Holiday Confusion

Its Christmas time-- and I will not repeat myself but just a reminder that this is very difficult for many of our Autistic kids--- way to much stimulation!!
Lights and scents and crowds and caroling-- Bell ringers and stores that are in dis-aray , Just be aware that this is a time for unusual and unexpected behavior-
I know its hard for us but its even harder for our kids so befor you get frustrated with your babies-- remember they are having a difficult time coping too!

THE PHONE CALL !!!!!

WOW---What an accomplishment

A couple of days ago we gave one of Dakota's classmates a ride home. He left his sweatshirt in the backseat. We went on to a store and when we got back in the car my Mother said "Who's jacket is this?" Before I could even respond --Dakota grabbed my cell phone; searched out his classmates phone number; and when he answered the phone he didnt say hello or how are you B U T He said"Uhhhhhhh you forgot your jacket in our car---and we are gonna bring it back to your house--OK Bye!"

Oh My God--- this kid is not one to talk on the phone--{usually when he is attempting to talk on the phone he will use visual signals--like if someone asks him a questioninstead of verbally responding he will shake or nod his head and he thinks the person on the other end can see it??????}
He just doesnt get the whole concept of conversation--and to watch him intiate and complete this task was amazing----It was like I got to open an early Christmas present!

Again this is another one of those moments where I cannot emphasize how important it is to NEVER GIVE UP Because you just never know when another ray of sunshine will come out!

Autism after School

There was an inquiry by one of the "poster" on a web site about helping adults with Autism--AND SO MY RANT RAGES ON
An observation I have been making for the past 3 or 4 years is that there is very little if any thing out there
I will post my response rather than repeat what has already been written:

The one suggestion I would give is to contact the Department of Rehabilitation. Don't know what they require or if you would have to do an evaluation I would suppose that your Regional Center might be able to help BUT they too can be difficult to get on board--- UNFORTUNATELY this has been my lament for several years now--- So many of the parents on these web groups are at the beginning of the journey searching for info and support and potential bio medical strategies for their children who are very young --- AND THAT IS NOT TO DISCOUNT THAT --- But what I have been discovering is that there is so much more available to the early years and when school comes to an end its like they fall of the radar! You get to High School and you have done everything in your power to educate and socialize your child and you discover that they are still Autistic and there's very little; close to nothing out there--- Most of the "programs " out there after school are "warehousing" situations for young adults with all disabilities.There are a few junior college opportunities but no support like you have in lower education K-12.We all hope and pray that our diligence over their formative years will "rescue" them from an adult life of disability but in my particular case I am finding now that I should have focused much more on what comes after school . As they say hindsight is 20/20. Once they leave the High School campus there is no Special Ed Stater Bros. Market; there is no Special Ed Del Taco; there is no Special Ed AM/PM gas station or there is no Special Ed library for that matter--- My point is the community is not informed nor equipped to readily accept our kids without some type of recognition or accommodation. They become adults with very little visual indication that there is anything different with them. This is a challenge for us to find appropriate vocations and social situations. They are in a no-mans land of either typical or disabled and they really do not fit in either . Again just my observation and opinion.

I think this is why we do have adults out there that are older and not recognized or diagnosed. Years ago they just didn't make the distinction of a child who had a hard time socializing or learning -- they would just say that they were "slow" or did not "get it" and they were pushed thru our educational system and POOF they all of a sudden had to go out in the world and learn to deal with it--- I believe that there has to be thousands out there who are in this situation AND IT SUCKS. I truly believe that you can find help but you have to dig. Its not easy,and without a diagnosis it will be even harder for someone who is older and just discovering that they could use some support--

I know this is one of my worn out rants but it has become a bigger reality as the years go on and perhaps why I have this dream of a "Center for Autism" that embraces all facets of life --living with Autism. It should a YMCA of sorts encompassing vocational and social training but also helping siblings parents and professionals learn how to support those who live with Autism.
More on the center in future posts
For now I continue to look for alternatives for or children as they grow into adults!

Computer crap

I am having a time with this new journal---
When I was with AOL journals all I had to do is click and I was there now I have to log in and my brain is crowded with passwords and user IDs that I cant remember WOW "oldtimers" is setting in!
I made the mistake of trying to copnvert to this BLOG at least 2 other times several months ago-- what happened was when I tried to log on here to ad an excerpt I kept getting directed back to theother ones I started but never wrote much on--- Man-O-Man was I frustrated-- I keep saying its my age and computer "in-ept-ness"---is that a word---?
I was pissed off
Anyway I think I have found my way now --hopefully I will remember how I made it here so I can ad easily in the future!

