Negotiating? Well - that's one word for it...

This is one of those good news/bad news scenarios...  The good news is that I finally heard back from the district after my latest letter... The bad news is that they are not (yet) doing anything to satisfy me.  I received a letter responding to my questions - sadly the responses were a bunch of platitudes and a refusal to act.


My first issue was with their response to the training/screening question I posed... I received a copy of a powerpoint used for training of transportation staff for transporting kids with special needs.  The section on autism was woefully inadequate, to the point of being counterproductive.  One bullet point states that the kids with autism don't understand what they (drivers and monitors) are saying to them.  This is so far from reality, as those of us living with autism can attest.  Giving the staff inaccurate information like of this sort does both the students and the staff a huge disservice.  If this is the sort of training materials being used to prep staff to work with special needs kids, I can see why there are issues.


Second, the response letter stated that due to some of the staff not being native english speakers, they do not interact with parents as easily as native English speakers.  (True)  Next it stated that this does not mean they do not communicate - this is where one of the major problems is - some of these staff members DO NOT communicate with parents.  Case in point, the staff of the route that we removed Corey from.  Even after you district management met with them, even after my child's teacher tried a communication notebook to make things easier, there was still no communication from them to me.  The communication difficulty was clearly evident the day of the incident when the monitor could not effectively communicate to me that my son had vomited - she came to the bus steps and told me he had "throwed out" - I had no idea what she meant - my first thought was that she meant he had removed and discarded his new glasses (it was the first day he wore them to school).  I didn't understand that he had vomited until I was on the bus and saw him myself.  Clearly, she was not capable of communicating effectively.  It seems obvious to me that someone in this position MUST be able to communicate effectively with parents and school staff, especially when they are charged with transporting children with communication disabilities.


My final point of concern is the district's refusal to inspect the surveillance equipment on the buses.  For all I know, ALL the cameras/recording devices are broken.  One of the reason's the district gave me to give the driver/monitor team another chance earlier this school year was the reassurance that there were cameras on the buses, and surveillance footage could be pulled in the event of an incident, etc.  The letter I received states that the district can't afford to check the footage daily, which I never suggested - I understand that this is unrealistic.  I simply requested that each bus be checked asap for functioning equipment.  I would even volunteer to do so, at no charge to the district.  If all is in working order, a regular schedule for inspection should be workable, though once a year seems far too lax for a safety measure of this sort.


Well - the input above is basically what I sent back to the district Superintendent and Deputy Superintendent.  Let's see what they have to say next... Stay tuned!
  

Does Dietary Intervention Really Work? Yep!

Many, perhaps even most, children with autism have some degree of food intolerances and/or allergies.  The offending foods create an immune response in the body, which can wreak havoc in the GI tract, and everywhere else, including the brain.  Kids who don't exhibit any outward GI symptoms (or can't communicate them) may have still have issues with mental acuity, processing, hyperactivity, aggression, sleep issues, and so on.  Many mainstream doctors dismiss dietary intervention in kids with autism, even though there is plenty of evidence out there to show that it can be very effective.

Corey has been on the GFCF (gluten free/casein(dairy) free diet for 3 years now.  In this time, he has made tremendous strides, not only developmentally, but also in his overall health.  He is eating a healthy, well rounded diet, has energy, sleeps well and is all around a happier and healthier kid.  With the addition of Dr. Kendal Stewart's (http://www.drkendalstewart.com/) protocol of antivirals (for a while) and nutritional supplementation, we are seeing even more changes for the better.  Last year, we did a fresh, more comprehensive allergy panel on Corey and found that he had a number of additional food allergies/intolerances that needed addressing.  It wasn't easy, but we cut out a bunch of offending foods for a solid year - soy, yeast, eggs, berries, citrus, turkey, peanut and many more...  Baking was tricky, but I worked through it, reinventing many recipes.  I am thrilled to report that we just did a new comprehensive allergy panel and got the results back today - and they show HUGE progress.  Corey's body is healing and along with his healthier, stronger body, comes his developmental progress.  We are now able to add a bunch of things back in, and can see that others will come along in time, as their reactive levels are coming way down.  It is really amazing.  When the body is working better, the brain can function better, too, thus leading to more and more developmental progress.

We still have a long road ahead of us with Corey and his autism, but we are on our way.  

Winter Wonderland

One of the fun things about living in Teravista is the Winter Wonderland Event that happens each year.  The association brings in a truck to make a bunch of snow onto a hill for sledding and snow play fun.  Since we don't generally get much in the way of natural snow here, it is a special day for the kids, and much anticipated each year.  As always, the kids had a wonderful time.  Mia even did some sledding solo this year, and also some runs with school friends.  Corey isn't much for going down solo, but he has a blast hitting the hill with mom and dad.  A great time was had by all.

Growing up and branching out...

Really?  Did I just hallucinate dinnertime with the family?  Surely my kids did NOT both eat chili for dinner...

