Sometimes --A vistor in your home----

As I took Dak to see Dad yesterday it occurred to me that I often wonder how his day goes - - - That although there are times and will be more and more time when he ill not be with me, I think about if his demeanor is replicated with everyone. For the most part we all react or act differently with different people whether we are typical or challenged but with AUTISM  it seems to be a little more complicated .  The "social cues" or how "we" read people are much more {I hesitate to say} natural where our kids have a very unusual way to perceive ANYTHING  much less the actions of a human!

Add in the element of unpredictability with Behaviors we have a "crap shoot"

I guess where I am going with all of this and why I titled it "a visitor" is my curiosity about Dakotas adaptation to the world around him particularly when I am not present. 

I have for sometime been trying to "push Dak out of the nest" for a number of reasons -- mostly because I think he is ready for it. However, just when I think he can adapt to a change or new challenge that's when a behavior or unusual reaction will pop up . Then I get nervous for him, about how others will take those actions and either retreat, withdraw or give up on him. Its scary--- I know he needs to spread his wings and mainly without his mother and eventually without overwhelming support . Pushing those boundaries can sometimes end in disaster and even failure. There are days when I just have to say it is not worth it to push him when he is in TOTAL overload. On the other hand if you don't challenge him he will never learn or program himself to accept new environments and people .

Some might say don't expect that -- I understand he is disabled and he has a particular disorder that inhibits the ability to be "typically social" but I will never give up on trying to give him challenges to make him a better person and especially one that he can function in the community without too much negative reception or perception. 

I draw a lot of criticism for "coddling" and for not PUTTING him in a day program-- Which to me is mostly a glorified babysitting situation but this is how I see it-- I understand that Dakota is challenged and I have no problem with the "Challenged Community " being a COMPONENT of his life BUT  he needs to be as typical as possible . Is it fair that his whole life be Special Ed ?? NO --I say! This means I have to bust my butt to strive for as many normal {I hate that word} opportunities as possible and maybe a few more on top of that.  

Coming full circle back to my initial thoughts about "a visitor in my house" --- I almost titled it a "Stranger in my house" Because when Dakota goes off the deep end and his behaviors go sideways --It feels like I have someone here that I don't know . Its not that I don't expect moments of craziness and unpredictability {I am far passed that]  BUT when he get so intensely out of control all of the above that I wrote about flashes thru my head in a matter of seconds ---I have feelings of despair and the inability to control a situation. It like having a stranger in your home and you are not sure what will happen next.

What saves me every time is taking a deep breath, walking away, almost chanting to my self either the Serentity Prayer or "this to shall pass" AND then starting over. I have to be relentless in my pursuit to give Dakota a QualItity of Life  that no one will ever be able to duplicate---My only wish is that someone somewhere will continue this effort once I am no longer capable or able to do so>
And hopefully they will never give up on the SOMETIMES "Visitor in their life"

Thanksgiving possibilities

They are having a Thanksgiving pot luck for people who have difficulty finding appropriate places to go for Thanksgiving with their Autistic kids Thought you might be able to spread the word or might know someone who might be looking for an alternative


Below is a link

Its a little more than half way down the page

https://ieautism.com/Home_Page.html

Just one of those moments.

I consider myself a pretty upbeat person with a overwhelmingly optimistic view of life in general. Oh I have my issues and can be more than a bitch sometimes but considering Autism is a major player in daily living more times than not, I can accept things and be content.

Today has not been one of those days --- I found myself in the bathroom for the third time today helping Dak and it was like a flush of water flowing over my head and tears came to my eyes. I had some extra cleaning to do and the thoughts flowed to who will do this when I am no longer here? Then questioning myself if I did enough to help him help himself? Could he have had anymore "training" that would prepare him for the days beyond those with family? Then I fret over unfinished business and although I try everyday to slay that dragon it seems the more I worry about it the more difficult it is for me to do everything I want to do --In an Hour---In a Day--- In a Week  well you get the idea. 

I find myself still continuing to get him to understand simple things like picking his clothes off the floor, moving his shoes out of the middle of the room so he wont trip over them, or how to sort clothes for laundry--oh and try as I might teach him how to use the washer. As soon as that thought clears my head then I realize that he has limitations that will never be remedied and I just need to let it go-- That's not my nature

Oh don't get me wrong, I can be a great procrastinator and can be somewhat laxidazical with every day life BUT Dakota and his Autism has been the one thing that I just wont give up on. After 25 years, it has become apparent {to me} that sometimes you just have to let go . You just have to have faith that you have done your best and it is, what it is.

That doesn't stop the haunting thoughts from consuming you once in awhile  BUT you just have to get over that hump and get on with Life .It can be all encompassing. The best thing to do is make it thru the day only to wake up in the morning and start fresh with a New Day.

The Holidays --

Well here it is Fall with Winter fast approaching and Dakota reminds me everyday several times a day -- That's Autism--His anxiety really builds during the holidays as it seems that every other week there is another holiday of some type is coming or just around the corner. I know I have preached on this at least one other time but it is a really tough time for our kids. The change in the time and the weather, the decorations, the family gatherings and dinners, shopping and music and what the hell else?????? Everywhere you go ITS DIFFERENT AND EVEN THOSE KIDS WHO UNDERSTAND AND ACCEPT THE CELEBRATION HAVE A HARD TIME WITH BEING OVERLOADED!
And to top it off is it any wonder our kids have the anxiety surge when they walk into a store before Halloween and they already have Christmas decorations?Yep that's right I blame corporate America for some of our kids anxiety--yuk yuk

Well Halloween has passed and Thanksgiving is upon us as well as Veterans Day and LORD knows what December brings-- Oh I ramble on but I will soon post Halloween pictures. Just need to down load them.
Stay tuned for more posts!

