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....

Your First Visit to My Blog......

I wanted to take a few paragraphs to re-introduce or update my purpose, my preface to my blog.

I started several years ago with a load of thoughts floating around in my head my entire purpose for writing was to accomplish one goal: If on single pierce of advise or information could/would help one other family my job was complete! I think I have done that .I have no intention of stopping and will continue to post..however I go thru rough patches where I have lots of things I want to write about yet struggle to get them posted and other times where I want to write yet feel the material is either not exactly what I want it to be or I can't co structure the post in an effective way...hence gaps.

 Whenever I am introducing someone to my blog I always explain it as just a mom and her observations...Iam not trying to convince someone my way is the best way, rather I ran into a situation...this is how I observed and assessed it and this is what I did about it....from that I hope that each person can take that and mold it into what works for them and their family...
There is also the persons who are reading for informational purposes teachers or other professional as well as a few friends or people who are affected by Autism somewhere in their family or community and simply read to hear another viewpoint.

My blog is simple and easy and not a professional blog...it has what I call short story status..a few paragraphs on one topic perhaps how two or more things come together. I also write or comment on things like meds,scripts, school districts, dealing with agencies and programs, recreational challenges and professionals.

There is a search box you can input words to find things that pertain to what you might want to read.I have about 400 posts over the course of several years. I make every effort not to repeat myself yet some topics are far more vast and complicated and sometimes draw on different points of view .

I haven't promoted my blog but use it as a signature for some posts on the Internet....I would love for it to generate conversation and even comments or a community of people who would learn from each other. I also feel it serves as an outlet for me to vent and has positive  effect on my frame of mind as it serves me to work out the kinks sometimes when I can't seem to find an answer

Most importantly I hope it serves to help anyone who might be involved with my son and helps with insight on our daily lives, struggles and challenges. Every individual is different and has different needs;the common denominator is autism. I only try to focus on our journey and hope somehow it is of use to someone else...I hope anyone who views this blog will please feel free to tell others
about it as I feel it has value to those of us who walk this path.

Treat Me As An Individual

This is a subject that is very important ..yet quiet touchy.....There have been many discussion and posts on Facebook about how special needs kids just want to be included..to be one of the kids....etc.

This has many facets and opinions on how it should occur. As our "special kids" go thru school there are suggestions, classes and activities to give our kids experience and opportunity to "blend"in the community. Mostly thru the special Ed classes with outings to places like the dollar store or a fast food restaurant,a trip to a fair or perhaps even a movie...HOWEVER; it is not done with typical children for the most part. It is a part of the daily or weekly schedule of the classroom. Ok : I'm happy that our kids are getting exposure and practical experience and hopefully some enjoyment not to mention visability in the community. The biggest issue I have is this JUDGEMENT. We all have seen it and we all have thought it and whether we are parents of challenged kids or mere onlookers of the community : you pull up to a light and you notice a whole "passel of "chicks" with a few adults and it doesn't take but a split second to realize these are not typical kids. Nothing wrong with that BUT there is an immediate judgement. My point is this if the idea is to get these kids to blend in and then you send them out in a clan not with any other kids how can that be (I hate this word) NORMAL? 

I understand my man/child is not typical and is challenged and I love all the kids he has had as classmates, "friends"or aqaintances..I also understand that a certain portion of his day or activities should include being with similar kids. The problem is that's all any school, work program or social program offers. I disagree. I do not want to offend any one and I certainly don't want others who have special needs children to think that my child is any better than theirs, my point is that these kids need to be treated as individuals and given opportunity to act and be viewed in a more natural setting. They need to be included as an individual for a birthday party or a bowling trip, to amusement park or a day at the beach! I'll concede that the disability can be challenging , daunting  and perhaps overwhelming for a typical person to undertake yet I believe it is possible . The key is to develop relationships that are constant and regular so the comfort level is raised to a point where my kid is "manageable"for someone who may not be sure of themselves.
Again I get it a behavior can scare anyone and especially not knowing how to deal or handle it but the only way someone can learn is to,be around enough to experience it .

As our kids get older and leave school most of their social exposure goes down the tubes. They are not one to talk on the phone or have the need to bond with people and they become more and more isolated.Our job as parents is to everything we can to nurture relationships for our kids...yet there comes a time when you say I gotta cut the apron strings....I am quite sure my kid would love to do something like a movie without his Mom.

