DAKS OPEN DOOR-JOURNAL

Again my optomism kicked me in the ass---I guess I thought that maybe the Chaffey Joiny Union High School District might--just might--do the right thing--OH SILLY ME! 

Now I will seek out and find a pit-bull attorney to help me --- I will not take my marbles and go home. Its about Dakota and whats right for him as well as others-I will press on  I am naming names and I am pulling out all the stops-- I have gone to the television stations and a couple of Stae Senators-- next are the newspapers.Hopefully I can fix this---   Here is the explanantion as briefly as I could write it---                                        To Whom ever Will Listen and Take Interest;

I don't know where to go or whom to talk to but I need help and I willing to ask anyone who can offer a positive solution--- This involves a School District, the promises they made to my son who is Autistic along with several other Anxiety Disorders and a situation that I believe is unfair, potentially unlawful and plain ridiculous.

My son will turn 22 in September and is technically "aged out" in the eyes of the Chaffey Joint Union High School District. This is according to their interpretation of the California Ed Code 56026[c][4][B]and more importantly [D].

For the past 2 to 3 years when we held our IEP's {individual education plan} there has been repeated discussions about Dakota's completion of school and graduation. During these meetings we discussed over and over about the fact that Dakota's birthday was in September but "protocol" within the CJUHS district has been that if a students birthday occurred after the start of the year that student was allowed to complete the semester he was in---{and there is at least one student I know of that in fact did just that 2 years ago I believe there are several others I just don't have their names}
Over and Over again the district told him "You will be able to go thru Fall 2008" and "Complete school in January 2009" He repeats this quite often at school as well as home---It is his mantra---his plan---his schedule---his routine. It is programmed into his head like a hardwired electronic device.

On July 31st 2008 I received a letter from the CJUHS district stating that Dakota could not return to school --- 25 days before school starts. I immediately contacted CJUHS district to try to straighten this mess out---surly there must be either a misunderstanding.

There had been no exit strategies planned, no exit IEP's written, no transitional goals written. No participation in the senior activities like the Senior Breakfast and the Senior Luau, No preparation for walking in graduation June of 2008 and no Certificate of Completion. As a matter of fact I contacted the Vice Principle in charge of Special Education Sandra Cooke on the campus of Alta Loma High School in FEBRUARY 2008--- 3 different times to inquire how Dakota's graduation would be handled since he would be attending first Semester in Fall 2008-Not once did anyone from the school or the district contact me to dispute that Dakota would return in Fall 2008 AND I was told {by Sandra Cooke} that since he would be returning in Fall 2008 he would complete his semester first and participate in all the activities June of 2009.

In the past 30 days I have been turning myself inside out trying to "reason" with the district to do "the right thing". Repeatedly they have taken the position Ed Code- is Ed code and Dakota is "aged out" He CANNOT return to school. I was summoned to a "mock" IEP to discuss Dakotas situation - on the agenda it clearly states Dakota cannot return --- a decision made before the meeting even convened-a violation of law; I was not allowed to present all my evidence of exceptions in the law that could be considered as a way to allow Dakota to complete his school as planned-again a violation of law; and there were no decisions made by the "team" they all sat there and let the district do what they intended to do. I refused to sign this "IEP" and went home devastated. What will happen to my son when he learns that he can't go back to the place he has been promised and looking forward too?
I then contacted the Assistant Superintendent Bill Bertran and asked for the district to reconsider this absolutely horrible decision. I also presented additional evidence to support the possibility of an "open door" in the ED Code that would allow Dakota to finish his semester as planned. California ED Code56026[c][4][D] where it states in the second half of the provision that the eligibility dates cannotbe extended SOLEY on the BASIS that the individual did not meet his goals or objectives----
Meaning that they could extend them for other reasons-In my interpretation. It does not use the word "Inclusive" which would then indicate no exceptions. Mr. Bertran agreed that he understood how a person could read that interpretation but he had to take it to the "council"-including the Superintendent Mathew Holton and 4 other "cabinet members"---2 days later I received a phone call from Mr.Bertran indicating that they looked at this and decided that they still would not allow Dakota to return to school-that they felt that if they did that it would set precedent-{hello they already did it in years gone by} Again I am in disbelief.

