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!