"Get up and Move" Dance Class

Hey Dakota just completed a short dance class called
"Get up and Move" sponsored through the Autism Society with instructor Lee Arvinger.
I just posted her web site on the bottom of the Blog. She is absolutely a gem! I cannot tell you how in tune she is with our kids and how well she adapts the program for the students she has---
and what  great attitude!
I cannot give her enough accolades!
I hope after the first of the year we can get into another one of her classes.
Just wanted to give her a shout out!

Parenthood--Nov 9th episode

So we are TV-O-holics around our house and its actually a subject that deserves its own excerpt but this BLOG is specifically about the content of Parenthood {Channel 4 on Tuesday 10 pm-Pacific Time}
Several parents who live with Autism have commented that it is too difficult to watch sometimes--
this is because it hits too close to home-- Too honest too real. I concur.However its is also the reason why I don't miss an episode. I don't think I ever come away from it without thinking to myself that I could not have said it better.

The premise of the show is a boatload of family with several story lines and multiple characters BUT one family has a son who is diagnosed with Aspbergers- a "high functioning" form of Autism.

This particular episode deals with a trip to the store where Max{the child with Aspergers}recognizes that the man in front of them has 17 items and it is in line at the "Express Lane" "10 items or less".  Max resorts to "self help" by reaching in to the mans cart and removing enough items to adhere to the "rules"all the time saying  10 items or less you have 17. The man gets mad and a confrontation ensues. Words are exchanged, Max's Father has Granddad take Max back to the store to retreive another item and all of a sudden the man calls Max a "retard" and Dad hauls off and slugs the guy. Dad knows what he did is wrong and its not his nature but never-the-less "its done> By the end of the program Max's father is brooding and Mom approaches him with "Whats Wrong?" {she doesn't know that any of this happened --Dad has kept it from her}He finally admits to what happened and that although he knows its wrong and its not his nature to do something like that ---- That IT FELT GOOD-- and that he was angry and it was OK to be angry cuz people just don't get it.

OK I wont go into anymore detail about the episode but I have to embellish on what the writers "captured"
The frustration and anger.They were so eloquent in describing not only the feelings but actions. Its not OK to lash out and Its not OK to invade other peoples space but sometimes its so overwhelming the "primal" feelings surface. When you have a child with Autism it is  as if the whole family is "broken". I know there are others who have different challenges and Autism isn't anymore important. Just about everyone has "stuff" to deal with and those who don't are very lucky. When a child has Autism its ratcheted up because there's a whole person with a mental disorder NoOne seems to recognize, identify, understand or tolerate. People only see an individual who is "acting" out of the norm. Human Nature very rarely allows most people to empathize with an Autistics behavior AND its devastating for the parents.

When you continue to see such intolerance in the world about ANYTHING it grabs you to the core. The only thing that generates in your soul is "What will happen to my child once I am gone??? Who will be able to not only tolerate but understand his behavior?> Who will make sure that MY CHILD will be taken care of the way he deserves? Who will speak for him? Who will make sure that he is treated with dignity and respect? who will give him the ability to live like anyone else? and the questions go on----
This is what generates the anger -- some would say the "loss of control"  I would say is the mis-trust of others who behave badly when others are not watching them.

Ironic that our children are judged on their inappropriate behavior yet typical people behave badly all the time and it is tolerated.Only because typical people will  cover-up, apologize, grovel or repent for their mistakes and our kids don't have that filter.

Well once again I have climbed up on the "soapbox"
I hope that I was able to reach even one person and change their perspective.
Afteralll that's what this BLOG is about!

SATURDAYS!!!!!!!!

OH My GOD! I am about at the end of my rope on this one!
For almost a Year I have seen different and escalated behaviorand I cannot de-code it! I have consulted with doctors and other professionals worked with Dakota, the family and Friends and I just cant figure it all out.

Some of the issues I have had some enlightenment but SATURDAYS have been especially difficult.
It is a transitional day for Dakota and I understand that any time you have transition there will be challenges. Saturdays are just "KICKING my BUTT" 

I have tried every trick in my "tool belt" and I just cannot "slay this Dragon"

This most frustrating point is that Dakota is verbal and somewhat in touch with his feelings wants and needs yet he finds it incredibily diffeicult to EXPREES them! When givien choices instead of saying what he wants to do he revs like an engine "tac-ing " at thousands of RPM's. It seems like his brain goes off the deep end when he has to say or choose ANYTHING. And on Saturdays this intensifies 10 fold. He has resorted to self injorious behavior slapping his face and profuse crying.He also displays aggression by growling and TRYING to be physical!

I am so exhausted depressed frustrated and perplexed. I feel bad that he has to go thru this and I am overwhelmed with what to do. I was just getting to the point where I thought I had a pretty good handle on things and that I had pretty much seen it all BUT  NOOOOOOOOOOO here's another one.

Sometimes I just don't understand why these kids have to go thru what they do but if I had all the answers then I would be golden.

I will continue to try to de-code whats happening on SATURDAYS but for now it is my mystery!

It is what it is!!!!!

I was recently writing to another parent and discovered that I had another "rant" to publish. Don't let the word "rant:" put you off its just my way of identifying issues that I feel can be common to many of us who care for individuals with Autism. While I work through the behavior I develop observations and opinions I hope might help someone else who has reached a point where they feel helpless or distraught because they just cannot figure out what to do next!

And so it goes:
I read an article several years ago by a very high functioning Autistic girl who was angry with her parents for continuing to "rid" her of her Autism. They had taken her to many doctors and tried chelation, diets and other behavioral strategies --all to make her better . Her opinion was that as she has gotten older she resented her parents trying to make her something she IS NOT! Her  article went on to say that she felt betrayed and that Autism was a part of who she was and when others even your parents try to change that,  they are changing the person. She did not necessarily like all the things that came with Autism but it was a part of her and she wanted to remain true to herself.  This was an epifamy for me.
As the last 4 or 5 years have come to pass her words ring true to our situation more and more. When you have a baby and then a child you do everything in your power to protect ,provide and guide for their best interest. But as our kids develop in to adolescence and adulthood we have to realize that they are humans first. Meaning that regardless of the Autism they still have wants needs and desires like ANYONE ELSE. -They have their own personality traits and WE HAVE TO HONOR THAT .

I was recently telling another Mom that after 23 years I have arrived at a different point than those who have younger kids. Not so much "been there done that:" but more "Why bang my head against a cement wall?"

The observation was this----Dakota has things he likes. Maybe I don't like them . He is 24. Almost every parent on earth has an adult child that they don't like or agree with what their child has done or is going to do. Yes hes not typical and that does have some bearing on the process but essentially he has a right to do and feel what he wants. I see where his "disability" limits him and I try to enhance those parts of his life.

He needs exposure to community and as much social interaction as I can produce for him and he will accept BUT I can only present the opportunity to him and it HAS TO BE  his choice whether he engages or not. If nothing else, 23 years has given me this little "pearl of wisdom". I want Dakota to be the best he can be but I realize that at this point its more aggravation for me than it is for him.
Its not giving up its recognizing that Dakota is who he is and likes what he likes and does what he wants to do and I have to accept that his him and his personality.Sometimes I find that incredibility hard -- and it is not anything I think anyone can relate too just where I have landed after 23 years.

All I can say is if you are experiencing anything like this --Just do the best you can do  Relax and don't have a coronary over it --- Because It Is What It Is!

    

Reflection

My Boy

I was writing a friend today and realized that almost all of my blog is about challenges, trials and tribulations. In that moment; I realized the real reason why I started writing it in the first place. Surely my intentions were to help anyone who was feeling lost or overwhelmed about all the crazy places AUTISM takes, you but more so its about how much it is soooooooo worth it! 

