"SmallBoy, what did we just learn?"
"That the teachers are in charge, not me."

What a wonderful insight. Let's just hope that he remembered that past 8:00 this morning and then, was able to find that tidbit in the file cabinet of the Asperger's mind. I think this is something that should, perhaps, be a social story, or, at the very least, written on a notecard inside of his folder or desk.

Comments, suggestions, ideas? Anyone have a bottle of Pinot Noir?

Wednesday, January 24, 2007

Asperger's Online "Test"

Thank you for filling out this questionnaire.

Your Aspie score: 39 of 200
Your neurotypical (non-autistic) score: 163 of 200
You are very likely neurotypical

Perusing through my myspace site, I came across a bulletin from my friend Woofie Bones. Woofie had posted a test that he had found online. Out of curiosity, I took it.
Of course, it was easy for me to answer these questions, as it was clear what each question was seeking. I was surprised, however, by how many things I answered that could have been considered "traits". I'd like to have SmallBoy take this quiz, but there are some questions based on sexuality and how you feel about this, that, and the other that I don't think he would understand yet, without my explanation, and I'm SO not ready to go there - debunking the tooth fairy and Santa were enough, but not sex.
I may go back and answer from my home computer how I think SmallBoy would answer. You can only submit once from each computer, as it saves the IP address. Go there. Try it. Let me know what you come up with.

Tuesday, January 23, 2007

Adolescence & the Spectrum

Made you laugh, didn't it? Sometimes I need something absolutely hysterical like that to keep my head from drooping on the days when I feel totally overloaded. There are still many of those days, but as far as Asperger's is concerned, those days are coming fewer and farther between. While reading Kyra's post on Talking About Autism, I completely related to her feeling that somedays, she just doesn't feel like writing, because she doesn't feel there's anything to write about. I am, however, closer to a new aspect of Asperger's than she, and was inspired, by her post, to write about that - the OTHER "A" word - Adolescence.

SmallBoy is 10. Mentally ready for adolescence or not, it will be happening soon. Fortunately, I have the experience of having 2 children, one boy, one girl, go through this already, so I will be prepared and be able to read the physical signs - the hormone fluctuations, the changing voice, the skin issues, the moodiness - noooooo wait! That's something we see all the time. Moodiness, at least as far as we've experienced with SmallBoy, can be akin to teenage puberty moodiness. This leads me to wonder what other things we may miss or "gloss over" because we are so used to them as part of ASD and not take notice to them as what they are - warning signs of a teenager!

I'm tempted to reach out to those of you who have gone through adolescence with an ASD child and ask for advice or a list of "what to watch for," but, as well all know one child on the spectrum will experience and have different reactions to things than another. How then, is a parent to find their way through puberty with a child on the spectrum? The same way you got through early childhood - you feel your way, you lean on other parents, you ask for help, you vent, you celebrate, you question, you problem solve, until you've reached the point where Kyra and I are now...on an even enough keel to feel like you're above water more often than not. And guess what? When you get to that point, it will more than likely be time for your child to be hitting adulthood and all of it's issues.

For now, though, I'm not going to look too far ahead. I'm going to look at the strides we've made in the last couple of years and rejoice. I'm going to start looking ahead to the puberty years so that I can, at least for my own sanity, have SOME kind of an idea of what I'm about to enter. At the same time, I'm going to remind myself of some of the lessons that I have learned: acceptance, love, how to avoid a mommy-meltdown, and doing things for myself, for PC and me, and for Girl & LargeBoy. I am, though, open to suggestions, advice, anecdotes, horror stories of adolescent ASD....no time better than the present!

Friday, January 19, 2007

Cross Promoting Music & Autism Awareness

PC and I have, for a while, been wracking our brains trying to figure out a way that we can use our music to benefit autism and autism awareness. We finally figured it out. With our combined resources and networking from here and from our multiple myspace sites (North Country, PC's site, my site), we discovered there are a multitude of sources who can help us to organize a benefit, perhaps an afternoon or evening of entertainment, music, comedy, fun stuff! In that light, I'm going to repost our call for help in the hopes that all of you phenemenal folks, ASD parents, music lovers, etc....may have some ideas! Please feel free to send us your suggestions - we'll take as many as you come up with. Also, if you'd like to help, from near or far, we would be SO happy to have you on our team!

Cross promoting North Country & Autism Awareness

Hi all! I'm reposting a message from North Country , the band that my hubby, my bro-in-law, and I are in, in the hopes that perhaps somewhere out there, someone has the knowledge, the willingness, and the time and committment to help us put together a benefit concert/evening of entertainment to help raise Autism Awareness and do some fundraising while we're at it! Thanks for your support!
MommyGuilt

We here at North Country would like to thank everyone for joining us on our site,and welcome those who are new to the gang! We've gone through a lot of changes in the last month, some that can be really nerve wracking,and we can't thank you enough for your support!

We promise that, in addition to the video clip, we will have music up on the site soon. We have a gig Jan.27th and will use the live recordings on our site until we get into the studio. The live discs will be available to those who want them for a nominal fee. Keep in touch and we'll see you all really soon!

Also, we are interested in forming a benefit concert for Autism Awareness in the near future. Would anyone be interseted in helping out? Let us know! Until then, you know where to find us!
Thanks again!
PC