Guilt and Observation

Boy is this a loaded topic: I have laid in bed many nights thinking about writing this "excerpt"and really have come to no conclusion just a lot of opinion.Those of us who have special needs or challenged children operate in a different frame of mind on a daily basis---The most prevalent feeling is guilt-- What did I do that caused my child to enter this world with such overwhelming challenges??Could I have done something different ?Did I do something wrong? What can I do to make it up to this child??How will our family survive?What can be done to allow my child to live the most "normal" life possible?{Theres even guilt about referring to "normal"} {What is NORMAL?}How can I make it easier for others to embrace my child?And list goes on and on and on...........

Once you emerge from the first stages of the denial and guilt you realize that what will be will be and you HAVE TO Pick yourself up by the boot straps and get on with life and the living--

You educate yourself and begin to grow with your child and try to do all that you can to bring him into the world as it is and by the same token bring the ways of the world to him.There is a constant struggle to alter and adjust those around your child to understand and accept their diasbility.Somehow you know that the world in general will never change or accept anything less than the "Status Quo" so you try to "mold" your child to recieve everything that will be thrown in his path-- Sometimes you have a child that can handle it and sometimes you dont--BUT YOU NEVER STOP TRYING

Coupled with all this "manipulation" comes daily living and the "normal" world of a child and soon to be adult--The Christmas Pagents,The candy drives,The science Fair, Girl Scouts or Boys Scouts, Sleep overs, Football tryouts, Cheerleading tryouts, Homecoming and Football games, dances and the Prom, Graduation ceremony OUR KIDS and our families dont enjoy those simple things the same way someone who has "typical" children. I am not trying to evoke sorrow or sympathy only trying to open eyes to a different perspective-- I really believe that most who don't live with these challenges do not have a clue how different it is for us. Many if not all of the parents of these children with disabilities were typical kids themselves and had "normal" lives growing up so wanting their kids to have the same experience is exactly like a parent of a "normal"child {boy is that an awkward sentence} HENCE GUILT

As time progresses either your child does or does not but as a parent you continue to be relentless in the pursuit of making things a good as you can for your child--many of us fail a lot of the time but when you suceed you are on top of the world--What you find yourself doing is presenting situations or events that your child can function in repeatedly exposing them so they can have a "normal" experience in life-- This too comes with a price Then the child becomes so accustomed to the routine then it becomes an obsessive activity HENCE more guilt because you promoted it!!!!

Is there a happy medium--? No one know the answer.

And here is where my OPINION comes into this "dissertation"You have to do what is right for you, your child and family.You have to shut out the opinions of others teachers, professionals, in-laws, counselors, other peers,even my opinion and make your own decision. Do what feels right . Do what sounds right . Do what works right . How do you know--- This is the one thing I hope you will listen to me about:

GO WITH YOUR GUT---If it feels right and you know deep down inside that it seems right then it probably is...and you will never regret the choices or decisions you make. You may question yourself later but what I have found is that even as I look back on the 21 year journey I have traveled with my son I can draw peace in knowing that although I may not have accomplished all that I have wanted to, that I have tripped along the way I have no regret because I know I did what was right for the time AND I knew it in MY GUT.

Take no Prisoners Do Not apologize for your decsions You are playing a different game than others on this Life-Plane And your child only stands to benefit from a parent who stands up and makes the right decisions FROM THEIR OWN OPINIONS!

Aspartame --2 sides and a Mothers Opinion

Ok there are 2 sides to every story---

AND WHO EVER "THEY" ARE each tells a convincing story----

Heres my take--- Everyone deserves to know what is out there and what can "potentially" harm them

AND Being a Mom of a child who suffers from Autism with many opinions of how this horrible disorder occurs we sometimes need to know both sides of the story then make our own decision of HOW and IF it affects us and our families-

In the case of Aspartame I think it is particularly interesting because WE JUST DONT KNOW what AFFECTS WHO!!!

