2 years???? Trying something new.

wow I can't believe it's been 2 years since posting.....well so much has happened but the most important thing to repost is I have gone ahead and consulted a Doctor and had Dakota certificated  for    MMJ...Medical Marijuana...since the begining of the year I have been using primarily CBD oil and some THC oil only for meltdowns....The CBD is NOT THE drug that gets you "high" and I've been using a very small amount daily as a maintenance ....unfortunately I have not been successful in completely eliminating PHARMA...he still takes a small dose of abilify...(2.5 mgs) and he may be one that won't be able to be completely free of phrama ...however the CBD may not be a "Silver Bullet"I can definitely say that it has been instrumental in helping him cope with daily stress and structure and less meltdowns...it is controversial and I don't care what others think I only care to help my kid to have the best quality of life possible.
I will start back up posting...my home computer is down and the house is in disarray ...getting some improvements ...so hope to get back into a routine of posting and saying more of what I have observed and experienced...
Til then......

Today I cried....today he cried

Two months have passed since a post....been busy and have had some pretty good days.....But today wasn't one of those days..........

As I have written weekends have been a stressful time and I am getting to the point where I just want to skip right over them because I almost know there is going to be a behavior befor it even happens. I have gone over it in my head some any times I'm sick of even thinking about it...I have tried and tried....power of suggestion ("Were gonna have a good weekend")...I have tried filling his day up with  almost driving half of Southern California, I have tried to suggest new and different things, I have tried going back to old activities, I have tried diversion tactics I have just frickin tried anything my brain can conceive and it's just not working and I'm just drained......

I put aside the guilt of Dakota being born with the challenges he has, you can beat yourself to death with the "what ifs"...and that will not change anything. Its water under the bridge you cannot reverse it so anything I have even thought of that might be my fault doesn't matter at this point because it is what it is. You educate yourself , you advocate for him , you do the best you can and you continue even when school stops, to teach and educate him so he may have a better quality of life and then you have a day like today or like so many in the past...and it ruptures all those thoughts or feelings that you are OK with things and you have made peace with it . You have to try to make peace with it or you will drown AND you will never be able to be supportive for your child...

BUT..........when you experience a meltdown whether severe intense ones or rather mild ones as a mother or should I say a parent?its very hard to suppress the feeling that some how your child is miserable, depressed, crying, upset, out of control because YOU brought him into this world and now he has to endure these terrible episodes that he has no control over. When he yells and screams, cries out with agony in his voice, grabs your hand and wants you to hit him, or he grabs his ears and pulls on them, grabs himself and stomps like a Sumo wrestler or the worst which is swats and swings at you from anger that builds up like steam in a kettle and you KNOW, he doesn't mean it and doesn't have an ability to stop himself , it's quite devastating. Sometimes it's not very long or intense and other times it seems like it last forever and it always seems like the worse one you ever seen.

When it starts to quell the emotional takes over . For the most part being quiet and ignoring as much as you can will help to expedite the end. Then there are ones that will seem to be over yet it only takes the wrong look or word and they crop up like a twister....there are others that are mild but always require a period of time to "rally" quite often there will be crying and down right sobbing and that's when you are almost ashamed you made a choice to bring them into this world...you wonder why ? You feel so bad for him all you want to do is get rid of he pain he suffers yet you do not have that ability and it kills you....

Several hours since the storm blew threw and he is peacefully sleeping....the darkness of the night brings my sadness and remorse ..for what I'm not exactly sure.........I'm sad he has to endure, I'm sad he has to experience this, I'm sad he doesn't have the ability to avoid it, I'm sad I can't be a better parent mostly I'm sad I can wish it away.....

Today He cried.................tonight I cried.............

Hopefully tomorrow will be better!

Weekend Hell prevails!

Did you notice it has been all of June and July and No Posts???
For many reasons yet none of them good enough to accommodate a true bloggers intent....I write specifically for the possibility of even one person benefitting from one piece of information in one of my posts....however I have been motivated often to write when something profound or something confounds me! The alternative for blogging is for those who don't know anything about autism may learn even one thing that might help them should they ever encounter an autistic individual (one may not even know intially that they are hopefully reading this blog they will have a better awareness)

Yes it has been 2 months and many times I sat down to post then fell asleep or got distracted but that's life in general and certainly is life living with Autism. Referring back to the last it's befor my "hiatus" "Weekend Hell"still prevails .....there have been a couple of weekends that were better than others ; TODAY......seems to be the start of another challenging one. Besides our somewhat regular routine we also had a special trip to a Family reunion that took us away for 10 days...yep ..he made it for 10 days with very little problem..that being said I was on my toes and did several things to accomdate his needs which in turn produced "good days" . We were in a recreational  "heaven" lots of activity but he was just as happy to see what TV he could find...I also did a little homework to help accomdate some of his food routines and although we didn't fulfill all of them ..we managed and he did very well....only had one real meltdown and it was in his own room, out of the public eye and for the most part reasonable. All and all the trip was very successful .

