I posted the other day on Facebook that sometimes I feel like a Hamster in a wheel... I cannot seem to see the light at the end of the tunnel and that for the rest of my life everyday until I pass that I will be helping care for Dakota ...AND sometimes that exhausts my mind,.it frustrates me , and yes sometimes even pisses me off....Not as a resentment toward Dakota but just as an overwhelming thought of helplessness and in ability to have any control over the situation. By the grace of GOD I am not a controlling type of personality and that one thing has helped me thru.
When we have these children and eventually get a diagnosis one of the first questions we ask ourselves and then others will ask quite often is "will he be able to take care of himself" ...at what age should you start seeing these abilities... and day after day , month after month , year after year , as they go by you keep that lamp lit and keep hoping that things will develop .... Every tiny step is a blessing and you continue to hang on to hope that maybe just maybe he will burst out in flames and he will do things like we never expected. Of course as the years go by you set your expectations aside and keep plugging away and continue to be Thankful for any progress [especially during puberty}
When the school finally exits your child having done a lot less than promised or expected and you have sat for hours on end reading, playing, teaching and the 20's roll around you really start re assessing... Don't get me wrong I will never give up BUT you have to start re evaluating whats been done and what can be done.... also by this time the child is no longer child in most aspects yet hes not like a typical kid and cannot be treated that way ether.
The most prominent thing I have noticed is that he is more and more set in his ways and is much more resistant to change ..PERIOD.I don't think I could have done anything differently and I will continue to challenge him to try something new ;but I have come to a place where I evaluate the the purpose and the reward vs. the fight to put a new thing into action. At this point in time I always ask is it worth him acting out , getting upset, crying, yelling etc etc just to have him experience something that I think is good for him when he clearly doesn't have the interest or understanding???Again I will not give up but I make sure that if I am going to push his limitations It better have a profound benefit to HIM and not me or anyone else. Why make his world any more stressful than it already is... Can you imagine living with a woodpecker tapping at your skull day in and day out and then someone asks you to stand near a chainsaw all day???
I guess the whole point of this post is to vent {a lot} and speak to others who live in the same situation to let them know they are not alone ... one of my friends on Facebook merely said its not that you cant see the light at the end of the tunnel its just that the tunnel has a bend and you are not around it yet....We all need help and we all need to know to ask for help . So many of us just don't ....
