A Room Full of Toys

The title just about says it all---I cant tell you how many things we have bought to try to encourage and promote Dakotas growth educationally and socially-- I walk into his room and say Oh My God I have got to do something with this stuff --he has surely out grown this or that--Then I think "How can I give away all these things I have tirelessly and diligently  collected just to help him???"

Its no secret to all who know me; I am one who has difficulty throwing things away or giving them away for that matter, but my mother makes me look like an amateur--Ha Ha

Also I still have fleeting hope that I will find the right connections to get My Autism Center started and all of the things I have hung on to will then have new meaning and use.

Then something like this happens: Yesterday Dakota walked into his room and gets this twinkle in his eye and a smile on his face -- he points directly to a box that has been sitting on his dresser for at least and I mean AT LEAST 10 years and says "heeeeeeeeyyyyyyyyy who's that?""I know who that is !" All of a sudden after all these years he now has renewed interest in  a box containing a Magic Rock Garden  with a picture of Beakman of Beakman's World. Just recently Beakman's World has been airing on Saturdays and Dakota has been watching it with great interest and intensity. This I believe is spurred by the fact that he is also attending a regular science class at school.

Sooooooooo  now my instincts are validated about holding on to crap that should have gone years ago but more so that WE NEVER KNOW When that window of opportunity will open for our kids!! There just is no timeline with these children -- you can try and force and push but they will get it when they are ready  NEVER GIVE UP ! And never let go of something if you think that somewhere down the line your child may use it. I have so many things that are not so "age appropriate": but they have "educational value"{alot of electronic learning devices} so I will not give this stuff up, Now that this last episode has happened with the box recognition my hope is on  high again----and in the next week we will open up the Magic Rock Garden and put it to use! FINALLY!

Weary

There are many conquests and successes that I try to notate because those who read this  I want to encourage! But as we all know life is not all roses and at first thought I did not want this journal to go down as all "fluff" and no "grit". After taking a brief look back at my entries I guess I have presented a "Fair and Balanced" report.

All of that being said I had a moment yesterday that felt like a 2 ton rock on my shoulders-- It was nothing specific it was just daily living and the routines that I do everyday --somehow it just piled up and got to me yesterday. It actually flowed over a bit to today so thats what has brought me to write tonight.

Many ask you what the future holds and you reply in ernest you really dont know. Of course like any other parent you hold out hope that some miracle will happen or that your child will just wake up someday and the "grey curtain" inside their brains will just be gone--- The simple truth is they will always suffer from Autism. Every parent prays for a "cure" tommorrow--hell yesterday; but the simple fact is even if there is a "cure" those that already suffer from Autism will for the rest of their lives.

There are many treatments and strategies that seem to help some if not many kids but there is no magic formula for ALL.Similar to diabetes there it does seem that things like diet can help a large population of Autistics-- but it does not cure it.

This is incredibily frustrating-- when you see you child struggle ever day with things that "typical " children parents and families dont struggle with it makes you want to scream. everyday is a challenge to present opportunities so your kid can be "normal " or have a "normal experience".Things as simple as having a typical experience in the school cafeteria or playground.Forget the classroom that is a challenge that is mainly driven by an IEP {INDIVIDUAL EDUCATION PLAN}  but you have no control over the outside forces like the other children in the class or even some staff members in and out of the classroom like the secretary in the office or the janitorial people. Then your child begins to get older and ther are things like dances and sports tryouts, plays, and music or art-- Things that are usually taken for granted by parents : most kids initiate their own involvement. Our kids just dont do that

And that where the weary comes in--- as you go thru the daily routine of Autism sometimes there is no end in sight --there wont be an empty nest, there wont be a wedding and grand kids, there wont be a college graduation, and the list goes on--- It makes your heart weary it makes your brain work over time how you can be creative to take the crayons you were given and to color the picture the best you can-- Just when you think you have things under control  whooooooops here comes a tantrum or you have to go help in the bathroom or you get a call from school and something has happened there   SWOOOOOOOOOOOOOSHHH you are on overlaod over time! Its a wild ride!

When all this happens you feel your spirit being crushed and you just want to cash in your chips and quit playing. Then from somewhere -- I dont know where you get a second wind-- your baby says "I love you Mommy" or he goes and takes the stuff out of the dryer or some simple thing and you are RE-NEWED. As if someone has breathed new life into you-- You go to sleep and wake the next day and things have been washed from your worries and you press on.

I had a day of weariness yesterday but tonight I can write about it and urge others to know that the day will come and go but our kids will always need us to be their champions--and thats what washes away all the doubts.

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HOLIDAY ALERT!