Blood Work-- What a Challenge

When Dakota was barely out of the NICU we had to start blood work because of seizure activity--- After seeing all the ingenious equipment the the hospital had for those tiny babies I thought surely there would be "ingenious " ways to take blood from an infant.WRONG
The first time I went to the lab they sat me down and had me hold Dakota in my lap as they wrapped that wide rubber band around his tiny little arm-- Before it was all over they had to lay me down!

I got smart as the years progressed and made sure that the same lab tech-- Wanda was always available for Dakota. I would plan every thing-- The time of day when it was least busy or noisy and of course when all the other elements like no change in doctor or location were present --we would walk in and BAM it worked like a charm.

The seizures stopped and we no longer had to take blood and believe me when we had to think about blood work recently it has become
"a whole new can of worms"!

So I sprang into action--believe me it has not been easy but this is how it goes-
Once I know the doctor is ordering a test -- I inform him it may not be a timely test and that if he needs something immediately that he needs to make some kind of arrangements to possibly draw the sample right there in the room other wise we will do the best we can--- when we can----

Its starts with a visit to the facility perhaps when we are picking up a prescription--- and we just cruise by the lab---
Then the next time I stop and strike up a conversation with one of the lab techs on our second visit-- short and not obtrusive and I try to bring Dakota into the "loop"
Third time I had Dakota walk into the lab and say hi to the lab tech-- She looked at him and said aren't you ready to let me take your blood and he shook his head and ran from the room-- so went went home -- NO hassles
Finally on the fourth try and over a month later we walked in and she said
"OK go check in " and B I N G O He turned around walked straight to the desk checked in! What a tremendous feeling it was to achieve success.
He walked in, sat down, put his arm out and did not flinch!

We had a second run recently; although it was still a challenge we again had a positive outcome-- We ran into a bump where the lab order had gone dormant cuz it was taking longer than usual.When the stars had aligned and Dakota was willing to get tested they started to give me a problem about the lab orders--It was all I could do not to loose it . I asked to speak to a supervisor and explained the extenuating circumstances-- before it was all over the Lab Tech and her supervisor pulled a few strings, knowing the situation, and before I could blink Dakota and I were walking out with another "one" in the win column!

So OK its not easy; you have to be creative and you have to find what works for your child but believe me you will find away! Hopefully it wont be kicking and screaming. Again don't get stressed about it, find a way for you and your child to have a successful positive experience so the next time will be easier.
It can be done.

Further down the road--

After you have been traveling this journey of Autism for awhile you will realize that the "scenery" will change. What I mean by that is; what you focus on when your child is first born and diagnosed is different from the years you spend banging your head against the wall as you fight with the schools;then you realize that school is about to come to an end and you are faced with another challenge of social acceptance and community involvement not to mention having our kids ready to exist in this world someday without us.

I have spent hours and hours with many parents on several websites and support groups who are all at different places on the "trail". What you find is so many people in so many different situations all with different frames of mind and battles ensuing. So many are on the brink of nervous breakdowns or heart attacks because of the challenges Autism presents. Everywhere you turn it is a struggle. Regional Centers which were created specifically to HELP our kids and would not exist without having to service our kids, schools and school districts always unwilling to accommodate or provide what they should and of course other governmental agencies like IHSS and CDE that always present road block after road block before they succumb to helping you and finally there is the medical profession who should have some basic understanding about Autism but they never cease to amaze me how ignorant they can be----
Don't get me wrong I am not bad mouthing these people but most of them JUST DO NOT GET IT--and they wont or don't take time to learn about out kids before they try to "service" them.

Well this rant is going in a different direction than I intended when I sat down to write ----So I will re-direct and get back on track
My observation is this; as you travel down the path things change and it is so important to not let "a moment in time" to get the best of you-- You have to fight and you have to stand up for what you believe BUT : "This too shall Pass"

I reflect on several situations I beat myself up only to find that a year or 2 down the road what I fought so hard for was not even important anymore. I mean everything in its own way has pertinence but the level of importance has faded with age.

I guess what I am trying to say is that fight for what feels right; never let go of anything you know is important even if it is in the "moment" but don't bust a gut over it, because somewhere further down the road you will recognize that there is a new battle; a new issue; a new horizon to conquer. Try not to focus so keenly on the present and be more accepting of the broader challenges of tommorrow. I think its a much better plan for you and your child.

It's all in there!!!

One of the most perplexing things about this disability is the ever present question of what computes and what eludes our children---For the most part as you grow with this Damn Autism you realize that your child has a lot more going on than any one wants to give him credit for---

There are professionals and educators who continue to politely "placate" your insistence that your child "gets it" or knows more of whats going on than any of us think.[wink ;-} wink ;-}]

Well I have two short stories to again prove that damn "pros" wrong!

