Off and Running!

New Years Eve is here and the day has already presented new challenges!

The television has a significant role in the household-- mainly a time and schedule or routine "driver". Although most would agree that phasing out or total elimination of this "medium" would be for the best, I challenge anyone who lives with Autism everyday to inflict this course of action. Believe me I have attempted change not only with this particular issue but with many other "routine drivers". The outcome is always the same--uncontrollable behavior driven by fear.

The simple suggestion of changing or eliminating usually results in a major disruption for the day.I want with all my heart to challenge Dakota. To give him opportunity for growth. to educate him and give him options which enhance his ability to live along with others who are not Autistic as well as allowing him to blend better in the community.

After 23 years and after the past 30 minuytes I arrive at the same conclusion every time--WHY?
Why make him get upset?Why male him scream and yell? Why make him experience any more crap than he has to on his own? Why push buttons to make the static that seems to be resting in the back of his grey matter come to the surface?

It is always with love and intent to make him a better person to challenge him but when I consistantly see his "revolt" --I know why I dont do things -- I always have trouble conveying this to others.

I guess the answer to that quandry comes back the same everytime too! Often I feel it presents a learning experience, The bottom line is that if it does not effect another person I dont own them an explanation or justification.

The New Year is here and we all like the idea of freash starts and changing bad habits. For those who live with Autism its about keeping what you can the same and "tweaking" what you can.Never allow others to drive your desire or parenting skills for your kids. I think that is universal.         

Another funny reference

Ok there are many levels of Autism and we all stuggle as caregivers to do the best we can with what we got! In others words you have mild or moderate, Aspbergers, High Functioning etc. They are all labels that are really more for those of us who don't have Autism than it is for the person.There is also what they call Savant/Idiot-- which is similar to what was portrayed in the movie "RainMan". This is highly prevalent in most Autistic people just in different levels.It manifests itself as strange unexplicable skills or knowledge about things that the person has had no exposure to. {Like my excerpt about Mac Beth}

Well it happened again---
We were watching an animated story with Alvin and the Chipmunks. This story was Christmas related  with a story that was similar to a Christmas Carol but it used a different format for the different stages of Christmas past present and future. Dave {the caretaker of the Chipmunks}fell asleep and was awakened by the television.A ghostly figure appeared and started to say "Dont adjust your screen,what you are about to witness has no time and space...etc" and all of a sudden Dakota blurts out "hey thats the Twilght Zone" He has the biggest smile on his face and he is laughing.

I was again taken back---flabbergasted trying to figure out how he made the connection as I know he has had no exposure to Rod Serling or the TV show. Now, I know he loves the Hollywood Tower of Terror a ride at California Adventure. They do have some clips of the the Twilight Zone so I am sure that is where he got the information. However the fact that he was able to transfer and de-code the media and apply it to another situation was impressive to say the least.

These all seem like simple things to most but for those of us who constantly face the skepticism from professionals, educators, friends and family alike that our kids cannot learn or dont have the ability to think globally; this is another example that it is just not true.

I continue to be renewed every time something like this happens. You have to have faith that there is a person in there who thinks and feels and has needs and wants. Do not ever give up on 
that. Do not let others "rain on your parade". 
Have faith and perservere. You just never know when the day will come that the brain clicks and the fog is lifted. Any little thing like this can not only make your day, it makes a case that your child has the ability to learn and has potential to continue trying. Be Relentless            

What a Difference a week makes!

Yes this is all hindsight--- but i have to say that today was a 180 from last week! Again it just goes to show you that Autism just has to show you that "IT" is in charge.

I must admit that those days are enough to send you to the crazy farm. You feel helpless, you search your soul for what happened and how it could have been different. You feel emotions for your kid and what he is going thru and you are exhausted because of the combination of all the afore mentioned STUFF. This is not unusual, anyone who lives with Autism knows this situation. It is not fun.

What I can say is that when you have a day like to day is renews you. It also allows you to see and consider things that were not in your tool belt last week! Every day is a learning experience.

What I believe now is that the volatile behavior was a pre cursor to him getting sick. That's the simple answer. The answer for that specific occurance many times its not that simple-- You just have to be a detective; many times the answer will not come till days or even weeks later. All you can do is use that info the next time you encounter crap behavior! Maybe it will help maybe not. Just dont give up. Try to preserve calm and ignore as much as you can. Use your knowledge to help your child. AND I will say this is all easier said than done!   

MacBeth Act 5 Scene 1

This is a most pecuilar story. One that needs to be added to the many that have been told about our kids and their uncanny ability to know things that we just cannot explain!

Although I try to tread lightly and am aware that the "static" becomes overwhelming for him, I continue to gently urge him to express what he is feeling so I can help him through this rough patch. Also to remind him that he does not have a "moving message board" on his forehead that explains why or what he is thinking. He needs to talk; to tell someone what he is experiencing so they can help.


In the midst of what seemed to be one of the most intense "blow ups" or "blow outs" described in the previous entry Dakota was growing increasingly pissed off at me challenging him to talk about what was going on inside his head and why he was behaving the way he was--- He jumped up and attemted to "banish me" from the room. He was angry and aggrevated and wanted me gone. From no where he stands up raises his arm and points with his arm extended slightly towards the ceiling and shouts  "Out" "OUT dammed spot" "Out I say"!
 
It stopped me in my tracks for a moment. My inner dialogue says "where the hell did he get Shakespeare from?" I was flabbergasted  not only at the quote but the appropriate nature of his command. I know that no where in his educational exposure has he ever heard or seen MacBeth and I was knocked out with amazement.
In all fairness I know the phrase has been used in some advertisement media but I honestly cannot recall nor to I remember having any exposure to this phrase. 
 
Call it what you will, dismiss it if you like--I choose to believe that it was some kind of savant skill that surfaced, like the kid that plays Mozart at 3 or the one who graduates from college at 10.
Our kids are so under-rated.Professionals including teachers and school personel as well as many family members fail to acknowledge that these kids have talents that go undiscovered simply becuase most think they are unable to "perform typically". 
 
Please take note of little nuances your child reveals you never know there may be a a hidden talent that just needs a chance. For me I will continue to dig a little deeper to see if more Shakespeare is hiding underneath the guise of AUTISM!   

The "Holidays" have officially arrived!

Well I guess it has to happen some time. Hip Hip Hooray the holidays have finally come in with a bang!

I write about this every year and I keep a close watch on schedule, routine and making sure things are well thought out but no matter how hard I try it seems like that nasty ole Autism has a way to rear its ugly head and make sure I know that ultimately "IT" is control. I do not consider myself a control freak, nor am I one who has to have order in my life. Autism does not roll that way so I do what I can to keep life as smooth as possible.

