DAKS OPEN DOOR-JOURNAL

"The Transporter"

Mon, 30 Jun 2008 02:41:43 GMT

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

Sat, 28 Jun 2008 09:56:03 GMT

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 ????????

Mon, 23 Jun 2008 18:36:30 GMT

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

Tue, 17 Jun 2008 02:38:36 GMT

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!!!!

Sun, 08 Jun 2008 07:39:45 GMT

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!

Thu, 29 May 2008 09:38:25 GMT

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????

Mon, 19 May 2008 17:40:22 GMT

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

Mon, 12 May 2008 17:51:12 GMT

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????

Mon, 12 May 2008 17:44:55 GMT

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

Thu, 08 May 2008 16:59:42 GMT

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!!!!