Dakota is such an amazing kid in his own right and so many times I feel that he is not given a chance simply because people either don't understand but more importantly wont take the time to understand.
 He has had more than his fair share of obstacles-- BUT the one thing that came through right away was what a beautiful child he was! EVERYWHERE  I took him people would always remark about what an angel he was--- I was never one who oogled of babies and I thought of course my child was cute  but I was always amazed at how many people approached me about Dakota.

It wasn't long that the AUTISM started creeping into Dakotas life but it was all OK while he was small and cute --- he could blend --- then puberty and middle school came and it was a nightmare--- What Has Happened???Why don't these people see the same kid they did a year or two ago???Why would they give him a chance-- He was getting taller and heavier and a force to be reckoned with--All of a sudden all those people were intimidated afraid or wanting to "whip his behaviors into shape!"

Now that he has become a young man the challenges are different yet similar. There are no supports or protection under the law anymore---He is just out there and so little interest not only for him but for all the others who will be here at this point soon,too!

No where to go, No options to find people who will mentor or buddy with these kids whose greatest deficit is social interaction with Typical People. Its not that the parent cannot provide these interactions for their kids, its more about the fact that our kids need connections with others that ARE NOT FAMILY. They need people who understand them and are willing to accept their behavior and still be there for them. Someone who can give a small amount of time and be there as an extension of their family. Someone who is not afraid and someone who is willing to take time to educate themselves to be able to provide a friendship that WONT GO AWAY just because they act out. In this litigious society there's always the fear too that even tho there is no intent our kids could lash out and potentially hurt someone resulting in a law suit--- Its a scary thing!   

 My Boy is such an amazing creature and I love him so much-- He has taught me so much more than I could ever learn from an educational institution. He is funny and thoughtful and so incredibliy smart. His brain is a giant memory box and he has so much to contribute but sadly even those few kids that intereact with  him  dont realize his potential. He tries sometime to get into the conversation but the kids run on a different RPM than he does. It takes some time to deficer his thought and speaking patterns but once you take the time to listen and develop his train of thought you learn he has everything we do it just comes out differently.

The other night I said something about a TV show having "crap" on and he laughed and laughed till he almost couldn't see straight and it was so joyful to see him have a "moment of Normalcy". To know he has such great potential gives me great joy and I only hope that in the future someone out there will see what I see .

For now I just want to encourage those who read this to be aware of what a great gift your child is even with this DAMN AUTISM and if you dont have someone who is Autistic to appreciate your your "typical" kids even when they drive you nuts AND to hopefully embrace this article and pass it on to someone who can learn from it! 



Happy Birthday My BOY

Goofys Kitchen September 2010

Well lots of time has gone by since my last posting. I am not sure if I have been overwhelmed, busy or unable to managed time or all of the afore mentioned.

I have so much inside that I want to write about but I seem to watch the days go by and just cannot find a way to devote enough time to writing. 

Well this past month we took a special day just to go see the new "World of Color" @ California Adventure , then a couple days later we were able to be a part of a taping for Big Brother--one of Dakotas favorite reality shows -- Labor Day week end came and then we were off to Disneyland for 5 days.

Almost a quarter of a century ago I gave birth to a baby that was not expected to live. The doctors had him in the hospital for 3 weeks after he was delivered and the prognosis was not positive-- They did not expect him to live---

He is truly a miracle and considering what we went through we are fortunate that he is as functional as he is. I would not trade him for all the money in the world and I love him with all my heart.He has been a learning experience for me and has taught me many valuable lessons. I grieve that he will not have all lifes experiences a typical kid would have YET I continue to be relentless in pursuit of giving him as much normalcy as he can tolerate.  

Dakotas birthday trip was a sucess in my book . You always wish a few thiings would have been different but anytime you see happiness and smiles with appropriate behavior and controll of situations that would have once wreaked havoc IT goes in the WIN column!

We were able to have a group party at Goofys Kitchen with a few of his friends, a couple of his teachers and some family-- WE had a great time! 2 of the boys were able to spend the night and then all of us would go to the parks the next day. Again a sucess-- When it came time for the boys to leave was the only low point of the day. Over the couse of 5 days there were only 2 "infractions " that are worth acknowledging and actually one was when we were leaving so I cant blame him for the feelings of transition and sadness for leaving!

All in all a great time and lots of fun

Happy Birthday to My BOY

I hope we have may many many more to celebrate .

I Love you bigger than the sky

Time to get back to Behaviors-The Puzzle

Well I guess its postponing the envitable. Since as early as December 2009 Dakota has been having episodes of aggression that I had never seem prior. Over the course of his life he has had tantruming and behaviors that others were unable to understand or perhaps even intimidated by but always manageable. By that I mean usually you could identity an antecedent and/or trigger and potentially eliminate a reoccurence.

The issues Dakota has had since December have been different because many of the times I cannot figure out what is triggering it. Also these "episodes" have been much more intense and he has expressed much more rage. Yelling, Physically assaulting himself and me and more sorrow and emotion. I have no fear of him because it is done with NO INTENT too harm anyone it is simply the static in his brain going off and his inability to stop his actions.

Although these behaviors continue, there has been an improvement. The occurrence rate was about 5 to 7 a week at the onset and now it is perhaps 1 or 2 a week. Don't misunderstand there is "all kinds of Autism" besides the behaviors goin on but for the most part this "Ragey Stuff" has curtailed.

We recently took a 2000 mile trip over 9 days and there was only 2 real episodes --SO THAT'S A BIG IMPROVEMENT. And I can honestly say that I deciphered both incidents -- I know what caused them and I know how to avoid those situations in the future.

My most recent hurdle has been with the program I have had him in --Anthesis. At the onset almost a year ago he had a couple of reactions that were inappropriate and were dealt with very effectively . Just the past few months have seemed to "crop up" feelings that Dakota is acting on. It is manifesting itself with actions toward the wonderful woman who has been working with him. The initial trigger was the time of an appointment for a session that had been changed from the original session from that he even reacted when she tried to observe him on a preferred activity with friends. ITS DEFINITELY NOT HER it that she represents the program --I believe he is trying to tell me that he does not want to go anymore and it is breaking my heart.

To have the baby you gave birth too struggle with so many issues that you have no control over is heart wrenching. More so not having a solution or "fix" is even worse. BUT you keep plugging on and you keep trying and NEVER GIVE UP. Remain diligent in observation and thought. It is truly a puzzle and you have to keep tryin to put the pieces together. You may not ever get the whole puzzle together but if you get the "frame" at least it gives you a space to work with in. 

IRC {Inland Regional Center} and Perussis {Whooping Cough Vaccine}

OK call this a rant! IRC {Inand Regional Center} provides postings by parents about issues that may or may not be of interest to other parents and caregivers.
About 2 weeks ago someone posted a notice about the facxt of Whooping cough and the Importance of getting your child vaccinated with PERTUSSIS. This person happened to be an ADMINISTRATOR AFFILLIATED WITH KAISER who was also a parent I am ASSUMING-since it was posted as a notice from a parent. Essentially it spelled out all the reasons for vaccinating your child with PERTUSSIS AND SO FAR AS TO ENCOURAGE IT!
I wrote back with a response that Dakota had a DPT{Diptheria, Pertussis, Tetanus} booster and ended up in the Emergency room with a seizure.I went on to describe the fact that specifically to Kaieser but with most pediatric facilities there are postings notifying you of the POTENTIAL danger of Pertussis and that seizures are a known side effect of PERTUSSIS.