Yes, you are right we had the first big "blow out" of the season. Even with 23 years of experience behind me I still do not know what the hell happened. I admit I have seen similar behavior before surrounding the same situation but today was intense. I have been trying to "de-code" all the ques and figure out what to do, how to handle it or at least plan the best defense for the next time.

It stems from the Saturday routine -- without going into particulars we went through the typical schedule upon arriving home he went straight to the bedroom, pulled his clothes off and flopped on the bed. I went in to encourage him to come out and "IT" was on! Every nasty bad word came flying out of his mouth in a shrieking pitch. Then the growls and physical flailing of the arms. The anger and aggression is never with intent but it is always out of control. I try with every ounce of my being to not "retaliate" or become physical toward him because I believe that all it will yield more aggression. So the obvious is to not react. There's a point where survival kicks in and you have to defend yourself but that is only if injury is looming. This is my baby and I love him and I dont want to hurt him in any fashion BUT I cannot allow him to hurt me or others.
I have to somehow get through to him; that this is NOT acceptable. He could potentially become aggressive toward the wrong person and he will end up getting punched or worse. How do you do that when it seems as if all reason and sanity has gone out the door???

Unfortunately I do not have a "pat" answer. Pulling from as far back as Dakota's infant years I can remember when he would get so damn mad he would be screaming and crying and nothing would soothe him. So I would take him into the bathroom, turn out the lights and deprive him of all sensory; just hold him and usually in a few minutes he would come around. Using similar technique now I have discovered that the best strategy is to just walk away and leave him alone and let his brain "re-set". Of course you have to be very aware of the surroundings. {making sure that there is nothing that he could pick up, ingest or hurt him}

Now that I have several hours under my belt since the "incident" my observation is a bit less reactive and more cerebral. The first notation is this behavior is almost seizure like-- the loss of control and inability to manage his thoughts and actions. He literally has no control or intent with his actions. I fear that most anyone would misinterpret his behavior. "Typical" People do not possess the tolerance to really understand our kids-- they could potentially hurt them or worse drug them into a stooper just to "manage them".  The second thing that occurs to me is potential illness. I always try to rule out this from the onset of behavior. Often this is difficult because of his high tolerance to pain and inability to communicate whats bothering him. And finally I tend to think that Dakota may be trying to break his own routine but its is so difficult for him again with his inability to convey that he is trying to change. I believe that he does have a keen awareness his challenges and he honestly is trys to change things up to break the cycle.

This was a significant incident that brought out a lot of emotiuons and feelings of helplessness. Being in the middle of a situation happening so fast and furious it is so hard to figure out what to do and how to handle it--- The best advice I can give is to back out of the situation, take 5 minutes, breathe, think, analyze, wait and pray for devine intervention, some kind of guidance or an epiphany. AND  
Remember it is Autism and this is their disability -- it is not their fault.
You can be sad, you can hate it but it is what it is and there will be days like this-- Just pull yourself up by the boot straps and get on with life cuz maybe tommorrow will be a day that your child  laughs and has a happy day.   

My Baby cried like a Baby today.

There are so many myths about what Autism is and how it affects those who are challenged with this crazy diagnosis. One of the most prevelant is; our kids are so socially inept that they have no emotion or they have no preception how to display what emotion they might feel. A contributing factor to this is; many are unable to grasp "conceptual thinking" which is a part of  their inability to show emotion.

Dakota is for the most part one of these individuals. He has a high tolerance for pain and internalizes most of his feelings by no language or eye contact. Even when you challenge him to respond--he hears you and he understands you but 90% of the time he refrains from acknowledging any inquiry you have for him.
Even when we have lost pets or people who are a part of our "world" his reaction is relatively nill. Often several days later he will intitiate some conversation about the subject but almost always with very little emotion. Adversely I have also witnessed what appears to be callous response to someone who has hit their head or stubbed their toe. He often laughs inappropriately and seems to find humor alomst pleasure from someone elses pain.{I know in my head that this is just the Autism however there have been occassions where those close to him and his diagnosis have become perturbed with his reaction--simply because they do not understand it}


Well today was a different day. It is a fine line between sorrow since my baby was sad and joy that I was witnessing a break through. 

Dakota has suffered and extreme amount of anxiety about leaving school. So in an effort to keep him "connected" with the class, teacher and instructional aides we have tried to participate in a few activities since he graduated . 

This morning we met the class at Target for the Best Buddies Christmas shopping trip. He was so excited he got up and was ready to go way before he usually even wakes up! We got dressed and when we entered the store he was so happy! It was his "Nirvana". He saw his friend and immediately glommed on and that was it-- "leave me alone Mom".

I need to finish later cuz Dakota is nervous about me writing----OK

Dakota was inner-acting with the Best Buddies {the typical peers that are paired with the special kids} and of course those whom he knew from his class last year. Everytime he saw someone else his face lit up. He wanted nothing to do with me--In fact they all gathered in the little cafe and were having a snack and he literaly pushed me away--- I retreated to the car to allow him to have his time with his friends.

Afterall the fall-der-all the kids started coming out and getting ready to get on the bus to head back to school. I walked up and said "Come on Dakota we will follow the bus back"--about that time his teacher came out and said "I am sorry Dakota you cannot ride on the bus". In that moment it seems that all was ok. We walked back to our car, got inside and positioned ourselves to watch the bus so that when it took off we would be right behind it. I noticed that Dakota has gotten very quiet and he was starting to say things about school and the class and the fact that he was too old to be in class. His mouth started to pucker up and the corners turn down. I knew he was escalating. I felt so helpless cuz I didnt know how to stop the hurt. For a few moments  I beat myself up for even coming to the event. Then I realized I had a bigger mission here--What was done was done.I had to somehow make this a positive experience. As the bus turned out of the parking lot and headed for school the sorrow just became overwhelming for him. Huge crockadile tears, sobbing and snorting 
Oh My God  I dont think I have ever seen this much emotion. He was beside himself. Of course he lamented "They dont want me anymore!!!" "I didnt even graduate!" "They dont want me in the class!" My heart ached. I felt so incredibily bad for him. I actually pulled the car over and gave him a hug. I told him it was OK to be sad. He has the right to miss his friends. The important thing is for him to realize that is why you have to use the phone and email to keep in touch. So even if you don't see them in school every day you can still be their friends long after school is over for everyone.  

He gathered his thoughts and sniffled quite a bit. I contemplated for a split moment not to go back to the school but thought differently in a few minutes. Following thru on the intial plan to return to the school and the class was the right thing to do. It was what we planned and discussed. By not following through I could have made the situation worse.

When we arrived at the school we entered the classroom and in the very front of the class on the chalk board was a picture of Dakota. The teacher pointed out to him that even tho he has completed his class he is still there every day looking back at those who are still there. He nestled up to his best friend and they even went out and visited at the benches . I spent a few more minutes with the teacher and then Dakota came back in and said it was time to go--- I was so proud and sad and happy and sorrowful  all in one big ball. I didnt know what to feel. I knew that things happened today--Dakota really discovered some true emotion today and also how to recover and manage it. 