With environmental triggers like toxins and metals being considered as causes for autism how can we just let this information go by and not at least consider it?\

I want you to be a FREE thinker and decide for yourself

so both sides are included

For myself  I approach with caution because I believe that the world in general is poisoning itself with many convienences and substitutes-- Such as plastics and microwaveable products just to mention 2  How can putting food in a  plastic container in a microwave and "nuking it" to unbelieveable temperatures  be healthy for anyone????

My mother has insisted on glass pie plates and glass oven ware and I have to say that I think she has the right Idea

I will get off my soapbox   BUT please  consider this --think about it and think about how there are epidemics of Autism and Cancers and other disorders and diseases we have never heard of before----or are seeing huge rises of incidents

I think we all need to be more aware and pro-active:

here's the story

below is the disclaimer

SWEET POISON

A MUST READ

 In October of 2001, my sister started getting very sick. She had stomach spasms and she was having a hard time getting around.  Walking was a major chore. It took everything she had just to get out of bed; she was in so much pain.

By March 2002, she had undergone several tissue and muscle biopsies and was on 24 various prescription medications.  The doctors could not determine what was wrong with her. She was in so much pain, and so sick.she just knew she was dying. She put her house, bank accounts, lifeinsurance, etc.,  in her oldest daughter's name, and made sure that her younger children were to be taken care of.

She also wanted her last hooray, so she planned a trip to Florida (basically in a  wheelchair) for March 22nd.

On March 19 I called her to ask how her most recent tests went, and she said they didn't find anything on the test, but they believe she had MS.
I recalled an article a friend of mine e-mailed to me and I asked my sister if she drank diet soda? She told me that she did.  As a matter of  fact, she was getting ready to crack one open that moment.

I told her not to open it, and to stop drinking the diet soda!
I e-mailed her the article my friend, a lawyer, had sent.
My sister called me within 32 hours after our phone conversation and told me she had stopped drinking the diet soda AND she could walk!  The muscle spasms went away. She said she didn't feel 100% but she sure felt a lot better. She told me she was going to her doctor with this article and would call me when she got home.

Well, she called me, and said her doctor was amazed! He is going to call all of his MS patients to find out if they consumed artificial sweeteners of any kind.
In a nutshell, she was being poisoned by the Aspartame in the diet soda...and literally dying a slow and miserable death.

When she got to Florida March 22, all she had to take was one pill, and that was a pill for the Aspartame poisoning! She is well on her way to a complete recovery.
And she is walking! No wheelchair! This article saved her life.
If it says 'SUGAR FREE' on the label; DO NOT EVEN THINK ABOUT IT!
I have spent several days lecturing at the WORLD ENVIRONMENTAL CONFERENCE on "ASPARTAME," marketed as 'NutraSweet,' 'Equal,' and  'Spoonful.'

In the keynote address by the EPA, it was announced that in the United States in 2001 there is an epidemic of multiple sclerosis and systemic lupus. It was difficult to determine exactly what toxin was causing this to be rampant.
I stood up and said that I was there to lecture on exactly that subject.
I will explain why Aspartame is so dangerous: When the temperature of this sweetener exceeds 86 degrees F, the wood alcohol in ASPARTAME converts to formaldehyde and then to formic acid, which in turn causes metabolic  acidosis. Formic acid is the poison found in the sting of fire ants. The methanol toxicity mimics, among other conditions, multiple sclerosis and systemic lupus. Many people were being diagnosed in error.  Although multiple sclerosis is not a death sentence, Methanol toxicity is!

Systemic lupus has become almost as rampant as multiple sclerosis, especially with Diet Coke and Diet Pepsi drinkers.  The victim usually does not know that the Aspartame is the culprit. He or she continues its use; irritating the lupus to such a degree that it may become a life-threatening condition.
We have seen patients with systemic lupus become asymptotic, once taken off diet sodas.

In cases of those diagnosed with Multiple Sclerosis, most of the symptoms disappear. We've seen many cases where vision loss returned and hearing loss improved markedly.