BASICALLY WHAT HAPPENED IS DAYS WENT BY AND MY RESPONSE WAS NOT POSTED SO I CHALLENGED Diane Kimble who is the one who does the posting for IRC. In so many words and after about 3 emails I was told that they would not post my response---
I am outraged and pissed off that they can post one side of th story but not the other so I have decided to post the emails and correspondence below 

The first and so on-------
In a message dated 7/13/2010 2:51:34 P.M. Pacific Daylight Time, dkimble@inlandrc.org writes:


California is experiencing an epidemic of whooping cough (pertussis). While it is contagious, it is also preventable. Vaccination is the best form of protection. Taking common-sense steps to protect yourself and your family, such as covering your mouth when you cough and washing your hands often, are helpful in preventing the spread of whooping cough.
What is whooping cough?
Whooping cough, also known as pertussis, is a contagious disease that can be spread easily from person-to-person through coughing. It’s life-threatening for babies 6 months and younger as whooping cough can cause them to stop breathing or to cough so much they can’t breathe.

How widespread is the disease?
The California Department of Health Services has said the state is on pace to experience the most illnesses and deaths due to whooping cough in 50 years. As of June 15, the state has identified 910 cases, is investigating an additional 600 cases, and recorded five infant deaths.

What are the symptoms?
Whooping cough starts like a common cold, with a runny nose, congestion, sneezing, and sometimes a mild cough or fever. After one to two weeks, severe coughing often begins. Children with the disease cough violently and rapidly, repeatedly, until they are forced to inhale with a loud whooping sound.
What should I do if I suspect I or a family member has whooping cough?
Contact your healthcare provider immediately, especially if you care for or have contact with newborn children that are less than 6 months of age.
How can it be prevented?
Whooping cough can be prevented by pertussis vaccinations (DTaP) at regularly scheduled wellness visits for children 2 months through 6 years of age. A Tdap booster shot is needed for persons ages 11 years and older for protection against tetanus and diphtheria, as well as pertussis.
What can you do to protect yourself and your family?
Get vaccinated if you meet the criteria.
Cover your mouth when coughing and wash or degerm your hands often.
Who should get vaccinated?
Mothers, fathers, caregivers, and those living with newborns and infants 6 months and younger
Children ages 11 and older who have not had their regularly scheduled Tdap booster
Pregnant patients in their second or third trimester
Women who plan on becoming pregnant
LIVE WELL AND THRIVE !!
Fenella V. Nadeau

Senior Account Manager -- Inland Empire Service Area
17284 Slover Avenue, Fontana, CA 92337
909-609-2843 (office) Tie line 8-286
[IF YOU WOULD LIKE A COPY OF A FLYER (ENGLISH & SPANISH) WITH THIS INFORMATION, CONTACT ME AND I WILL SEND TO YOU DIRECTLY.]

This notice is informational only. Regional Center does not vouch for effectiveness nor support the funding of these services.
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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My first challenge-------
So Diane Kimble--- do you only post what you think is relevant?

I think that as a parent who has had a personal experience with PERTUSSIS that my information is just as relevant as a post from someone who works for a an HMO.
and in fact I subscribe to Kaiser and have personal knowledge about their procedures and positions---
I feel it is IRC responsibility to post ALL parents observations whether they agree or not!
Please let me know your position on this ?

PLEASE BE AWARE--Pertussis is a medication that CAN cause seizures! Even in the Kaiser Pediatric examination rooms there is a bulletin that explains that Pertussis does and can cause seizures. The occurrence rate is low and you can also die from Whooping cough BUT parents pick your poison---My son ended up in the E R with seizures after receiving his scheduled DPT booster {Diptheria ,Pertussis ,Tentanus} The only reason he survived was that he was already on anti-siezure medication. If your child has a reaction to pertussis it is mostly likely or potentially deadly!
Cindy from DAKS OPEN DOOR-JOURNAL
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
response----------------

In a message dated 7/19/2010 8:04:38 A.M. Pacific Daylight Time, DKimble@inlandrc.org writes:

Typically, I do not post anything medical because each individual’s reaction is so very unique, however, my supervisor had me post the pertussis update.

I would never believe any child’s reaction is irrelevant, however, it is a fact that every time a vaccination is given the medical professionals bombard families with the possible side effects, as you had acknowledged in your e-mail (the bulletin at Kaiser). I also have a child and worry every time she needs to be vaccinated, but I have always been informed of the possible side effects.

I am very sorry that your son had such a terrible reaction, and glad he came through, but it appeared that Kaiser had put up the required bulletins to forewarn families.
I will forward your concern to my supervisor and let her make the final decision.
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I wrote back----------------------

Hello Diane-- Thank you for your response-- I just want to clarify that I am not questioning the Medical Professionals : Kaiser or otherwise, to encourage parents to vaccinate, as for most kids the exposure and results of most communicable diseases is potentially more harmful than most Immunizations. I get that and Never want anyone to misunderstand my intent. I dont want anyone to think I am out to blame vaccinations for anything nor do I question the notifications that were posted on the door at Kaiser. The only point I was trying to drive home was to give parents and care givers the "heads up" about the possible side effects that they MAY NOT BE AWARE OF -- for many reasons including the fact that they are NEW to this whole world of "special care" for their child or children or even the fact that the warnings that are posted are sometimes inconspicuous or not very well presented in the examination rooms { i.e. @ Kaiser they are in a clear slip cover and literally hanging on a hook on the back of the door-- NOT PROMINENTLY DISPLAYED and often times the doctors do not take the time to explain these things }


I dont want to come off like some crazy person trying to rid the world of vaccinations or talk someone in or out of vaccinating their child --- My intention was to bring attention to an issue that sometimes is overlooked or parents are not aware of until it is too late. After all we need to be informed in order to make what ever decision is necessary for our family!

and if you or your supervisor choose to post our families experience I urge to put any or all of this post with it or to put your own disclaimer on it--
I just know if I was a NEW parent I would be glad to receive this or any input from other parents .Especially tose of us who are bonded by IRC

Cindy from DAKS OPEN DOOR-JOURNAL
My public journal about "Living with Autism"
Stories, Thoughts and Observations about our journey!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Dianes respose-----
My supervisor is not a medical person and would like Dr. Eliana Lois to make any final decisions about sharing medical experiences. She is the Chief of Medical Services. Sounds crazy, I know, but when it’s medical information, we must defer to our medical Chief! I have sent our conversation over for her perusal, and asking her if we may share.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The final word from IRC----
I wanted to let you know that Dr. Lois got back to me, actually quite quickly. I was surprised. She has asked that individual medical experiences not be shared via the agency list serv. She believes broad overviews on medical topics are best on a list serv such as ours (social work). Sorry…….Diane

All I can say is that I intend to let as many people as I can know that IRC is not acting responsibily when they ONLY WANT TO ALLOW ONE OPINION OR SIDE BE PUBLISHED!
Its not that I have earth shattering information BUT if one child or individual can be spared a seizure or any other side effect because of my posting or anyother parents posting then IRC is failing us and NOT DOING THEIR JOB PROPERLY

Finally I must say that I am not one of the many parents who have seen their children develop normally and suddenly witness  severe developmental delay from vaccines -- BUT I believe that those children were affected---this post is strictly designed to bring attention to the fact that Pertussis is known BY THE MEDICAL COMMUNITY to cause seizures but many of us do not know that> THATS ALL!
JUST MAKE YOUR DECISIONS ON ALL THE INFORMATION YOU CAN GET not BY THE FILTRATION SYSTEM OF IRC!

Can You Imagine?

How many times in your life have you had a cut,scratch,or scrape? A sore throat,ear ache or tooth ache? A hang nail, stubbed toe or pulled muscle? An eye twitch,some type of bruise or a migraine???

