The "Narrative page" on an IEP

Recently had a discussion with a mom about services provided on an IEP and her discovery that the district mysteriously moved the directive from Direct Services to Accommodations on the IEP. Of course we would all like to give whoever the person is enough credit that this was an honest mistake or not intentional; but as we all know it doesn't seem that anything the district does is an honest mistake, it is usually calculated and done with intent.

Regardless , I was explaining that there is and always has been a Narrative Page in every IEP and this is where your "gold" is. Meaning that you have the ability to put any special instructions "free form" to aid your child and his education. This particular Mom didn't recall seeing a Narrative Page and we both discussed the IEP process and how the electronic recording of an IEP has kinda "masked" this option{the Narrative Page}.

I rechecked with CASE Special Education Rights and Responsibilities http://www.caseadvocacy.org/handbook.html and there are several references to the Narrative Page especially in Chapter 5 which is for Related Services---

Basically the Narrative page is the "catch all" for any thing and everything YOU want to include in the IEP. Use it and make sure they {the District} knows you know about it and what you expect from it--- It can be one of the strongest tools you have for your child. It can incorporate the fine tuning you need in the classroom and the campus.

Remember the "Narrative Page" it can be your best friend and strongest ally in the IEP! 

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!

Birthday Celebration--

Soon we will be off to celebrate Dakotas birthday and I am about to go nuts!The passed 3 days have been crazy-- trying to line up logisitcs and make sure he has a great time--

I have been trying to get a few of the people who he knows to attend a dinner and a couple of them are "transportartion challenged" so YEP  I am taking charge to get them there--
Its for Dakota   Its the one day of the year that he actually expresses the want or need to have certain people around him. Soooooooooooooooooooo its my job to make sure that happens. 

I will post more when we get back!
Its nice to post something positive for a change!

Facebook Page

OK so I decided to start a FaceBook page under "Daks Open Door" 
I figure that it is a way to get connected with more people. I am just trying to cast a "wider net" and get more people in the conversation. I hope this will be a postive move--  

Barn Burner--

Today must have been a day that was pulled out of the Playbook from Hell. Saturdays have been difficult to say the least for several years now-- I have my theories about that; which I believe revolves around the TV schedule or lack thereof  and transitional days where they are different than the weekdays. All of that being said;  This day has been a Barn Burner--
An emotional Roller Coaster; a Day from Hell.

Between not having the ability to get anything done- and Dakota's unstable emotions, it just makes me wonder What am I doing here? What is my purpose and why do any of us deserve to have these challenges ?

I know that people try to be compassionate and say things like "Oh God doesn't give you more than you can handle" but honestly that's bull PUCKY.
That is why people end up in institutions. or as alcoholics or just disappear of the face of the earth SIMPLY BECAUSE THEY CANNOT HANDLE WHAT WAS GIVEN THEM.

Every day I thank God I have the strength to persevere and not give up but days like this really challenge me. I know I am not made of the same "cloth" most other are but for these days is a blessing . Hopefully I will have enough water to extinguish this Barn Burner

AND TOMORROW WILL BRING A BETTER DAY!

Drowning------

I am quite sure I have touched on this topic before and probably more than once. However I feel it is a legitimate subject that needs attention because it pertains more to the caregivers. Although there is no given solution we have to be diligent to remind ourselves of the bigger picture and what we might be feeling is in the moment and "This too shall pass".

Recent months have brought more than usual frustration and overwhelming feelings for me-- perhaps because there are additional issues that need to be addressed over and above caring and providing for Dakota. The biggest problem that I am grappling with is that this "drowning  feeling" has been much more prominent. And I hate it.

Those that know me; know that, for the most part not much "ruffles my feathers" and I am a pretty "live by the seat of my pants " girl. Autism has brought more routine and predictability but I have tried to also incorporate change for the simple reason that we never know what life will throw at us. Our kids need to know that . Our kids need to be conditioned to accepting some irregularities even their own world. In fact they should be encouraged to "function" out of the box simply because there will be moments or days that do not go of as planned. We all know what repercussions that may bring in the form of behavior or God knows what!  

Having said that, SOME will be the first to say that I yield to Dakota to a fault. That I allow him to dictate most situations -- That's OK -- they can have their opinions and they may not necessarily be wrong. What I know is that the way I live life is that, nothing is so damn important that by pushing an agenda  on him which results in behaviors is worth it. Its just not that damn dire of an emergency that I need to make him do something that he will in turn get flustered agitated and react. I go back to the thought that he already has what I call "static" in his head-- {Call it whatever you want  Boogie Men, crossed wires, poor perception doesn't matter} So why would I aggravate the condition? It would be like taking someone who has skin cancer to the beach and having them sit out for 8 hours in the blazing sun without any protection-- Does that make sense?  

All of that being said I do admit that it has been "getting to me " much more.I am finding that simple things like trying to go to a doctors appointment is more of a challenge  or even going to the store for that matter. I know there comes a time when you just have to do it or you have reserved a time to execute something,Yet I find myself incredibly torn by the thought process of weighing the pros and cons of making him participate in something he clearly is protesting. It is making me stressed out to even write about it.

There are extenuating circumstances that factor in as I have only myself to blame. There is literally no other family involvement other than the time he spends with his dad, he is not in any programs as I cannot find appropriate placement, and the few friends he has either have challenges themselves or are not ready for a completely independent experience with Dakota. So basically he is with me for the better part of 24/7. Hence the drowning.

The feeling that I am out in this body of water and I am up to my mouth barely keeping my head above water, treading for my life and NOBODIES COMING. Its not an unusual feeling as I have been a pretty independent person all my life and have only depended on myself Its just that it seems to have intensified in recent months.

