Thoughts at the End of the Year

As you can see by the date of the posts The Christmas or Hoiday Season has been interesting and overwhelming to say the least! Everyone I know has had issues with this year and our household is no exception!

Once again I want to make this journal exceptionally realistic --- I dont like to " whitewash" living with Autism.It is not a cakewalk! Yet it holds many joys and triumphs!

Recently we have been struggling with a huge amount of OCD{Obsessive Compulsive Disorder__an extreme need for sameness order routine and rituals} 90% of the time Dakota is about as typical as any young man.10% of the time is like a hurricane blowing thru the house or wherever we happen to be and you wonder if you will ever see the other side as you face "the gail force winds" of behavior!The strangest thing is to start an activity;everything is going fine you are having a great time its perfect ;hes doing well enjoying himself and somewhere a condition changes whether it be noise or crowds or colors or a routine and BAM everything you worked for or arranged just lost some of its luster because some how something went wrong and now hes in a place where I cant reach him. Worst of all hes doing something that could hurt, intimidate or bother someone else who is unsuspecting and clueless about Autism-- Its a Bitch

He is my baby and always will be and I want to protect him and give him every opportunity to experience the world as any "typical" person. When the behavior gets in the way there's just no redemption, no option you have to do what you can to "clear the field" and intercept or minimize the damage.Most importantly be strong enough to get up and try again-- Never give up, be Relentless because thats what a parent does and thats what any person without or without Autism deserves. To be a part of the community and the world.

Gettting back to the year in review and Christmas---Over all its been an ok year school has been good and vacation worked out pretty well and Vegas was a great celebration for Dakotas birthday-- Cant say we didnt have issues, we did and perhaps the years under my belt make it easier.The recent weeks have presented challenges that almost led me to admit myself to Camarillo State Mental Hospital--haha-- things have been coming at me from all angles and it has not been the Autism alone.

My observation is that Dakota lives with Autism constantly but it is not the only thing that defines him and as he grows older he is developing his own personality outside of Autism. It is often times very difficult to indentify the differences. Being the one who tries to "intercept " problems I now have to take pause and evaluate is this Autism or is this his personality.

I have decided that this is the way we have to reflect on this Year as well as anticipate the new year:Every day is a gift . Be thankful for the simple things --the car started; we have a roof over our head; Dakota was able to get up on his own with out a wheelchair or crutches; there were no bills in the mail today --it was only junkmail. Oh yes and I know Ty Pennington and Extreme Makeover Home Edition will be here very soon!!!!You make the day what you can and even if it is doing nothing but sitting at home and watching TV you have to find contentment.

We all want great things in our lives and want to accomplish great things but its not all life is about-- To many people rush around trying to do a million things and be a million places when all you have to do is just appreciate the day for the simple fact that you woke up----

I was just as guilty as the next person when Thanksgiving and Christmas rolled around this year and I will try next year to try to take heed of my own advice---

Oh Ty ------- where are you????? Ty are you coming????

{my wish for the New Year!}

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.

\   

 

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?

 

 

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!

The Magic of Harry Potter!

AS I have mentioned in other entries the OCD thing with the food is enough to drive you nuts but when you realize that its really one of the only things that is set in stone and cant be "worked around" you get to the point of just not fighting it --mainly because there are other battles to win!

Last week I waged a battle that I thought was going to be a simple one and boy did I get fooled! It was the day for Wienerschnitzel--which seems to be one of the days that Dakota "digs his heels in"--He is very insistant that there will be no deviation--HEY i TRIED

OK so the morning came :I got up and fixed a traditional breakfast didnt say anything about Wienerschnitzel; later on called him to the table and OOOOOOOOOH NOOOOOOO HE ABSOLUTELY FLIPPED OUT SCREAMING, RUNNING TO THE BACK ROOM AND SHUT THE DOOR. I went in and attempted to explain that we would go later but he wasnt having it--- I made several visits to the room to try to reason with him that it was in his best interest to eat some healthy food that its ok to have the "crap food" but you have to be balanced-- he continued to scream and cuss at me because he wanted what he wanted and that was it--I got the brillant idea that I wasnt going to give in and he would have something healthy before getting his junk--Things went down hill rapidly,I asked him to drink a glass of juice; or eat a half of a banana;a couple pieces of apple;--or even a few grapes 10 to be exact! 7--thats right seven--HOURS LATER we were still at a standoff I almost caved in because I knew he needed to eat and at this point it was more important for him to have something in his stomach for behaviors and medications than it was to win the battle--