This also applies to cases of tinnitus and fibromyalgia.
During a lecture, I said, "If you are using ASPARTAME (NutraSweet, Equal, Spoonful, etc) and you suffer from fibromyalgia symptoms, spasms, shooting, pains, numbness in your legs, cramps, vertigo, dizziness,  headaches, tinnitus, joint pain, unexplainable depression, anxiety attacks, slurred speech, blurred vision, or memory loss you probably have ASPARTAME poisoning!"
People were jumping up during the lecture saying, "I have some of these symptoms. Is it reversible?"

Yes! Yes! Yes! STOP drinking diet sodas and be alert for Aspartame on food labels! Many products are fortified with it!  This is a serious problem.
Dr. Espart (one of my speakers)  remarked that so many people seem to be symptomatic for MS and during his recent visit to a hospice, a nurse stated that six of her friends,  who were heavy Diet Coke addicts, had all been diagnosed with MS. This is beyond coincidence!

Diet soda is NOT a diet product! It is a chemically altered, multiple SODIUM (salt) and ASPARTAME containing product that actually makes you crave carbohydrates.  It is far more likely to make you GAIN weight!

 

These products also contain formaldehyde, which stores in the fat cells, particularly in the hips and thighs.  Formaldehyde is an absolute toxin andis used primarily to preserve "tissue specimens." Many products we use every day contain this chemical but we SHOULD NOT store it IN our body!

Dr. H. J. Roberts stated in his lectures that once free of the "diet products" and with no significant increase in exercise; his patients lost an average of 19 pounds over a trial period.

Aspartame is especially dangerous for diabetics.
We found that some physicians, who believed that they had a patient with retinopathy, in fact, had symptoms caused by Aspartame.
The Aspartame drives the  bloodsugar out of control. Thus diabetics may suffer acute memory loss due to the fact that aspartic acid and phenylalanine are NEUROTOXIC when taken without the other amino acids  necessary for a good balance.

Treating diabetes is all about BALANCE. Especially with diabetics, the Aspartame passes the blood/brain barrierand it then deteriorates the neurons of the brain; causing various levels of brain damage, seizures, depression, manic depression, panic attacks, uncontrollable anger and rage.

Consumption of Aspartame causes these same symptoms in non-diabetics as well.
Documentation and observation also reveal that thousands of children diagnosed with ADD and ADHD have had complete turnarounds in their behavior when these  chemicals have been removed from their diet. So called "behavior modification prescription drugs" (Ritalin and others)  are no longer needed. Truth be told, they were never NEEDED in the first place!  Most of these children were being "poisoned" on a daily basis with the very foods that were "better for them than sugar."

It is also suspected that the Aspartame in thousands of pallets of diet Coke and diet Pepsi consumed by men and women fighting in the Gulf War, may be partially to blame for the well-known Gulf War Syndrome.

Dr. Roberts warns that it can cause birth defects, i.e. mental retardation, if taken at the time of conception and during early pregnancy.
Children are especially at risk for neurological disorders and should NEVER be given artificial sweeteners.  There are many different case histories to relate of children suffering grand mal seizures and other neurological disturbances talking about a plague of neurological diseases directly caused by the use of this deadly poison."

Herein lies the problem:
There were Congressional Hearings when Aspartame was included 100 different products and strong objection was made concerning its use. Since this initial hearing, there have been two subsequent hearings, and still nothing has been done. The drug and chemical lobbies have very deep pockets.

Sadly, MONSANTO'S patent on Aspartame has EXPIRED!
There are now over 5,000 products on the market that contain this deadly chemical and there will be thousands more introduced.  Everybody wants a "piece of the Aspartame pie." I assure you that MONSANTO, the creator of Aspartame, knows how deadly it is.

And isn't it ironic that MONSANTO funds, among others, the American Diabetes   Association, the American Dietetic Association and the Conference of the American College of Physicians?

This has been recently exposed in the New York Times.
These [organizations] cannot criticize any additives or convey  their link to MONSANTO because they take money from the food industry and are required to endorse their products.

