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.

Happy (Early) Thanksgiving

Yesterday was the Kindergarten Play and Feast and Mia's elementary school.  The kids were so cute, dressed up as Pilgrims, Indians, & Turkeys...  After their performance, they got to sit down to a mini-feast/party.  Mia was extra thrilled because both Mom and Dad were able to attend, and then we took her home a bit early.  Good times!

Specs...

Corey has come a long way in his journey with autism.  Things that were once impossible are now, to our amazement and delight, no big deal.  Corey's "autism doc" (http://drkendalstewart.com/) suggested it was time to have Corey's vision evaluated and to look into the possibility of prism lenses as they can help with focus, both visually and with mental focus and processing.  We did the eval (http://www.ocvt.info/), and got an Rx.  When we went to get the glasses, we knew that Corey had never been willing to wear sunglasses, silly glasses, etc. in the past for more than a minute or two, tops, but figured we could work on acclimating him to his new glasses gradually.  I let his teacher know what was going on and we formulated a plan for the acclimation process.  Turns out all that prep was totally a waste of time and energy - Corey simply started wearing his glasses and decided that he looks "handsome" and "smart" with them on - I can't argue with the truth, can I?  Funny thing is that another child in his autism class has glasses and has decided Corey's are cool and is hounding his mom to get him glasses like Corey's.  Funny kids!

Gotta love that Tooth Fairy

Mia was so proud to receive her first visit from the tooth fairy recently...  She was especially impressed because she got a letter in addition to her loot.

Time for Change...

We have been experiencing ongoing issues with school district Special Education transportation since the beginning of the school year, and have now come to believe that these issues will not be adequately addressed unless we escalate them to the School Board, Superintendent and/or higher authorities.

Children with autism and other disabilities are placed in the care of transportation each morning, with the trust that they will be treated with kindness and dignity and be delivered safely to school, and then back home in the afternoon.  These children cannot advocate for themselves and many of them lack the ability to effectively communicate any mistreatment they may receive. As parents, we count on the district to take the appropriate actions necessary to safeguard our children - screening and training of bus drivers and monitors, video cameras on buses, etc.  We expect to be able to communicate with our child's transportation staff, as needed, and certainly in the case of an emergency or other out of the ordinary situation.  These safeguards have broken down, and this problem must be remedied for the safety and well-being of the children in the district - those with special needs AND those with "typical" needs.

Prior the the beginning of the school year, as always, transportation is charged with coordinating bus routes and then communicating this information to the parents.  The procedure is for transportation to phone parents of the special needs children with the bus route number, animal or other designation, driver and monitor's names and the pickup and drop off times.  We need this info prior to the start of school so that we can have our special needs children prepared at the correct time in the morning, and also so we know our child is getting on the correct bus to be taken to their schools and handed off to the appropriate staff. This year, when I had not received this information as of the Friday before school started, I phoned the transportation office (again) to find out the plan.  After numerous prolonged "holds" I was given information, which I questioned as to accuracy because it was exactly the same as the previous school year.  After another prolonged "hold" to check, I was reassured that this information was correct, and I was all set.  I prepped my child with this bus number, animal designation and staff names and he was ready to start a new school year.  On the first day of school, to my surprise and discomfort, the bus showed up over 10 minutes late, different bus number, animal designation and staff than I had been given.  I almost kept my child home, but because the ladies had the correct information (child's name, school etc.), I went ahead and put him on the bus, with some measure of discomfort.  After trying to call the transportation office for approx. 3 hours and only getting busy signals, I fired off an email complaint/request for info clarification to the Director of Transportation.  When I hadn't received any response by the next day, I sent a follow up email, to which Director of Special Education responded that she fwded it to the Director of Transportation.  I still received no response from transportation until I sent a request for assistance to the superintendent and his executive assistant.  I do not think it is appropriate or reasonable that I have to go all the way to the superintendent's office before I can receive a response from transportation about a legitimate complaint.

On September 7th, the bus arrived for drop off over 10 minutes early, meaning I was barely back from picking my other child up from her elementary school.  I attempted to ask the bus staff about the timing and if I needed to be making alternate arrangements, since I had almost missed them, but instead of communicating with me, they shut the bus door in my face and drove off without a word.  This prompted a call to transportation, because (1) I wanted clarification on timing that was still totally inconsistent both morning and afternoon, and (2) because I thought it inappropriate that the bus staff should ignore me as a parent and drive off like that.  I was reassured by the Director of Transportation that this situation would be remedied.  Since my child's teacher is also my district representative, I also gave her a heads up on the situation.  The following morning, the bus staff was still non-communicative with me, but I let it go to give them a chance to improve.  My child's teacher managed to ask them about the timing inconsistency and they told her that they had already spoken with me about this - a bold-faced lie.  To make matters worse, instead of trying to open a real dialogue with me that afternoon at drop off, they chastised me, to the point of shouting about not talking to them about the issue.  I politely reminded them that they had not given me the opportunity, as they had shut the door in my face as I was speaking to them, thus leaving me no other choice than to bring the matter up to management.  It was at this point that my husband and I decided that a change should really be made in our child's transportation team.  The lack of communication, inconsistency of timing and the deceit were all contributing factors.  If the staff was lying about this, what else might they lie about?  Our child's disability prevents him from fully reporting back to us his experiences on the bus, thus leaving us in a situation where we could not in good conscience just ignore these issues.  We formally made this request to the Director of Transportation on 9/9/10 via both email and phone message.  After receiving no response after repeated follow up, the Superintendent's Executive Assistant put us in contact with the Deputy Superintendent who oversees Transportation .  I was able to connect with him on 9/14, we spoke and he investigated the issue.  Unfortunately, my request was denied. 