Finally it came to me I concocted a story that the car wouldnt start because VoldeMorte{the villian in Harry Potter}had cast a spell on the car and it would not start BUT Harry had countered with magic that would make the car start if Dakota would eat just 5 grapes-- thats right my 7 hour ordeal had been reduced to 5 grapes after repeating the story again I could see he was coming around to the idea that he didnt want VoldeMorte to win. He actually ate 12 grapes and miracle of miracles the car started !

Who would have thunk it? JK and Harry actually helped me win a battle-- meager as it seems at least it still goes into the win column!

A Friend

A day I often wondered would ever come has finally come!

Dakota has always been a loner I am sure much of that is the Autism. He never seemed to be phased by others around him whether it be what they thought of him or how they interacted with him BUT i CAN SEE A CHANGE This past year in his new class there have been many positive changes but both his teacher and I agree his greatest "stride" has been social. Best Buddies has been a part of this growth but I have to say there have been 2 young men in the class that have contributed a lot to this change.

Yesterday I was in the kitchen and Dak came out and started talking about Josh being old enuf to go to Vegas-- and I told him no Dakota I am sorry hes too young to enjoy Vegas. He continued to say no Josh was old enopugh and it was almost like I knew it was coming--- He said Yes Josh is old enough --we can take him to Vegas with us. I could not believe my ears he was asking me to take Josh with us--- OH MY GOD I said no Josh cant go-he said "you take Josh to Disneyland" and I said yes but Vegas was a different story-- He continued and would not let up he wanted me to take Josh-- I was simply amazed so I was so astonished by this "request" that I promised him that as one of his birthday presents I would take him and Josh to the beach for a couple of days later in the month or maybe October-- When I told him that he then relented and said OK

It just goes to show you that you never give hope and you never say never--- Theres is always a glimmer of hope and my guy is the perfect example! He actually is making a friend!

VACATION PART 2

I know the last bit about it being a small price to pay was a bit redundant but I can't express how much more calm, peaceful and smooth our vacation was this year!