The reason I decided to post about this is because I am quite sure that I am not alone and many feel exactly the same way-- Do I have a solution?  I think again each person has to figure out what works for them and their family. Getting back to that "seat of the pants " attitude  sometimes just waiting It out and letting it pass is a great idea. Other times it takes hard work and dedication to change. What I do know is that I have to be more proactive to get support and back up. And I know that Dakota needs to be exposed to alternatives that he may not be used to --- How I am going to do that is another bump.
For now I just have to keep treading water and hope that I don't drown!   

That One Thing

Recently I was discussing with another Mom her need for Yoga and that she had specific reasons why she liked to go to certain Yoga programs or locations-- She was kinda apologizing for her need to go to specific locations because she just liked them better---
I told her that if that is the one thing that keeps her sane or focused  or centered there is no need to apologize --
This life with Autism affects every member of the family and most of the time in different ways. But; I have discovered that although this is a 24/7 365  job, you have to find a way to either release some of the pent up frustration or a diversion that feels like a guilty pleasure to maintain and even keel with your child.

Look, whether you have a typical child or one that is challenged whether you are young or older when you have your kids there will always be days or at least moments when you wonder what the hell you were thinking having a child-- Or  at least suffer from a pang of selfishness when you want to shove it all and take off for a even an hour just to get away and fool yourself that your life is something made up in your head and you really are not living the life that has unfolded in front of you--- 

I decided a long time ago that I had to have at least ONE THING as a guilty pleasure. A way to indulge myself without compromising the care of my child. A way to pamper myself so I feel like a little piece of me still remains and my total existence is not all for Autism..

For me it is my soap opera {which is now going off the air--OH I digress!} But this is how I do it-- for that one hour out of the day I AM CLOSED FOR BUSINESS--- No phone calls; no appointments; no conversations about Autism; --- This is my lunch hour and if I just sit and veg out then so be it but 1 hour out of 24 is MINE! People laugh and sure there are always exceptions -- Autism doesn't have a schedule but I tape it everyday and somehow I find time to indulge ---

Now for others maybe its getting up early and sitting quietly before the day starts in the household or its a workout -- walk with the dog--- a ball game  maybe its just messing around in the garden or the garage---even an hour of the computer --- Theres a million places and things but all I say is find that ONE THING  and  mark your territory!  Everyone benefits .

Making Decisions

Recently there was a mom who was administering B-12 shots to her son and they were causing extreme pain -- She had the "nerve" to question the pharmacy that was mixing them for her and got a lot of grief over her questions---As it turns out she finally was able to obtain these same B-12 shots from another provider and they were not causing any of the pain the previous ones were.
This is a perfect example of why you should never apologize for ANYTHING YOU QUESTION- It is another example of what I mean by  GO WITH YOUR GUT!
Certain situations just do not feel right and when you sense that, you need to act on your suspicions--and again do not apologize.

Update on Meds

Well we are a month into the new medicaation and it seems to be working-- alhthough technically Dakota has to take more MGS of Abilify than the Risperidol -- He is still on a minimal dose and it seems to be effective--I have seen a couple of "blow-outs"  but not enough to warrant a change for now--or an increase either--
Dakota has dropped a few pounds but that is not important to me, my bigger purpose is the simple fact that his body has benn using the same drug for such an extended time. He needed to try something different to allow his body a change.
So Far So Good!

HAPPY 4TH OF JULY

Here's hoping you all have a GREAT 4TH OF JULY!

Ok -Last post was a bit much for most.

So its been weeks since I wrote and I can tell from the response that most think I am really out of my tree---That's OK  After you live with this "crap" for 24 years your minds has gone thru just about every scenario imaginable to man!

 It gets back to wanting the best for our kids just like every one wants the best for their kids. They are human first and may people just don't realize that -- The behaviors are so big that many just cannot get over the inability of our kids to "reign it in"  AND to that I say get over yourselves. We all have warts, we all have imperfections but as "typical" people we have many ways to mask our shortcomings-- In a way our kids are much more pure or raw--- they don't care if some see their flaws---We as their parents have to support our child and educate others about it!

You know everyone has "something" every Family has some issue--It can be dysfunction to cancer or anything in between . Thats not to dismiss what other people go through but my mission is to reach and tell ANYONE  with on the scope of my voice what I can about my son and the Autism community in general. It is so incredibly important that our kids learn how to be a part of the community BUT it is also imperative that the community be educated and accepting of these kids like any other "faction" of society that may be different.

If I ever get a wide following it will be one of my priorities to preach acceptance and tolerance. These kids have value and deserve their place.
Spread the word and educate when you have an opportunity.and if you don't feel comfortable doing that then send them to my Blog! hee hee 

Could Autism be a part of evolution?

Someone recently posted a question what do you think causes Autism--- I have over thought this but I posted this about Malathion:
IMHO I have come to the conclusion that AUTISM is biological but there are environmental triggers--- My personal take is Malathion was to blame for my sons Autism-- that may not be the case for others--- Before I had my son, everyone I knew was using Malathion for there gardens and houseplants ; hell even the state of California and Massachusetts sprayed over cities to eradicate mosquitos-- they told you to cover you cars because it would eat the paint but never worried about us breathing it-- Then later on I found out it was actually developed in Natzi Germany as a nerve gas in the concentration camps--OMG WTF???????

It makes perfect sense to me; a chemical we were told was safe for gardens and breathing turns out to be a chemical that attacks the NEVOUS SYSTEM OF THE PESTS YOU ARE TRYING TO GET RID OF--{and is it not the nevous system on our kids that is affected the most?}
years later we have a huge increase of numbers in Autism cases directly in correspondence with the time this crap was released into the air!
OK I will step off my soap box

All of that being said the whether its vaccines, allergies or common chemicals there are just some of us that can tolerate it and other who cant-- and those are the ones who develop Autism.
I have another theory but it is so far fetched that I will keep it to myself -- {It goes along the line of evolution of our society}
I don't want people to think I am really off my rocker-- I have "over thought" this topic. Sometimes I convince myself I am crazy.