Senator Howard Metzenbaum wrote and presented a bill that would require label warnings on products containing Aspartame, especially regarding pregnant women, children and infants.  The bill would also institute independent studies on the known dangers and the problems existing in the general population regarding seizures, changes in brain chemistry, neurological changes and behavioral symptoms.
The bill was  killed.

It is known that the powerful drug and chemical lobbies are responsible for this, letting loose the hounds of disease and death on an unsuspecting and uninformed public. Well, you're Informed now! YOU HAVE A RIGHT TO  KNOW!

heres the disclaimer for Aspartame

Urban Legends Reference Pages: Aspartame -- Sweet Poison?

 

 

Bad Start to the Day

I HAVE MANY CHALLENGES AT HOME EVERY DAY BUT I ALSO HAVE 2 FRIENDS RIGHT THIS MOMENT --Both of THEM Fighting SUCH DEVASTING FIGHTS THAT MY PROBLEMS SEEM TO SMALL

I WILL ADMIT THEY DONT FEEL SMALL TO ME BUT WHEN I REFLECT ON OTHERS I GUESS I HAVE TO THANK MY LUCKY STARS THEY ARE WHAT THEY ARE!

LAST TUESDAY DAKOTA WAS IN THE BEDROOM HAVING A HUGE ATTITUDE BEHAVIOR GROWLING AND YELLING AT ME OVER GETTING READY FOR SCHOOL-- -- ITS A COMPLICATED STORY BUT IN A NUTSHELL GRANDMA BROKE HIS JUICE GLASS SEVERAL MONTHS AGO AND SINCE HE HAS REFUSED TO DRINK ANY JUICE--{not the right glass not going to drink juice!} SO I HAVE BEEN TRYING TO FIND A REPLACEMENT-- MY NEIGHBORS HAVE BEEN TRYING TO FIND A REPLACEMENT-- THE TEACHER HAS BEEN LOOKING FOR A REPLACEMENT. ITS AN OCD THING WHERE HE HAS ONLY ONE GLASS FOR JUICE , ONE FOR WATER, ONE FOR TEA AND HE ABSOLUTELY REFUSES TO DRINK OUT OF ANY OTHER GLASSES ---

NEEDLESS-TO-SAY IT IS INCREDABLY FRUSTRATING BECAUSE IT BECOMES A HEALTH THING TO HYDRATE HIM-- HE WONT DRINK OUT OF ANYTHING ELSE AND I DO MEAN ANYTHING ELSE!

ANYWAY THE GLASS WAS AN OLD LIBBY GLASS WITH THE GREEN LEAVES AND ORANGES ON IT FROM HIS DADS MOTHERS HOUSE--- SO I HAVE BEEN SEARCHING ALL THE ANTIQUES STORES SINCE LIBBY NO LONGER HAS A DISTRIBUTION CENTER OPERATING AND I HAVE BOUGHT AND TRIED PROBABLY 7 TO 10 DIFFERENT SIMILAR GLASSES--NO GO

SO THIS MORNING I HAD THE CLOSEST MATCH YET-- THE PEOPLE AT THE ANTIQUE STORE FELT SO BAD FOR ME THEY FOUND SOME SIMILAR GLASSES SOMEWHERE ELSE AND BROUGHT THEM TO THEIR STORE. THEN CALLED ME AND GAVE ME THE GLASSES --NO CHARGE

THIS MORNING I PUT JUICE IN IT AND SET IT ON THE TABLE WITHOUT ANY DISCUSSION OR WORDS-- HE SAT DOWN FOR 30 SECONDS AND JUMPED UP AND STARTED SHOUTING I AM DONE -- I AM NOT HUNGRY--

AND THE RIFF--ENSUED-- EVENTUALLY I TOOK THE BREAKFAST AND HOT TEA INTO THE BEDROOM TO ENCOURAGE HIM {mainly because of his meds}TO EAT WITHOUT THE ORANGE JUICE AND HE STILL INSISTED HE WASNT HUNGRY AND STARTED GROWLING AND PUFFING UP LIKE A ROOSTER.