So on to San Simeon-Cambria Home of the famous Hearst Castle-I decided that we would go thru Monterey and take Highway 1 down the coast. Nice thought but really not the best choice for Mother and Dakota actually probably for me as well cuz I was the one driving!!! Its a beautiful drive if you start early and take time to get out and enjoy the scenery and awe of the coast with all of its creatures but we were in late afternoon and hell bent to be at the hotel before dark---My Mother has been on the road several times as well as myself and she just was not a happy camper --the road is very windy and up high off the cliffs of the Pacific Ocean . It also has been disintegrating for many years and they were working on it and at one point it was a single lane controlled by a signal for opposite traffic--- Not only was it taking way longer than e all expected there was a man ahead of us who was going about 15 miles an hour and my patience has worn out by the time we were done with that stretch of road--- To top off the whole experience Dakota was starting to get edgy cuz it was approaching 8 and he wanted to get to a TV --Big Brother was on and he did not want to miss it!! Need-less to say we made it just before dark and managed to get checked in and food sent to the room: bonus score was Dak got his TV fix--- !!!!This is a beautiful town and area to visit whether you go to the Castle or not -- and this particular Hotel was My Highlight of the trip-- The Cavalier Inn-- Best Western. What a great hotel the only one in this area with direct beach access on the property. The rooms have fireplaces ready to go all you have to do is light the match, mini honor bar and small service areas with a sink and coffee maker and all you do is slide the door open to your own patio that over looks the coast line . There is also 2 heated pools on the property and 3 large fire pits that are lit every night for the guests from 6 to 10-- how great is that?? We all went into the village of Cambria and found a Farmers Market with wonderful organic vegetables and fruits with all sorts of other interesting things-- Mom stayed in the town a couple of hours while Dakota and I went back to the room. Before we left we did discover an memorial about the Piedras Blancas Lighthouse which is just north of Cambria. It had been abandoned by the Coast guard In 1949 and some med in the town who belonged to the Lions Club got together and saved the working mechanism and actual rotating light and brought it back to the town and encased itwith all the historical information. Dakota took pictures by it and seemed interested so that was a great moment! It finally came time to head home and although Dakota was anxious to get back cuz he wanted to see his Pop I made one more stop just below Santa Barbara on the 101 called Santa Claus lane--- It was a place I remembered as a kid that was almost like a rest stop along the ocean that when you pulled off it was one long string of Christmas themed stores--The bakery,the toy store, the Christmas decoration store and a 50's type diner-cafe it was a greatest thing and almost like something that Disney himself would have concocted with A-frame roofs that had white trim that looked like snow on them and open fronts on some of the building that were so inviting it was a haven and a memory that I will never forget--but ALAS these modern times have swallowed it up! I wish now I had not seen it in such disorder and abandon. Of course some kind of developer has seized it and is in the process of making it a "beach resort" and the simple fact that the property is worth more than the business now--- I think the 5 freeway going up the middle of nowhere in California taking a lot of the travelers away from the coast as well as the fact that nothing is scared anymore sicken my heart-- Many children have lost the ability to experience a childhood memory of something simple and pure and innocent -- I guess there is no right answer but I am sad to see it go By the end of summer the last of the business will be gone forever Ay=t least I satisfied my curiosity and got up one last time-- My only Hope Is that someone who has the capability of re-creating this village may do something in the future and nostalgia will prevail!!!

Final Mistake I made was not taking the 126 in Ventura home and went to the 134 which was ok but back to congestion and chaos thru LA-- northern LA at that but still a mess, we made it back and Dak got to see his Pops and Mom and I came home and collapsed. It is going on a week since we have been home an we are just now unpacking and finishing up laundry and getting ready for the birthday bash for Dakota--- VIVA LAS VEGAS-- I know how can I be thinking of another trip ??? well I consider this one vacation just with a big lay over at home in the middle!!!!

VACATION!!!!!

Well at least this time I have a real excuse for not "blogging " for a couple of weeks!! We went on VACATION!

The initial reason was a family reunion that occurs every 3 years but Momma {me} decided that as long as the effort was being put forth might as well make it a full fledge VAY-KAY. We hit Gilroy the first night and of course had to hunt down PIZZA--we lets face it cant take all of the routine out of the autism --and realistically you have to have compromise if you want to enjoy your efforts--So it was pizza and oh boy was it good---lots and lots of Garlic--wooohooo a late swim and bed for the night and No Behaviors---yeah

Next on to Guerneville-- this place is a trip to say the least its a tiny town on the Russian River near Bodega Bay.We stayed at a place called Dawn Ranch and although I am no pedigree and I can hang with the best of them when it comes to "less than perfect " accommodations this place was a definite challenge.It was like a mini village of one room cottages that were barely big enough to have a bed and lets not even talk about the bath closet--OH excuse me bathROOM???? No phone No TV --yes there was electricity but only 2 sockets one behind the bed that took up 75% of the room and the other one ws in the bath-closet-oooooh excuse me the bathroom and it only worked if you left the light on!!!!Knowing I had Autism as an extra guest on our travels I came equipped with several "tools" to aide me in the fight against boredom and ritual including a portable DVD player,a laptopcomputer,a slow cooker with a detachable heating unit so I could warm things in the room as well as make Decaf Ice Tea , a small room fan --to drown out unwanted noises,compact disc player with a radio,familiar snack foods,and our own water supply. Well so much for pre-planning--Ok there was WI-FI there but only if you had Cingular service-- what a joke no cell phones no service for many of the computers cuz it just wasn't happening--- Now don't get me wrong I knew some of these conditions ahead of time and all in all it was BUT MAN WHAT A CHALLENGE! This was one step up from tent camping-- Oh yeah lets not forget that the showers were equipped with "on demand" water heating systems which took me almost 3 days to realize that I had to run the water in the sink at the same time as the shower in order to KEEP THE HOT WATER FLOWING because the shower head was so tiny that there was not enough flow to "tell" the on demand system to keep heating the water--- The very first time I got Dakota in the shower which was a feat since it was new and different than home i barely get him wet and soaped down and here comes the "blue-balls" cold -ass water and he starts getting agitated and jumps out which there was no room for both of us in the Bath-closet--OOOOH I mean bathroom!Remarkably he handled it quiet well and giggled and laughed at me getting pissed off about the situation-- sometimes our kids teach us lessons about handling things! The Family Reunion got on with several activities over the course of 4 days and there are many more stories to tell but for nowI will get on with the vacation as a whole--