I now have filed a Due Process and filed with the office of Civil Rights again with the hope that this would place Dakota in a "stay- put" mode allowing him to remain in his classroom until the matter was resolved AND again the District is refusing to allow him this placement - another violation of law.

I am at my wits end and I need help.
I need a champion; I need someone to understand that this is a young man who will be severely affected by the actions of this district and their failure to deliver as promised---
Its one Kid and one Semester--- It is that simple

What has happened to making decisions that benefit the individual? Why are they so adamant about this? It seems like there is more to this than meets the eye.   
Is there anyone out there able to help me??

Thank You for Your Consideration

T

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Well I had my meeting with the Assistant Superintendent this afternoon and I have to say that I am "Cautiously Optimistic"

Although it feels like I have been beating my head up against a wall up to this point I actually feel that this time I was able to provide an opening that could allow the district the ability to acquiesce .

No harm No foul  just do what I see as the right thing----I will have word on their decision Thursday  I will keep you posted. 

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I wont elaborate about whats going on just yet-- But AGAIN I find myself in a battle with the school district--

It has consumed the past few weeks and I have been basically unable to concentrate on any thing else--- there have been meetings,phone calls and emails and each time I think I have it cinched up and it falls apart again--- I am making one last attempt to resolve the matter with the superintendent or the assistant superintendent the begining of this week and if I do not succeed all hell will break loose--This is one last semester for Dakota and although there is a part of me that says I should just "cool my jets" and forget it--- It is not my nature to allow the nonsense that seems to be unfolding------

STAY TUNED! 

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Following the "Be Careful what you wish for" entry  just had to add this little tidbit!

In March there was a pep rally at school --which the kids received a wristband to designate the appropriate time they attend the rally. After it was over Dakota wanted to leave it on--OK no harm No Foul--{yeah right} In April he had to have another surgery and they needed to put a wristband on while he was i the surgery center so trying to be creative and not "upset the apple cart" I made arrangements for them to put it on the same arm ---{boy was I going wrong at this point} Along comes May and there was a special dance Dak was to attend and VIOLA  another wristband--That's right now we have 3 --OH HOW CUTE----------N O T !

Summer had come and these damn paper like bracelets are still  on and causing a royal pain in my --you know what!It has now become and OCD thing --he absolutely is not relinquishing possession of these wristbands-- they are getting dirty and grubby and I want to cut them off but he is freaked about loosing them. They have also impeded him from swimming --he will not get in a pool and he is very touchy even about a shower---which is where I draw the line. When he showers the one arm in bent at the elbow and does not get washed from the elbow to the fingers.

You might say cut them off  I have in fact tried in the middle of the night and he has awoke from dead sleep to find me with scissors and he flipped out. I even went and bought new wristbands and tried to negotiate replacing the old ones with new ones    NO DEAL. I went so far as to buy a masculine silver bracelet and tried to reason with him that he could wear this all the time and swim or shower with out worrying and he just will not budge-- it is certainly a case of be careful what you wish for --I have been trying to get him to wear a medic-alert bracelet for years and I thought oh how cute maybe now I can get him to wear one of these

HA HA HA HA HA HA HA  The joke is on me

Yesterday I drove all the way down to the beach and I could not get him out of the car. he refused to even touch the sand for fear that I would try to get him to go down to the water and ruin the bracelets--It is driving me crazy but i guess when others are dealing with things like kids digging into their diapers and flinging poop --I don't have anything to complain about!

I can tell you one thing when those bands come off THAT IS IT. There will be no more wristbands  if I can control it .In the future if it is necessary for something like a concert before we leave the venue that band will be off! I have certainly learned my lesson.  