NOW TODAY.....he slept better and longer in his own bed ....got up and seemed to be moving thru the day ok. We went to his In-N-Out came home to relax and somewhere there was a disconnect. I made the comment that I have had enough driving yesterday that going out was t going to happen today...walked out of the room came back to find him crying profusely.....it tears my heart in half everytime I see this. More Than That It bothers me that he can't tell me why or what caused him to cry and the more I press him the more elevated his behavior comes. I saddens me. I'm not sure if it's just the Weekend Hell or it is vacation withdrawals or what the hell it is but right now it stinks....
I want him to come home with memories of a fun time spent with Mom and extended family. Not to come home to sadness and disparity.....I only wish he could explain what makes him sad...
ANOTHER STINKING THING ABOUT AUTISM THAT I HATE,

Well I have a few more stories and will try to be more diligent about writing . For now stuck in Weekend Hell....and looking toss at satan!!!!

Weekend Hell

Weekend Hell.......hmmmmmmm. After the better part of 29 years I think to myself the best I can say is "I'm conditioned" . I try to anticipate and be prepared. Be keenly aware of signs when something is gonna blow.watch for triggers and do what I can to avoid or intercept when I sense a meltdown may occur.

weekend Hell is a special kind of trigger that can be anticipated yet rarely avoided. I would liken it to withdrawals of an addiction...EVERY SATURDAY &SUNDAY.....and very little can be done to get around it.

Since puberty OCD kinda took the front seat to autism; Dakotas need for certain structure,scheduling and routine are key to a smooth operation for the day. I have spoken to his food routine in previous posts but the other component is TV and the programs, which occur during the week days..NOT THE WEEKENDS..Hence the problem. Throughout the day he has a whole day filled with preferential programs and there is some wiggle room with planning but for the most part if there are no appointments or special need to be away he is ingrained in the daily routine.  When the weekend comes Holy hell breaks out usually regardless of any planning or anticipation on my part.THIS IS INCREDIBLY FRUSTRATING. some weekends are better than others but I can almost bet the farm on at least 3-5 behaviors over the course of 2 days and often times it is that many on each day........

For the most part I can sense when the "storm is a brewin". He has "tells" his eyes get very dark, he will "purse"his tongue between his lips, he will fist his hands and shake them, then comes the growling, the screaming, the aggression, the cussing and grabbing himself and grabbing me to make me hit him....I try to remain calm, I try to not engage which sometimes will help,to de-escalate faster, for the most part you have to ride it out. I must say the most difficult thing about the "tantrum"is the helplessness as a parent you feel because you cannot do anything to help him through it. To see your child wring their hands and cry alligator tears scream and act out uncontrollably, tears at your heart.Although Dakota is verbal asking him what I can do , or what made him mad will heighten the meltdown.For the most part I try with my best effort to calmly talk to him and tell him I Love him and I know he has little control over these episodes and I am here and not leaving....often times he does not want me to talk. And I have found that the less you bring attention to the episode quicker it seems to go away. There are many though that will quell and rise again and perhaps again.....it's like it's under the surface and it will re-erupt with any little trigger.

Many have brought issue with me about giving in to the behavior. saying that I'm reinforcing it by "accommodating "it. My retort "walk a mile in my moccasins; then you have a say. For our life, our family, our situation my discovery is when you are willing to let go and "accommodate"certain OCD "things" that for the most part it can make the rest of the day manageable even pleasant. Perhaps not so much for Weekend Hell..but other instances.

This has been a lingering behavior I have not found a solution for YET. I AM CONSIDERING CHANGING UP THE ROUTINE DRASTICALLY . not sure how successful I will be but something's gotta give. right now I'm doing all I can to get him out on the weekends yet the irony is when he is ready to "blow"you don't want him or you to be in a public forum. Right now there are no good answers because the obvious ones are not working.He had essentially refused to engage in very few activities like bowling, or hiking or going to park or museum. I will continue to explore possibilities but for now Weekend Hell is alive and living in our home.......

All over a $1.84....,Oh how the day could have been different!