On to San Francisco-- as I look back I have decided that whenever I am going to visit a city like SF I need to double the length of time we stay because there is "prep" time each day so essentially we need twice as much time to see and enjoy what others would do in half the time ????{that's an awkward sentence} A N Y W A Y --- we stayed a block off of Fisherman's Wharf and had a great time-- I negotiated with the concierge to "comp" my parking {which by the way is outrageous in San Francisco over 40 bucks a night} if I attended a vacation ownership "deal". So Dakota and I went to the presentation and did amazingly well. It was a power point presentation with a touch screen and he sat there and was the best kid ever-- WHAT A BLESSING. Several years ago I never would have believed that Dakota could do it but He continues to shine and show me he can step out of his "limitations"! The plus side to the hour long presentation was it was at the Cannery Building which gave us an opportunity to walk the Wharf and also to see the new Argonaut Hotel . They have taken the building and transformed it to a beautiful Hotel right on the Wharf and when I go next time I will stay there.The highlight of the trip was searching out the only Carl's Jr in San Francisco which by the way is at Embarcadero Center right across the street from PIER #1.It forced me to drive in San Fran something I have never been fond of but I have to say it is quite improved since the last time I visited. We actually drove down Market street which is a trip in itself and headed to the southwest corner of the city to "Twin Peaks" {I always think of the old TV show--ha ha} The view is great there but alas it was very cool and foggy --Imagine that in San Francisco and not much "viewing power" the day we were there-- so we drove through Golden Gate Park and the Marina District just to familiarize Dakota with the city-- kinda laying the ground work for future visits-- oh yes and of course if you are driving in SF how can you pass up the opportunity to drive down the "Crookedest Street in the world"--Lombard Street.Then back to the hotel. The day before we left this fair city by the Bay: the day revolved around visiting Pier 39 --Dakota didn't have any interest at all and the famed Cable Car Ride--we rode all the way down the Powell line to Market Street and when we got to the bottom the guys allowed Dakota to ring the bell and take a picture as the "engineer" then we hopped off and got in line to ride back up to the Wharf-- On our way back one of the street artist "bargained" with me on a pastel of Lombard Street for a whopping 10 bucks best bargain in San Francisco-- its really quite beautiful, 16x20 hand painted with bright colors something Dakota will look at for the rest of his life and remember the day we bought it on the Streets of San Francisco.

On the day we stared down to Cambria the search as on for Wienerschnitzel--OH MY GOD Remember that its really a small price to pay for calm and peace for the day. I genuinely believe that the anticipation of Daks needs clearly makes the day the week or the journey smoother! There is NO Wiernerschnitzel in San Francisco So the route out of Frisco expressly to get us too a Wienerschnitzel-- I know it sounds crazy but I have to admit that this "food routine" was really the only issue Dakota was having on the trip and was a small price to pay for the betterment of our vacation and sanity!!!!!! We ended up in Sunnyvale took care of Dakotas "need"

Twisting the Hair

This topic is enough to drive me to "the nut house" perhaps Camarillo although I am told they are no longer accepting patients or worse yet Patton. One good thing about Patton is it is close to the San Manuel Casino so I might be able to qualify for a "day pass" as a diversion!Wow how did I get to this point?