Over 1- years ago Dakota came home with the first and only joke he has ever told me --
Do you know what time it is when an elephant sits on your fence?
Time to get a new fence--hahahahahahaha

A couple of weeks ago on "the Price is Right" Rich Fields the announcer was doing the showcase at the end of the show and they used this joke with a twist---he said "Do you know what time it is when an elephant sits on your piano?" "Its time to get a new Baby Grand Piano"
WELL the look on Dakotas face was priceless-- he heard the joke and got a look on his face and he said "what the hell they used MY JOKE!"
I could not believe that he not only understood the joke but the fact that they tweaked it for the show and he referred to it as "his joke"
just floored me-----

The second incident was funnier yet----I have a pretty messy house but I have one rule-- as much as I love our dog --she can go anywhere in the house EXCEPT the bed---Well I was out in the front of the house and I heard my Mom getting after Dakota about the dog being on the bed. Of course I started hollering for him to get the damn dog off the bed and the more I hollered the more he laughed and decided he was not going to do what I asked him to do---- So I went back and removed the dog and left the room. About 10 minutes later I went back there to talk to him and check to make sure he had not put the dog back up on the bed and he looks at me and says " Mom when you are dead and in the ground then I can put Carmen on the bed!"
O M G I was so stunned I did not know what to say
It was so profound that not only was he responding the way a typical kid would but the fact that he had an understanding of the rules and just how he would manipulate those rules once I wasn't around anymore.
It was his ability to utilize a thinking process that most seem to believe he does not possess--
It may have been a small window of clarity or it may be something ever present but the point is
AGAIN NEVER NEVER GIVE UP and NEVER NEVER allow someone to convince you that your child will never learn or possess that which you know it possible!
Its all in there---- sometimes you just have to wait for it to surface!

Time to get back into the saddle!!!

Well the shock and adjustment have settled down i my brain so now it is time to start writing again---
I have had a lot of thoughts and wanted to post but as life goes things have been a bit busy and overwhelming recently ;
Hopefully I will get into a rhythm soon!
Between Dakota returning to school, Halloween and colds and flu the past week or two I found myself challeneged to find time to sit down an "compose " my thoughts!
The holidayws are upon us and things will continue to be a challenge but I hope that I will find specific time to allot for my "rants and raves"

Back at School--- Finally

Well I have finally settled in to Dakota being back at school -- So I suppose I can write about what happened--Just yesterday I found out that there is some "talk" throughout the District that I am the crazy woman who spent thousands of dollars just get her son back in school for a few weeks----YOU ARE D A M N R I G H T !

Many have the opinion that when I recieved the letter that Dakota had "aged out" I should have just said OK and take my marbles and go home.I have been dealing with my sons "education" {or lack of it} since he was 3 and I have been the nice guy going along with the "experts and professionals" and their recommendations of what is right for Dakota and it has gotten us a "Certificate of Completion". {BIG WHOOP}
For years I fought and fought to make school what is was supposed to be and everytime I got 2 steps ahead by the time class conviened I was 2 steps behind. I tried to play nice, I tried to listen to their crap about what was best for Dakota and all along they were just doing what they were required to do-- No More.

Soooooooo I did decide to fight this WHY? because it what was PROMISED to Dakota . It what was what he had heard for several years and it was what he knew to be "the plan". Ms. DeDe Moga- Director of Special Education for Chaffey Joint Union High School District- insists it is what I want not what Dakota wants and she fought me every step of the way. Even till the last meeting she stood her ground to insist that this was "Mom" not Dakota that wanted this. A G A I N Someone who has NO CLUE about AUTISM. Its not about what I want or even what Dakota wants it what his disorder requires for a smooth transition from a life changing experience like leaving high school. The routine, schedule and plan is the one thing that makes sense to our kids and it was about completing a task. In simple terms when Dakota works on a computer he is not finished until he exits the program,emptys the trash can,ejects the cd-rom,puts the cd in the pearl case,turns off the computer, and scoots the chair under the desk--- it is the "complete job" and anyone who really knows Autism knows this.

So heres the scoop ----In past postings I wrote about what transpired so I will condense this version: July 31 st we got the notice for Dakota not to return to school; from August 1 thru the 20 I tried with several calls to fix this to no avail. August 21 they held what they called an EXIT IEP although all the time they told me it was a meeting to try to resolve the matter--HA HA {should have known better} ! Came away from that meeting being totally shut down not heard no even allowed to present any evidence or arguments why they should reconsider. Went to the Superintendent Mathew Holton was shuffled off to the Assistant Superintendent Bill Bertran who listen and led me to believe they were considering my request only to be shut down again {I should have known}; Tried filing Due Process and Motion for Stay Put on my own only to find it to be incredibily difficult and overwhelming and way out of my expertise and ability-- so I hired and Attorney-- Edwin Egelsee. It was the best decision I could have made even tho it was way out of my monetary abilty. There is no doubt that this is the reason Dakota is BACK IN SCHOOL.