Then a mom wrote me and asked if I would tell her about my theory so I gave in --and wrote this:
my theory--
I my mind; I can see how Autism could be an evolutionary reaction to our society--Bear with me-- There has been many animals and species of animals that have changed and adapted as their environment changes. Some animals coats develop spots or colors to camouflage them in the wild, birds get larger wings or eyes that work better in the dark depending on their needs to survive. Even early man had wider and broader feet and a prominent upper brow all to deal with the elements of winter-to protect him from the snow. Our society has evolved from human beings seeking social interaction and involvement to isolation and mechanization.At one point people lived with family units that included aunts and uncles, grandparents and extended family. Often times because they had farms and needs for the people to support the household. Also many ethnicities have common practice among their families to live and support the family as a whole. America, in particular, since the 50's we have "progressed " by fragmenting the family and people in general. Business and corporations had neighborhood offices so you worked and lived in the same community now every thing is centralized in to one big office --forcing many to commute or even relocate. When you call anywhere any more you get automated systems that do not have a live body anywhere to talk too, Banking has resulted into ATMS and online services so you dont need to see a teller much less even go to the bank anymore-- hell you can even order groceries on the Internet and have them delivered. Everyone lives in their own POD they go to work, they come, home they isolate themselves --NO body even knows their neighbors. We are slowly evolving into a NON society--- and we wonder why our Autistic kids are missing the "Social chip"??? My theory, as far fetched as it seems, is that out kids are the 'Proto type of the future'. That some how human beings are evolving into a different creature than 100 years ago and our kids are actually the trend setters---THAT IS NOT TO SAY THAT THEY ARE DOING THIS conscientiously; what I am saying is that I see that our kids could be what all of us will eventually become--- that our society is shutting down we are withdrawing and social interaction will eventually become a thing of the past.

Ok that's is a stripped down version and it is easier when you are having a conversation about this topic but again I know that I am probably one of a few that may have even gone this far -- BUT I own this theory and I believe it could be somewhat similar to what is actually an explanation as to why Autism is exploding and not diminishing---

Its out there and probaly not a popular idea but I said it and I own it--I will leave it at that

Things seem better--

Well it seems like it has been ages since my last post and I am not sure I have any better answers than I did weeks ago! HMMMMMMMMM

I will say that the med change does appear to be effective and working similar to the previous medication. I have notice a few changes remarkably in appetite and sleep patterns but for the most part have not seen the intense aggression and overwhelming out of control static I know must have flowed thru his brain--- It makes me so sad and I hurt so intensely when I see Dakota in that state. I know it is a parental reaction and particularly an "Mother Thing" BUT it kills me to see him in so much turmoil and pain. 

I had hoped to completely remove him from the meds. That just doesn't seem possible yet. Perhaps in the future and I will try again. For now it is so important for doors to open for him that I cannot let my own agenda prevent him from getting to do all the things that are out there for him. I will always error on the side of "the Quality of Life vs. the Quantity Life"

For now he has had some calm and comfortable days and that is what is important.
Things seem Better

What a difference a week makes!

Its 2 am and I am so overwhelmed right now I feel like I am the one who needs the meds and possibly a stay in Camarillo{A well known State Mental Hospital in California}

Dak returned early from his Dads last weekend and it wasn't good--Barring all the circumstances the police were involved on the basis of a "welfare check" but we all know someone probably though it was much worse --A N Y W A Y

The week since had been relatively quiet and still looked liked the meds being reduced was going to be OK. Wednesday rolled around and he started to show some of the more intense agressiveness that I thought had vanished. Saturday came and we were back to the the "Saturday Syndrome". Don't know if I have ever called it that before but essentially the weekends seem to throw Dakota off-- Mostly because of the TV schedule. Its like Crack for him-- I don't mean to be frivolous with that phrase but but he is addicted to the weekly TV schedule and when Saturday arrives he refuses to turn on the TV and in fact starts with the growling and aggressiveness if anyone else wants to turns it on--{ I am glad he has it off but I don't like what it does to him and his behavior}
OK from there the weekend went down hill
At this point I am so frustrated and exhausted not to mention alone, I am not sure where to turn-- There is no outlet and no support.
Due to his difficulties at his Dads last week I came to the conclusion that No Meds just is NOT an Option for Dakota, at least for now-- I really had "pie in the sky" hopes for a med free kid and still maintain that is a possibility H O W E V E R I can honestly say that from what we have endured this weekend it is not fair to Dakota to let him feel some of the emotion he displayed--I cannot begin to imagine what it must feel like in his head when this rage takes over.
I have started him on another medication to see if he can be switched to something else that could potentially be healthier for him. He has only been on it for 2 days --BUT from what I am seeing right now I don't know how long I am willing to let this go on before I go back to what I know was working for him--- I know "Don't fix what ain't broke" and I went and did it-- so now we all have to suffer the consequences.
Its all my fault and its my responsibility to fix it-- I am just trying to be patient with my decisions. At least trying to give this med a couple of days to be effective -- 
Perhaps a week that's about all I think I can take and its all I am willing to allow Dakota to suffer.
Last week I was riding high and This week I feel like I am in a cyclone from HELL -- who knows what next week will feel like----What a difference a week makes!

Continuing reduction of Meds--

Well so far so good-- we are almost med free and seem to be doing pretty well=-- the doctors visit will help with getting a better picture.Should be med free and out of the system by the time we hit the doctors offfice. Have noticed a marked increase in language and conversational skills. Sleep patters changing a bit and seems to be a little more active-- which seems to be normal.
I am interested to see if this is a step in the right direction BUT for now I am happy with the results-- ONLY TIME WILL TELL!

Mothers Day

This is a day that just about everyone celebrates in some way-- Obviously because "Everyone has a Mother". I don't believe it takes a day "earmarked" to honor the person who gave birth to us, However our society kinda "gloms" on to this tradition and you actually can feel left out or excluded if you don't "participate".