I dont think we are ever prepared for things like this . In the moment they can feel "icky". Once you reflect and see the bigger picture its actually your child growing and experiencing situations that perhaps we thought they might never experience!  AND in the end---it was a great day!!!!!!!!

It's Thanksgiving Let's Pretend! {dealing with OCD}

Well Thanksgiving was challenging to say the least== For the most part is was quiet and uneventful but Dakota had a hard time with the fact that his world was upside down. The was riddled with "faux pas".
The TV schedule was all screwed up for the most part the shows were not broadcast and the ones that were; were on at different times or channels:the fast food routine was a wreck because of course all of us "typical " people would say -- who wants to eat fast food on Thanksgiving??? but everything was closed and to top it off no mail no Banks and no stores open!

The hardest was the fast food---He even said "I just wish the day would hurry up and get over!"So I took him out for a little car ride just to ease the pain of all these changes scratching at his head----after we had been out for a while and we were edging toward home I got the idea of "pretend". Many Years ago a Mom described OCD to me as a superstition. That the act of doing what ever activity, was more about the feeling that something bad would happen to you, more than it was about what good feeling that activity yielded-- So as we got near home I thought why not try "pretend"?

This is what I did. We made it a joke and happy laughy thing-- I turned into the CLOSED DRIVE THRU -- drove up to the speaker and "pretended" to order the food and have a conversation with the "pretend" employee, spoke about the total and said-- "OK drive thru" approached the window and stopped . "Pretended" to hand money to the "pretend" person and got the "pretend" bag of food!! By this time Dakota was cracking up -- he was laughing so hard it was joy to my ears--- He said "Come on Mom lets get outta here-- all I see is ghosts!" I started cracking up and by the time we drove out of the drive thru we were both giggling!

It didn't resolve all of the anxiety for the day but it was a positive step in the right direction. Don't know if the unique quality of that one time was a fluke and it wont work in the future but I intend to keep it in my "bag of tools" and perhaps try it again!
Happy Thanksgiving to all ! Now here comes Christmas YIKES!

Finding their "Niche"

Perhaps I have written about this before --I feel very strongly about it so I guess it wont hurt to write again!

Our kids struggle thru school and most of them, even those with great "ability", are "warehoused" in Special Day Classes {SDC}. These classes and teachers do the best they can however the days are mired with interruptions and changes not to mention a various smattering of kids with all kinds of disabilities. Nevertheless Our kids get lost in the system and even with close monitoring and a strong IEP graduation comes and they are still not ready for "real life"!

So whats the saying???? When you get lemons learn to make lemonade!
Its sorta the same thing with our kids. When they come out of school you have to analyze and calculate where their "Niche" is. Many years ago Professor Stanley Swartz from Cal State San Bernardino told me that although he knew Dakota had a typical IQ he could not give me a piece of paper confirming that AND that what has to be done for him as well as most of the autistic kids exiting school is to find what they are good at and do everything to get them involved at any level with that activity. You have to expound on their strengths.

Dak is a TV junky-- he loves reality TV and game Shows in particular-- I know it may not be the greatest strength but it is what he gravitates towards.So when trying to assess what he might be good at then this information can be helpful.

Perhaps audio/visual classes at the junior college level, maybe working as a page at a local TV station or an extra in the industry.
What we have discovered is that Dakota is a great audience member. Follows direction well and seems to enjoy the whole process-- so he could potentially join a casting company.

My point is that you have to look at it like the glass is half full not half empty--- look at your child and assess what he/she likes, what he/she pays attention to, what his/her positive abilities are and turn them into a job or at least an activitity that can make them feel good about themselves.

I know this sounds simple.
Seems like everyone should think about these things.
Sometimes we are so overwhelmed with the "day" its hard to think about "next week"! Its all for the kids. Its help for your brain!

Making Decisions

Perhaps I have written about this before but I think it deserves repeating---

Since Dakota was not talking I have always said I would be so happy when he can express himself and when he does I will honor his wishes. I have been finding decision making very difficult because of Dakotas inability to do so. I will ask him a question or try to give him a choice and inadvertently he will respond wit "I DON'T KNOW"-- It drives me crazy-- "yes" means maybe and "no" can mean anything from yes to no to I don't know!!!

So this is how I have made things better---When there is a question and I want his opinion or choice I simply take a piece of note paper and write the choices. I explain the prerequisites to the question then I hand him the paper and pen and let him physically mark his choice---
For example:Last Saturday was Halloween-- Dakota was supposed to see his Dad--but I had been decorating at home and planning to dress up -So I explained to him he could go now or wait till after the trick or treaters came and then go -- I wrote the choices on the paper and then let him mark his choice---
For some reason this method has really helped.
I am not sure why . I think perhaps it is because he can actually see the choice in print so it "cements the choice". Another added perk is that the paper remains around until after the choice is executed this allows Dakota to refer back to it and know that it was his choice not some one elses.

Not sure if this will work for others but I know it has been very effective for us-- All I can say is keep searching and trying different things till you find a solution for your home. I know it has made a difference for our home.

Time Change

Just a quick reminder about the Time Change--- It is very easy to forget about it or not realize that it can make a significant impact on your autistic individual.
So if a new behavior has suddenly appeared or you are getting some kind of squirrely, off the wall change up in sleeping or eating or any other routine--- Just be aware of the change.........
Time change affects all of us in dome way so give your child a little extra care and kindness as I am dure he too is dealing with the "change-up"

Halloween and the "Holidays"

Happy Halloween or All Hallows Eve as some refer to it which is followed by All Saints day the actual reason for Halloween-- to cast away all the horrible and prepare to usher in the celebration of all that is good! YeaH RighT !!!!

Briefly I want to touch on something I have "nagged " about for many years. Probably on this journal a few too times,too! Parents Caregivers and all who are touched by our "kids" THIS IS A TRYING TIME --THE HOLIDAYS! All of us are stressed out and hurried trying to cram all the event that surrond the end of the year---Can you imagine what it does to our kids? I cannot stress on all how important it is to be cognitive of all that surrounds us. The lights, the decorations, the family gatherings, all the shopping, the smells, the visual stimulus, parties, plays etc.etc. our kids are so conditioned to routine that the holidays are like throwing a bomb into the middle of an already burning building. Behaviors will be up and compliance down. Remember too that if there are siblings in the mix that their activities will also affect behavior. Just want to put this out there because we all get caught up in one way or another and it becomes really easy to loose sight of the "big picture"--Every Day Life and Our Journey. Holidays make us all crazy including our kids. Do yourself a favor and make room for extra patience and tolerance and it will be better for all involved.