He filed the same documents on Dakotas behalf and at our first mediation meeting we were able to settle . Reluctantly I believe the Chaffey Joint Union High School should have been responsible for more than they ended up with but the most important thing was get Dakota back in school where he believed he should be---I was forced to give up his One on One Aide and my per diem for transportation BUT the most important thing was to get him back in the class he knew he was supposed to be.

Barring all the gorey details we went back and forth for a couple of hours and again Ms. Moga was hell-bent not to let Dakota return to his old classroom but in the end having to give up all that I did , I still achieved my intial goal! The meeting was held on Monday and Tuesday he was back in class.

Theres an old saying --" I will not ever start a fight But I will finish it!"
This is the moral of my story-- It what was right for Dakotas disability. Many who know about this may think that I am nuts and that I fought for very little. That I spent to much time, effort and money. What I say to those people is walk a mile in my shoes, travel the journey of Autism with your child and then make that judgement.

The bigger lesson is this My education taught me to Dream and Never Give up on my goals. It may not always turn out exactly as you expected and not always as it should be but if you have a sense of accomplishment and you did your best then its one to put in the "WIN" column.

Bare with me on the Transition

Well I am slowly moving over to this "blog-Journal" OH Change -- it is hard--- My posts have been imported but I had a different background so now I am trying to edit them so they are readable. Because of the color I need to change the print --IT will take some time I am thru most of 2008 and working on 2007-- Also I am trying to change out my link on my stationary so all you have to do is click to get to my "thoughts" I hope those of you who read will pass this on to others who might be interested and also comment and send me links to others who are also writing intimately about Autism
Again thanks to those of you who take time out of your day to read about my days!

I guess I am Moving!!!

Well here we go--- As of October 31st AOL is shutting down their "Hometown" section and that includes JOURNALS> So they have offered to transfer all of our files and posts on to Blogger.com at no cost or fees-----

I will send my things to this new service as soon as I save all of my work because as we all know something can go terribly wrong and I have been posting since January 2005-- I do not want to loose these words

If all goes well it will be Daks Open Door at blogger .com

I truly appreciate those who have read and written to me and I hope that I can continue to touch people with ideas that can help them in their world and on their journey with Autism.

I will not post any more until this transition is over -- No sense in loosing any more words

Again Thank YOU and I hope to re appear on Blogger dot com!!!!

SOME NOTICE FROM STAY TUNED!!!!!

OK I JUST GOT SOME NOTICE FROM AOL THAT THEY ARE DISCONTINUING "HOMETOWN"

I DO NOT KNOW IF THIS MEANS THE JOURNALS---

IN THE FAMOUS WORDS OF YODA "A "TECH-Y"   I AM NOT!" i WLL BE POSTING MORE VERY SOON AND THE FATE OF MY JOURNAL--

ALTHOUGH I DONT WRITE AS OFTEN AS I WOULD LIKE I HAVE FOUND IT VERY REWARDING SO I HOPE TO FIND ANOTHER MEDIUM IF THIS ONE DISAPPEARS--

STAY TUNED!!!!!

More Conversation

When your child reaches young adulthood you would think that most the "development" has occurred.As a parent of a child diagnosed with Autism you never know what will happen and you always hold out hope that "your child" will eventually learn This or That! As the years go by you start to question your hope and worry that things will be even more involved because you are not seeing the progress you hoped for. From very long ago it has been known and said that as your child approaches puberty there is a big chance that their development will stop or even reverse.This has been one of my greatest fears.

We have been purging through puberty for several years now and I have to say that I am absolutely pleased that Dakota seems to be continuing to make progress-- DON'T get me wrong they are baby steps but IT IS PROGRESS!

Some of the development is minuscule and may not be noticed by someone who does not live with him but for me its like taking a step on the Moon. Never the less you HAVE to celebrate any improvement with Pomp and Circumstance!

The purpose of this article is to rave about Dakotas conversational skills. He is still only talking about what he wants to talk about HOWEVER what I have noticed is that he is formulating more complete sentences and thoughts. If you are talking about traveling somewhere he may refer to Amazing race but he has made the connection and that's how he relates and tries to "enter" the conversation. Also what I have also noticed is that he is trying to use words he has heard and put them into his sentences and often time the pronunciation isn't perfect but the use of the word is right. He referred to someone "grissing" their teeth the other day . Of course I applauded his effort and told him he was right but it was "gritting" his teeth and he was so receptive and happy to learn. I have also noticed that he is trying to put more than one sentence together -- he gets flustered and his words are sometimes rough but coming from a kid who has so much pent up inside of him with a high cognitive level I am thrilled that the words comes any way they can.