FINALLY I PICKED UP AND LEFT-- ITS JUST NOT WORTH IT. THE DAY WAS PRETTY MUCH A WASH AND I DECIDED TO DROP EVERYTHING AND LET "MOUNT VESUVIUS" REST. EVEN SCHOOL WAS PUT ON HOLD-- I WILL NOT HAVE A START TO A DAY LIKE THAT AND THEN TAKE HIM TO SCHOOL EXPECTING THAT EVERY THING WILL BE ALRIGHT;ONLY TO GET CALLED A COUPLE OF HOURS LATER AND FIND OUT HE HAS HAD A TOTAL MELTDOWN. THE MIND THOUGHT IS I WILL NOT BE ABLE TO DISCERN WHETHER THE BEHAVIOR AT SCHOOL WAS FROM SOMETHING THERE OR WAS PRECIPITATED FROM THE BLOW OUT THIS MORNING AT HOME.

DAKOTA FIF FINALLY EMERGED FROM THE BEDROOM HAVING DRANK SOME TEA AND NIBBLED ON A SMALL PIECE OF PUMPKIN PIE AND BROUGHT HIS SHOES TO ME WHICH IS USUALLY HIS WAY OF COMMUNICATING HIS READINESS TO LEAVE. I WAS IN NO HURRY TO SEND HIM OFF TO FAILURE BUT I COULD FEEL THAT THINGS HAD "RIGHTED " THEMSELVES AND WE WERE ON TRACK AGAIN--HE FINISHED THE REST OF SCHOOL WITHOUT INCIDENT AND IN FACT HAD A GREAT DAY --SO THE END RESULT TURNED OUT GREAT.

I KNOW AS A PARENT OF TYPICAL KIDS YOU TRY TO COMMAND RESPECT AND TEACH OR SET AN EXAMPLE BUT WHEN YOU HAVE AUTISM IN THE MIX YOU LEARN THAT SOMETIMES ITS JUST NOT WORTH IT --- ITS SO HARD BECAUSE YOU STRUGGLE WITH WHETHER YOU ARE A GOOD PARENT BY LETTING THIS GO AND THERE ARE NO RIGHT ANSWERS!

MOST WHO HAVE TYPICAL KIDS OR DONT HAVE KIDS ARE QUICK TO JUDGE YOU AND YOUR STRATEGIES-- AND YOU GET A HUGE AMOUNT OF PRESSURE FROM SCHOOL AND THE STAFF WITH THEIR OPINIONS OR JUDGEMENTS

YOU HAVE TO BE STRONG JUST TO STAND FOR WHAT YOU BELIEVE AND IT IS SOOOOOOOOOO SOOOOOOOOOOOO HARD---YOU SECOND GUESS YOURSELF CONSTANTLY JUST "GO WITH YOUR GUT" AND DONT LET ANYONE CONVINCE YOU OTHERWISE.

The Repairman

After returning from our summer frolic I had lots of catching up to do including launbdry produced by the vacation Of course the very first load of laundry my washer decide to quit--- So I located a repuatble guy to fix the washer and made arrangements for him to come.

The doorbell rings and Dakota is not "presentable" so I explain to him that he cannot answer the door or be around the repairman if he doesnt get dressed appropriately. I leave the bedroom and let the man in and take him to my washer. All of a sudden the garage door opens and its Dakota and HES DRESSED and he has a big smile on his face! He was pulling on the waistband of the pants and so proud that he independently dressed himself! What a special moment-- He has always had some ability to HELP with his dressing but for him to intiate this social action by himself was amazing I WAS SO PROUD! I think the repairman thought I was off my rocker!

When the repairman left -Dakota and I started to go back into the bedroom and I found another surprize! Not only had Dakota seeked out a pair of pants and put them on by himself but he actually had tried another pair of pants but had trouble putting them on due to the zipper and they had gotten turned inside out somehow so he left them in a ball on the floor. I was more than happy to pick them up since we just had such a huge milestone!

This one is definitely what this journal is all about- - -celebrating the successes as well as documenting the challenges!