My personal experience this year specifically with Halloween has been very different. Every year Dakota has been motivated curious interested in everything to do with Halloween---This year was different. He seemed more anxious to get through it, less interersted in even having dialogue about costumes, decorating the house or participating in general, like handing our candy.

My observations and assumptions are this:

As with all things a pattern or routine is established.Our kids follow learned behavior-- then they start to grow and develop. They are exposed to many changes like people saying to them "oh arent you getting too old to Trick or Treat?"They get around typical peers who are going to parties or dances {which usually our kids are not included}or worst those same typical peers tease or taunt about doing the activities our kids have seemed to accepted. My guy is de-coding all this social crap and he is on his own personal hell trying to figure out what to do and how to do it-- rather than knowing that he likes something and just doing it whether anyone else likes it or not--{redundant to say it but again the social deficit our kids do not have} Then with the lack of language skills, not being able to say what your are feeling or thinking or at least not able to describe the thought process to someone who might be able to help our kids may shut down or act out. No real way to find resolution because they often times cannot do for themselves and those who want to help do not have a clue t

Separation Anxiety

Separation Anxiety comes in many forms and most are difficult for those us who do not have this "condition" to recognize. It can be the subtlest change or absence of something-anything that can spark a behavior or reaction.

For Dakota his is particularly strong and present in transition of schedule or routine --that's probably a no brainer for most of you who care for or live with autism---BUT the most overwhelming occurrences of behavior or resistance seem to be when he exits a program. It can be going to the OT or the PT, if he is attending a program at the college, even with in school when the semester changes and perhaps there is a new class or new students in a class or even a course of study all of these are pre-cursors to a spark of behavior. Its as if he is committed to these things as a life long activity and when suddenly they are ending or no longer available it is devastating to him.

The short answer or resolution to the problem would be to just continue on but as we all know things change and move and disappear. What I have concocted on several occasions is a two-fold process that seems to help the transition.
1.I start a dialogue early on {as soon as I know something is going away} I tell him that he is doing so well and that there does seem to be the need anymore for him to attend and that we need to think about moving on to another challenge. In the case that it is something that is being taken away without my approval I still try to spin it in a way that he knows that we will try to find something else to replace it.
2.I work with those involved to make a clear path to the end . This is telling him the date he will be ending the program {giving as much time as possible} and that he will have a small graduation ceremony. I either use my computer to print up a Certificate of Completion or I will buy one at the stationary store and get everyone involved to sign it and take a picture even have a small party like cupcakes and punch.
Of course you can tweak this process to fit your child and not everyone will have these issues. All I can say is this has really helped us when a program has come to an end and he is having anxiety or it.

The world is far from perfect and I agree our kids need to learn that it changes often with out our wanting it too, happen BUT if i can make it easier on everyone and especially my kid then its only a little extra effort for a smooth ending!

Disneyland for Birthday Boy!-

September always seems to be a busy month for us as we have the most important occasion of the year-- Dakotas Birthday. Very rarely he will acquiesce to an alternate location but about 85 percent of the time he wants one thing-- To stay at the Disneyland Hotel and go to Goofy's Kitchen for his birthday! So this becomes the family vacation of the year. We actually get a suite with an view of the park and Downtown Disney and just hanging around the hotel is part of the fun.

As a single Mom it is a rather big undertaking but I feel that Dakota has gone thru so much in his life that it is the least I can do for him. We were lucky enough to have 14 guests to celebrate Dakotas Birthday at Goofy's Kitchen.

The week was filled with mostly great moments but as you can imagine Autism always seems to make sure you don't forget its is lurking around. And with a celebration like this of course the anxiety just doesn't go away.

On Dakota's birthday we headed to the park so we could take advantage of the Disney offer to get in free. When you have an annual pass Disney was providing gift cards as an alternative but you had to go to the Main Gate. As we approached the Monorail station by the Rain Forrest Cafe Dakota wanted to board --- trying to avoid any problem I explained that we had to go to the Main Gate but before I finished THE BEHAVIOR REARED ITS UGLY HEAD. All he knew was that he almost always gets on the monorail and he wasn't being allowed to follow his "routine"-- His head went into "static mode". He grabbed me around the neck and called me a bitch. I went limp which usually defuses the situation in a few minutes. One of the ladies approached asking me if I was OK and I simply said "Yes I had it under control". I am quite sure she didn't believe me as security showed up momentarily. For an observers perspective I am sure they saw a grown man head locking a woman and had the reaction most would have-- But I really did have it.
As the security man approached this sorta egged Dakota on to continue the behavior--- I told security that he was Autistic and I was OK. Dakota was aggravated by the exchange I was having with the man so he clamped down a little more -- I directed him to ease up and let go but he was in "auto-mode" and COULD NOT control his actions at that point so I reared up and chest bumped him into the bushes that were near by mostly for the others who seem to doubt my ability to "handle" him. Dakota drew back and seemed to sorta come around. I said look let's just go back to the room-- I knew that I could try otherwise but the circumstances were leaning towards giving him the "out" rather than pressure him to reign in the behavior and continue on to the park.{Often time our kids have the ability to "re-set" and continue on but it has been my experience that our kids have a self awareness of the situation and if you have the option it has always been beneficial to offer the "out" to try another time--And particularly in this situation where we have plenty of time to go to the park again and the option of a hotel room extremely close}{ also I have noticed that even when the kids do continue on, there is a much higher incidence of re-occurrence with the behavior. It seems like they are like a pot of boiling water even after you turn off the heat and pour the cup of hot water when you put the kettle back on the burner it will boil up again from residual heat-- much the same way a behavior re-occurs}

By this time Dakota was distressed I could see it in his eyes -- of course there were many on-lookers and I am sure they were judging BUT I DO NOT CARE I am so far beyond worrying about what others think or what appearances are -- I could give a damn-- They are the ones who need to pull their heads out of their asses and realize that life is just not an Ozzie and Harriet World . Every single one of us has some kind of challenge from a disability to and addiction to an appearance issue or some other kind of hang up. So My concern was getting Dakota into a safe environment where he could de-compress--- BUT before we exited Downtown Disney the f-bomb flew and flew many times -- inside I was kinds giggling to myself but outside I was trying to reel him in because I just didn't want some "YAHOO" coming after him for his out burst. We made it back to the room and by that time I could tell he was coming around but he was still touchy.His pop who was visiting laid into him which in my humble opinion was more of a reaction of embarrassment on his pops part but I cannot judge nor tell him{pop} how to feel or react as we are no longer together. Dakota broke down and started to cry --which is rare but within an hour or so things settled and the rest of the day went well---

You know the lesson here is you just cannot allow the public to dictate the way you handle your situation. Many always have opinions on how your child should be disciplined or handled and they are not the experts on your kids--YOU ARE . I guess after 23 years I have grown a very thick skin-- sure I want my guy to fit in and to be able to be in the "typical community" but by the same token we all need to exercise more temperance towards others. We need to live the same towards others. Don't Judge me and I wont judge you!