The Deputy Superintendent assured me that the staff was being counseled about improving communication and consistency and we had no choice but to try to work with what we had.  Our child's teacher even made a communication log in hopes helping the staff better communicate with us.  We observed no change.

On Monday, 11/8, things went horribly awry.  My child vomited at some point on the bus ride home.  When the bus arrived, the monitor escorted me onto the bus and to my dismay, I found my child still buckled in, covered in (already drying) vomit, softly crying.  They had not so much as offered him a paper towel to wipe his chin.  When he saw me, he told me it was "gross" and "disgusting" and that he needed help.  I asked the staff if this had *JUST* happened, and they replied NO.  As much as I wanted to lay into them about my disgust with the situation, my priority had to be helping my child who was miserable and asking for help.  Once I got him inside, cleaned up and comfortable, I sent an email complaint to the Director of Transportation, the Deputy Superitendent and my child's teacher, following with a phone call/message for the Director of Transportation.  After some follow up, I was told that they launched an investigation.  We learned that the video on the bus hadn't been working for days (I don't know how long), and the bus staff changed their story when questioned and stated that my child had vomited as the bus was pulling up to my house.  The fact that the vomit was already drying on my child's chin tells me that this was another lie.  

The one bright spot in all of this was that the Director of Transportation finally agreed to switch Corey away from that transportation team (driver & monitor).  We committed to providing transportation for our child until the new transportation was in place, as we could not, in good conscience, put our child back on a bus with that team.  We now have our child on a new bus/route and I can state that they are WONDERFUL.  They immediately set out to put my child at ease, and actively engaged him - we are so happy and relieved.  This the kind of team that needs to be in place on these buses.

This school year, our child went from loving riding the bus to hating it.  Already, he is feeling more positive about the bus again - further reinforcing to me that the former team is NOT a good one.  Since the incident, my child has experienced regression in the area of self-care/toileting, something we always battle against in the world of Autism.  Clearly, this incident affect him negatively, and I don't know how long it will take to completely leave it behind.

Since all of this happened, I have been speaking to other autism parents in the district and have learned of at least 2 other incidents in the district SpEd transportation recently.

1)  On the same bus, same day as my child's incident, another child ended up with significant bruising around her waist from her seatbelt after falling asleep on the ride home.

2)  A non-verbal 11 year old autistic child vomited on the bus and was given little or no assistance, thus mom went on board the bus to get him cleaned up and inside his home upon arrival at his residence.

After all of this, I sent an email requesting that transportation do an inspection on all video equipment on these buses - it is there for a reason, to protect the children and also the drivers - if it is not functional, everyone is left unprotected.  I have received no response or acknowledgement of this request.  I also feel strongly that the team in question should NOT be transporting special needs children, as they are clearly not qualified to do so.  My child has friends/classmates still in the care of this driver and monitor team, and I can't help but worry about those children and their well-being and safety.

These are the questions that I think need to be answered by the district:

• Are these drivers and monitors being adequately trained and screened for work with Special Needs children?
• Will the district now be doing a thorough inspection of video surveillance equipment on all buses in the district?
• Why would the district put monitors and drivers together that may not speak English well enough to communicate with the parents of the children in their care?  Putting children with communications issues (autism) on buses with staff that cannot or will not clearly communicate with parents and teachers is a recipe for trouble.

Now, will the administration adequately address these questions?  Stay tuned...

A political rant...

Why is it that political party leadership in this country (both Left and Right) are the most extreme representatives of their respective parties?  The leadership for the left is SOOOOO far to the Left and the leadership for the right is SOOOOOO far to the right.  Most "regular" citizens in this country, however, appear to be much more moderate in their leanings.  Most "regular Joe's" don't subscribe to the extreme agendas, but are forced to choose the side/candidate that feels like the lesser of two evils when election day arrives, and just have to hope and pray that this latest batch doesn't f*** things up too badly.

How do we go about firing them all, and start the parties back up fresh, no bulls***.  Let regular, qualified, people step up, pay them a reasonable salary for their work and time while expecting them to be accountable for their actions.  When their term is up (or the taxpayers fire them), they can go back to regular life, get regular jobs like before and move on.

I know, I know - crazy talk, right?  Logic has no place in politics.  What am I thinking?

I'm Baaaaaaacccckkkkk!

Did you miss me?

Not to worry, I am back.  Its been a whirlwind since last I posted.  Many good things, some bad things, too.  I have been keeping my thoughts over on good ole facebook, but now, I think, is time to get back to the blog.

Stay tuned, folks...