Twisting the hair --just the mention of this subject irritates me . Since Dakota broke his leg over 2 years ago we have had a problem with him twisting his hair. I know this is a fairly common "tick" or "stim" for Autistic individuals. I understand that it is an "avenue for expression" that their words can not express HOWEVER this one is getting the best of me.

When Dakota injured his leg he started twisting his hair, I believe, as a way to help him cope with the pain-- he was extremely limited in his ability to express pain. I tried to be on top of the medication to make sure he didn't hurt needlessly however he would very rarely muster the words "momma my leg hurts". As the days progressed I started noticing that he was twisting his hair but I didn't intervene as I felt he needed a way to offset his frustration and pain--what I discovered in a matter of a few days is that he wasn't just twisting the hair he was literally pulling it out by the roots. Having a high tolerance for pain as most of our kids do this is not uncommon and seems to be almost like a natural reaction to soothe the static in their heads. Before the re cooperation period was over he had 2 spots both at least 2 inches in diameter completely bald---My heart was sick but I knew it was necessary at the time

What has transpired since is what is driving me nuts. He has continues with this behavior even though the pain had gone----It has now become a habit like biting of the nails,or chewing, or hand flapping--all forms of stimming  and pardon the expression but a    Bitch to "interrupt and re-direct"{strategy used in Autism}Of course Dakota is quite aware of how much it bugs me and often times now taunts me with this behavior which doesn't help me in trying to control my behavior to "flip out!"

I have tried numerous "tricks" to try to stop the Twisting but have yet to succeed.The first was verbal prompts, reward system doesn't work for him,I have tried to reason with him-- yeah that was a good one -- I even tried to show him the commercials on TV about the men who have lost their hair and are begging and pleading to have their hair restored,I have stood him in the mirror and explained to him what he is doing and that he looks like a man in his mid life who is loosing his hair, I have played the "girl" card -- they wont want to look at a boy who is bald, I have threatened to shave it all off-- he laughs at me , I have even had our hairdresser talk to him firmly about what he is doing to his hair-- And surprise nothing has worked 

The funny thing about it is we had a period where he slowed down and we restored one of the areas behind the ear and the one on the front part of his head has made some progress--Just as we were almost restored in the front he has started up again-- So I talked to him --asked him if he was hurting -- particularly his leg, foot or toes as he has gone through several other procedures over the course of the past few years and I was open to the possibility that he was displacing his pain with this behavior. Everytime he would say he was ok -- I would try to open a dialogue about why he would twist his hair and all he could do is either withdraw or taunt by looking right at me a twisting another strand or 2 of hair--MAN DOES THAT GET TO ME! I have explained to him how lucky he is to have a full head of beautiful curly hair but it just doesn't affect him........

So here's where we are at right now-- I started using SuperNanny's rules  When I observe him twisting his hair I ask him to please stop twisting his hair TWO TIMES after the second request if he continues to twist I retrieve the jar of Vaseline and place a glop of goop in the areas he is twisting-- he stops. At least for a prolonged period of time. Because our kids are "tackle sensitive" this works .He cannot stand the feel of the goop so he stops. This is not perfect because if it is a particularly stressful day or the stimming is running high that day after a couple of hours the Vaseline will dissipate and he will start to touch it again-- so I have to pick and choose when to use this strategy. I must admit it isn't the best thing if you are going out in public, I talked to our hairdresser and he said the Vaseline is not harming the hair and is actually good for it but visually it kinda sucks.What I try to do is comb it thru his hair if we are going out so he looks like a guy from the fifties and sometimes I use Alberto Vo5 or Brylcream which is specifically a hair product. 