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In the Autism community where I "hail" from there is a saying "Be careful what you wish for" ---with our children we are always wishing or hoping or thinking if only our child would do this or that--- wouldn't it be nice if they could wake up tomorrow and be "normal": WHATEVER   N O R M A L   IS !

What many of us have found that often times this "train of thought" backfires! Mostly with behaviors; many of the people I know who live with Autism have fought to interrupt and redirect a behavior only to find that; the child will replace that behavior with one that is even more annoying or destructive.

One of my mentors  warned me of this situation early on and it has become almost something I have to laugh about when I find myself succeeding at "conquering" a behavior. Because Dak has replaced it with one that is even more irritating!

The rule of thumb is to assess the behavior and decide whether you and your family can live with this ritual and whether or not it is a self injurious behavior. If you can tolerate it  --My advice is leave it alone --believe me it will pass--It may be 2 or 3 years but it will go away E V E N T U A L L Y. I know it seems like a lifetime but one day you will realize POOF  it's gone. The only "ticks or behaviors" I do battle with are self -injurious . If the child is beating his head into a wall, ripping the cuticles from his fingers or {my personal favorite} twisting the hair out of his head --you really must address these. It wont be easy and you may not succeed in a timely manner but I maintain that if you stay at it be consistent you will prevail!  

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I choose that song title because it has such a broad -base meaning--- Its from Supertramp 's album "Breakfast in America"

I guess I find myself sitting at this dumb machine in the wee hours of night ---Its really my time and I have discovered that this is my time and my element . Conditioning from work --perhaps; but I think more so the absolutely love and romance of the night. Also having a child with Autism can dictate when you can get time for yourself and often times it is when they have crashed and burned for the day.So you take the chance that they will stay down long enuf to indulge a little "guilty pleasure " and still have time to catch a few zzzzz's before another day breaks.

I have to admit that sometimes it feels like there is no light at the end of the tunnel.It can be exhausting and emotional. Often times the reality that you will never experience the "empty nest syndrome" is sad.   - Then you sit up and take notice of just how lucky you are to have a kid that doesn't break curfew. and doesnt walk around with his pants down around his knees and you think "hey how bad can life be?" I wouldn't trade my guy for all the "typical Kids in the world. Oh sure it would be nice if he would participate in a sport or music program or want to go to a dance or do some art  BUT again he is an individual with his own likes and dislikes and there are plenty of other kids who don't do those things either--

Again I kinda get off subject-- I was heading toward the self loathing and guilt aspect and BOOM I got side tracked--- My thought or topic was  stealing away moments for myself and the guilt that comes with it.

Most everyone I know says you have to have some me time -- you need adult time  --"How can you function properly if you don't get some time to yourself?"  I find that when  I take an opportunity to have me time the guilt overwhelms me -- I should be doing this or that--- What have I forgotten to do??? etc etc There's laundry, there's dishes, I need to call here or I need to make an appointment there---It drives me crazy. The most important thing I have discovered is that I will end up doing nothing or worst procrastinate  when I get in to this mode. I cant tell you  how many times I have found myself doing nothing simply because I feel guilty for doing something other than for my son--- What a load of crap is that???No one wins

So even in the quietest moments I sit at the computer and write hoping that my "adult escape" will purge my guilt but more importantly help someone else to not make the mistakes that I have! 

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Well I have certainly posted enuf "bitching and frustration " so I guess its time to move on for now---

My son has become "the Transporter" Its is the funniest thing. Dakota was never a child that crawled into cupboards or dig into closets. He was not a climber or a seeker. He never bothered things on a coffee table or explored the kitchen. As he has gotten older he has become unusually insistent on having something--ANYTHING in his hands at all times!

The item of choice seems to be a tube of any substance hair gel toothpaste shampoo. Or the other preferred item is a plastic bottle of any thing that shakes--- Again shampoo, bath gel ,mouth wash anything that shakes and makes noise and bubbles--Often times I find him with several items in his hands--which can include perhaps a comb ,a writing pen and toothpaste in one hand and a bottle of body wash in the other-- Its quite comical and intriguing to me the combination of items.