For the vast majority of Moms who have kids and adult children with Autism this can be a day of sadness-- AND ITS OK TO FEEL THAT WAY. MOST Children no matter how difficult they can be; find some way to stop for even 10 minutes and buy a card, to give a kiss and hug, make something they did all themselves or pick up the phone and say "I Love you". For the families with Autism it can be a very different day. Many of our kids don't have the concept or social "cognizance" to understand those delicate nuances of a card hand picked by them or a small effort to construct a picture on their own-- They do not get that there is any meaning behind this or what is significance can be.

Many of the Moms who live with Autism think of this as just another day to get by -- Keeping a routine in place so there is no meltdown or gracefully bowing out of an invitation with the knowledge that somehow it would become a disaster instead of a pleasure . I don't want this to sound OMINOUS I just want to express what I am quite sure many have already thought.

For Years My mother has made an effort to have a card and some little thing for me, by my son, on Mothers Day{and other holidays too}-- Don't not get me wrong I am appreciative and that's what my Mother did for me even tho it was her turn too! Its the simple fact that Dakota doesn't seem to understand that it is what comes from him that makes me the most proud--Theres an emptiness that comes on your birthday,Christmas or some other holiday when you cannot enjoy a small simple gesture from your child. Its not about the glory or bragging rights  of what they got you or did for you; its about being "typical".  Its about being like everyone else  once in awhile. Its just another part of our world that many cannot comprehend. 

We as Moms on this path know its OK and we are OK and we WILL BE OK ! Its just another glitch on the system or another niche in the road. We will get by it. Just in a different way than Most Moms today.

Capture what you can with who you can! Enjoy the day because you are here and with your family and not because it is a holiday to recognize that. Be thankful for the crazy things in your life and always know there are other people out there with different struggles and theirs can always be worse than yours.  

AND for all the Moms out there living with Autism I send a special tribute to you as an "unsung hero" and a "keeper of the torch"  to bring just a little more light into your child's life. You are all my heroes-- Happy Mothers Day    

An Ahhhha Moment! "Heaven"

One of the most difficult things with Autism is that you know that the kids are not "retarded " BUT often times there is great thought about the individuals "conceptual " thinking skills-- {What do they know by rote or example and what do they truly understand!} {example: the difference between the words two and both; 2 separate words yet they can refer to the same thing}

Just 2 days ago Dakota and I were watching the Family Feud. Steve Harvey reads the question " Name one of things you might see when you die" and before either of the people could push their buzzers and reply, Dakota shouted out "Heaven"! Setting aside anyones beliefs;The amazing part of this was that he shouted it out with such conviction. He understood the question and he answered the question not by rote. Yes one could argue this is a "pat" answer I will however go to my grave believing otherwise---He heard the question and he knew the answer---

It may seem trivial to most especially ones who do not deal with Autism . I cannot tell you how many times over and over your child gets shut down, questioned and assessed as mentally retarded to speech and language delayed {and of course everything in between} You discuss with these "professionals" how you see progress, how you see growth, how you know your child is doing more than they want to give him credit for, yet their "opinion"  prevails . They think you are reading more into it than is really there or you are over reacting to something that seem minute to them. What I say is "YOU WILL NOT DAMPEN MY SPIRITS -- YOU WILL NEVER CONVINCE ME I AM WRONG ABOUT THIS!" When you live in the world of Autism 24/7 365 I admit you have moments of murkiness --you will believe certain things will happen when they wont or cant-- the flip side is, that being so completely immersed that you know when something is real; you know when you are seeing something you have never seen before and you know it is genuine.

This may seem a bit trivial as an excerpt for this journal BUT Not to me and not FOR Dakota-- again when you have typical kids this would never be something that any parent would even take notice of much less write about. For me its "An AHHHHA Moment"      

APRIL is AUTISM AWARENESS MONTH

YES April is Autism Awareness Month---and YES April is almost over
Just wanted to do something simple

1 in every 91 children born will be affected with some kind of Autism--
It is overwhelming, over powering and quite frustrating for the kids as well as the parents.

The most prominent detail of Autism is that it affects each individual differently. You may be standing right next to someone who is Autistic and not even recognize the disorder. Each person will display different abilities in demeanor and social behavior. Do Not judge with your eyes and your ears USE YOUR HEART.

There are thousands of public service announcements and hundreds of resources to get information especially during this month of awareness ----My message is simple when you see someone out in public either by themselves or with support and things seem out of place before you go to that place of JUDGEMENT Please just take a minute; Watch and think -- can I give a helping hand or should I say or do anything. Most the time all we want is to exist in the community just like everyone else. 

A Little to say About Nothing!

I felt compelled to write as I have been getting more response from casual readers--It seems to have made me aware that although I feel I write this as a tool to vent;there is a deeper purpose and why I started this blog in the first place. 

I have recently received several emails from caregivers with comments and questions about life in general living with Autism. It is certainly no party and it is pretty much all consuming of your life. You find yourself isolated and restricted to many of the every day luxuries of life.

Many outside the "realm" do not realize how life with Autism is a well choreographed dance to get thru the day. Sometimes even something as simple as a phone call or an hour on the computer has to be "timed" with precision! I actually chuckle to myself as I know many would think I am a bit nuts---AND perhaps I am, but, I stick to my original statement.

Add to that the act of going out in to the community and you have a new challenge every time.Some what similar to when you have an Infant and you pack a diaper bag and there is always something that happens you did not prepare for. The "surprise" element is a big factor for us and our kids. You can be going down the isle of the grocery store and out of nowhere your child drops to the floor and starts screaming or you have been out for awhile and you get in the car to do something else or head home and BOOM the car door opens while you are in Motion! Life with Autism is a "Crap Shoot" The factor that is the most difficult is the "viewing public".  After years of living with Autism you become equipped to deal with most circumstance but the most unpredictable element are the people who are on the OUTSIDE LOOKING IN!