Can you imagine waking up every morning with a massive headache and not only be unable to tell someone about it but never have a remedy. Meaning EVERY DAY FOR THE REST OF YOUR LIFE you would have to live with this condition. Thats the way I imagine in my head that Autism feels like-- the static that goes off in the brain has got to be so overwhelming how could any individual get any peace for their entire life?

Add to that the inability to express pain from every day life and how many of you would be able to tolerate it? I think I would land in the "Loony bin":or worse--I wont say---
Each and everyone of us as human beings have the maladies I mapped out in the beginning of this piece and we run to the medicine cabinet or the doctor to get help and hopefully relief.

BUT my kid has NEVER once expressed pain or discomfort 23 years. I cannot imagine what goes thru his head-- Does he expect me to sense that he is experiencing these pains? All I can conjure in my head is that he just assumes that I know he is not feeling well and I will fix it--- THIS KILLS ME!I cant tell you how many times I have said to him "You dont have a "moving message" board on your forehead to tell me what you are thinking" and if he needs some kind of assistance he has to use his words!

I know that is easy for a typical person to say because of course it is easy for us to do== BUT again how incredibly hard must this be for our kids??? I just CANNOT Imagine! 

The Loss

The Loss of our friend and Dakotas coach /mentor has impacted us in so many ways. I have found myself struggling to write as many things have happened yet I am having a hard time sorting thru what is directly connected to Brad passing and just a round of different behaviors--

My biggest obstacle was telling Dakota about Brad==WOW that was a hard one and it took e almost 2 weeks. I managed to shield him for a while but came to the conclusion that this is a fact of life that just has to be experienced--I contemplated telling Dak that Brad had just gotten a job in a far way town but after a day or so I realized that this would have been even more difficult as Dakota has legitimate abandonment issues and if Dakota thought that Brad just up and moved on him that would be worse. So when the time was right -- not to late in the day so Dakota would not dwell on it at night and after he had eaten at least one meal for the day I sat down and did the best I could. It tore me up. I realize now that even tho I liked Brad and had genuine feelings of friendship with him it was more about how it would effect Dakota-- immediately as well as long term. This was going to turn Dakotas world upside down.

Oh we will survive and I will press onward for Dakotas independence but it was just about the trust and ease with Brad. I knew Dakota was safe and protected when he was with Brad. We have started a few things to try to re-establish some activities but it will be a rebuilding period. Honestly NO ONE  will ever replace Brad. I have started to plan and plot out alternatives and pray that we wont have to go thru this again. I think the lesson is "No matter how well you think you have things figured out there will always be unforeseen obstacles"
further more BackUP BackUp BackUP !!!!!!!! you can never have enough Back Up.

   

In Rememberance of Brad Loula

Brad Loula's Memorial Website
http://memorialwebsites.legacy.com/CoachLoulamemorial/homepage.aspx
 
The Autsim Community suffered a huge loss this week==
My sons best friend  and mentor died at the young age of 46. This was a man who was a rough, gruff, curmudgeon of a man, a football coach and someone who possessed the heart and soul of an angel. By many accounts Brad was not perfect and in fact quite difficult to get along with in the typical world. I saw him on many occassions with very little patience for situations when typical kids or adults acted out or were out of hand. When it came to understanding and caring for Dakota it was as if he could flip a switch to become the best support a kid could ever want and a parent would ever wish for.
I knew when Dakota went with Brad that I had no worries . He would be protected and given his independence -- that was a fine line!
 
Brad and Dakota were "2 Peas in a Pod" and in someways I believe Dakota did as much for Brad as the other way around.
 
My heart aches tonight, my son does not even know yet and I dont know how I will find the words. I know I must tell him because he needs to understand that Brad did not abandon him but that God had a different plan.
 
There arent many out there who had or have this ability Brad possessed. Dakotas world is turned upside down and we are back to square one. I hate "hokey sayings" but in this case I must hope that "when a door shuts, a window will open!"
 

FIRST MONTH TOGETHER 

2001

We will miss you Brad and although you didnt think there was an afterlife I hope that you are finding out right now that I WAS right!

BRADS BIRTHDAY 2008

SEE YOU ON THE OTHER SIDE !!!!!!!!!!!!!!!!!!

Operational Mannual

Many years ago I attended a program for Dakota where the parental advisor gave us an assignment-----
"I want you to create an "operational mannual" for your son or daughter." "Lets just say that we do not know the future and any one of us could go out and get killed, drop dead or end up in a hospital tommorrow." " Arent your children fragile enough without routine or schedule being disrrupted? If a parent was not there; could it cause your child to end up in a tail spin?"
Why allow their world to fall apart any worse than it would if your were not there?  The assignement was to assemble information about your child so that a perfect stranger could pick up the pieces and TRY  to make your child world  OK without you.

My mannual developed a life of its own and is probably much more than necessary but heres what I tried to do: Paint a picture of my son and his daily weekly and monthly routine.I included Family contacts. support people {ones that were in his life} diagnosis, prescrpitions,medical history and background,Daily routines-- bathing,toileting, eating, bedtime---Eductional back ground including schools and teachers that did well with him and activities he excelled in,certain ways he was at home, what TV shows he likes and activities he did and any special little thing that set him apart from typical. Like the fact that he does not understand how to blow his nose or that he does not swallow pills. Additionally I included 3 or 4 articles about Autism and included network info about different no profits that could offer info,support or help.I also added info about places he liked to go to and how he did in each environment. I put hints in there about things that seem to trigger Dakota and non preferred tasks . 

I guess my point is that every kids world would be turned upside down if their parent wasnt there tommorrow-- but dont we owe it to these kids to have the best support they can get. All this is in your head and unless its is written down NO ONE KNOWS IT! and your child probably cannot express it--

So think about it. Make an "Operational Mannual" and hope you never have to use it---You can even use a your computer and burn it on to a CD-- I utilized a notebook and included pictures and magazine articles plus reference material like pamphelets so that somone has an idea of where to start.      

How do WE prepare??

It's natural to want to protect any child . It seems to me that most parents and caregivers of Autistic children are even more aware and concerned about this subject. Not just because of the disorder but the nature of Autism makes the caregiver anticipate situations that a typical person may be able to process and handle whereas an Autistic one would not.

Now I can list  hundereds of scenarios but the one that is on the top of my list right now is how to inform or train for unforseen situations. We work and work on sameness and routine and typical everyday occurances but what IF?????

Just picture in your mind your are home in the morning and your spouse has already gone to work. You and your child are home alone . The child is still asleep as you prepare to start the morning; you walk out to the garage to take out a bag of trash or to put a few clothes in the wash and you trip hit yout head and you are unconscience.

Your child wakes up only to see Mommy laying on the floor knocked out. How will that child react. Now some of our kids would be keenly aware and would call for help or react approprioately. Many would not.

What steps can be taken to try to at least plan for something you hope will never happen? Of course there are Social Stories and the constant lament to them about dialing 911 in an emergency but how do we know they will?
Guess the answer is; we dont. But dont you think that its better to think about it now and put something in place rather than scoff it off and hope it never happens? The simple fact is WE DONT KNOW - anyone of us could step off a curb and get hit today-- We JUST DONT KNOW!I have been hearlded as the "Queen of Procrastination" But in this instance I feel I owe Dakota some kind of plan Its time for me to buckle down and find some solutions.

You know its not just someone passing out or the child finding themsleves alone,  there could be a fire or an earthquake, they could come and evacuate the neighborhood, Who knows???. I dont think any of us talk enough to our kids about it . We have so many other things to deal with; its just easier to set that one to the side and say - OH someday--

Its also another step towards some independent living skill. How can you ever allow your child the ability to stay at home even for short periods of time if you dont have a plan for these emergencies. I dont think many of us ever think our kids will be alone much but even the smallest amout of time is healthy for them and a step towards some kind of independence down the road.