Wow ....I am almost unable to compose the thoughts going thru my brain right now....It's been a rough day, or should I say a tough couple of weekends??? Why I did, what I did today is beyond my own thought process! To think that $1.84 could make the difference between a good day and Let's say a challenging day.
So here's the scenario....Dakota is extremely addicted to TV and the schedule of TVShows during the week...try as I might to get him to change things up, get him away from the TV all together or even encourage him to watch a different station he is steadfast in his commitment to his routine. That being said; weekends are hell for him...he just doesn't adjust to the fact that his TV schedule goes to crap over the weekends and again try as I might, to introduce him to alternative options...(the park, bowling, the mall, visiting a Friends...) it's an epic fail most of the time...

Most recently the past 2 or 3 weekends have been much more intense and I haven't been able to identify the trigger...it's seems behaviors are a plenty right now and much more present than they have been in probably, oh I don't know, the better part of a year???? His behaviors are so unpredictable and seem to come in clusters...ANYWAY today was no exception the frustration was apparent from The onset of the day...he was up rather early and irritated right off the get down. So trying to avert a full meltdown I suggested a short ride befor going to In-N-Out...and he seemed agreeable. When we were finished driving I approached In-N-0ut and said I was going to Tommys to get the thick fries....and did he want Tommys fries instead....he said YES,I was surprised but thought OK maybe changes were happening; long story short...we get home , I get the burgers out put the Tommys fries in place of the In-N-Out fries and World War III broke out................he took one look at the different fries and he went bolistic!!!! Screaming , yelling , slapping himself, grabbing himself, crying hysterically. I stood there dumb founded for a minute and then it's came to me how stupid I was.

WHY after all these years, with everything I know and have been through would I let something so simple as an order of fries jack up today? somewhere I lost my mind. How could I be so stupid to not realize that with the weekend thing happening , the irritated behavior,and the already tension in the air that I would even consider CHANGING ONE IOTA of structure today???how did I allow myself to slip on such a simple concept "whatever you do DO NOT CHANGE schedule or routine when you have already a kid in distress???" Boy did I feel stupid about that one. you would think after all,these years it would be imbedded into my head.

Not sure what "lesson"this has for anyone else. The simple answer is when You want to avoid meltdowns a basic rule is DO NOT CHANGE anything that is routine. Yo think that a large part of today's fiasco coulda or woulda been avoided for $1.84 bag of fries

Respite.....ahhhhh Respite

Ahhhh respite .....didn't even know the word befor entering the world of Autism....
It's a provision for those of us who are caretakers to have someone else assume the responsibility of caring for our "individual "for a couple of hours to allow us to "feel like a human again" "to take some time to go to lunch with a friend or a movie"and know our child is cared for and we can relax!
Yeah..right! now do not misunderstand my sarcasm, it is one of those things that sounds good in theory and somehow gets lost in translation.

For the most part in California specifically our Regional Centers approve and fund 30 hours a month....(usually no more unless a rare case) allowing you to have "hired help" (so you can go to dinner with your hubby or do the above mentioned activities ......) the problem lies with the mechanics ...finding someone who not only is willing to come into your home but accept the conditions of what Autism SOMETIMES brings...that's not to say there are not skilled people out there it is to say they are difficult to find and usually require or at least want more than the 10 dollars an hour a "baby sister"would get for watching the neighbors kids. The agencies have staff yet many are specialized or simply won't take autistic clients...AND once you manage to find someone they may have other clients so it has fit their schedule it can't just be like calling someone up and asking if they can come on the spur of the moment.

The other compnent is the actual act of respite..I'm not saying everyone does this but I find that more than 75% of my respite is running errands, going to doctors appts. Shopping or doing all the things that are either impossible to difficult to do when your child is in tow...

There's no set formula to respite and no one really dictates many rules other than it is to be performed in the home ...which can cause some challenge... Mostly because anyone who is trying to entertain and care for any Individual may want to take a stroll to the park or do an activity outside four walls...no so much for the autistic people but sometimes can or could be an option...

Guess my whole reflection on this stems from my ability to actually go out, meet a friend and actually sit in a restaurant for the first time in YEARS....MY SON HAD A MELTDOWN several years ago in a Carrows and that pretty much ended our ability to go out to eat...there are a few exceptions mostly when we are "vacationing or not in our home town"but for the most part it just doesn't happen.

Everyone needs a lil respite whether you care for a a challenged individual or not...each person chooses what to do...but I can assure you many of us are thrilled to just get a break NOT BECAUSE we don't love our kids and completely accept the responsibility but merely to have a minute or two when YOUR BRAIN isnt working over time second guessing AUTISM....