I have always tried to seize opportunities to inform or educate anyone around. That being said I have changed somewhat in my opinion that every one needs to know about every little nuance of Autism. I now have narrowed my opinion to "A Need to Know Basis". The rule is that we DO NOT live in a an "Ozzie and Harriet World" and "shit happens"; typical kids and Autistic kids alike. NOW when something happens if it directly affects a stranger like body contact or verbal interaction I take that opportunity to inform the person they are interacting with someone who is Autistic. If it is just a situation where people are present when a meltdown occurs or they see something "strange" I don't waste my energy trying to "educate" them.

Please don't misunderstand-- I believe we should take any and all opportunities to desensitize the community to our kids and Autism in general.I believe you have to be like a teacher that find the right "teachable moment".

A little to say about Nothing can go a long way!

Rough Day -- questioning Myself

Today was just the pits----
When Dakota hurts I hurt.I know that is the lament of every parent somehow it just seems more intense when it comes to Autism. Many would say prejudice.Perhaps---

 Trying to reduce the medication has made me sensitive to any recent behavior change--add to that we had an unexpected doctors visit for a possible injury and it creates confusion and second guessing.

You can never be sure which situation may be causing a new or different behavior. When many of the parents try new meds or new therapies or vitamins/supplements EVERYONE says the same thing do one thing at a time so you can discern what is causing the change.

I feel deeply convicted to giving this reduction of medication a genuine effort. I feel I owe it to Dakota to see if he can in fact function reasonably with out meds or if another med may be better for him. The Risperidol has been actually quite successful for us. Unfortunately his puberty coincided with the start of this medication and I do believe that the long term effects MAY be to blame for a few things that Dakota is experiencing. In all fairness I have kept him on a significantly reduced dosage-- to the point of many doctors telling me that the amount he is getting is not enough to do do anything--- I DISAGREE. I can see a difference and I can see a benefit. I know it has helped Dakota. Again my concern is the length of time he has been taking the meds. 
And as a parent it is important to not become complacent when you have a child that is dealing with something like Autism--There are always new things coming out and new information, new trials, new therapies.You don't have to try all of them and you don't have to be an "Uber-Parent" just open to possibilities that change may be a good thing.

Where I am torn is; right now I am seeing escalation of behavior not anymore severe than I have seen before but behavior I haven't seen for awhile--My first reaction or mental note is Ah-HA it's the meds---Then I see him struggle in an afternoon of crying and aggressiveness and plain-ass misery, my first reaction is OK this isn't gonna work and I want to shove the meds back at him--Of course its the easy way out! OR Is It???? 

Is it really OK to let him get into a state where he is beside himself with emotion and behaviors just to avoid side effects???Then I say well perhaps this will pass as the meds leave his system---I don't know---I just don't know if there is a right answer.
I am not opposed to medications for our kids/On the other hand I say that if they can do it with out them Why Not?
This is why I am questioning myself.
When I look at my boy and I see in his eyes that he is lost and he is inside is head and the thoughts or words just can't or won't come out it tears me up.

What has come from today is a new quest to seek out some advise.To research and look for information that can help me figure this out--following my own advice--Never Give up.         

Drowning Autism

There is not a day, much less an hour that goes by that you either think about,speak about or do something that is related to Autism. This is just the way it is when Autism is a part of your family.Its almost like having another family member----

The diagnosis screams emergency! Study after study indicates that "Early Intervention" is Thee Answer.So you dive in and usually everyone in the household does too! Even the siblings who do not have the diagnosis are apart of the solution or plan.I am sure that this seems common of most disorders or ailments somehow Autism is the King.{Which can be another discussion all on its own.} This diagnosis affects the household from the moment you wake up in the morning till the lights go out at night AND sometimes its all night when you have one who has sleep malfunctions caused by Autism.  

This is a disorder which is so common that the ratio right now is 1 in every 110 births result in some diagnosis of Autism. The medical profession is inundated with studies, research, opinions and strategies all seemingly confident that their observation or "cure" is the one that will work. Hell, there are even Parent and Caregiver support groups on line who have individuals who believe that what they are doing for their child is gospel. It even goes so far as to feel that they {the other parents} judge you if you do not "buy into their protocol".{Again a topic that deserves its own excerpt}

How this all equals "Drowning in Autism" is that there is NO for sure "life vest" with this diagnosis--Even with things as horrible as Cancer at least you have percentages of recovery or months to live or a way to see or NOT see physical progress with the disease.You at least get a reprieve when you go to sleep at night and maybe you have a day or at least a couple of hours where you can do something anything including something as benign as sitting on the coach an watching a movie without the disease or disorder haunting you every move. Autism is not like that.

Autism is so isolating. For the family as well as the person who has it.Your home becomes a secure haven which you can let you guard down and even allow things to transpire that others could never imagine. Sometimes its not so horrible things but just the same its things that John Q Public would judge as unacceptable. Where in our house its just another day in Autism Land!

Drowning in Autism is not just about the diagnosis but the social impact it has on your child, their siblings, your spouse and you.
The child has to deal with everything from bullying in school to judgement of the general public when a behavior erupts. The siblings deal with the inability to have relationships with their classmates to trailing along to every appointment having their lives interrupted just because they have a brother or sister who has Autism.Forget about the relationship with the spouse, the  divorce rate is somewhere in the 80 percentile not to mention those that manage to survive are constantly in turmoil about what to do and when to do it. And for yourself well I think the biggest impact is everything you did before Autism for the most part comes to a screeching halt. Its not about depriving yourself or being a marter {SP}. Its about doing everything you possibly can for your kid {and here comes the most important part} Not because someone else says it works or its the "cure" but because its what works for your child your, family and you. AND even this; will isolate you from other parents who are dealing with the same diagnosis because they judge you for not doing what they think is the right thing. 

