September and School

Just a quick update -- school has started and I remain cautiously optomistic .

We have started with an old plan put forth with new surroundings and new people and I am pretty happy right now. Many of the things that I have struggled to incorporate into Dakotas schedule have been put in to place with a new team of  people.

For the moment he has already done more things I have wanted for him in this 2 weeks than he had done in the passed 2 years so I am very happy in this moment. We  are incorporating a "safe haven" and special ed class with lots of communitiy activities { pretty neat new teacher, too}and some work experience with the opportunity for him to attend some reg ed classes -- just basic stuff like life science and basic english with the intent of pure socialization as the key-- no grading or other demands just an opportunity for him to be with other typical kids--

So time will tell but right now I am on cloud nine --- we will see how long it lasts! 

Celebration at Disneyland

What better  way to celebrat a birthday than at the Magic Kingdom?

We just spent almost 6 days at the Disneyland resort in a  beautiful room with a view to die for!!! The weather was great and we could see Downtown Disney, The Grand California Hotel, California Adventure, and all the Famous mountains of Disneyland--Space Mountain, Big Thunder Mountain, Splash Mountain and The Matterhorn plus we could watch the fireworks from the living room of the suite!

The best thing about the resort is there are many things you can do besides going to the parks. Not only do they have several pools but there are arcades, gift shops, waterfalls to explore, koi ponds, large park areas to just hang out and several eaterys including Goofys Kitchen {rather pricey,but} a must if you are celebrating a birthday. 

Things were a bit different this year as Dakota was still in a wheelchair last year and it made for a really  difficult time . Although he is still struggling through issues physically  he was at least up on his own 1 and 1/2 feet which helped mobility. Behavior  was stellar this year  only one real meltdown -- and that was in the pool because of his foot and inability to  be sure of himself  and the unfamliarity of  his surroundings he got very frustrated . I had also met a Mom who had an autistic son who was in the pool so we struck up a conversation which added to his frustration. I know it was  attention seeking behavior because he was afraid of his surroundings so when he started exhibiting the frustration i just said ok its time to go  and we headed back to the room and by the time we got back to the room he had managed to decompress--

For the most part we had a great time  but I have to share one incident I think could help someone else "read their child"--We had gone on Splash Mountain toward late afternoon it was still warm outside but we got horrendously wet even with a few hours of daylight left to dry  Dakotas shorts were a bit to heavy and never really dried. We continued a few more rides and towards dusk started back to the Hotel.  We  stopped for some reason for a minute and he grabbed his stomach on both sides and put out a big groan - - - - - I asked him what the matter was and he said "nothin" ;  we started out of the gates and stopped at Jamba Juice , I was speaking to thejuice girl when  I  turned around to find him slapping his foot on to the floor like a horse and throwing his knee to the outside -- just at that moment I realized that the shorts being wet were rubbing his legs and he was gaulded. We took a short cut thru The Grand  California Hotel and I got a valet to shuttle us over to our hotel-- My point is this when Dakota grabbed his stomach and groaned he was trying to tell me something then but I focused on the torso and kinda blew it off that his stomach couldnt be hurting.  I knew he wasnt hungry  so we pressed on until I finally caught the foot slapping in the juice store. Had I been just a little more  in tune I may have found his ailment sooner . I'm saying  that with these kids they dont always have all the tools to tell us when something is wrong .  You have to be a little bit of a mind reader and an extra special parent to take time to not react when they act out. Investigate to make sure they are not hurting or trying to tell us something is wrong-- {I have another story I will write about later  --The Sucker  } 

It is so incredibily easy to want your kid to conform to "typical " behavior that when they act out in public we tend to be quick to "squawsh" the behavior. Always Always Always take a few minutes to analyze whats going on and see if you can find another reason for the behavior-- I know its hard  and even I trip up after 19+ years   but our kids find different ways of telling us theres something wrong or theres something different. This has been a hard lesson for me . For the most part I think it is hard for every parent whether they have challenged kids or not  but our kids -- our autistic kids have different forms of communication and we have to give them the benefit of doubt when they are trying to tell us something -- One thing I believe 100% is that not one "behavior " happens for no reason ; we may never know all of the reasons but at least let your child use what ever means or tools he has to tell you something is wrong  - -  Spare an extra moment or two to read the cues

In the long run you will be a better parent and  in our case I have seen and improving child-- muchless acting out and more meaningful  behavior as well as the ability to self monitor  when a behavior does errupt!

As for Disneyland  a great time always  and once again a learning experience!