Yes Dakota needed some constructive guidance but I still have to remember that his behavior is not driven by a knowledge of what he is doing-- It is SIMPLY THE DISABILITY and the sooner your embrace that and practice it, the sooner life will be easier for both of you. The behavior is not done with INTENT. IT IS SIMPLY THE DISABILITY just like if he had cancer or a limb missing or diabetes or anything else you can imagine. Autism is the miss-firing of the neurons in the brain-which triggers behavior-- just because behavior is a social thing most every one think is can be controlled --WELL IT CAN'T FOR THOSE WITH AUTISM!

Barring that particular incident the stay at Disneyland was pretty wonderful-- we had some challenges like finding the hamburger or pizza he wanted but for the most part it was a great time. And for the first time Dakota was able to have a friend stay over one night during our stay and go to the park -- so we made progress!

Every day is an adventure for most every one but when you can mark progress with Autism then you have got something to celebrate!
Thank You Disneyland and Disneyland Hotel for a wonderful stay!

My how Time Flies!

Again a month has gone by and no posting---SORRY
This past month has been busy so please bear with me as I get back on track---

Presenting Choices

A quick post about presenting choices-- As I have worked thru many situations with Dakota I recently discovered the most effective way present choices and eliminate most behavior.

I have struggled with Dakota getting escalated when I try to involve him in making choices throughout the day. Since Dakota has reading skills and minimal manual dexterity I now utilize scratch paper or notepads or any writing surface I can find in the house to present choices .

When I verbally ask him to make a choice it either generates no response or even more so a behavior that potentially will escalate.I do not understand the root cause, all I know is it is not beneficial for him or myself. Sooooooooooooooo I now grab a writing utensil and scribble choices -- Do you want to eat a Hamburger or a hot dog
Grapes or melon
Then I hand him the pen or pencil or chalk or marker and re-read the choices and ask him to pick one---
It has been working like a charm -- he will either circle or check his preference-- and BINGO we are on our way

Next time you have a situation try this-- it sure has helped us!

I'm Hungry Momma

Dakota did not say one word until he was 5 years old---Many of the so-called professionals that came to the home and worked with him told me "DON'T GIVE HIM ANYTHING UNLESS HE ASKS FOR IT" that included WATER. Well sorry folks you maybe experts and you can advise me BUT I will not "cave" to their suggestions just because they have read a book.

Needless to say I am probably the biggest enabler on Earth and perhaps not exactly the best title to be given however I am a Momma first and I will do what feels right in my gut! Withholding water was not something I will do!

22 years later language has been a slow process. That's not to say that Dakota has not developed reading skills and cognitive abilities that allow him to have conversation but the DAMN autism just doesn't cooperate. He also is a smart kid and he knows what will get him by-- so he will do everything in his power to utilize as few words as possible.
I am forever hounding him to use a complete sentence. every chance I get I will stop and withhold action until I get at least a noun and a verb !

There are many situations I could use as examples here's but the one I want to use:
I keep re-iterating to him that no one knows what goes on inside his brain if he doesn't tell us-- we cannot read his mind and if he needs something he has to use language--sounds straight forward and easy RIGHT? HA HA HA HA HA HA
Dak is not one who will raid the fridge or cupboards. He will just not eat if it's not fixed for him and set down in front of him-- This could be good in ways --YES again what is the consequence come the day that someone who does not know him has to provide for him---
THEY DON'T KNOW THIS ABOUT HIM!
So have been pounding it in his head you have to ask, you have to let me or someone know if you are hungry,want or need something to eat! You cannot expect us to be mind readers. From that he has emerged with;"Are you hungry Momma?"-- I know that this is the way he tells me that he needs a snack or its time for a meal--
This works well because I know his cryptic code

So one night last week after all was said and done and the evening was wearing on all of a sudden Dak gets up and hes hem-hawing around and he looks at me and says "I'm hungry Mama"

Oh MY GOD -- the clouds parted and I saw the heavens-- How many years have we been working on this??? Well I jumped up and immediately took him to the kitchen to discuss options.

It may sound simple and insignificant to most --Its not to me.It feels like the result of hours of instruction and prompting and it just paid off!

The lament is DO NOT EVER GIVE UP-BE RELENTLESS
IT DOES DELIVER DIVIDENDS!

Bananas -- Food in general

Dakota does not have many food issues-- there are a few things he doesn't seem to care for --- I think mostly because of the consistency or texture. For the most part he is a kid that will eat most of what you put in front of him.This is a kid who will eat rutabagas or broccoli, almost any vegetable you can imagine.He seems to have an aversion to things like BBQ sauce but he will literally drink cocktail sauce, he does not like biscuits I think because they are too mushy or soggy for the most part that is it-----

Although he is a relatively big kid he does not gorge or over eat. His size is mostly because he just does not have enough activity or friends to interact with to get physical activity.Something I need to work on -- truth be told I too could use the exercise too--ha ha--

He has a big OCD thing going right now with certain fast food places on certain days but often after getting the food he will not eat the food -- its more about the action of going then it is about the food. I know that is hard to understand for most but it is just the nature of the beast!

He also seems to gravitate towards things that are tart or sour rather than sweet or salty. He will eat lemon slices whole -- peel, seeds and all --most fruit is good for him BUT what I have found is that the presentation {or preparation} is the key to success in consumption!

Bananas for example give him a whole banana with the peel on or off he will maybe take one bite and put it down and that's it---BUT peel the banana and break it is half hand it to him and he will eat it every time!

Apples {I know more work and not always practical but} if you core and slice the apple he will almost always eat the whole apple where handing him even a small whole apple he will take one bite and boom hes done---

Grapes on the other hand need to be left on their stem-- usually place them in a small colander and put them on a table near the TV or other activity and before I know it they are all gone.

Melons always work better if they are "chunked" into large squares that can be handled either with the fingers or a fork -- give him a wedge -he wont have anything to do with it--

All these funny little nuances that people take for granted are observations that I have worked with over the years . Of course not all people are the same but again if you are having issues with meal time sit back and take a look and see if anything new comes to mind ---
It is incredibility frustrating but it feel so good when you find a successful strategy!

Specific Strategy

OK Today was a challenge and it seems to be a recurring behavior.
Dakota seems to be occasionally triggered by the media reports that come on to the TV or Radio. Particularly reports that seem to focus on issues or politians who are not viewed in our house as "favorable.
In other words he hears his parents and grandparents spout certain comments and then when the situation is just right and a newscast comes on reporting on such people or issues--- he flies off the handle
Shouting and growling saying they need to "shut up " or stop talking about it or vote the "sucker" out or whatever things you all can conjure up in your mind---It turns from verbal ranting into shouting till it escalates to physical contact with anyone in his way if he feels that he is not getting the reaction he seems to think he wants.