There are no right answers. There are no miracle cures. There are no rule books. Most importantly there SHOULD BE NO JUDGEMENT on anyones part. Unfortunately this happens. It happens with everyone.The most important thing when it comes to this situation is to be as honest as you can with everyone you come in contact with--Whether its out in public when your child has a meltdown, an argument with your spouse about care, a sibling who cant have someone over for a sleep over and finally when you have a friend that wants to come to an event and you just cant do it because you cant take a chance that something will happen when you are gone. 

Its Drowning in Autism. You keep hoping that someone out there will send you a Life Raft AND It doesn't happen often.      

Struggling -- with the Medication Issue

The subject of medication has always been a difficult issue . I am sure in my very early posts I have talked about how when you get pregnant the rhetoric begins from EVERYONE--  Don't drink; don't do drugs; don't use caffeine; don't look sideways at the sun! AND everyone is an expert about how you are creating th4e best environment for the baby you are carrying---

All of a sudden you have a difficult labor and delivery; the world turns upside down. You are knocked out and kept sedated only to find your child in a Neo natal ward with every type of wire, tube and monitor hooked up and the staff pumping your child full of drugs beyond belief. WTF?Everything you did for 9 months down the tubes.

So you spend the first couple of years deciphering what the baby needs and finally get back to a "clean" environment then along comes puberty AND school. {I know what does school have to do with it?}
The pressure of trying to give your child the perfect opportunity coupled with dealing with the people who are involved in supposedly educating you child becomes this vortex that sucks you in and you do not know what end is up and what choice you should make. The behaviors escalate, there are calls from the school, the child is miserable, the teacher is freaking out, puberty is knocking at the door,the other kids either ignore him or don't know how to interact with him and then enter the staff that tries to assess the situation all along posing as someone who cares and is trying to help; while they are just searching for the easiest way to either drug your child into submission or get rid of them all together-- preferably to another district. Its just a Big Black Hole. There is no right answer.

So somewhere in your muddled exhausted being you come to the conclusion that you have fought it long enough and you will try the medication.Seems like a bandage and seems like its a cop out but when you have fought and fought and the person who is suffering the most is your kid, you finally give in. The irony is that the meds seem to actually help--- The doctors tell you give them more and more and never offer any other alternative..For us, I kept a close watch on what seemed to work and refused to increase the dose even tho the doctors told me what I was giving him wasn't doing him any good. Well to this day somewhere around 12 years later I still stand by that decision. The smaller amount worked and I was not going to ramp up what did not need to be.

As the years pass you start to wonder if you made the right decisions and you always question yourself. Behaviors come and go, school is no longer so you really start to wonder if the meds should be continued--Then more and more information comes around about how these medications are so harmful-- the are addictive, they are causing boys to develop mammary glands, they are notorious for weight gain-- All you think is am I doing this to him because I am shoving this crap down his throat. Am I doing it for the right reasons ? Is it truly helping him? Is the benefit outweighing the side effects???No matter what the choice is you will never really know -- Sometimes you just have to do it and not look back. For that I have no regrets.

The struggling comes when I see him approaching adulthood and I ponder his ability to live without the medication. He no longer has to please anyone and He no longer has to "conform" to certain peoples rules in order to attend school or be in a classroom--So why not seize this opportunity?
I want him to be medication free if it is possible but I will add this caveat I still maintain that quality off life is still more important than quantity of life--

As I have said previously there is no right answer.No one can judge you, shame you or make the decision for you. The only person who deserves any consideration is your child. Read him/her like a book, observe and journal behaviors and the correlation with medication, food and other environmental affects  You will soon know whether the decision you make is right .Then DO NOT allow anyone to tell you you are wrong.Always GO With Your Gut.

I am struggling with these choices right now but it is only myself questioning me!

Inanimate objects!

When you first start this journey there is so much information flying past you it is a miracle that you remember or retain any of it! Certain things seem to stick and I have come to the conclusion that it is because those things either make sense or seem to apply somewhere !

One of these little gems was the documentation about inanimate objects and how our kids don't seem to bond or derive any pleasure from the "typical" toys or stuffed animals; that they nstead prefer to attach themselves to "things" like jars or cans or brushes or any other item you can think of that would not necessarily be of any interest to a child--- Nothing colorful or frilly; soft or cuddly nothing that has an identity like an animal but just STUFF.

Even now at 24 I find this incredibily fascinating--
And just yesterday I walked back into the bedroom only to find an array of objects spread around the bed.
A plastic Banana Hair clip; a bottle of Moouse; a little box of floss; a comb;a spray bottle of febreeze; a dispenser for tape and some stick deodorant!
You cant help but have a little chuckle when you know these are unrelated other than they can all be found in the same general location.

An extension to this is that the items get transported from room to room.I cannot tell you how many times I have walked into the kitchen and I will see a toothbrush or I walk into the bathroom and a spatula has found it's way there!

Its really not a big deal; its just a part of Autism and I have to say there are so many other issues it is actually a part of this disorder that can be entertaining. Don't want anyone to think I am making fun but when you realize that this is a forever situation it is so important to take every opportunity to find the silver lining whenever possible!

Emotions and Crying

This is such a tough subject for me---
Primarily because it has such a "double edge".
On one hand you live for the moments your child actually experiences typical behavior and feelings;
On the other it tears your heart out to see them sad or confused or even elevated with aggression because their brain does have the capability to decipher whats "normal" and whats not!
I REALLY HATE USING THE WORDS TYPICAL OR NORMAL OR REGULAR . Sometimes it is the only way to describe what I know as a person who does not have Autism and what I see and experience as a mother of a child who has lived with Autism for over 20 years.