For Corey, it is remarkable because of his autistic sensory issues with food.  Since he was a preschooler, he has been refusing anything too soft, creamy, squishy, and instead going for finger food type stuff...  No mashed potatoes, ice cream, etc - nothing that would require a bowl and/or spoon.  All of this stuff was declared yucky, gross, etc.  Until recently, he was NOT willing to branch out in this arena.  Now, with some prodding, he has enjoyed beef stew recently and now, home made GFCF (etc,) chili.  Wow.  The progress we are seeing in him these days is just amazing.  In the wonderful world of autism, these small things are BIG things!

With Mia, the idea of her eating chili is laughable.  She has always had "Minnesota" taste buds, reporting that anything even called "mild" is WAY too spicy, even things that most people don't even think about being remotely spicy.  Now, all of the sudden, she is LOVING chili.  What the?  When I asked her about it, she simply reminded me, "I'm ALMOST 6, now, you know..."

Wow - my babies are growing up.

Mmmmmm... Let them eat Pumpkin Pie!

Trying a new recipe for pumpkin pie this year, courtesy of the Gluten Free Goddess.

This pie is gluten free/dairy free/soy free/egg free and it smells AMAZING.  I can't WAIT to try it tomorrow.  Think anyone would notice if I stole a slice tonight?  :)

On Being Thankful...

At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.
-- Albert Schweitzer

This Thanksgiving, I am reminded of all the people in my life who rekindle my light, when I find myself in need of a spark.   Life presents me with many challenges, and honestly, I don't expect that to change. But - I find strength and joy in faith, love, family and friends. My children are such a huge blessing and challenge for which I will be eternally grateful, even on those days when they drive me to drink.


I am thankful for the lessons learned and the experience gained, and for the opportunities I have to share these gifts with others.


Finally, I am thankful that I found a partner, husband, best friend to share all of this craziness with.    This song (from The Wedding Singer), pretty much sums up how Joe makes me feel safe, supported and loved.  Uncle Chris played this song as part of our wedding festivities back in 1998, and it makes us smile whenever we hear it.


I wanna make you smile whenever you're sad 
Carry you around when your arthritis is bad 
All I wanna do is grow old with you. 
I'll get your medicine when your tummy aches. 
Build you a fire if the furnace breaks 
Oh it could be so nice, growin old with you. 
I'll miss you, kiss you, give you my coat when you are cold. 
Need you, feed you, and even let you hold the remote control. 
So let me do the dishes in our kitchen sink 
Put you to bed when you've had too much to drink. 
Oh I could be the man who grows old with you. 

I'll miss you, kiss you, take your shoes off and rub your feet.
Need you, feed you, and when we play checkers i'll let you cheat.
So let me do the dishes in our kitchen sink 
Put you to bed when you've had too much to drink. 
Oh I could be the one who grows old with you. 
I wanna grow old with you. 


(by Robbie Hart/Adam Sandler)

New Aiport Screenings... Things that make me go Hmmmm

I have been reading a lot about the new airport screening procedures, particularly as they relate to children with autism and other disabilities. While it seems that things are going relatively smoothly for most travelers, this is not the case everywhere. There are (legitimate) reports of children being separated from parents, people not being allowed the choice to use (or not) the new bodyscanners and forced to submit to some pretty invasive pat downs, etc. There are reports of abuse and also those of flat out stupidity, both by TSO's and by travelers.

I do have some concerns about the screenings as they relate specifically to those with autism. First, many individuals with autism will not be able to be successfully scanned using the new bodyscanners due the inability to remain still long enough, sensory issues, anxiety, etc. These individuals, therefore, will be subjected to the new pat downs, with some modification for children under 12. What happens when a person with autism that does not tolerate being touched needs a pat down? These situations can easily lead to a meltdown, including combative behavior, on the part of the individual with autism. I don't think it is realistic to think that there will often be TSO's who will be adequately knowledgeable and trained to handle such situations. This is not going to be pretty, and folks aren't always going to understand that the person is acting out due to their disability and not because they are a jackass. Hang on to your hats, traveling public – this could get mighty interesting.

And, disabilities aside, are the TSO's being adequately screened and trained to perform these much more “intimate” pat downs? Are they being checked against sex offender registries, etc? Are they aware of how to be sensitive and appropriately careful when dealing with prosthetics, insulin pumps, catheters, etc? I have read that in some cases, due to lack of time and manpower, these TSO's were told to sign off on training that they didn't actually receive. Does this give anyone else pause, or is it just me?

I am all for safety measures, don't get me wrong. I don't really care if someone sees my “naked” bodyscan to confirm that I don't have a weapon or other contraband. Now, random adults viewing my childrens' naked scans – that gives me a little more trouble, but I guess we will cross that bridge as we get there. Hopefully, by the time we travel as a family in the summer, these new security procedures will be smoothed out a bit.