I know that Halloween has already passed but I wanted to extend a quick reminder how difficult the holidays can be for our kids---Save up some special patience and be aware of the changes and the triggers in their "typical " world-- This time I speak of typical meaning "our kids world" where we try to keep peace and calm and routine---

Mnay of the places our kids go on a day to day or monthly or yearly routine will have changes during the holidays-Smells of food and aromas of the holidays may be in places that are usually very sterile. Flashing and flickering lights, Holiday music.decorations, holidays cards hanging from places that are usually barren. The local grocery store or video shop even the fast food places may have holiday changes-- The Mall is a very challenging place anytime of the year but at Christmastime, its a Nightmare for our kids.Displays of mechanical moving figures and fake snow everywhere. Every sense in their bodies is over stimulated.

Just be aware especially if you see unusual or un-orthodoxed behaviors take a step back and assess. Your child isnt doing it to torment you --Most likely they are re-acting to changes that are usually pleasing to the "masses". Sometimes its hard for even the best of parents or caregivers to recognize that what we like and enjoy can be a huge problem for our kids.

The Eagles Concert

Its been a couple of weeks since Dakota and I attended the Eagles Concert at the Nokia Theater and I have to say it was a success-- Once again If there is anyone out there who is looking to sponser a special needs kid Please contact me Because these activities are killing me in the wallet--- Heres the "rant" {I will get this part over quickly} From Ticketmaster NOT A SCALPER the Orchestra tickets were $265.00 {A PIECE--Thats right EACH} PLUS tax PLUS "service charge" Then they GAB you with a delivery fee from an Online prnted ticket the cheapest about $2.50 to Next Day Delivery by FedEx which can be upwards of an additional $20.00 to $25.00. So we are talking about 600 bucks just to get in the door! Now lets add $25.00 for parking even handicap parking--not reduced $40.00 for a T-shirt and about $22.00 for a Coke and a few snacks--WHEWWWWWWWWWW How can an average family afford this???It just boogles my mine. I know your activities dont have to always be "fancy expensive" activities but come on folks all of us want do a few things for our kids or just have a night out from the kids with out paying for it for the next year-- How do you do it??If you have any recommendations I am all ears.

As far as the Nokia Theater it was a very nice venue but it has its imperfections as well.We were lucky to get really great seats as far as location--in the front of the Orchestra section however all the seats are not the same in actual size or should I say width--the 3 center sections have larger seats than the outside sections and even some of those seats have tighter restrictions because they have added cupholders which make the "point of entry" even slimmer.My suggestion for future design of these types of venuesis to install the same type of seats that are in the Movie Theaters-- The ones that have the arms that raise up -to accomodate couple as well as people who have trouble"fitting" into the restrictive seats. Needless to say I will be more decerning of my selection of seats the next time I can AFFORD to attend a concert at this venue-- By The Way THIS IS NOT THE ONLY VENUE WITH THIS PROBLEM!

Ok Heres my biggest bitch about this-- If I am paying $250+ for a damn ticket I should be able to fit in the seat COMFORTABLY! I am not the only person with a "Rubenesque" figure perhaps over 50% of the people at this event were "over sized"or "plus-sized"Give up a hundred extra seats so those of us who are in attendance can COMPLETELY enjoy the venue .

Now the rant is over THE SUCCESS was overwhelming Dakota did so incredibly well! This event happened on a night he usually goes with his Dad, this is usually a point of contention which could trigger behaviors--We had NONE The noise, congestion and confusion of people going every which way hollering, running and moving in unorthodox ways he handled beautifuly. A new place with lots of challenges elevators, escalators, stairs etc No problem--- I cant sing his praises enough And I can say that 5 years ago I am sure he would not have handled this situation. You have to keep the faith that your child will evolve because Dakota proved that to me. Even when we struggled with a seating change he was compliant and rolled with the changes.This is the type of the opportunity you can take to "stretch " your childs abilty to grow.

When The Eagles hit the stage; although we were to the extreme side of the stage; we were very close and the visual affects were almost overwhelming. Although Dakota was reserved I could tell he was completely in to the music. He stood up, hollered and whooped it up , clapped and sang the words to the songs --I could not be MORE PLEASED! This was only the second concert I have taken him to and the first indoors and I have to say that I was so happy for him because I know he enjoyed himself.

When he went to school on Monday he "donned" his Eagles T-Shirt and several of the kids {including typical kids} and staff approached him and asked him if he went to the concert and did he like it? So not only did the weekend produce an activity for him that he had great success but it became an avenue for "inclusion" or "mainstreaming" with the typical community at school! A Win Win scenario.

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?