He has started growing more comfortable with touching the hair with the goop in it so I have also discovered that putting a small glop of Baby shampoo also does the trick---I know he will stop when he replaces it with another "stim" but I will continue to battle this one--- A saying in the Autism community is "pick your battles" and this is one I will go down fighting- I guess because it borders "self-injurious" behavior and it affects his apperance.Many parents have expressed that its hard enough when your child behaviors get in the way of them blending into the community it is imperative to aid them anyway you can to keep them from standing out-- simply because you just want your kid to experience life the way most kids do!    

        

Just when You think You got it Down!

Well last Thursday was another "awakening"!

Best Buddies had a special trip to the local ball park--The Quakes--part of the Angels Farm System --as usual more people showed up than expected which is a good thing but made difficulty for logistics --getting everyone sitting where they wanted to be-- So my guy and his buddy and 2 other kids got a great table in the Cafe which is a great area for the kids cuz they have all the food and bathrooms close . Because the seating was scrambled I opted to take a seat over in the traditional bleecher area not too far away --so I could keep and eye out "just in case" Everything was going along great and all of a sudden I hear the kids hllering at Dakota to STOP and I look over --here he is with a soft material purse in his hand and hes swatting at his buddy--Once again the ever persent qustion--WHAT THE HELL? I DROP EVERYTHING AND RUN OVER TO THE WALL PARTITION AND GRAB ONE OF HIS HANDS AND DIRECT THE KIDS TO GET THE PURSE OUT OF HIS OTHER HAND AND TO LEAVE THE AREA! I run up the stairs and down the ramp and quickly seat myself next to him and shake my head -- I asked him why he did that and he can't or won't respond --I tell him he can't do that and its a miracle that some "Liquored up Guy" didn't come over there and take him down--- I sat there for about 5 minutes and he was very quiet and then he gently pushed me on the shoulder as if to say "get out of here mom" I looked at him and asked him if he was ok and he nodded ---The kids circled back and I told them it was ok now and he sat there the remaining innings of the game and laughed and joked with the kids as if nothung ever happened---

We are blessed with a great buddy who has been around these kids quite a bit and seemed not to be phased by the behavior. I guess the 2 things that came out of this is; you never know when or what will trigger a behavior so you always have to be on your toes and that at least with my guy there always seems to be a "honeymoon period" with everyone he meets -- when someone is new he acts differently and when he gets comfortable with you some of the behaviors surface---I guess thats no different than a typical relatioship

The best thing is that his abilty to recover from a behavior seems to be shortening which is a great improvement

If you are going to have a behavior at least its nice when it comes and goes quicker!

And you never know when the honeymonn is over!

IEP and the School District

Well here we go-----------------I try to get a copy of my sons IEP from the school district and what am I told?? I cant have a copy because my son is over 18 and 'BY LAW' I am not entitled -----

What the Hell ???? for hmany years have I attended the IEPs BY MY SELF signed the IEP  BY MY SELF and could not put the IEP in place until they have my signature and now just because he's over 18 they cant give me a copy???? I know this is the law and i don't dispute Dakotas rights what I dispute is the  double standard that its ok for me to speak for my son , make arrangements to make decisions for my son  be responsible for my son but i cant have a copy of a document  that needed my signature to put into place----                                        As I said  WHAT THE HELL???   my signature was on that document and they wont give me a copy----yes I have a copy floating around  the house somewhere but I needed it quickly and rather than go thru the  hassle of digging at home I though it would be "easier" to just go get a copy--BUT  NOOOOOOOOOOOO

Well this is what I am gonna do:  they wanted him to tell them over the phone that I  could have a copy --I told them he really doesn't talk on the phone    then they said well he can sign for it  of course I was going up there for other business so I was trying to kill 2 birds with one stone and wasn't successful;Soooooooooooo In his own hand printing which is relatively  indecipherable  I am going to have him write me a permission slip to do business for him and have him sign it and have it notarized --make copies and every time I need to do something for him I will whip out the paper that is barely a kindergartners  printing  that will be Notarized and them lets see what they say????

You know there always a way to slay the dragon a different way I guess you just have to get creative  with what kind of a sword you use! 