Birthday Bash

Early September found us smack dab in the middle of Las Vegas for a Birthday celebration-- Hard to believe that it was Dakotas 21st birthday!

When I think about the day Dakota was born and the many days before in labor {4 to be precise}and the horrible weeks {3} to follow in the NICU its hard to believe how far we have come!Although I admit everyday is still a challenge in many ways -- I can honestly look back at the begining and at least recognize all the accomplishments too. I have always been more of an optomistic person and prefer to look at the glass as half full than to ponder on all the things that went wrong or did not happen.

So this was a celebration of joy and happiness. A celebration to give Dakota an experience that any ":typical" 21 year old would want. Now I do admit we didnt do the strip club or the alcoholic beverage but we took in some of the best parts of Las Vegas. His Dad was also able to come and stay for a couple of days which enhanced the vacation for him.

We saw "the Beatles "LOVE" Cirque Du Soliel" which was fabulous -- I want to go back and see it again.  We also saw John O Hurley in "Spamalot" which I think Dakota loved because he loves John O Hurley!It was a great combination. Of course we had some great dining and what would Vegas be with out gambling.

Oh the week didnt go by without challenges but the experiance as a whole far outweighed the behaviors. His dad walked him all over the strip so he got to see many casinos and together we took him downtown to see the new overhead canopy and to get one of the "world famous" shrimp cocktails at the Golden Gate Casino for 99cents!he actually worked a slot machine at the Gloden Nugget and built up almost 90 dollars but instead of cashing out he insisted on playing till he was busted!!! I GUESS THATS JUST LIKE MOST OF US!

Rather than recount the challenges I will say that although I thought Vegas would be more difficult than it was and i was really glad that I choose to try this. The noise and the lights and the crowds were definite distractions even potential triggers for behaviors BUT we made it through . Perhaps better than I expected.That was a present to me.

It been Disneyland for years for Dakotas birthday but for once we tried the "adult " Disneyland and just maybe we will have an alternate destination in the years to come!HAPPY BIRTHDAY DAKOTA - - - - - - I LOVE YOU! 

   

Its A Matter of Perspective!

As I reflect on the summer activities and think about all we have done and all that has been said I find my self coming beck to a comment that was made by an Aunt - Whom I have had a couple of issues with before and something she said rather ignorantly this reunion. Without specifically naming her the part of this I find so interesting is that she is an exceptionally educated person and actually has one or more degrees in the psychology field which should lend itself to having a greater perception and understanding of Autism. All that being said Dak had a very difficult time the first night all the family got together as it was a crowded noisy restaurant not to mention a strange new place with faces he had not seen for 3 years-- well he did his very best to cope but eventually a glass of soda was spilled and that was the end of all he could do to "cope"-- some of it splashed on him and got on his shoe and sock-- Luckily O was prepared with backups in the car so we calmly removed our selves and went to the car to clean up and change socks-- He did really well but My Aunt leaned over to my mom and said "gee its really ashamed that you all have to deal with these things"

Perhaps she was trying to express compassion and I should take the high road and give her that -- however there have been other instances in the past where she had NO FRICKIN IDEA about Autism and how it affects my son or others -- I wont delve into the past but I guess this was the icing on the cake--

Yes we live with Autism and its the hand we were dealt and although no of us relish the idea we learn how to walk the path .It is a rather long and whindy road and the journey is different than most families travel.

My perspective is this Everyone moves to the beat of a different drummer-- many have the same or similar life Those of us who travel with Autism have a different way of looking at things-- My son is 21 now and although he may never drive a car or live completely independently---He loves to be around his Mom and Dad and Grandma for that matter,He doesn't walk around with his pants down around his knees with his boxers hangin out,He doesn't go out and break curfew ,He doesn't go out and crash his car,He does come home or go out and get drunk or do drugs and he certainly hasn't brought home some girl pregnant

So its all a matter of perspective-- So many parents I know who have "typical children struggle everyday with all kinds of strife or crap for that matter and in my world I have the perfect kid!