What I want to say is never give up and always hold out hope you just don't know when your child may have a "moment". There is so much brewing inside their heads how can we ever dismiss the possibility that more will find its way out?

Quick Update

Well I am still fighting the good fight. I have filed for Due Process and Stay Put--- The catch now is that Dak is over 18 so I have to show that I have his permission to "represent" him! I find that so funny cuz when you apply for things like IHSS they always say that you dont qualify fr services that you would do for your child whether he is disabled or not and they replace the responsibility back on you BUT when it comes to defending them because someone has TOTALLY SCREWED THEN all of a sudden you have to have "legal rights " to defens them---

It gets back to the convienence of the law -- Like the district can break the law when it benefits them but when the student may benefit FORGET IT_--- OK I am getting ready to rant!

I have gone forward with an attorney and it looks like I am not crazy -- I maybe be wrong but I have an appointment /consultation coming and I am absolutely sure that I will press on if I have found what I think to be a caveat in the law--

I will elaborate the IDEA under Calfironia Education code states eligbility. It is 56026 {c}{4}{D} where it basically says that the eligibility cannot be extended by any agency and no person can be required or allowed to go beyond this eligiblity SOLEY ON THE BASIS of not completely his/her goals or objectives. What that tells me is that there is an "Open Door" to exceptions OTHER THAN goals and objectives.

Chaffey Joint Union High School District chooses not to recognize this and I believe that they should-- Every kid is an Individual and every one should be handled ,treated and cared for based ton the individuals needs-- In Dakotas case he was PROMISED and with his abilities he believes that he should be in school ---

I will stop for now and delve into this matter later

Dak is calling me-------

Fooling Myself--I need a Pit-Bull

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

50/50Chance

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.

Here We go Again

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!

Trouble with Wristbands

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.

"Be careful what you wish for"--AGAIN!

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!

Even In the Quietest Moments----

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!

"The Transporter"

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!"

 

Fathers Day Weekend

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.

Only A Mother's Perception ????????

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!

Summers Coming --Combatting Bug Bites

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!!!!!

Rough Day--HELL a rough 30 MInutes!!!!

After the "goop" in Moms hair a week or 2 ago things have been relatively quiet but today something was desperately wrong --- he had me take him to his Dads then he refused to get out and go, so we started home. I was telling him I have to do things like the laundry and store whether he's at home or not and I said something to him about going to the movies to see "Sex and the City". All of a sudden he grabbed my arm while I was driving and started flipping out-- I was on Mountain down by Tommy's. Before I got to the Liquor store by Stater Brothers I started to turn left , he opened the damn car door while we were in motion; then he reached for his seat belt and was going to bail out-- I JUST ABOUT HAD A STROKE THERE ON THE SPOT---My heart and brain were racing trying to figure out exactly what to do. I was across the oncoming traffic and a big Stater's truck was coming at me, I hit the drive way and by that time he had his butt turned sideways and his feet starting to dangle out of the car -- there was a car coming at me in the parking lot and a car behind me and all I could do was pull into the closest parking spot and shove the car into park--- I turned off the ignition and I had a hold of his left arm but I was in no postion to pull him completely back into the car so I made the hardest decision in a long time to just LET HIM GO and see what happens ----I said "ok --go ahead and go" I sat there with my hand on my seat belt ready to bolt if he took off but I figured once he got out of the car and took a look around he would do what I thought which was to realize that I was not going to chase him so he had no where to go--he milled around the car and grumbled and growled at me and tried to provoke me but I had made up my mind I was going to sit tight and not react--he started saying "Mommy" and I told him once I was not going to talked to him until he got back in the car--then every time he approached me I just pointed to the passenger seat finally after he made a few passes back and forth from the driver side to the passenger side and he saw he was getting no where about 5 maybe 10 minutes {it felt like forever} he finally crawled back in the car.

By this time there was no way I was going to attempt a trip to the store so I started up the car and said "OK Thank you" I was silent till we hit Hickory

Once we were driving up the street I lit into him and told him he had BETTER NEVER do that to me cuz next time I would shove him out and leave him there to figure out what he had done and how he was going to get home--- I guess it was with a different tone or something but I think he got it---

What a harrowing experience----

You know its moments like that you can never predict and no one except someone who has an Autistic child can really relate too. I have to tell you though these kids have some conscience level of what they are doing but do not fathom the consequences AND when it happens they are on auto-pilot its as if something or someone has taken over their body and they have no control-- Like and extemporaneous muscle-- It functions without thought!

I cannot imagine what it is like in their brains when they have what we in the Autism community refer to as a "meltdown" but I know it has been described as "static" in their heads. That is what creates the Fight or Flight syndrome--- often times motion is the only thing that can satisfy the behavior.