There are programs that are specifically for handicapped individuals. In many of the high schools there is what they call a Best Buddy Program which pairs typical kids with special needs for things like assemblies and pep rallies..or special occassions ...there is NO MODEL for after school ends. I've even checked into the Big Brothers and Big Sisters and they don't want typical kids that are over 17. 

I guess what this post is about is another frustration I can't seem to solve. Young Adults are busy working , going to school and certainly worried about their appearance and really don't have much care about being "seen"with someone who might compromise their street cred. Sure you can and will have access to vendors who can be paid for being a coach or chaperone but again that's not really solving the problem, not to mention not all of us have the ability to lay out money for that kind of support.it just seems that this should be simpler than it is. 

Many years ago a mom and mentor of mine said that if you find someone who is interested in your child and wants to spend time with them you do everything in your power to nurture that relationship;if you have to drive them, buy pizza , pay for movies make the phone calls to keep in touch..whatever it takes because they are rare. I can agree

All I can conclude is that our kids want to be a part of a "normal"life and treated as an individual , just like everyone else. If you find your self with an hour and you want to do something rewarding go find that kid in your neighborhood and take him/her for an Ice Cream or a bike ride..maybe to the local fishing hole...the parents would probably be thrilled but the man/child will be the one to benefit whether he can tell you or not! 

Water Under The Bridge

I have often wondered if having a Dakota a little later in life was a trigger or causation for Autism. I was healthy, active and emotionally ready and truthfully think that my age was an advantage.
I have actually written about the birth and delivery and feel that the extended labor and trauma was the starting piont for the diagnosis however who's to say that it didn't start at inception. No One will really know and for that matter until they find the cause no one really really ever know about their child and why autism came to "live" at their house in their child! So there comes a time when you just have to make peace with it; consider its a question that has no answer (at this time) and say "it's water under the bridge can't go back"

All of us at one time or another play the "what if....."scenario. Most the time we never arrive at a decisive answer. I have come to the 
opinion that it's a waste of time, it causes a lot of hurt and heartache  
and doesn't solve any problem. It's not just in the special needs community either .....I have seen many people ruin their lives over unresolved "what ifs". Somehow you gotta say there's no definitive answer or resolution AND move on . If you don't, the rest of your life will be stuck.

Its not easy to do and we all have moments of remorse,re-examination and doubt. We have to pull ourselves up by the bootstraps and get on with life! How will our lives or the lives of
others that connect with us benefit from the mire of doubt and 
regret.

The one thing about Autism is it never lets you "sleep" from the moment of the diagnosis you hit the road running. Perhaps because there is no "pat"answer or maybe just because it's what you need to do for your kid and family. You will always search, investigate or read to see if this particular "thing"might be the one "thing" that can make life better. Will this work on my kid? Did others benefit? 
Where can I get it? Is someone around here doing it AND having success?

I started this post with the intent to talk about age affecting autism but think I arrived at a different topic purely by accident. Guess my point is try not to beat yourself up on the "what ifs of life" because most of the time there is no answer or solution. Just try to embrace the situation, do the best your can,offer no apology for how you do things and most importantly TAKE NO PRISONERS...DO IT YOUR WAY! 

A Few Thoughts on Medicine

Just had a blow out behavior this morning and it brought some observations on medicine and drugs for Autism as well as general "scripts" most all of us take for the flu or a cold...or other maladies. Each individual regardless of diagnosis has their own body chemistry and makeup. Although many of us use the same drugs or medications and usually don't have side effects or reactions..it not always that way. As has been stated a millions times Autism is a spectrum disorder each and every Autistic individual has unique traits and abilities as well as reactions to meds.
That being said Professionals will inherently put all of us in the same box because that's just how they are trained..If most people are ok with with a med why won't it work the same on our kids? many time they can be right and far be it from me to question a doc for the most part ..after all they have th training but what I possess is the 24/7 365 experience of my observations and assessment.