I do use some construction paper and drawings or clippings from magazines to help with some situations in the house -- for instance instructions for showering-- although he does not seem to follow them very closely, he is aware its there and we read it occassionally. Something similar with instructions for calling for help could be possible and I have thought a lot about something like a "life alert" signaling device similar to what some seniors have ---

I know I certainly dont have all the answers and only a few ideas but I know that its another chapter that needs to be concluded.
So, I put the questions out to all of you and hope I might get some answers;
"How do we prepare?"

Wishes for an easier "world"

Well there are things that seem to be a bit better but boy when the "Shit hits the fan" it comes in buckets!!!

I am finding that there are bigger gaps in the occurance of the behaviors but the intensitiy seems worse. All of the being said its really a matter of keeping the right attitude and not giving in or up!

Thats what this post is about--We know that Autistic individuals are missing "the social chip" so they are always replicating what they see in others.It is absolutely imperative that you remember that the example you set will be the example to you see in your child-- I struggle with keeping my composure at all costs and believe me  that is a feat!

When he "rages" it is all I can do to NOT REACT. I have decided that when these issues come up the worst thing I can do is model aggressive behavior back at him. These episodes seem seizure like which I have said before and I truly believe that he has no ability to control it or learn how to over come it. It seems more like he has to wait for it to pass. For that reason, I have to keep in mind that he does not need to spar with someone. Nor does he deserve some crazy maniac mother yelling to telling him to calm down or stop when he CANT! He needs some one to have their wits about them. Someone who will provide a safe environmant where he knows he is loved and protected and that its OK. That just because he is "off kilter" that he is not rejected or unloved by those who are caring for him. 

To another end I also make a concerted effort in the rest of our world to be as
non-confrontationalas possible. For those of you who know me; know that this is a huge feat for me. I have a rather volatile relationship with my mother and I try not to display my frustration in front of my son because I know he will glom on to it. As well, my issues with Regional Center or the school districts and many other entities have created a "fighting spirit" in me but I have made a much more conscience effort to conduct business when he is not within earshot.It has become overwhelmingly obvious to me that when I talk about him or Autism or anything that has to do with his life he reacts. He is absolutely congnizant of what I am talking about and how I am handling it.AND he reacts usually in an undesirable way.

Its all a matter of what works in your home with your family and your child. Again this is just what I try to make work for us.

As you can tell these behaviors have consumed my journal recently. Only because thay have cropped up recently. I just cannot imagine how others deal with these things in their homes. I dont pretend to have answers I write because I hope it will help someone else get thru their issues.I write with the hope that someone can take something from me and make it easier in their world. 

Just thoughts----

I have not posted this past week because I wanted the Anthesis activity to remain on the top for those who visited from my posts on the web groups---

The past week had presented more challenges however I feel reluctantly optomistic. Although it seems that it may be meds that have helped; it is a bit of a relief if the new regiment works---

When you get pregnant the first thing that happens, EVERYONE is harping at you: "Dont Smoke, Dont Drink, Dont take Caffeine, Be sure to take your Vitamins--eliminate stress---- yada, yada, yada-- OK its all for the baby so he/she can have the best start in the world. Then you have the baby and there are complications and what is the first thing they do???  Start pumping drugs into them obviously to save the child but it just seems screwy-- Then there is always some woman who did not "obey" all the "rules" Lived recklessly while pregnant and has a perfectly normal Baby-- wheres the justice???

Then you find out that your child will have a disorder for the duration of his life and whats the answer- MORE DRUGS???? It goes against all that has been "preached " to you since pregnancy. The next observation is that this child has stuff going on in his head that he does NOT DESERVE  to cope with--So you have to decide what is most important. For me it is His quality of life, his peace of mind, his functionality.

Without expounding on numerous strategies there are all kinds of things out there for Autistic Children and many of them are everything BUT medication. You explore all the alternatives and you pick and choose what seems to work for you your, child and your family. Some work, some dont. Some work for a while and then fizzle--All of our kids are different and different things work for different kids. Ultimately every kid will find his own niche-- but the caregiver has got to be keenly aware of what works and be willing to try different things till your find the right combination.

In our situation many things have not worked. Medication as a last result has seemed to be the most effective--- Dakota has really been going thru a rough patch since Christmas and I have been feeling really overwhelmed.  He is growing into fullfledged adult and the hormonal surges are stronger than ever--Its a tough deal cuz Nature has delayed them developmentally but not physically AGAIN  another thing that is not fair BUT it is what it is? He has developed this rage that comes on without notice and it snowballs very quickly. It makes me crazy cuz I most of the time I dont see it coming and I cannot figure out what triggers it. I feel so bad he has these "creepy crawlers" in his brain. I decided the meds he had been taking were no longer working soooooooooooooooooooo time to try something new. 

Last weekend was the tipping point-- he had the ultimate meltdown . It tore my heart apart--- I had to try something and after much distress a decision was meds to try different meds----I am stll trying to "tweak" the right doseage but it seems like perhaps I may have found some relief for him.

Perhaps this is all boring and even redundant from previous posts but I feel like theres always that chance that someone who has never read me before will get something from this post. I guess the purpose of this post is to reirerate one of my "mantras"  NEVER GIVE UP!        


   

Something besides Nagging!!!

One of the highlights in Dakotas life right now are the hours he gets to spend at the Anthesis Program.It is a very new program specifically for individuals transitioning from school to "the rest of their life".

It has only been up and running for a little over a year and its main purpose is to design and execute services to help our kids become one with their community--the neighborhood where they live. It is an extremely unique program that is desperately needed throughout

the Autism community.

This is one of their first fundraisers for the kids to get involved,to invite the general public to get to know our kids and to further promote its exsistance.The basic idea is that our kids are not the ones who "naturally" participate in sporting activities so we will bring the sporting activities and atheletes to them!

Please feel free to come down and participate.

Just Cannot Figure it out.

It should be "Happy Easter"
For the most part every day; whether it is a holdiay or not, You have to find the happiness in the few minutes or hours that present themselves and FORGET  the stress or behavior that will come and go. One thing I have noticed is that our kids seem to be impervious their behavior and how it affects those around them.Another thing is that they are also unbelievablely resilient to behavior--At least that seems to be the case with Dakota.

As I have said before that it seems as if the recent behavior patterns are almost siezure like. They come and go in short spans of time and it seems as if Dakota almost has an "out of Body" experience. Also, it is very apparent that the less confrontation the quicker the situation seems to "blow over". Moreover the most amazing thing is this resilience I have witnessed with Dakota---After a very short period of time, it is as if the behavior never happened. He is smiling and sometimes laughing and literally untouched by this episode that was so intense its enough to make my head explode. That makes me happy he can go through that and come back to a calm peaceful place. What I take issue with is there no learning place in all of that. Hence the nature of the beast! How can one learn if it becomes a "non issue"?

Yesterday was one of those days!
Went were motoring through the regular event of the day when while we were out in the car he flipped out----Screaming and yelling and grabbing my arm calling me names as we rounded the corner heading for home he clicked off his seatbelt and opened the door while the car was in motion-- LUckily I was about 30 to 40 feet from a clear driveway so I swung into the first parking spot as he piled out of the car yelling at the top of his lungs F---this   F---that-- he walked down to the sidewalk and told me he wasnt getting back into the car--- I knew I could not "make" him get back in so I had to let it play out---Once he got down to the sidewalk I think he realized that he didnt know which way to go so after 2 or 3 minutes he finally relented and got back in the car -- I told him if he wants to blow up do it at home.
WE made a quick trip to the house and he retreated to the nedroom and finished out his fit. I have found that if I leave him alone, it will fizzle out faster. I went about my business in the kitchen and eventually he came around----

To the minute of writing this I still DO NOT know what caused this behavior and that is the most frustrating--- If I could see the antecedant perhaps I could avoid these incidents but right now 
I Just Cannot Figure It Out;

So much yet so empty--

More than once a day I think about writing another entry here. Thoughts flood my mind and I am always thinking about whether others are feeling oe experiencing the same. 