FORWARDED EMAIL

I HAVE RECIEVE A COUPLE OF EMAILS LATELY THAT WERE RATHER INSPIRATIONAL AND ALSO REVEALING WHEN IT COME TO EXPLAINING WHAT APRENT LIKE US GO THRU AND FEEL

SO  I HAVE DECIDED TO POST THEM HERE BECAUSE YOU NEVER KNOW WHEN SOMEONE MAY BENEFIT FROM THE WORDS OF ANOTHER

THE FIRST ON IS MORE OF A JOKE ABOUT PERSISTANCE AND NOT ONLY DOES IT EXPLAIN THE DRIOVE BEHIND PARENTS OF KIDS WITH SPECIAL NEEDS  IT CAN ALSO APPLY TO THE   "MAKE UP" OF OUR KIDS SINCE  PERSISTANCE AND PERSEVERATION HAVE A SIMILAR LANGUAGE ROOT:

In Jerusalem , a female CNN journalist heard about a very old Jewish man
who had been going to the Wailing Wall to pray, twice a day, every day,
for a long, long time.

So she went to the Wailing Wall to check it out, and there he was.

She watched him pray and after about 45 minutes, when he turned to
leave, she approached him for an interview.

"I'm Rebecca Smith from CNN. Sir, how long have you been coming to the
Wall and praying?"

"For about 60 years".

"Sixty years! That's amazing! What do you pray for?"

"I pray for peace between the Christians, Jews and the Muslims. I pray
for all the hatred to stop and I pray for all our children to grow up in
safety and friendship."

"Sir, how do you feel after doing this for 60 years?"

"Like I'm talking to a f**kin' wall."

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THE NEXT 2 STORIES ARE ABOUT KIDS THAT ARE CHALLENGED AND HOW THEY LIVE THEIR LIVES FROMSUCH A "PURE" STANDPOINT:

Some people understand life better, and they call some of these people "retarded"...

  At the Seattle Special Olympics, nine contestants, all physically or mentally disabled,
  assembled at the starting line for the 100-yard dash.

  At the gun, they all started out, not exactly in a dash, but with a relish to run the race
  to the finish and win. All, that is, except one little boy who stumbled on the asphalt,
  tumbled over a couple of times, and began to cry.
  The other eight heard the boy cry. They slowed down and looked back. Then they all
  turned around and went back... every one of them. One girl with Down's Syndrome bent
  down and kissed him and said, "This will make it better."
  Then all nine linked arms and walked together to the finish line.
  Everyone in the stadium stood. The cheering went on for several minutes. People who
  were there are still telling the story.

  Why?

  Because deep down we know this one thing: What matters in this life is more than
  winning for ourselves.  What matters in this life is helping others win, even if it means
  slowing down and changing our course.
  If you pass this on, we may be able to change our hearts as well as someone else's.
  "A candle loses nothing by lighting another candle."
  Friends Make The World Go Round.
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AND FINALLY A PARENT WHO WILL NEVER GIVE UP:

Strongest Dad in the World [From Sports Illustrated, By Rick Reilly]

I try to be a good father. Give my kids mulligans. Work nights to pay for their text messaging. Take them to swimsuit shoots. But compared with Dick Hoyt, I suck.

Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in marathons. Eight times he's not only pushed him 26.2 miles in a wheelchair but also towed him 2.4 miles in a dinghy while swimming and pedaled him 112 miles in a seat on the handlebars--all in the same day.

Dick's also pulled him cross-country skiing, taken him on his back mountain climbing and once hauled him across the U.S. on a bike. Makes taking your son bowling look a little lame, right?

And what has Rick done for his father? Not much--except save his life.

This love story began in Winchester, Mass., 43 years ago, when Rick was strangled by the umbilical cord during birth, leaving him brain-damaged and unable to control his limbs. "He'll be a vegetable the rest of his life;'' Dick says doctors told him and his wife, Judy, when Rick was nine months
old. "Put him in an institution."

But the Hoyts weren't buying it. They noticed the way Rick's eyes followed them around the room. When Rick was 11 they took him to the engineering department at Tufts University and asked if there was anything to help the boy communicate. "No way,'' Dick says he was told. "There's nothing going on in his brain.'' "Tell him a joke,'' Dick countered. They did. Rick laughed. Turns out a lot was going on in his brain.

Rigged up with a computer that allowed him to control the cursor by touching a switch with the side of his head, Rick was finally able to communicate. First words? "Go Bruins!'' And after a high school classmate was paralyzed in an accident and the school organized a charity run for him, Rick pecked
out, "Dad, I want to do that.''

