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!
Friday, August 19, 2011
Sunday, July 24, 2011
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 .
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 .
Monday, July 18, 2011
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.
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!
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!
Sunday, July 3, 2011
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
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
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