It is moments like these that set ua apart from other parents -- I dont say that in a snobby way or that other parents dont have challenges too its just that its is so "cryptic" that its like unraveling a huge ball of yarn ot putting together a 1000 piece puzzle and so many thoughts and decisoins must be made in a split second that you are always in check with yourself wondering if you made the right drcision .I guess we all do that but its the lack of feedback form our child that is missing -- At least with a typically developing child you will get cussed at or ignored BUT at least they can tell you OUR KIDS CAN'T

AS A POST NOTE TO THIS DAY-- It did not improve for several hours after -- I am still not exactly sure what set the motion of behavior AND may never know I can tell you hoever there were several other challenges later on in the day however I have to admit once this "wave" passes it is like a completely different child . Often times it seems like they dont even recognize the past few hours ITs definitely a preplexing situation and one that will keep you on your toes and always guessing!

Tonight was the culmination of wanting to scream ;runaway or break something---
I am living with a son who has Autism along with other medical factors AND an 81 year old mother who has got to be one of the orneriest people on the face of this earth. As I have described Dak repeatedly in my journal I have not spoken of my Mother for a number of reasons-- mostly because she is not the one who is Autistic. What continues to develop tho is the strained interaction between these 2. Don't misunderstand -- My Mother would walk on hot coals for Dakota and she loves him and has been an intricate part of helping care for him--Here comes the "but" SHE DOES not POSSESS the ability to always handle him with and informed level headed educated way-- NOW Do Not think I am perfect and I certainly have my moments where I slip and don't follow thru as I know I should but what is now happening is her age is becoming a factor--- she has all of her "facilities" and cares for her self and still helps with Dak {on a lesser level than before} However she is becoming more reactionary and this is not the way to create an environment to teach or train Dakota .
Tonight for some unexplained reason Dakota walked out to where grandma was laying down and decided to take MY hair glaze-- My special expensive Paul Mitchell Hair glaze ;Unscrew the top and squeeze it all over a sleeping grandma-- It was in her hair her head and ear her nightgown and ion her pillow--- YES I WOULD BE PISSED TOO BUT what transpired was ridiculous and absolutely not correct---She jumped up and started screaming at him and yelling of course I came right away and tried to intercede only to get yelled at even more -- like it was mu fault---I tried to calmly talk to Dakota and tell him that what he did was inappropriate and ask him what caused him to do that -- it appeared to be completely unprovoked or for no reason-- when I tried to calm my mother and grabbed her night gown to get it in the washer I come back and she has taken a 44 ounce cup of water and thrown it on Dakota-- Not only on him but in my bedroom on my bed and pillows; on my floor the carpet was soaked and I had just changed his t-shirt and now he was in another shirt that was soaked so I had a change of 3 T-shirts within 10 minutes---- then I tell her that she needs to calm down and quit acting like a 5 year old only to piss her off even more---
This becomes a very tricky situation and it is not the first time similar things have happened where I feel like I have 2 small children or siblings fighting rather than a child and a grandmother-- I don't have any solid answers but I know that this is something that has to be solved---These people both deserve their own space and to be treated with respect----And I know the Lord knows I deserve some peace,too!
Without going into extensive family history My mother is pretty much here to stay and the only real solution I can come up with is to get a little trailer and put it on the property to give her --her own space----I know something has to be done and this is Dakotas house
She and I don't see eye to eye on much of anything and I think tonight was one more step towards separating away from her even more---I cannot and will not continue to break up 5 years olds that are fighting . I know what Dakota did was totally unacceptable: again he has Autism its not an excuse it is a condition of his brain and it is even more a perfect example of what is meant when they say that Autistic individuals lack social skills --any 10 year old child would have the social conscience not to pour hair glaze on his/her sleeping grandmother NOT DAKOTA!
Something has got to give-- Stay tuned for further developments!

When is Enough -- Enough????

I would say that this is one of the most preplexing problems we as parents of children with Autism or special needs for that matter---Because these kids either have no way to let us know what they want or what they are feeling or when they have a form of communication it is delivered in a cryptic way you are always second guessing the moves you make!

There is also the other issue of picking your battles.You know you can only beat your head againsy a wall for so long until you do damage that is irreversible.

This is where I am right now--                                                        I am experiencing an extreme period of frustration. The issue revolves around Dakota and school. For the most part Dakota was enrolled in school at an extremely early age and has been attending ever since he is now 21.{the law provided us with an option for him to attend until he is 22} Although it was never our intent that he would go this long circumstances presented themselves which changed our course of action. Up until he was 18 --he was going to graduate BUT when he broke his leg things changed -- and I might say for the better because we found new life in a different classroom with a different teacher that gave him new and exciting options he never had before.

He is currently still in this class and has benefited greatly.There are draw backs mostly the kids are chronologically younger than him and have some behaviors that irritate Dakota .The upside is that they are socially advanced enough for Dakota to learn new "community skills" He also has had a lot more exposure to typical kids through the Best Buddies program and has a cute little sophmore girl that is his friend and she is a perfect match.