What I have notices with this obsession is that things move all over the house-- we have on room that has a variety of strange items in it and one day you walk out to the kitchen and there's a small candle sitting on the counter. Or you go into the bathroom and find a coca-cola bottle--?????

The biggest obstacle is that sometimes when you go to use something that was always in the same place is gone ---The first words out of my mouth are Oh "The Transporter has struck again!"

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I have intended to post about my stressful Fathers Day weekend and just kept putting other things in front of it and now the details are a bit foggy for me----Most who know me; know that I am really not one to hold grudges. I get mad or upset but I am usually pretty easy to let something go. I have just found that practice to be beneficial for my well being and bluntly put I have to consider the others I live with before myself. I don't expect anyone to give me a silver star or commend me for being selfless it is more       self-preservation!

I also attribute my foggy memory to  progressing age. More "senior " moments seem to occur more frequently although I refuse to accept that condition lightly. "I feel 18 as long as I don't look in the mirror" HA HA 

All that aside this past month has been pretty overwhelming and there were moments  when I really thought I was at the "brink " Fathers Day Weekend was one of them.

Essentially what happened was that Dakota had an altercation with his Dad the week before and he was anxious and upset about going to see his Dad -- On top of it he and his grandmother had several "run-ins" over the past week or two and LIFE was just HELL all the way around. I could not control his environment and every where I looked things were falling down around me so I BAILED.

I am not one to do this but I felt like Dakota and myself needed to de-fuse . I simply took a detour to a hotel and camped out for the night! Things were not right at home and going to POPs was not an option so we honkered down at the hotel. We went out and dinner picked up a couple of snacks for the evening went back to the room crawled in bed and rented a movie! We slept in till it was time to check out and then made out way back to the house.

Of course I had managed to get on grandmas "shit-list" but I really didn't care --It was what Dakota and I needed to get somesanity back into our lives and I actually think it made a fresh start for us cuz since then it seems to be a bit more manageable--I am sure that will fade  but for the moment just that one little thing made a world of good.

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I don't want this to sound snobbish or narrow minded but sometimes it seems like I am the only one who truly understands my son. I know anyone who has read the past few entries about Dakota and his "antics" with grandna probablyy got a good belly laugh . I even have a very close friend who wrote me and told me that she, too had a similar experience with her children and when she read my of my fiasco she could not help laughing out loud.  Getting back to my point that many can relate to circumstances but when it comes to applying "learned" strategies of coping with "Attention Seeking Behavior" all bets are off when you are in the "heat of an episode" {as my mother would call it}

It becomes a real talent to stop and re-group when you are between an autistic individual  and a senior citizen squaring off for a "showdown"-- The big problem is I have actually learned how to control Dakotas environment {too and extent} in order to defuse most behaviors and situations BUT the real  challenge is my mom - the senior.

Grandma has spent the last 20 years in very close proximity to Dakota. She has attended every meeting know to man and has graciously been here { I take great liberty with this statement} working with me to give Dakota the best that he deserves. She knows about what "sets him off and how to handle most situations but occasionally when the "shit hits the fan" all bets are off . And it does seem like as she gets older it is more often.

I have to qualify this behavior does not only apply to her but to his Dad and even sometimes me! Lets not forget all the "professionals" -- I have seen even they : in their finest hour-- can loose their cool and/or concentration and mis handle Dakota. I know this is not the only household and it is not exclusive to Autism and the families who walk this journey.It just seems more intense , more prominent because of the disability components-- I look at Dakotas life as a learning experience for me and every day I can  put another "tool" in my tool belt so when the day comes I have the means to interrupt and re-direct the behavior to avoid  the next major tsunami. BUT for some reason  others just don't seem to have the same ability to STOP; TAKE A DEEP BREATH; THINK A MINUTE  AND THEN EITHER ACT OR IGNORE.