Back to reality

Well lets see--the "high" from the birthday celebration has certainly worn off--Last week was a "Comedy of Errors" and one of the most frustrating weeks of my life. 

Last Monday I realized there was something wrong with Dakota's ear -- I  called ALL of the familiar physicians and of course no one had any appointments-- Does it surprise you??? Kaiser need I say more. One lesson I have learned tho is how to navigate the system at Kaiser and it pains me to say this but the squeaky wheel gets the grease.  Trying to be diplomatic I acquiesced and agreed to a PA {physicians assistant} because after all "lets not make a mountain out of a mole hill" -- I just need someone to look in his ear and tell whats going on---

We go to the appointment and the PA decides he has a wax blockage and it needs to be "louvaged" this is where I dropped the ball ---I should have thought out the process before they started. Needless to say the nurse did not explain fully nor did she take the proper precautions to disrobe him and put him in a proper gown{not sure if it was because she thought Dakota would be better the way he was or she just did not want to do it} BUT she pulled out a gown which did not fit him and laid it over his lap before starting. She got maybe 3 "squirts " in his ear and it was like all hell broke loose-- What I had no realized was that his t-shirt was soaked and I know he absolutely hates wet clothes---{ I am not sure where the aversion to water has come from but we have several challenges with water-- he will not drink water in most circumstances -- another post altogether>}  Before you know it he was cussing and yelling I tried to calm him but the damage was done--there was no going back and at this point I knew the only option was to wrap it up and try another option .For this time it meant to get out of the Dr's. Office as soon and as efficiently as possible. I opened the door and there stood 3 nurses -- all like "deer in headlights" They had NO CLUE what to do. Then I realized that there was also a security officer who had been called--- THAT sent me over the edge-- I was really pissed off that I was in a medical facility that had been Dakotas provider since birth and they are so clueless that they had to call security--WTF? It angered me for many reasons but most of all these were medical professionals who SHOULD KNOW HOW TO HANDLE any patient-- whether its cardiac or diabetic or autistic.The PA was no where to be found and shuffled me off with a couple of scripts-- I knew the best thing was to get out as soon as possible but I was totally disappointed with the manner in which they handled the whole situation.

I understand that people need to protect themselves and there is an element of liability and we live in a litigious society BUT come on people -- This is a kid who has a disorder and needs as much compassion and tolerance as any one else. AND MEDICAL ASSISTANCE AS WELL. These kids become adults and are viewed as "a force to be reckoned with" but they have a disorder and all of us need to remember that. The other thing is even tho they can be aggressive or growl or barrel head thru a crowd for the most part they are pretty harmless-- they have a tendency to be self injurious rather that hurt others.Even when they get escalated their ability to actually hurt someone is very little -- most do not have the motor skills or muscle mass to do any damage-- In most cases even the meekest typical person can harm them more severely that they can harm the meek person-

I digress!
Back to the ear -- I thought it out and tried to figure out what to do and was convinced that I was NOT going to let this episode deter me from addressing Dakotas ear. I called after 2 days and no movement on the wax at home and insisted that if I did not get a doctor to look at it I would take him to the ER-- 5 minutes  after calling an appointment materialized--I started with a social story to prepare Dakota about going back to the doctor and them I armed myself   2 extra sets of underwear t shirts and socks  Plus I took not 1 but 2 rain ponchos -- I was going to keep that water from soaking his clothes
{Also another trick was I "louvaged his ear" in the shower so he was already wet and naked that worked OK -- he didn't like it but he tolerated it}
6 days passed and we got to the doctor and miracle of miracles the ear had cleared-- we didn't need to do anything more--- 

I was prepared to have him sedated if necessary but it turned out OK 
It was truly one of the most stressful situations I have gone thru-- I think because I have gone thru a couple of other situations where I took the "wait and see" suggestion of the doctor and it turned out to be detrimental to Dakotas long term health --So again as I say at the top of this BLOG  "GO with your GUT"  do not back down when you think differently than the "professional "  This is your child and YOU KNOW BETTER THAN ANYONE ELSE! Do Not Compromise because our kids  often times cannot speak for themselves so we have to do it for them!    

Hail Hail the "Gangs all here!"

Well Dakotas Birthday came off without a hitch--I think it was the stuff leading up to it that was the most daunting of tasks. Here's most of us hungry and waiting to be seated-- Oh yeah and I had to wait for the card with the 15% discount ha ha-- You know every little bit helps! We had a great time and such a great mix of people. Although we are all in our own worlds for the most part-- It was rewarding to see people whom I hope will be a support for Dakota thru his lifetime.  We spent quite a bit of time at dinner which ended with a "pile of cupcakes" and a candle from the staff:

Then we were on our way to the suite to finish off the evening with the grandest cake yet!

I believe a great time was had by all!

"Star Tours Relauched" was the theme and "Darth"was the{dark}Star--ha ha

We spent several days at the hotel and Dakota had a few kids overnight on his birthday and the next day it was an all out assault of Disneyland and California Adventure.By Midnight everyone was ready to chillax for the day!

Now I am broke for the next year but filled with happy memories and the knowledge that Dakota had the best birthday ever! I always tell him that "things" can go away or destroyed but the memories you have in your mind can never be taken from you .I hope he will always remember that I did everything I could to give him the memories that will last a life time. The only thing that matters is that he is happy and content!