So heres the rub--- Dakota has always had difficulty in schedule or routine iterruptions and for example when there are minimum days or a day off for staff developement -- It totally scrwes him up!And it often takes me a week or so to get him back into the routine of getting up and going on a regular schedule to school -- He will be reluctant and resistant to going back-- AND currently this is occurring with him being off for his surgery.

I know there is apprehension because of the actual injury. I am quite sure the foot and toe are sensitive and he is afraid that going to school may cause discomfort. Also there is the psychological element of his fear about hurtig himself again which is impossible to convince him that - -IT WILL BE OK.

One other point of argument is that he is probably just had enough of school-- all of us know that it was a relief when we finally finished school and only had work to look forward too--ha ha 

All of that being said the crux of this problem is he is absolutely digging his heels in and not wanting to go back to school . Everyday it is a fight, an argument, a negociation .So I ask myself when is enough ---enough? As a Mother it my duty and obligation to not only encourage him to attend school but to insist that as long as he is well and enrolled that he must go--On the other hand I begin to second guess my insistance---Its not like he is taking a period of history and period of algebra etc :this school district has given up on him {although I press on at home to teach him}It not like he is going to get a diploma-- just a token "certificate of completion" So whats the point?--- WHAT IS THE POINT  of fighting a 21 year old young man to return to school when he doesnt seem to get much pay off for the extreme effort he has to make every day to face school with Autism? To go to  place where there are so few who understand and have the ability welcome him with open arms and where there is so little opportunity for him to be a part of the typical population. I have to admit I feel the regular ed kids are loosing out by not being integrated with our kids too. Afterall when school is done and all of us are out in the Big Bad World there is no separation whether is is color or size or disability we are all a community and that sens of community needs to start at school--Sadly it doesnt. Although educators are suppose to teach often times they dont realize that they are role models setting the wrong example by NOT having special needs kids in their classrooms--- this is a whole different subject

Resume back to enough is enough---I dont know if I have resolved the problem but I hope that I have shed light on the thought process when you are dealing with a Not So Typical kid---Every parent struggles with what is the right decision  I just think that sometimes we allow what others think to shade our decision . 

 

Mothers Day

I am not sure what happened or why I experienced this but last night I had a burst of overwhelming love for Dakota. Perhaps it was Mothers Day or because he had been gone during the day or maybe because my head and heart were in a perfect place --- i cant really explain it ---all I know is that My already intense love for my son was overwhelming

It was one of the most peaceful and perfect feelings I have ever had and it even brought tears to my eyes---

I only hope that every Mom has a moment like that because it was the most awesome feeling I have ever had!

To all who read I hope you all had a great Mothers Day

I know I did!

Back to Normal????

What is Normal???Is there such a thing????I dont know but many I know in the "Autistic Community" have always joked about this quandry.

Today we start integrating the regualr shoe. So I hope this will be the end of a nightmare that start over 3 years ago.No more therapy and no more appointments YIPEEEEEEE.

Of course I havent been able to do things like even sit on this computer and write in this journal as my nursing duties pretty much took up most of the day.If I was "nursing " I was placating Dakota's desire to just have someone around--again I guess I should be thrilled I have a kid that wants to be around his MOM! Then there is always the thought that summer is coming and once school is out theres a whole set of new routines in place--- OH WHO CAN KEEP UP WITH ALL OF THIS????

I guess my point to all of this is I have great hope that I will be able to get more things accomplished including my rant. I will say that I did discover a big life lesson after having Dakota that the old wives tale about "the housework will wait but the kids grow up" ; So dont stress too much about the dishes cuz they will still be there long after the kids are gone IS TRUE

And having a child, a teen, or young adult with Autism makes the point that you HAVE TO sieze the moment and take every opportunity because you never know when that will be a learning experience for your child----It has paid off in this house and I hope it will pay off for others . I continue to see Dakota growing babysteps and maybe he will always need someone here with him but as long as I see progress I will continue to leave the dishes in the sink !

HIATUS

Hello

for anyone who reads this journal just wanted to say I will be back this week -- Dakota recently had what I hope is his last surgery and things have been challenging to say the least

It appears that the surgey will correct his foot and hopefully we will get back to normal --whatever that is!!!!!

Thank you for being interested and if you have just started reading my "Rant" please feel free to go back into the archives for a sample of what I write about and I will have new excerpts shortly!!!!