PERSPECTIVE

THIS IS THE KINDA OF SUBJECT THAT I THINK MANY PARENTS WHO LIVE WITH AUTISM RARELY SPEAK ABOUT---- MY MOM :ALTHOUGH WE ARE VERY DIFFERENT MAKES A GREAT ATTEMPT TO GET MY SON TO SIGN CARDS FOR ME  FOR OCCASSIONS LIKE MOTHERS DAY AND MY BIRTHDAY-- I APPRECIATE THE EFFORT . WHAT  IS MISSING IS HIS ABILITY TO TRULY PROCESS THE FEELINGS AND UNDERSTAND THE "SOCIAL " VALUE OF DOING SOMETHING LIKE PICKING OUT A CARD AND SIGNING IT---- I AM NOT A CARD PERSON PER SE BUT I HAVE TO ADMIT THAT IT IS SOMETHING I WISH FOR ---TO ACTUALLY HAVE HIM GO TO A STORE AND PICKOUT A CARD AND SIGN IT AND HAND IT TO ME  WOULD BE A HUGE ACCOMPLISHMENT--- ITS FUNNY HOW TYPICAL PARENTS TAKE SOMETHING LIKE THAT FOR GRANTED

THEN I LOOK AT OTHER THINGS LIKE HOW LUCKY I AM TO HAVE A YOUNG ADULT WHO STILL LOVED TO BE AROUND ME ; DOESNT WALK AROUND WITH HIS PANTS DOWN AROUND HIS KNEES;ISNT DOING DRUGS OR DRINKING ;OUT LATE PAST CURFEW;ISNT BRINGING HOME A GIRL PREGNANT AND I THINK THAT  I CAN DO WITH OUT THE CARD!

PRESPECTIVE IS HUGE WHEN YOU LIVE WITH AUTISM. OUR KIDS HAVE SO MANY ABILITIES  THAT MANY OTHER "CHALLENGED " KIDS DONT  ITS SO IMPORTANT TO REMEMBER PRESPECTIVE SEASONED WITH A LITTLE ATTITUDE AND YOU WILL BE ALRIGHT 

MY KID THE ROCK STAR

May was so busy -- I cant believe its been over a omonth since i wrote anything-- I several stories about Spring Break Disneyland and the prom  but for now have to be in the present

We attended a retirement party tonight and found out that we were living with a 'ROCK STAR"

Here's the story

Have to tell you I am so excited about -- I took  Dakota to a retirement party for the teacher who home schooled him before we got him into Alta Loma and she has been there for both of us  for IEP's and all; opening her room to Dakota so he had some main streaming and contact with "reg-ed" students--A N Y W A Y

 

There was a live "rock band" there -- and I was supposed to take him for just a short while then on to his dads-- well when he got there and the band fired up  he was not going anywhere, he started bobbing his head and clapping at the end of the songs and before you know it  he was up and dancing around with many of the people he knows from school-- not the kids in his classes but the security and the maintenance and the teachers

WHAT A CRACK UP    

 On the very last song he had already been messing around with the lead singer who was trying to get him to sing into the mic and when they finished with BROWN SUGAR by the Stones he was singing the lead and rocking out! Everybody was on the floor - - the lead singer had him doin all the oooo- ooooh's and the hook "Brown Sugar!" It was absolutely the best

After the band broke down one of the guitarists who is a special ed teacher came in and said to one of the other teachers that he could not believe Dakota -- he said "I cant get 2 words out of this kid at school but put a mic in front of him with rock and roll and he's a rock star!"

 

I could not have felt better   That was the best reward I could get !

It wasn't even about Mrs Thomas' retirement anymore it was about how my guy stole the show!!! -- How proud I was --- and how vindicated I felt as a parent who has told people over and over again that these kids just need to find their niche---and how it was for more than Dakota it was for all of us who knew it all along that our kids just need a chance.

Oh yeah and one feather in my cap for keeping that radio on KLOS and playing rock and roll for him before he was out of my womb!  He knows all the words!

 

Hail to my "Rock Star" and I dont mean the drink!!!!!!!