Yeah, right. How was Dick, a self-described "porker'' who never ran more than a mile at a time, going to push his son five miles? Still, he tried. "Then it was me who was handicapped,'' Dick says. "I was sore for two weeks.''

That day changed Rick's life. "Dad,'' he typed, "when we were running, it felt like I wasn't disabled anymore!'' And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly shape that he and Rick were ready to try the 1979 Boston Marathon. "No way,'' Dick was told by a race official. The Hoyts weren't quite a single runner, and they weren't quite a wheelchair competitor. For a few years Dick and Rick just joined the massive field and ran anyway, then they found a way to get into the race officially: In 1983 they ran another marathon so fast they made the qualifying time for Boston the following year. Then somebody said, "Hey, Dick, why not a triathlon?''

How's a guy who never learned to swim and hadn't ridden a bike since he was six going to haul his 110-pound kid through a triathlon? Still, Dick tried.

Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii. It must be a buzzkill to be a 25-year-old stud getting passed by an old guy towing a grown man in a dinghy, don't you think?
Hey, Dick, why not see how you'd do on your own? "No way,'' he says. Dick does it purely for "the awesome feeling'' he gets seeing Rick with a cantaloupe smile as they run, swim and ride together.

This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters.  Their best time? Two hours, 40 minutes in 1992--only 35 minutes off the world record, which, in case you don't keep track of these things, happens to be held by a guy who was not pushing another man in a wheelchair at the time.
"No question about it,'' Rick types. "My dad is the Father of the Century.'' And Dick got something else out of all this too. Two years ago he had a mild heart attack during a race. Doctors found that one of his arteries was 95% clogged. "If you hadn't been in such great shape,'' one doctor told him, "you probably would've died 15 years ago."

So, in a way, Dick and Rick saved each other's life. Rick, who has his own apartment (he gets homecare) and works in Boston, and Dick, retired from the military and living in Holland, Mass., always find ways to be together.

They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day. That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy. "The thing I'd most like,'' Rick types, "is that my dad sit in the chair and I push him once."

This is a video clip of the Father and Son team that did the Iron Man together.
http://www.youtube.com/watch?v=WjPrL3n63yg

I HOPE SOME HOW THIS REACHS A PERSON IT IS INTENDED FOR!

MELTDOWN BECAUSE OF A MILKSHAKE

HURRAY   JACK IN THE BOX IMPROVED THEIR MILKSHAKES! DID YOU KNOW THAT  OR DID YOU EVEN NOTICE THAT THE LAST TIME YOU WENT THERE??? YES THEY HAVE PUT THE MILKSHAKE IN A DIFFERENT CLEAR PLASTIC  GLASS  WITH A DOME TOP SO THEY CAN PUT WHIPPED CREAM  AND A CHERRY ON TOP---GREAT YOU SAY MORE FOR THE MONEY

WELL NOT FOR A KID WITH AUTISM AND OCD-- DONT THEY REALIZE THEY JUST SCREWED WITH THE ROUTINE?? OF COURSE NOT ! DONT MISUNDERSTAND ME I KNOW THAT THINGS WILL CHANGE ;THINGS WILL EVOLVE AND PRODUCTS ARE CONSTANTLY CHANGING TO APPEAL TOP A WIDER CONSUMER BASE BUT IN THE EYES  OF AN AUTISTIC THEY JUST TURNED  THE WORLD UPSIDE DOWN.

YESTERDAY WE WENT TO JACK IN THE BOX TO GET THE ""USUAL""ORDER AND FOR ABOUT THE 3 RD OR 4 TH TIME THE QUESTION WAS ""DO YOU STILL WANT THE MILKSHAKE?"" "I DONT KNOW!"  "I DONT CARE ANYMORE!" AS THE MOOD IN THE CAR BEGINS TO ESCALATE.  "OK" I SAY AND I GO AHEAD AND ORDER THE DAMN SHAKE KNOWING THAT IT WILL BE WASTED BUT PAYING 2 BUCKS IS A SMALL PRICE TO PAY TO AVOID A BEHAVIOR THAT CAN SCREW UP THE WHOLE DAY --AT LEAST THATS MY THINKING SO WE GO THRU THE DRIVE THRU AND GET THE ORDER EVERYTHING SEEMS TO BE  OK AND WE GET HOME. A LITTLE ATTITUDE BUT IT SEEMS TO BE OK. WE START TO GET THE FOOD OUT ON THE TABLE AND GOD FORBID I COMMITTED THE SIN OF ALL SINS  I REACHED INTO THE PLASTIC DOME OF THE MILKSHAKE AND STARTED TO PUT THE CHERRY IN MY MOUTH AND HERE STARTS THE TORNADO----""WHAT ARE YOU DOING WITH MY SHAKE??--SCREAMING AT THE TOP OF HIS LUNGS"" "ITS  OK HERES THE CHERRY BACK I JUST TOOK THE WHIPPED CREAM OFF THE CHERRY'' "YOU CANT DO THAT!" AND THE MELTDOWN  ENSUES---