I recently read a post by another mom who likened Autism to an empty suitcase and how you have to decide what to pack into it. Her retort was in response to others who have gone on to comment that Autism can be compared to an unexpected trip to Holland when you thought you were going to Italy as well as another Mom who expressed herself by saying we were all chosen for this "task". I dont know if I have come to a "clarity" as these women have. After 23 years I only know that this is what we have challenges and delights or anything in between and WE DEAL WITH IT. Dont like it; wish I didnt have to learn about  Autism; want a fairytale life  BUT  this is it.

 There are so many sayings out there; take your lemons and make lemonaid-- tommorrow is another day-- Hold out Hope.
THE ONE THAT GETS ME THE MOST IS:
"God doesnt give you more than you can handle." BULLSHIT
I do not mean to offend anyone and I know each and everyone who has said that to me was a caring well meaning individual BUT I just cannot stand this saying. I am a Christian and I do believe that there is  a God. God does not have anything to do with this part of your exsistance in my humble opinion. I will stop right there!

My thought is this; each and everyone of us have challenges in our life.  If its not an abusive relationship, its a child that might have an addiction problem, there could be an accident which rendered a person with disability for the remainder of their life, A member of the family has Lupus or Cancer or Diabetes, Divorce, abandonment and the list goes on. EVERYONE  handles anyone of these things differently. Some are strong some are not. Many get through it with out a blink of an eye, others crumble at the first defeat. God does gives us more than we can handle. It is how we handle it that determines whether we make it through. Some people use drugs or alcohol, some committ suicide, some end up in a mental institution others just "muscle" through.

What I know: you have to find your own groove. You have to find what "helps you through the night". Its one foot in front of the other and its day to day-- trying not to refer back to a "saying" but "One Day at a time" and the "Serenity Prayer" have been my crutches.Of course I would be remiss if I didnt mention watching my baby grow and develop as part of my "lust for life".

Circling back to the original intent of this piece; I have been flooded with thoughts to post yet reluctant to write. Mostly because I have found that allowing time to pass before I write gives me a little more perspective.  

My committment from the onset of this blog was to write with the intent to help other parents sort out their experiences and emotions.  To allow them to read good and bad and everything in between so they can put perspective own their situation. To know they are not alone. Mostly to let any denial or bad feelings be resolved when they realize that its OK to feel however they feel  BUT to never loose sight of their child and his /her  disability. Never apologize to someone outside of the situation who doesnt understand--  Their child  has a disability and frankly theres no time for that.

I have been having some pretty rough times with Dakota lately. I have held back writing about it as I am waiting for the moment when the behavior makes sense to me. All this has stifled my ability to write about it and is why I have stumbled on to this  observational excerpt on feelings, thoughts and purpose. Perhaps this is allowing me to navigate through my own feelings.

I promised myself at the begining that I would never hold back; good and bad. For the first time I am trying to withhold comments because I feel that I am Jaded right now-- I am worn down and loosing perspective --- These times come BUT they also go.  I need some rest, respite and/or escape-- I know it, I just dont see any possibility right now especially with the issues Dakota is going through.
So I will hold my comments on this particualr "chapter" of our lives till I feel my words are not tainted by my own frustration.
So much going through my head yet my words are empty.


       
   

What Health Care Reform could mean to Dakota

This is just a tip of the ice berg but below are some of the reasons why we need paasage of Health Care
FOR EVERY UNITED STATES CITIZEN.
Not only those who have the intellectual or developmental challenges but those who care for these individuals need this legislation.

Provisions in the Senate Bill that are Most Important for


People with Intellectual and Developmental Disabilities

Coverage

• Prohibiting private health insurance exclusions for pre-existing conditions.

• Eliminating annual and lifetime caps in private insurance policies;

• Restricting the consideration of health status in setting premiums.

• Expanding Medicaid to cover individuals with incomes up to 133 percent of the federal poverty line (approximately $29,000 per year for a family of four).

Benefits

• Ensuring that minimum covered benefits include products and services that enable people with disabilities to maintain and improve function, such as rehabilitation and habilitation services and devices.

Access to Quality Care

• Improving training of physicians, dentists, and allied health professionals on how to treat persons with disabilities.

• Requiring the Centers for Medicare and Medicaid Services to collect data on beneficiaries with disabilities access to primary care services and the level to which primary care service providers have been trained on disability issues. Ensuring prevention programs include a focus on individuals with disabilities.

Long Term Services and Supports

• Increasing the federal share of Medicaid, known as the Federal Medical Assistance Percentage (or FMAP), for home and community based services (HCBS) and during periods of economic downturn.

• Allowing states to offer additional services under the 1915(i) Medicaid HCBS Waivers State Plan Option.

• Providing spousal impoverishment protections for HCBS Beneficiaries.

• Strengthening long-term services and supports through a two pronged approach:

1) Taking pressure off of the Medicaid program:

The Community Living Assistance Services and Supports (CLASS) Act would create a national long term services insurance program which assists eligible individuals and their families to meet long term needs with a cash benefit and without forcing them into poverty to receive Medicaid benefits.

2) Improving the Medicaid program:

The Community First Choice Option would help to eliminate the institutional bias by encouraging state states to cover personal attendant services under the state's optional service plan instead of through the waiver system by offering a 6% increase in the federal share of Medicaid for these services.

Please remember that there have been many non popular pieces of legislation passed, that we now embrace and cannot believe that we ever did with out them -- Too many are speaking on behalf of quashing this movement -- I want to take a stand to let others know why we need to embrace it!
Remember Womens Sufferage--- The Social Security Act and how 'bout Civil Rights Legislation???? So many opposed these; but where would we be without any one of these laws now???
I am not trying to shove this down anyones throat -- what I am doing is trying to cast light on a side other than the ones out there protesting the opposite view point-- Decide for yourself  but rememeber the greater good.
Think about Viet Nam many of us were out there telling you it was wrong and we needed to stop the war yet it raged on and divided the country and families. Years later we were vindicated for our protest.I truly believe that Health Care absolutely needs to be passed, Stop listening to the media and the sound bites. Read, study, ask questions. Do you honestly believe that anyone of those people in Congress are trying to push something off on us that will harm us or devour our country--R E A L L Y ?????? And they are jepordizing their own political life by doing so?????? R E A L L Y ?

 MY information is that the first year it is enacted it will save us millions of dollars and in the first ten years it will save over a trillion--

OK I do not want this to be a political forum and I will not say anymore but I felt a duty to so once! THE END.

The Day Came---Police

My mother was a great person raising me.She taught me all the things we need to know about being a good person and treating others with respect and dignity. To "do unto others" and all the moral things of how to treat people. Judging people has always been a pet peeve of mine and especially since I have had a child with a disability that is not obvious from first glance.

We live in a society that thinks with their eyes. We also have a society which is unyielding. Most people believe that what they are going thru is always more serious or takes precedent over others.One other thing I have discovered, is that understanding transferrence or concepts for most is virtually nonexsistant. Example; Someone who has open heart surgery or cancer or diabetes and an individual who has Autism are EQUALLY DISABLED.
When an individual with Autism has a "behavior" that is the same as someone falling into a diabetic coma.It can be managed, it can be medicated BUT it CANNOT ALWAYS BE AVOIDED.

