To say that this journey has its ups and downs is a full blown Lie---It is the biggest hair-raising "E" ticket ride you can imagine. Never mind that you go through so many episodes of discovery and experimentation but the emotions and feelings are sometimes so overwhelming that you will never be convinced that ANYONE could ever feel the same way!
I am not trying to say that others do not go through their own troubles and problems. I am only saying that this disorder is so "ever-present" that often it becomes exhausting trying to keep up with it! And I do mean "IT"!
AS you can probably tell, I am at a point where I am really worn down and the crappy thing is I cannot even pin point exactly what is getting to me .That is pretty bad.
When you are a caregiver of anyone who needs help whether it is aged,recuperating or disabled there are always moments when you wonder if you will ever get passed the moment you are in that is giving you so much angst.It usually does pass and a day goes by and you are over it--either a good sleep or some respite or just something good happens with the person you are caring for and that is all you need. The frustration or emotion becomes history--Tommorrow is another day!
BUT occasionally you hit a point in the road and for some reason you just cannot shake it off----I think it comes when someone asks you whats wrong or how can I help and you have no reply. Its like being lost in your own thoughts and not having the ability to explain what is troubling you.
Perhaps in my personal case it may just be the longevity of the journey. I know full well this will be my path for the rest of my life. I have no reservations about that and I truly hope that God will be kind enough to keep me here long enough to get much much more done.Upon that statement it could be melancholy.I know one thing that as long as i tread this earth I will forever be advocating and pursuing opportunities for Dakota. Sometimes it feels like you are the Autistic one, banging your head against the wall, trying to convince others how and why your child deserves so much more than society or the community wants to offer.That in and of itself is enough to warrant these emotions.
I cannot tell you how many times I have read web postings from other caregivers about the emotions and the feelings that overwhelm all us at some point.I truly believe that although there is an innate responsibility to care for something you brought into this world there is even more frustration when you cannot get another humane being who is supposed to be helping you or supporting you and your child to understand how they are so blind or detached or stupid{for lack or a better word} about what they are convinced is a good thing when it is so so WRONG. And then they have the audacity to make you feel like you are asking to much of society ----What ??? to accept my child, another human being as an equal part of the community.
It wears on you and it tears you up and you want to just scream don't you get it??? And then the most horrific thought crosses your mind-- what is going to happen when I am no longer here to make sure these idiots don't do these crappy things??? I do not like the answer-- He will be lost in the crowd . Decisions will be made that demean and reduce him as a person and I hate thinking these things-BUT I CANNOT HELP IT1
Please someone tell someone else and have that someone else tell another person--we have to make it right for every one and these kids do not have the ability to stick up for themselves.Whats even more gut wrenching is that when these kids do try to tell us or anyone that something is not right they us a behavior that is not accepted or understood by even the best of us who live with Autism so they are then punished even more because no one takes the time to realize that they are using what voice they have which is usually a behavior that needs de-coding. No; people shut down and only see the actions; judge and react to the inappropriate-ness.
Oh how I convince myself more and more it is a lost cause and this all falls on deaf ears-- I can only hope that somehow this cyber babble will eventually help others to further understand and appreciate our kids.
Is it any wonder I am in a funk that I cannot define? Oh there are days and they pass but its like anything else you just put one foot in front of the other and take it day by day. When you get like this;one can only hope that after you lay your head down for the night that when the next day comes it is better.If its not the next day then it will be the day after that!
My quest continues and I work thru these funky feelings by venting on this damn machine -- I guess my therapy is the hope that someone else may benefit from my drivel. Tommorrow is a clean slate and perhaps I will be closer to figuring out whats next?
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