Quick FYI about bug Repellent

Another subject came up on the support group about how DEET is showing up in our water and I took the opportunity to post about using BOUNCE

Not sure if anyone is interested but if you are looking for alternative bug repellant BOUNCE SOFTNER SHEETS

work like a charm--we cut them into strips and tie them on shoes ,belt loops watches or just put them in the pocket of a shirt--even on a baseball cap in the back where the strap is---

I know its not exactly the same the subject but thought that the topic was timely with summer coming and it being Earth Day--

Just an FYI  

 

A Couple of Ideas-for Stimming Issues

I was writing on a web support group about a couple of behaviors that Dakota has or had and I responded with what I did to "do Battle " to conquer the bad habit  Here It Is:

Yep-- the chewing of the nails was a hard one but its weird Dakota and I kinda came to a solution together--- he had one bleeding so we had to put a bandaid on it--

WELL then he started wanting me to put bandaids on all of his fingers-- MAN did we go thru bandaids and of course they were Spiderman Bandaids-- I spent big bucks and was hitting all the stores from grocery to drug to find the "Spiderman Bandaids"cuz everyone was running out and they were changing to different characters-- he was walking around with 3 or 4 of his fingers taped up at once -- It was funny we started calling him "Fingers Ford" oh yeah and "Michael Jackson" but after about a year and a half he had a meltdown one day strung the bandaid all over the floor and I spent 4 hours getting him to pick them up and then --NO MORE BANDAIDS and now he has beautiful nails so he now insists on a manicure about every 4 days --BUT that's ok we have Nails!!!

 

The twisting of the hair started when he broke his leg 3 years ago-- he barely took any pain killers and it was a way to handle his pain at first I didn't fight him cuz I knew he was trying so hard to deal with his foot and leg what happened was after the intial trauma was it turned to a habit-behavior -stim- perseveration whatever you want to call it and I have been engaged in battle ever since--- I talked to our  hairdresser and what I have come up with was Vaseline-- I hate doin it but  --he gets one warning to please stop then I get a glop and rub it in the area he is "attacking"--- I know it seems cruel but I am committed to stop this self injurious behavior-- another thing I use is baby shampoo he is very tactile and cannot stand the feel of either substance-- He hates it but He is so handsome I tell him he doesn't need to be pre-maturly bald

Its a hard situation for us but I am making some progress the hair does seem to be rebounding-- I am keeping my fingers crossed

 

So there ya have it I guess a crude ABA  or interrupt and redirect therapy

Just my way of doin battle with Autism! 

The Blood Draw

Thought that this subject would provide information that some caregivers might use!

Dakota has been caught up in a series of surgeries since he broke his leg 3 years ago. Needless to say it has been very frustrating and exhausting although the large part of the surgery has been rather minor. This time it is going to be a little more extensive and he would be required to take a blood test.

That presents a whole different set of "issues ". Dakota had been very good when he was younger about taking blood tests . He took me that required his blood to be checked on a regular basis and we had established a relationship with one of the flobotomist so it was pretty comfortable and easy to have a blood test. Of course over time and not having to take the tests he became resistant to the lab work and by the time that the doctor told us that we would need a blood test this time around --I thought to myself this is "Mission Impossible".I mulled it over in my head and thought of different scenarios that might work and the best I could think of would to be convince the doctor to have the flobotomist to come to the exam room and try to get it there in a controlled atomoshere.Of course I was met with resistance as well all know that medical professionals are aware of Autism and sat they understand BUT when it comes to practical application or trying to make ALL of our lives easier THEY HAVE NO CLUE!

So I decided this was my battle to conquer and this is how I did it: It took about 6 weeks but I probably could have gotten it done a little sooner if I would have been more pro-active but the end result was success--THAT IS ALL THAT MATTERS. I took Dakota to the clinic and walked back to the lab . It happened to be a rather quiet time in between the regular day appointments and the urgent care clients that come in after hours. I introduced my self and Dakota and explained <SPAN id=sp-14 title=" wt hat, what, that, wheat, that'd, thatch, thwart" style="BACKGROUND: url(undefinedimages/bg_spellingErr.gif) yellow repeat-x left bottom; PADDING-BOTTOM: 2px; "> we just came to visit and see the lab and those that work their. We talked for a few minutes and I told them about Dakotas situation and his familiarity with the flobotomist that used to draw his blood and the "issues " he was having about doing it now. Then we said good bye and went about our merry way. We repeated this about 3 times and by the time we sondered in and said hello to the flobotomist on the 3 time she looked at Dakota and said "Well go over there and register with the lady and lets get this done!" Guess What? He did exactly what she asked! She looked at me and I looked at her we kinda giggled and before he barely sat down she used the "piggy back" thing and B I N G O he was done!

No Harm No Foul--- what a great accomplishment and with no resistance--It took a little time and it wasn't just one trip but IT WORKED . That's what important--Another Dragon Slayed ; another battle won! when we get these curve balls thrown at us we just have to hang in there and think it out because the solution will present itself!