Something went terribly wrong a day ago. We had to take Grandma for some tests. When we got to the lab {one we had been to many times before with NO INCIDENT}Things were different.Mostly the chairs had been rearranged from the previous visit but also there were a few more people than most times we had been there.

Not exactly sure what started the behavior-- I have several guesses but irregardless Dakota grabbed his Grandmother.Immediately I sprung out of my chair to disengage this "behavior". But I knew we were in for a rough ride. My thought was to get him out of the building as fast as I could. Of course the more I insisted the worst it became This is where that judgement kicks in. There was an older man with his wife who was protective of and I give no argument for his concern. She was sick. I could tell that this guy was "old school"{I was trying not to judge him and give him the benefit of the doubt to understand my situation} He was not having any of what Dakota was putting down.I tried to assure him I had it under control and we manuevered away from him ,his wife and others. {when Dakota was little I would just throw him over my shoulder and haul him out like a sack of potatoes.}

Of course this was a behavior that was not going away easily. It escalated to filthy words, shouting and some physical agression towards me--since I was trying to quash the whole thing.Something snapped with me and I knew I had to get him out of the lab. Mostly because this old man had a look like he would just as soon shoot Dak than to understand him--so it was time to go. Actually at that point I was in auto-mode.I do not know how I got him out but I physically escorted him out and got him to the car.

He refused to get in the car at first and I insisted that he was not going anywhere but in the car. He shouted and called me a few choice names and let the F-BOMB fly at the top of his lungs. He grabbed ahold of my neck and rocked me back and forth, bounced his head on my head and attempted to threaten to bite me. {which  knew he was not going to succeed as I had "moves" to avoid that}I was able to finally convince "the behavior" that There was no place to go but in the car.At least I felt like it was somewhat contained {in the car} at that point.This type of behavior does seem to come in waves; it is always turbulant but there are "rogue waves" that are far more intense than the rest.

At some point in the car it escalated again and he grabbed my arm, then my hair and before I thought it through I grabbed a bottle of water and splashed it on him. WELL  "MY BAD". I might as well have thrown lighter fluid on a match. He really flipped out and tried to get out of the car. First I tried to "hold him at bay" but decided that I had to let him go. I contemplated allowing him to roam the parking lot to release the frustration. It was a busy parking lot and I was concerned for his safety. In hind sight I think now letting him blow off steam and walking around the parking lot MAY HAVE defused the behavior sooner but I will never know now. By the time Dakota got out of the car I was able to get around and corral him between the car door and the seat of the car, He was so mad at me and he was continuing to yell and at one point even begged me to slap him repeatedly.I could not do that.

You see although he is a full grown man his agressiveness really has NO INTENT behind it. He can growl and be physically threatening but his ability to truly hurt would be purely accidental. My bigger fear is that I dont keep my wits about myself and react as most "typical" people would. Lash out and really hurt him. All it would take would be an elbow or a punch and he could be really hurt.I just could not do it.Nor could I slap him at his request.

I believe that when he is at that point of the behavior he knows that he has absolutely no control over the static or disconnect in his head. He believes that the physical pain will release the endorfins or seratonin which makes him feel better. Many of the most severe Autistics have self injurious behavior such as rocking or head banging to release these self made chemicals which theoretically soothe the brain.

So back to the parking lot: By this time what seemed like years had gone by but I am sure it probably was about 20 minutes total; since the start inside had past--a few people asked me if I needed help and I kindly told them
"No Thank You that Dakota was Autistic" and I had it under control, this was all over Dakota's distress and yelling. I just had to allow it to blow over. Even though it appeared to typical people, "judging " with their eyes,Thought differently.

Finally the fit was coming to a conclusion and I was able to convince him to get into the car again. He sat down, strapped himself in the seat and was ready to go for a ride till Grandma was done.{I know I have said this before but these behaviors present themselves like seizures--as fast as they come---they go.}I start the car and as I am backing out I notice a motorcycle Policeman coming up the isle right behind me.I exit out to the street and before you know it I have the red and blue lights on me and I am being pulled over. Thats right just as if I had committed a crime.

I understand that someone felt like perhaps I needed assistance. For the most part the Police were very respectful and accommodating but again someone somewhere made a judgement that Dakota was hurting me.I realize there was shouting and physicality and from an onlooker perhaps they thought they were doing a good deed. The police ask me if I was just at the Lab and what was happening. They were there to help but I still felt like it was unnecessary. They asked if I was OK and if there was anything else that I needed or they could assist me with. Again they were extremely kind and I appreciated their ability to not come on with the "cop attitude". In fact I called the station afterwards and commended the officers. 
BUT really folks it took 1 motorcucle policeman and 2 patrol cars with 2 men in each of them to respond to a relatively benign situation.

It was a pretty hairy behavior but it passed as they all do. I am more sorry for Dakota and what his head must go through when something like that happens. ONE THING I KNOW FOR SURE is he CANNOT help himself at that point.

Finally if more people would stop judging with their eyes and really consdering others and their situations, we would all be better off. In particular a disability is a disability is a disability. If some has cancer you do not love them any less, if some one has a heart problem you do not love tham any less,If someone has Autism YOU DO NOT LOVE THEM ANY LESS!       


this was our first encounter with the poice and I certainlu hope our last.I have such a great fear that they will try to find a reason to take Dakota, That day will never come as long as I have a breathe left in my body!            

3 good days

Well it may not seem like much to most of you but we have had 3 good days. It makes me very happy.
Since just before Christmas there has been a lot of turmoil and high emotional drama running rampant through our home. It has been tearing me up---
There is no Mother that wants to see her child in pain or emotional stress and when it is associated with a lifelong disorder it effects you on so manylevels it is almost indescribable. Its like one of the Death Eaters from Harry Potter has swooped down and is literally sucking the life right out of you as you lay there helpless.

We have recently seen the doctor and have discussed some options and perhaps some of those are helping but I chose to believe that it is just the phase--- phasing out. We are trying a slight increase in the meds and Ihave started him on a sub'lingual B-12 supplement. Don want to do too much at a time cuz then you wont be able to figure out what caused the improvement.

For now I will just take the 3 days and be Happy

"Flashback"

Speaking of behaviors--- we had an interesting one yesterday;
Dakota arose to a bit of anxiety as he knew he had plans with a few "mentors" to do some exercise later in the day. He was so anxious that he wanted to get dressed and go several hours before these people were going to be ready for him so of course I tried to "fill " the time and placate until the afternoon.

We headed over to the fast food choice of the day and when we entered the parking lot; I had challenged him to get out and go in and eat rather than drive thru and take it back to the house--at first he appeared open to the idea but when the car hit the parking slot he said "NO NO" -- I said "OK you want to take it home!" I started to pull into the drive thru and from no where his eyes filled with tears and he started shouting about cutting all his hair off {which was left over from the night before--he continues to twist his hair and deface his hairline and MY frustration is growing to the point that I am resolved ALMOST to shaving his head and starting from scratch with the hope that it will stop that behavior{again be careful what you wish for}}. 