Recently Dakota seems to have heightened emotions which are manifesting in crying many times. He has had some new awakenings about many feelings and emotions, not just sad ones, but those are the ones that are most difficult to deal with . When he puckers up and becomes distraught it is a helpless feeling because he is unable to reason WHY he is feeling sad. The natural progression of an interaction would be to show compassion and/or empathy and to try to comfort Dakota. The difficult part is that he cannot express what is triggering his sadness and tears.
Then I arrive at a place where the more I press him sometimes causes the emotions to escalate yet if I ignore them I often feel like I have missed an opportunity to crack open another little part of "normalcy". 

The hardest part of all is that this has spilled over into other situations outside of home . That makes it even harder because others are really baffled how to handle it.There does seems to be some predictability to it, as small as it seems, the crying almost always follows the end to something-- whether it be a movie or a goodbye to a person or even leaving one place to go to another. I know that in someways that seems obvious but in other ways it almost seems too simple.
No one ever has said that Autism is simple . I do know that sometimes the most simple solutions are the best for our kids. Being practical and utilizing your "gut" feeling is almost always the best way to handle any situation .

For now this is one of the most pressing issues or at least tone of the most predominant- I know we have been going through many stages with various behaviors and I am sure there will be more as the years roll by . The one assurance I have is that with every day and every issues I learn a little more about my guy and it makes me a better parent to help him through this world!

Best Friends????

When I first started this journey over 20 years ago Autism was still somewhat of a mystery. There were still many opinions about its origins and how or what to do to help those who have this crappy disorder---
It is quite disheartening as you see a fairly "typical" child from appearance, yet know and witness time after time the most screwy and unpredictable behavior that also chooses the most inconvenient times to rear its ugly head.
You read, attend support groups, search out professionals and parents or caregivers and educate yourself every way possible to help your child de-code the world.
There were many accounts of sad and unpleasant writings about frigid mother syndrome, frontal lobotomies, and permanent placement in State hospitals. As the years developed more understanding which was coupled with growing numbers of diagnosis' more professionals were starting to study and publish more promising and helpful information. Which leads in to the title of this passage "Best Friends" ;

Very early on one observation that didn't seem to have much relevance but kept reoccurring was that Autistic kids found peace and solace with things like the computer or television because they were constant and consistent; they didn't talk back and they always gave the same answer or information with the lack of emotion or personal interaction. I filed this in the back of my head and used it as I could while Dakota was in school but it was not till a week or so I had what I call a "Should have had a V-8" moment-- kinda like an ephiphamy.

I have had a lot of difficulty getting Dakota out and away from the TV and I have felt very guilty about it until now. I know he needs variety and he needs physical activity and he needs to do something else but sit and live by the schedule of the TV. As a concerned mother I embrace that theory. I also embrace the fact that this is not a typical kid and most typical kids don't want to interactt with Dakota. Those that do only do it in a limited matter and he is not one to inititate. He has feelings and longs to have what  every body wants which is friends but how do you do that?? You do everything you can to get out and get exposure and involvement BUT he has the right to his own preferences. 
His TV "buddies" have become his Best Friends. The shows that have Drew Carey, Wayne Brady, Steve Harvey, John O'Hurley or even Harvey Levin just to name a few those are Dakotas Best Friends.that's why Dakota gets so distraught when he has to give up is shows-- its like leaving his friends.
It may not seem normal but what is normal with Autism. I think it like anything else you have to pick your battles and you have to filter out what other might think or say and DO WHATS RIGHT FOR YOUR KID!If your kid has to struggle thru every hour or everyday with a stupid disability that buzzes in his head isn't it only fair to let him have the "buddies he wants and let him decided who he wants for "Best Friends"?-------     

Happy Valentines Day

When holidays come around they are such a double edged --- theres the simple pleasure of the little fun things that  holidays bring like the decoration or the funny cards then there is the realization that it is mostly what I make it and how will Dakota enjoy or celebrate these days when I am no longer here to "make things happen". Of course the simple answer is that I wont have any control or knowledge for that matter and it will be what it will be but as a parent I cannot help ponder the inevitable.

When we have typical kids; they grow and separate from us and they make it what they want it to be or what their "significant other" wants it to be. Our kids are not that lucky-- so few of them will ever have a partner and many will be lucky to have family or close friend who have some interest in providing a little glee in their lives---and with Autism most of the kids will not express delight but still expect the hoopla that generates it... Then the person who is trying will question if it is even worth doing any thing since the Autistic individual didn't re act to their efforts---Oh what a confusing mess--- really something only a Mom or Dad would understand .  Or perhaps even think about.

Never the less  everyday that we are here and every holiday that comes we will press on with the expressed intent that No matter what we are making memories---That is the most important of all . They can take away physical possessions but they cannot take away memories and one thing we know is that "OUR" kids  do not forget!

So tomorrow there will be a little candy and  a card, maybe a small present and a fun activity --- another memory shared! Happy Valentines Day !

What a Week

Its been quite a while since Dakota was physically sick-- I often find myself perplexed about this situation. Everyone has aches and pains both children and adults, yet it is a rare occurrence for Dakota to complain about ANYTHING. At least when it comes to physiological  maladies.

Dakota has what I consider a high threshold for pain . However one might assume that he feels the pain but DOES NOT  express his discomfort. With a diagnosis of autism it will always be a guessing game. He has speech and can express himself, yet when he is sick, his concern is more about how he wants it to go away and how bad he feels, NOT to tell anyone about it.

Surely he must have an pain in his leg, a headache, a cramp in a muscle or sinus pressure. Does he tell me??? NO  I cannot imagine going thru life and having these small ailments and not taking preventative measures. I can assure you that HE just does not let anyone know how he is feeling., That is incredibly frustrating.

I am sure I am not the only parent who has a kid like this. It becomes a guessing game to figure out why and what is happening. I have often remarked it is like having an infant. You rely on  your instincts and his behavior coupled with the physical  "traits". {is he hot?/ is he grabbing or rubbing a part of his body? and of course is he physically ill?]

