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"?-------