HE STARTED TO GROWL AND LUNGE TOWARD ME  CALLING ME A VARIETY OF NAMES.THEN HE STARTED TO GET PHYSICAL TOWARD ME HE GRABBED MY FACE AND I TOLD HIM TO LET GO AND TOLD HIM THAT IF HE GRABBED A STRANGER THEY WOULD FIGHT BACK AND HE HAD BETTER LEARN HOW TO WALK AWAY OR NOT TOUCH SOMEONE BUT HE INSISTED ON PURSUING SQUASHING MY FACE SO I BROKE LOOSE AND SWATTED HIM WITH AN OPEN HAND ON THE BACK WELL THAT JUST ENFURIATED HIM EVEN MORE THEN HE STARTED COMING AT ME SWINGING HIS ARMS SO I STOOD THERE AND LET HIM SWAT AT ME -- THEN HE GRABBED MY HAND AND WANTED ME TO HIT HIM BACK AND I TOLD HIM --NO I WAS NOT GOING TO DO THAT -- IF HE WAS ANGRY HE WOULD HAVE TO WORK IT OUT HIMSELF BUT I WAS DONE .

I TRIED TO DIRECT HIM TO THE BEDROOM BUT HE WAS HAVING NONE OF THAT STRATEGY. HE WAS JUST BEHIND HIMSELF SO THEN HE DECIDED HE WAS GOING TO CALL THE POLICE AND HAVE ME "TAKEN AWAY" I  EXPLAINED  TO HIM THAT I WOULDNT BE THE ONE TO BE TAKEN AWAY IF THE POLICE CAME AND SAW THE RED MARKS ON MY ARMS -- HE JUST COULDNT UNDERSTAND WHY THEY WOULDNT TAKE MOM AWAY--WHEN HE HEARD THAT INFORMATION HE WAS EVEN MORE PISSED HE TOLD ME" TO GET OUTTA HERE"

THEN I SAID WHO WILL HELP YOU IN THE BATHROOM AND SHOWER? WHOS GONNA DO YOUR WASH AND HELP YOU GET FOOD IN YOUR BELLY? "I WILL DO IT MYSELF" I SAID "OK I GUESS I AM LEAVING THEN."

AT FIRST HE WAS FINE WITH IT BUT WHEN I FINALLY STARTED FOR THE DOOR WITH MY PURSETHE  BEHAVIOR ALL OF A SUDDEN  DEFLATED                                  I HEAR  "I'M SORRY MOMMA"  I SAID "NO I WILL LEAVE"    HE SAID "NO MOMMA  DONT LEAVE"   AND THAT WAS ABOUT THE END OF THE BEHAVIOR.

IT IS SO HARD TO WRAP YOUR HEAD AROUND WHAT OUR KIDS GO THROUGH AND YOU HAVE TO KEEP  REMINDING  YOURSELF THAT THEIR HEADS ARE IN CHAOS AND CANT DECIFER  THE STATIC  THAT INFUSES THEIR BRAINS. IN THE HEAT  OF THE MOMENT ITS SO EASY TO REACT LIKE YOU WOULD WITH A TYPICAL PERSON OR CHILD . ALL ALONG YOU HAVE TO CONTINUE TO AMINTAIN AS MUCH CALM AND PEACE AS POSSIBLE BECAUSE IT IS IN FACT THE ONLY THING THAT WILL BRING OUR KIDS BACK TO "OUR WORLD" WHEN THEIR BODIES  CANT.

SO THE NEXT TIME YOU GO TO JACK IN THE BOX HAVE A MILKSHAKE AND THINK ABOUT YOUR MANY BLESSINGS AND HOW EASY IT WAS TO ORDER THAT BEVERAGE AND NOT HAVE                                 A MELTDOWN OVER A MILKSHAKE!