Well this week it was a wild ride-- somehow, somewhere Dakota got sick --really sick.Funny thing is that he is so sequestered from "people" I cant even figure out where he got it--BUT HE GOT IT! 

The middle of the week he started with vomiting followed by diarrhea and before the week was over he woke up with chills and spiking temperature. OK so its not any different than anyone adult or child going thru  This is where I say "WRONG"  

Dakota not only absolutely hates to throw up but he hates to be anywhere near the toilet much less BEND OVER  the toilet--when he gets sick.Needless to say there was a mess everywhere. Hey that's parenthood. This is a kid who does not spit, does not blow his nose, does not swallow pills so why would I think that issues with the toilet are unusual?{smile} By the time it subsided I had plastic on the mattress, almost all the sheets and towels in the house either in the washer or the dryer or waiting for the laundry. Coupled with that about 10 showers to clean up the boy, it was circus .

I guess why I write about this, is just another observation about how different it is when you have a kid that has challenges vs a kid that has the ability to understand in a typical manor.I would venture to guess that some parents who have autistic kids may not  think about things like this. Dealing with the Autism is tough enough without adding additional care when they are sick. I just want to urge anyone caring for an autistic individual to keep a "keen eye" and "an ear to the ground". These kids could be telling us they are sick before the physical attributes show themselves.

All I can say is what a week !               

Already a Week

Already---- a week has gone by---
So many things swirling around in my head yet I question the importance to others who might read this.I guess the real purpose of a blog is to express whatever you think or feel and not to be concerned with the "observers".

Looking back at "a year in a glance" there were many ups and downs . We lost a very important component to Dakota's independence and that was huge-- His friend,coach and mentor Brad Loula died in his sleep last June.The hardest part about his passing is the residual effect that it potentially has on Dakota--Autism is a very strange "animal" when it comes to emotion and feelings. Perhaps even the issues that we have had just recently could be Dakota feeling the loss from so many months ago and they are just now surfacing.
As for behaviors that too has been somewhat of a roller coaster. He has been having extreme highs and lows with several aspects of life. He had been attending a program specifically for Autism and somewhere things went sideways and he was lashing out at the person who was working with him so we have temporarily discontinued the program till he seems ready and accepting of trying again.
Add to that the extreme emotional acting out that has been on going for the past year -- it is continuing BUT I have to admit that it has drastically calmed down and in fact I have made some in-roads to acknowledge it and even discuss with Dakota about recognizing it and handling it --The occurrence level seems to be reducing. He and I continue to do the dance around the hair twisting and if I have not written and except about this I will -- although I know it has been an ongoing problem for several years-- since he broke his leg---AGAIN  i will give him credit I have seen improvement in this area also;so I guess I have a lot to be happy about! 
Dakota did take a "Get up and Move" Dance class that was very beneficial-- however not enough sessions so I hope that another one will pop up in the near future>

I have to admit that my prayers ALWAYS  ask for baby steps of improvement and I cant ask for more-- in that respect I have to say 2010 was OK.Every day we can get up and muddle thru without incident is a day I want to cheer. If it is a day with incident as long as it can be managed or is less than awful ya gotta cheer, too!

Its really about just being thankful for life not being anymore complicated than it is..... Kinda the old adage that "when life hands you lemons you make lemonade" BUT you gotta add the sugar!

Another Puzzle to Decifer!

I am starting to understand more clearly why they signify Autism with puzzle pieces. It seems that your are always trying to figure out what is causing a behavior or emotion! Hence putting the puzzle together.

Its funny as I reflect on this time last year we were having pretty extreme behavior several times a week and I was at my wits end to decifer the cause. Although he is still exhibiting some of this behavior for the most part it seems to have subsided tremendously. What seems to replace that, is another emotional component. He is having bouts of extreme depression that brings on sobbing and the inability to express why he is feeling this way.

As a Mother {or a parent for that matter} it tears your heart out to see your child struggle with emotion that cant be explained. And, with Autism this is rare, in and of itself because typically Autism is pretty much void of feeling or emotion. So it is double edged --- In one way you hate to see the child depressed and crying still theres another very small part of you that thinks that at least it is a typical behavior. Yet, one you really dont want your child to experience.

The crux of this dilemma is a bit more complicated--When I analyze the trigger for this behavior it seems to happen when something is ending or coming to an end--If he goes to his fathers it occurs on the day he is coming back, when hes watching a film or live theater it happens at the end of the production or even when he has a class that goes for days or weeks when it is time for it to end; that is when the emotion displays itself---{I believe this is separation anxiety} The biggest problem, is that endings are a part of everyday living and you cannot control nor sheild ANY child from this.  Try to explain to a typical kid and eventually they understand -- for an Autistic kid, they may never get it---
THAT TEARS ME UP!   

The other component is that a pyschologist or pyschaitrist may be able to help for most people . In case of an Autisitic indivdual what can they do other than shove medication down their throats??? Dont get me wrong I beleieve that meds have their place and benefits, I just have a problem with medicating someone { with pyschotropic drugs} who is not conversational and/or unable to express they pain they are feeling. In other words how can you expect and Autistic individual to lay on the couch and pour his guts out when they sometimes barely express basic needs or wants?

It is quite a dilemma in my mind-- I want my child to have peace of mind and to be as mentally healthy as possible, yet I dont trust that medication is the only or absolute way to do that.


Guess that where I segue back to the "puzzle".  There simple ones that get put together rather quickly; others are the 1000 piece take forever to assemble.

Happy Friggin' New Year 2011

Well every year since I started this blog I swore I was going to write more; and every year some how I drop the ball! So i will start out with good intentions and we will see if I manage to make some headway---

My observation is that I need to make the excerpts shorter but somehow my style of writing like my "gabbing": they are always more than most can take!

So here goes another year; I continue to hope that somehow this will reach even one person who is struggling with one issue and finds comfort or a solution from my experience!

So Happy friggin' New Year lets get this party started-------------