So here is the point of this post....this morning Dakota had a pretty good "blow out" didn't last a really long time but it was a GOOD ONE : screaming, crying, yelling at the TV, yanking and pulling on himself and me....now I have been attempting to reduce his dose of Abilify for many reasons but mostly because I just hate that he needs chemicals in his body everyday to help him cope with behaviors that come at random, unpredictably but that's the nature of the beast since you don't know 

exactly when; then the meds become "preventative"....never the less.....last night he was coughing so I gave him prescription cough syrup WITH codeine. I cannot help but think that the codeine had something to do with him blowing up this morning. Can I prove it no, do I bet it true yes. Now the question remains do I give it to him again and wait for a reoccurrence? Well on one hand I should want to know definitatively that it was a reaction to the drug on the other hand do I want him or myself to experience another meltdown like this morning"HELL NO"......,.....talk about being between a rock and a hard place. Probably the doctor would insist it was unrelated, this is when I say walk a mile in my moccasins then tell me the same thing.

One last thought about this pharmaceutical stuff and I will "tap out" I do believe many years ago I posted something similar, I think it bears repeating:
Dakota was prescribed Risperidol. It was a great and effective drug for him and we had very little problem with it and its effectiveness. He initially started the drug at a tender age ..the start of puberty  whe he was barely 5 feet tall and less than 100 pounds..the initial doseage was .25 mgs at AM and PM...as he grew and put on more weight the doctors were insistent he needed a higher dose. They kept wanting to increase it and I kept resisting. Finally I started to up the dose and I saw escalation in behavior. I put my foot down and told them it was gonna stay at 1 full mg or less a day because that was all he needed. They argued that it wouldnt be effective for his size and growth....I stuck to my guns and it turned out to be the right decision for him. I have since changed him not because I didn't think the med was effective, but simply because he had been taking it for so many years that I decided his body needed a change and/or rest. At least from that medication. He is currently taking Abilify and again I have reduced the dose and seem to have some success...

• I guess what the point of this excerpt is, that it reaffirms you have to listen to your own gut and not let "professionals"convince you to do something you feel is not the right fit for your child, for your family or for you....DO NOT BE INTIMDATED by a certificate or degree on the wall, they are human and do not have a crystal ball and they certainly don't live in your house and experience what you do....use your powers of observation and love for your child big or small to advocate when you feel something is off kilter.

Another New Year

As usual....I did not post as often as I expected ....
It has been an usually difficult past year...mostly for myself but life in general. My purpose for,this blog is specifically dealing with Autism and related stories, experiences and subjects however occasionally I veer of course and need to be much more focused and proactive...I hope that this year will bring good times and a renewed perspective on many aspects on life including Autism.

I really want to encourage those of you living with autism to take a deep breath and really appreciate the little things in life...like the smell of rain or freshly cut grass, perhaps how blue the sky is or the reflections in a puddle of water....often times when we have just reached overload and we think we have hit our limit its those small things that only take a minute or two, that allow us to not commit to the "funny farm"! 
For those of you who don't live with this "crap" disorder my encouragement comes with a request to learn a bit more about autism, help a parent or caregiver in some small way.(like take their trash can in after trash has gone or even a friendly hello or phone call for a few minutes to let them know they are human), or simply be less "ready" to draw a conclusion about an individual that might be acting strangely because with percentages at 1in50 births now yielding an autistic diagnosis..it is very probable that you witness more incidents than you realize.

One example that comes to mind immediately is the other day Dak and I went to the pharmacy to pick up a couple of scripts; he has been sick since the day after Christmas...mind you this is a kid who has no motor skill to blow his nose or spit...much less have the typical ability to cover his mouth when he coughs. So its Kaiser and the frickin line to pick up scripts is worse than a line at Disneyland and it's filled with plenty of sick people many more sick than Dakota. He coughs and of course I try to remind him please cover your mouth....AND HERE COME ALL THE DIRTY LOOKS. One woman standing behind us heard me reminding him and she chimes in with "oh you can cough into your elbow". Look I understand we live in a world of Germ-o-phobes . People are freaked out about their personal space and I do not believe the lady was being necessarily rude, I just think she thought she was suggesting something that might work but without assessing the situation properly.Then there was another man who I can't seem to get a complete read on even now a couple of days later....I'm not sure if he was just sizing up Dakota or judging him but I felt his eyes on us the entire time we were in line. Ok so again I veer off topic; My point is just be aware befor passing an opinion.

I have great aspirations to share new stories and observations this upcoming New Year...
Many often develop after I read some of the Autism boards online....Infact most who have kids much younger than Dakota, who are struggling with things that we have already been thru.Although the solution may never be the same, often just being able to tell someone what you went thru and how you worked it out for your family will give them the creative sense to find the right "fix"!