I realize that the best way to avoid this particular behavior is to curtail our comments in the first place --- Easier said than done--- we are human and we don't realize that when we are in the heat of the moment commenting on something we don't like that it is permeating his brain later to rear its head. Then when it does all bets are off and you find yourself in the moment doing all the things you know are feeding the behavior-- perhaps shouting yourself or becoming physically aggressive to try to calm the "Autism" That is wrong in so many ways and you realize it later.

This is where I have discovered something that has started to work for us. Of course the best case scenario is to totally ignore the behavior all together -- Often time this is IMPOSSIBLE.Again pick your battles is it something that need to be dealt with or can it be left to fizzle out--- Once you make that assessment what I have found is Complete silence and ignoring as much of the aggressiveness and verbal growling as yo possibly can. And if it becomes physical where he grabs the minute he touches me -- I go LIMP--I just flop over and go limp. I have flopped on the bed and literally played dead --of sorts -- IT WORKS
I have to say that I have had remarkable results-- Dakota gets very concerned and curious but its almost like having a re-set button.
I don't have to stay bent over or flopped on the bed very long and he comes around. That coupled with a lot of silence after "I come to" seems to do the trick.

Don't know if it will work for anyone else but it is very effective in our home. Depending on the situation I will try to have a conversation later in the day about what caused him to react that way . I usually don't get much participation verbally but I can tell that usually there is understanding and sometimes even remorse about what happened earlier.

All I can say is just keep trying -- and find what works for you and your family --eventually something will click!

Dont want to "misrepresent!"

It is always the purpose of this journal to offer "food for thought" and perhaps a perspective that might not be the obvious. Sometimes I think that I portray things as "Coming up Roses" or shall we say more fluff and butterflies than the get down in the dirty grind of every day life with Autism. I apologize for anyone who might be losing faith in my blog because of this.

In defense of myself I will say that I do believe that anyone dealing with this disorder on a day by day basis needs all the optimism they can get. Also it is extremely easy to loose focus and literally forget that the person who has Autism CANNOT control so many of the things we as "typical " {I hate this label} human beings do. So I wish to shed as much light and hope and insight as I possibly can.

With all that being said;Today SUCKED! And there have been many other days like it . I try to take each incident and turn it into a learning experience most of the time with some success. However there are many times you try with everything you have and you just cannot figure out what happened and why!

There was a good part of the day that was basic and routine and for those hours and minutes you are thankful. It almost becomes something that is taken for granted until "Hiroshima" hits. Honestly as the years go by it does seem to be better; less incidence; more ability to handle a situation,but sometimes in the middle of a meltdown it seems like years pass and there is no way out and no solution to the problem. What I have discovered in our case is that the sooner you do not react or can
de-escalate the quicker "Norm" returns. {I will post a specific incidence in the next blog}

Although I believe you can educate yourself and arm yourself with many tools there is will always be situations that will make you scratch your head and wonder where the hell "that" came from --- and what the hell caused it -- further more how the hell you can ever avoid it again!

I think the main purpose of this particular piece is the acknowledgement Autism is down and dirty and it does not play fair. When you have a success you beam like a lighthouse guiding a ship in a storm but when that dragon rears its head and shoots fire there is an overwhelming survival instinct that takes over.Sometimes your are not very pretty and afterward you beat yourself up because you think you could have handled it more effectively.

Moreover I want to address the minute or hours of most everyday that turn our lives upside down. It is forever better to tell others of the good and positive. Honestly what I want accomplish with this excerpt is to truthfully let others know its not all roses. I never want anyone to think that I am not down in the trenches dealing with the same issues they are and certainly not that I have any miracle solutions.
Autism is a complex crazy disorder that not only cripples the individual who has it but affects everyone in that persons life.

For Christ's Sake!

this excerpt was generated from"a go around " i have already had this morning with the Inland Regional Center---sparring the particulars I felt it necessary to comment on the importance of never giving up!

Does it ever end???"One" wonders how much "one" can take before you finally blow up!

Many of us face difficult challenges every day not just with the Autistic Community but life in general. Whether it is cancer, an addiction, abuse, or some other life altering event; it can be overwhelming. For myself and I assume for many others we always hold out hope that eventually somethings gotta give, there will be a reprieve or perhaps a
"Happily Ever After!" NOT!

Some are fortunate to go through an experience and come out the other side with a little more insight and wisdom. Some go through life never living anything other than an "Ozzie and Harriet" life. Then there are the rest of us-- who for some reason have been chosen to face this crappy stuff over and over again till the end of time. It is a battlefield. It is why many repeat over and over again "choose your battles". You never know if you slay this dragon another is just around the corner and its 10 times as bad as the first one.

Metaphorically I speak about the obstacles most all of us face caring for some one with special needs . I don't mean to be exclusionary that is why I acknowledged others above.
But this where I just become indignant. Over and Over from the time your baby is born it is a fight. First its the Medical Profession and all they insist is wrong or NOT wrong with your child--then when you can almost agree that you need special things for you child --here comes the School districts and what a pain in the ass that is--- day after day, month after month, year after year you watch dog the class ,the aides , the teachers , the school trying to make a difference in your kids life. Every time you turn around its something else. The IEP is not being enforced, your child is being excluded, hes not getting services promised, there's a budget cut, someone is absent {like the teacher and then the whole day is a wash}, the bus was late or tried to drop them off at the wrong address, other kids are picking on ours and NO ONE is coming to their defense; the list goes on and on AND it never stops!
Then one day they are ready to give your child a Certificate of Completion {never really teaching them much} and send them on their way. Its as if they fall of the edge of a table-- the supports and opportunities become minuscule. But you think "Oh the worst is behind us!" OH NO then you have to fight again with what little services are available through the Regional Center. Again you are jumping through hoops just to get a little of what your child needs and deserves to exist in his community.

I am loathed to say this but "It is an Never-ending Battle" Every fight is another chink in the armour. You cannot give up. You must persevere. You must be Relentless. Sometimes you will find yourself limp and lifeless and wondering if it is all worth it. Trust me IT IS!
For every battle you engage in you have made your child's world a little bit better. You have brought light to a corner that was dark before and perhaps along the way you have also taught another person a little bit more about your child and the world he and many many others live EVERY DAY OF THEIR LIVES!

Recognize, Understand and Accept some Behavior!

There will be some who will probably disagree with me adamantly on this observation . I stand solid on this belief. I hope those who read this will consider my opinion.