I actually started this excerpt to tell about my wild weekend {Fathers Day}{which I will  do}to more of a commentary on how to hopefully avoid or address behaviors How people with their greatest intentions and love for an autistic individual  can totally undermine a situation if they don't continuously remind themselves what works for each individual---For example when Dakota does something stupid like pour goop on grandmas head the less you react and the more you ignore the faster you will defuse the situation and he will return to us in afew minutes when the "static has calmed in his  brain".But the natural reaction of most folks is to get mad and get even -- we all have a tendancy to take things too personally instead of remembering its a Big Bad Boogie Man in his head that HE  has NO CONTROL over it! I am no angel and have occasions where I re-act in appropriately but I am trying and find that I am getting better -- DAMN I should after 21 years --right?

The hardest thing for me is when I hear his Dad or Grandma{even me sometimes too!}  react with words like "he's old enuf to know better" ; "he knows what's going on"; "he's no dummy" ; "he has the ability to know right from wrong". All these statements are true HOWEVER-- Although  Dakota is very intelligent and can be the most precious child and young man on earth and I would even argue probably<SPAN id=sp-35 title=" ay, by, cy, my, yd, ye, yo" style="BACKGROUND: url(undefinedimages/bg_spellingErr.gif) yellow repeat-x left bottom; PADDING-BOTTOM: 2px; COLOR: #000" _backupTitle="null"> a much better son than most young men on this earth most of the time  he still CANNOT control what he knows is not right ---THAT'S AUTISM    DUHHHHHHHHHHHHHHHHHH

It is incedibily amazing when you see  a kid progress and make milestones strides and your refer to him as high functioning an how he has adapted so well; CRASH AND BURN.The funny thing is more times than not we fan the flames because we cant get beyond our own natural  deficits to  react in the way we were molded. Its no ones fault But we have to be the ones to step up  and say "Hey He's the one struggling with the crap in his head  so I have to put to good use the social behaviors God gave me to understand him and make life betterfor him" .Sometimes that means recognizing and  respecting the Autism . Being the bigger person and not taking things personally or the way things 'SHOULD' be-- Because  on the path of this lifetime journey there will never be any rest! It is a lifetime marathon. One to make life a little bit more enjoyable for our babies!   

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Well summers here and bugs abound---I posted this on a couple of the groups I am on but for those of you who read here thought I would share with my own audience---haha

Please excuse the cross posting but I will send this to a couple of groups so more people can get the info---

Ok I know several of you have issues to tackle with your children tactile, allergy, scent,and lets not forget gut
So with summer upon us and many of us trying to get our kids out and active I came across a couple of "helpful hints " that I think will work for most of our kids when it comes to avoiding the dreaded bug bite!
1. Bounce dryer sheets they are so efficent warding off mosquitos-- I have even gotten emails that say that they are good to get rid of ants too---BUT I cut the sheets into 1 or 2 inch strips and tie them to a belt loop; or onto a shoe or flip flop; in the pocket of a pair of shorts especially if they have velcro you can velcro it on ; stick it in to a zipper or on the wrist underneath a watchband--- I am telling you we were in Guerneville on the river and not a mosquito bite on all 3 of us!
2. A new email circulating is saying that Listerine is excellent for basically the same thing-- Use a small sprayer bottle and spray the area you are picknicing in .the swing area where the kids play -- also on a deck or patio area   NO MOSQUITOS
I have not tested this on out yet but its worth a try

I know our kids needs protection and sometimes the deet and other bug sprays are toxic and quite frankly irritate our kids--

OK "Heloise" is out of the house
Hope this might help someone!!!!!!
Cindy

and for a PS my strife continues with Dakota-- this past weekend was the weekend from Hell-- once again I make a reference to Hell but for some reason it seems as if puberty ,raging hormones and behaviors have reared their ugly head and dont seem to find much comfort in a peaceful environment--More to follow

Perhaps when I can write in the middle of the night without interference!!!!!

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