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
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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.
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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!
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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.

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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.