Our children, teens, young adults, adults regardless of their Autism are just like anyone else. They have their likes and dislikes and personality quirks that make them WHO they are. We as parents and caregivers,even professionals that work with our kids.have a human flaw to try to correct their {our children} every flaw. I define flaw as anything that would indicate to the "outside world" that our kids are Autistic or any less than "typical". From a personal stand point I am constantly aware of our surroundings when in public and keenly aware of anyone that might be observing or paying closer attention than most to my son and the interactions that are occurring. My mind is in constant motion analyzing, plotting and negotiating ways to allow Dakota to co-exist in the community without causing judgment or worse, rejection from the general public. I want him to have a even playing field. I admit perhaps that attitude is a bit "Pollyanna".

Recently we went to a studio for a taping of a TV show. This is a preferred activity and something that Dakota does extremely well. Once seated in the studio audience there are periodic times when you are allowed to get up and stretch, go to the bathroom or get a drink of water---as some of the tapings can be 3 or 4 hours.

I try to prepare Dakota so we wont have any "hiccups" while we are at the studio/ Those hiccups being primarily "behaviors". Make sure he has eaten and pee'd and all of his creature needs have been tended to ----

One issue I have been struggling with is Dakotas hydration. For several years he has had a blatant refusal to drink water out of ANYTHING other than a water fountain{YUK}. I have tried everything he absolutely refuses a water bottle or even a fast food drink cup with a lid and straw. he will not drink water except at home with one specific glass that sits next to the counter top dispenser and even that is only once in a while--- he has regressed to eating ice cubes for hydration most of the time. This behavior is very challenging due to the health implications of keeping the body hydrated . I have to stay on him at home and I use alternatives like de-caf Ice Tea or 100% juice Popsicles. occasionally I torment him enough to drink from his glass and I succeed about 50% of the time. When we are out we improvise. Mostly seeking out any water fountain available -- I have gone so far as to have him drink from a hose because there was no fountain!

OK so this gets back to the title --- Recognize,Understand, and Accept 'SOME" behavior.When we were at the studio Dakota decided to get up to stretch and seemed like he wanted he to come with hm-- I followed him out to the lobby where he discovered NO WATER FOUNTAIN.
Before I could even say a word he grabbed me by the shoulders, growled a bit and started shaking me. It was near a doorway where people were going in and out of and couple of men came around the corner and looked like they were not sure what to do. I took a deep breath reached for my "inner calm" and said its OK Dakota -- I know you want a water fountain--they don't have one--lets go see what we can do?---- I originally started to head for the bathroom thinking I could get him to drink from the sink but there was a line and I didn't want to deal with the looks and stares by barging into the men's or ladies room. So we walked outside. I found some sprinklers and knew there had to be a water source so we strolled around the building until I found the valves and VIOLA There was a spigot! I know anyone who was watching probably thought we were both nuts but I knew this would resolve the behavior. I got the water turned on and had Dakota just take a few sips and it was like magic---- He walked away, walked back inside and that was it NO MORE BEHAVIOR.

So I cannot stress enough how much you have to keep on your toes to recognize those triggers and know what strategies you can use to appease the behavior. Some of these behaviors are just who our kids are and we cannot make them give up every thing that defines them as an individual. We all try so hard to turn our kids into "White Bread" when they are more like a "Swirly Rye!" We have to let them have some identity and sometime that's indicative of behavior-- There is a reason in their head why they do what they do . I believe they they cannot possibly be mis-behaving for the attention -- they are simply using the communication skills they know and asking for what they need.
We may not agree with them but sometimes we just have to understand and accept what we recognize as a part of their identity.

The Summer and 4th of July

Well Happy Fourth of July--to everyone.
Summer poses different challenges for those of us who live with Autism.
Our kids for the most part are used to structure and routine. When summer comes and school ends our kids seem to fall apart. Not always and not with all kids but enough to write a little about it----

IF you have observed any new or different behavior or stemming it may because of this type of interruption.

Look we all need a break especially if we are ones who are "managing" our families. Summer is a time that allows us to sleep in or change things around a little since we don't have the routine of school. The irony is that it can also be the thing that makes our kids a little more crazy.

Don't beat yourself up trying to keep structure or uniformity. It can be a double edged sword. It may be a way to keep peace in the house and comfort for your child however it can always be a way to desensitize your baby to change. Our kids learn much the same way most of us learn -- They have to experience challenges and change in order to process and develop an ability to tolerate and act appropriately in everyday situations. Again you have to pick your battles but you have to remember that the more you expose them to changing environments the more they will adapt. You must be educated in your choices; knowing what will work with your child and when the time is right. Don't hesitate to try because in the end your whole family will benefit.

I have also found that age is a great equalizer for our children also. My observation is that as our kids gain age they seem to gain ability to tolerate. Don't misunderstand our babies will always be autistic but there is something to be said for time.

So do what you can and do what you think you need to do to keep sanity in your home and lives. Most importantly do not beat yourself up if you cannot maintain the schedule or routine. Also remember that there will come a day that school will no longer be a factor. Our kids have to face the world like anyone else and believe me the support and services vanish . You have to create what you want for your child. Believe me the changes come and our kids get through it. Coming full circle; summer is the perfect time to search for and try new and different things. To open up a dialogue {more like a monologue} with your child to explore new possibilities and experiences. Give them some tools to handle the world outside of Autism.

Happy Fathers Day

To all the fathers who stay plugged in and committed to their kids
Happy Fathers Day!

Idle Chatter

I have found that the majority of my posts are usually triggered by incident.I think to improve this journal I need to posts more
"idle chatter" from my brain. After all this is a forum to offer creative solutions but also an opportunity to step up on my soapbox, too!

I recently had an exchange of ideas with a friend about how I "coddle" Dakota. Whether it be bad or good, accepted or not --my position is I don't care. I don't care what the "professionals", family, friends or strangers say.

My job on this earth is to do the best job I can to not only provide and fight for my son but to do whatever I can to provide him with memories that no one can ever take from him and to make them HAPPY.

A big lesson with Autism is that we do not live in an "Ozzie and Harriet" society.Everyone has "warts" and most everyone has issues. It is our job as individuals as well as a society to look past others who are human beings too and allow them to live their life the way they want. That's not to say that we shouldn't help support those who need or ask for our help but what I am saying is we need to worry less about what goes on in the house next door and worry more about how we want our lives to be-- AND NOT WORRY ABOUT WHAT OTHERS THINK.

Perhaps this seems to be rambling;I think I an speaking of one of my biggest pet-peeves which is people who are judgmental.Too many are to concerned what others are doing or how they are doing it. Too many look at someone and how they are dressed or what kind of car they drive and pass judgement/ Too many see what they think to be an unruly kid and blurt out stupid comments like "Oh he just needs a good spanking" when a thousand spankings are not going to help a behavior of an autistic child. Too many see homeless people on the street and cannot even make eye contact with them.They are a human beings who are not as fortunate as we are to have a place to go and a bed to sleep in. Perhaps there are some who choose to live on the streets,however I cannot imagine anyone who conscientiously made a choice to not have a home. The bigger point is if that's what they choose then who an I to say differently.

