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!"