So I put the car in reverse and backed out, found a parking space which the whole lot was basically empty and shut down the car to have a discussion with him about this issue. Within 2 minutes it was escalated to cuss words and shouting and his statement"Thats it Im getting out of this damn car!" 
Out he goes--slamming the door behind him. I took a stand, with the environment being relatively safe to allow him to storm off. The lot was wide open and we were quite a ways from the street which was a side street with less traffic than  main drag. He walked about 30 to 40 yards away and stopped by a cement cylinder that housed a tall light. I did not move and I kept the motor running so I could "jam" if I needed to get to him quickly.
About 10 or 15 minutes passed and I could tell he was attempting to find his way back--the anger had passed. What I observed was rather interesting and perplexing. He stood there and rocked back and forth-- picked up his feet and tried to step towards the car but it was as if he was in a clear plastic box that he couldnt get out of--- Pretty soon he starts calling with his hand to his mouth "where are you??" I was in plain view with no other cars between us-- he could see me, he could hear me but he could not move from that lamppost. I swore I wasnt going to go after him. I wasnt going to move but as I watched him struggle I knew his body WAS NOT  going to allow him to walk back to the car. I took incrimental steps by just getting out of the car first and encouraging him to walk back the same way he went-- that didnt work--- He started to step on the lines for the cars to park between and he could not get himself to move beyond those lines---Finally I walked across the isle and encouraged him to come, again and he could not do it-after 3 or 4 sessions of trying I got within 10 to 15 feet of him, held my hands out and said "Come on you can do it". It took everything he had to step toward me. As soon as he had my hands he held on for dear life.The first words out of his mouth were "I was having a "flashback" Momma from when I broke my leg" "I was afraid to move"   

I am not sure what to think of this whole episode. heres where I am at: first and foremost any kid that can express that he was having a "flashback" is certainly not retarded as the Inland Regional Center would like to label someone like Dakota.  
Secondly as much as Chaffey Joint Union High School District would like to think that it was "just a broken Leg" and "things like this happen all the time"  it scarred my kid far more than they will ever imagine and it is sad that he still has to struggle with this kind of trauma 5 years later!  

Slight Improvement

Ok I guess its like Murphy's Law 2 steps forward -- 1 step back????
The past 2 or 3 days have been a bit better. I have made an effort to get Dakota out and a bit more active.Not only to keep his mind busier but also to wear off a little energy which I hope will help his "coping mechanism".

There have been a few quick little tantrums although I must admit he had a pretty good blow out tonight. It was short lived however it was intense.My biggest fear and hardest challenge is to not react as a typical person would by decking him -- which I know would happen if he was in the "real world" and he acted like that to someone who did not know him. Again I maintain that his behavior has no intent to actiually hurt someone but by his shear size he has the potential. 

I am begining to be convinced that these behaviors are "seizure-like" in nature.They come and go within minutes, they have a very severe intensity but as they pass Dakota is almost "post-dictal" {exhausted and lethargic} aftward and recently I have also noticed that his body and particularly his head gets very hot. I have heard of people who spontaneously combust and I am seriously wondering if there is any connection. I know its sounds crazy. However if you dont witness it you wouldnt believe it .  

I have started a regiment of sublingual B-12 and have increased is meds a bit. I do not attribute the past few days of calmer times to this change. I believe the activity and having something to look forward to has been more relevance.  

AllI can say is I will keep working at it till I either figure out what the "pre-cursor" is that triggers this  or until I can convince a medical professional that this needs further investigation OR BOTH!

For now I will take the slight improvement !

Hormones???

This madness continues---
Rage over what I cannot figure out. I have educated guesses but I cannot get him to tell me what is causing him pain and/or sorrow because during the course of his rant he explodes into tears. It drains me emotionally . As a parent you want so badly to "fix" the problem or find the solution. 

We have recently seen the doctor. Its one of those moments where the doctor wants to shrug his shoulders and basically pass it off as "the nature of the beast"  Everything in me says theres something specifically wrong. When you deal with an emotional disturbance or a neurological issue; where do you start ??   

And when you have no input how can I fix it or even present a case to any professional. I am exhausted  as I have no solution and seemingly no tools in my tool belt to help the situation.

Tonight my guess is that the TVschedule is in flux with all the Night time talk show wars and the Olympics on top of it--- he just cannot  digest the change. He is so ridgid in some aspects of his life.

Moreover my "educated" guess from my "on the job" training is that this is passage from the puberty to full adulthood and the hormones are even stronger than before. I may be totally wrong. It seems like the only correct assumption I can come up with. Believe me I dont have anything in my belt for that!

I will give it a little longer but if things dont even out I will hit the war-path. I will not rest . This is not like any behavior or action I have seen from my boy to date. I know him well enough that something is not right and again Hormones is my only guess.  

Quality of Life { vs.quantity ?}

Recently there have been several discussions on the Autism web groups about medications, homeopathic and holistic solutions. Whats right and whats not good. How you make decisions. More over what combination works for your child and family.

One specific issue is the drugs and all the "baggage" that come with it. First line of defense is that you dont want to give your child drugs. Your whole pregnancy it is beat into your head what you can and cant take because you dont want to hurt your baby: No alcohol-- God forbid Fetal Alcohol Syndrome!, No caffeine could cause birth defects and your child could be addicted, No smoking of course thats not good for the Mom as well as the baby, Obviously no uncontrolled substances, eat right , get lots of sleep, stay off your feet,etc etc etc--- OK  OK  We all get it and we all want to have healthy happy non-addicted  babies. For the most part we all sign on to this thought process because afterall; we want to be responsible caring protective parents.

 Then the baby comes and if your lucky you go home with your little bundle of joy and life goes on basically without a hitch. I dont know the exact percentage but lets just say 75 to 80% of the time that happens. Its great odds right????
Well for those of us who havent been so fortunate, The world is a different place. You walk into the Nursery where your child is being pumped with numerous drugs and has gadgets attached and you are speechless. Then if your lucky it is only temporary and in a few months everything is ok and it is all a distant memory. Then there are the rest of us who go home with great aspirations that things will get better and it is all the "Great Unknown". 

During infancy and toddler mode our kids have a great ability to "blend in".
Everyone is willing to work with your child and are exuberant about how cute they are and what a joy they are to work with. Somewhere around later elementary school, our children go from adorable and cute to "a force to be reckonned with!" They start growing and developing now the issues and confrontations start.

Most of us have professionals that help; hopefully ones who try to be educated about Autism. Even in Dakotas case we have people who have known him from birth. Though these pros are compassionate, caring people there comes a time when you question behavior or things happening to your child  and even they give in to this damn exhausting Autism . It becomes easier and easier for them to say "well its just the nature of the beast"! My heart bleeds because I dont accept that.

As parents and caregivers we are willing to provide whatever it takes to help our child exsist in this less than perfect world. Many "Uber" parents have tried and done strategy after strategy GfCf diet, ABA, OT, PT, just to name a few, Mostly in the name of avoiding medications. My hat is off to them. It takes a lot of work and committment. BUT isnt isnt always the answer. 

What I have discovered is that no matter what you do when you strip away all these options our kids are Autistic and will be for the duration of their lives. Ultimately we have to love and accept these kids as they are. WARTS AND ALL! Autism although it does not define them it is a part of who they are. There was recently a post by a girl who is High Functioning autistic who expressed her frustration with her parents because she felt that they were trying to "change" her.

I think the point I am trying to make is that you have to make decisions for whats right for you, for your autistic child and your family. And you have to advocate for your child when you feel something is not right. I have always said that you have to "GO with your GUT".
It will never let you down.

Finally there is never a cookie cutter answer when it comes to our kids. In the 23 years I have walked down this path I have seen "cures and therapies" come and go. For the most part these solutions work for a certain portion of the Autism community but I have yet to find anything that works across the board.
{Including medication} what I leave you with is one last thought: isnt always better to err on the side of Quality of life verses Quantity?
Dont let other decide for you-- take their counsel but make your own decision!

 This as an after thought- what spurred this particualtr excerpt was a discussion about certain medications causing weight gain and the aversion many parents seem to have about their children gaining weight.I understand out kids are already faced with challenges beyond the norm and we need to be diligent and concerned about their health and the side effects any medication might cause-- However when you have a child so miserable that they are acting out or crying or WHATEVER because their heads are so filled with static wouldnt it make sense that weight gain could be a small price to pay if your child felt better?Hence the Ultimate Question about quality verses quanity