Everyday it becomes more and more apparent,to me, that we are living in a "covetous" society. Everyone is trying "to keep up with the Jones" . Flashier car, Bigger House, fancier furniture, a boat, Quads,an RV,Better landscaping and outdoor grill and patio stuff etc. Parents are working 2 and 3 jobs leaving their kids at home to fend for themselves just to pay for all this crap FOR WHAT END RESULT? So our kids can have it better than we did? What good does that do if they never see their parents and all they ever expect is an I-pod, an I-phone, Nike's, or whatever the imagination can conjure up? Here's the irony-- those are usually the people who are "judging" you about how you handle a situation out in public? Perhaps I just showed my judgmental side--See we all can fall into this trap.

We need to LIVE--and let live, If someone needs to have a clean house and someone else doesn't then its their choice . If someone needs to work 3 jobs and someone else cant find a job or doesn't want to work then that their choice. And short of witnessing child abuse. when someone has a child acting out we need allow them to handle it the way they see fit. Often times I find myself walking up to the dis-shoveled parent and saying I am sorry you are having this trouble but I want you to know I have a child with Autism and I would be thrilled if they were doing something typical like yours is doing right now-- every time it has been well received and often takes the edge off of the behavior and the parent.

I don't have any answers for anyone else. I only know what works in our house and life. I only write about this "idle chatter" in my head to offer a thought that perhaps had not crossed your mind!

Our Carmen

Carmen San Antonia de Walnetto was her name and she was our loyal and faithful friend since 2002. She was found roaming the streets looking to be a part of someones family and home. She was quiet and calm and perfect for Dakota.

We found out that she was no young pup but had been around the block a few times so we knew that we wouldnt have her around as long but never the less she came home with us and instantly beame a part of our family.

She had her bouts with her ears and her eyes but cancer got her in the end.I tried everything short of chemo to help her but it was inevitable as it is with all of us.

I knew that this was the first time Dakota had ever attached himself and it was going to be what I thought a very tough thing when it finally happened. I did my very best to prepare him by telling him that she was getting older. That she was different than us because dog years are longer then then our years and that some day she will pass before us.

Of course it could not have happened at a worst time. The week we were going through all the stuff for graduation. Gees --- can someone give us a break??? Anyway the day she passed I took her to the vetwhile Dak was still asleep, I know I was definitely avoiding confrontation-----
It was the day he was supposed to go to the Senior Luau and plans had been made and I was going to do anything I could to get Dakota to that Luau. So I told him she was at the Vet and he was working on her and would call. The next day was another event so I waited until after we successfuly got him to that event and then later that evening I broke the news to him.

I expected a huge reaction and even some emotion as Dakota, unlike many other Autistics, has a very deep emotional side which he does display. I dont mean the behavior or tantrum kind but more like the typical emotion we "non-autistics" have. {Man is that an awkward comparison!} A N Y W A Y I sat him dow and told him that Carmen was very sick and the doctor worked on her but she passed away.
He sat there and paused for a moment and simply replied " You said this day would come".

And that was it--- again another lesson. You just never now what you are going to get with Autism, you can plan and try to control ;fuss and figure out scenarios BUT you just never know whats coming next.

Graduation ----- N O T !

This past week thousands of parents filled stadiums and gymnasiums to celebrate the accomplishment of their children who have survived the school system and have graduated. They sit with pride and angst as they see their kids pass the threshold of being a youngster to early adulthood. In all probability wondering: What will they do next ?Where will they go? Who will they become?

It's as much a "right of passage" for the parents as it is for the kids and I think we all face it with anticipation. Never knowing if we will be anymore prepared for it then our kids are.

This week I sat on the sidelines of life, as I watch Dakota's opportunity to walk at graduation and celebrate this long over due accomplishment pass by. I cannot lie that a part of me died and another part cried because Autism stole that away from both of us. I will however point a finger at DeDe Moga and the Special Education Department of Chaffey Joint Union High School District as well.

I wont go on an editorial rant about the injustice my son received from the school district because there is a bigger lesson here to write about however the actions by the above mentioned person and others within the school district Did Not help and definitely contributed to the end result of Dakota refusing to walk for graduation.

The week before graduation we were successful to get Dakota to participate in Senior Luau and a special party for seniors in his class.
Because Dakota had exited school in January we knew we had a huge task on our hands bringing him back into the fold at the end of the year. So many had drilled into his head that he was done with school and it was time for him to move on that he had this in his head. So when the activities started to come around he would echo what he had heard over and over that "He was done" and "He was not going back". I kept trying to put a positive spin on it; that he was not returning but this was a celebration of completion-- that it was a way for him to say exactly what he was saying; that "HE WAS DONE!" Some how I didn't do a very good job of convincing him.

The day came for graduation and he had to go to practice in order to be able to participate in the ceremony-- he stonewalled, dug his heels in and refused to get out of bed. It's really understandable but still hard to accept. As a parent all those bells and whistles go off in your head and say "OK should I "make" him go? -- Should pull parental rank and force the issue? For a typical kid --YES; for a kid with Autism the answer is much more of a gray area. It gets back to what I have lamented many times before I can only present the opportunity -- it is up to him to make the decision to act on it.

One of the other facets to this is, again my expectations as a parent. Me thinking that this should be an enjoyable, fun and exciting event. Me thinking that any kid would want to do this-- because I did when I was a kid. Well -- whats up with that ? Just because I enjoyed it and loved it and wanted to participate doesn't mean that Dakota wants to do the same thing. He is an individual and is entitled to his own wants and needs. Besides who am I fooling???Although the great majority of parents and kids are experiencing this celebration there are many others who are not and they are not all Autistic! There are certainly typical kids who never finish High School for more reasons than I can imagine including some who just do not want to walk . Maybe because they are quiet individuals who do not enjoy the limelight and hoop-la.

In retrospect there was a little let down and sadness. And as usual with a little creativity I made our own kinda of acknowledgement of the day. I told Dakota I would not make him do anything he did not want to but would he please just go up to the stadium and look around. I told him we would go several hours before the actual ceremony so he would not feel any pressure---he agreed. {I took his cap and gown and certificate hoping I could convince him to put them on.}

We arrived at the perfect time everything was set up but no one was around -- we walked to the stage and podium I took all the garb with me and asked him one more time if he would put on the gown-- and he was having none of that BUT He stood up on the stage leaned on the podium and let me take pictures. Then he was done. As he left and headed back to the car. I took the cap and gown out and hung them on the podium and snapped a couple of pictures as a tribute to the "Unknown Soldier".

18 years, countless IEP's, fight after fight with the schools, laughter, tears, set backs and accomplishments all came to an end on that day. Now its time to conquer the rest if his life. Most importantly doing every thing I can to make sure he is happy and healthy.
This chapter has come to an end-- a little different than I pictured it but hey "ya work with what cha got!"