Tuesday, June 19, 2012

Living with Autsim: Tiredness and a Twitching Eye...

Living with Autsim: Tiredness and a Twitching Eye...: Sense Alex started group again this summer my left eyes has not stopped twitching. Its a thing I get when am stressed and just plain exhaust...

Tiredness and a Twitching Eye...

Sense Alex started group again this summer my left eyes has not stopped twitching. Its a thing I get when am stressed and just plain exhausted. I didn't use to be like that, everything would just wash off my back, and I mean EVERYTHING. I didn't care, before his diagnoses I treated him like a regular bullheaded child like his mother LOL then after the diagnoses and the therapies I have become mama bear to the freaking tenth degree. I worry about absolutely everything!
Just thinking about fighting him in the afternoon to leave him crying his little eyes out at group while he watches me walk out the door, breaks my damn heart and it stresses me out. It does. Its 10:43 in the AM and guess what, am freaking exhausted, am tired, physically and just freaking mentally.
My husband came home on sunday, and it was father's day, I had a few beers and we ate some good Cuban food, and then I totally crashed at 8 at night on the couch, both my eyes were twitching and I could not for the life of me stay awake, I was extremely tired, I think my body just waited for my husband to come home so I could just reset LOL but I haven't reset, my eye still twitching, am still tired and I have no energy whatsoever.
The thing is, while Alex went to school I would go walking and running, and that was a stress reliever for me. I would let go of everything while I was walking and running, and now I am not able to do it, cause I take him to the park and I have to worry about him wanting to go into the middle of the street or a stranger asking why my son is crying and then telling me that "i am so glad my grandson is healthy" after I tell her that my son is autistic... really... it wasn't necessary to say that.
And I have realized something about my self this couple of weeks... I have become a tight ass... I don't laugh as much any more, I don't have fun like I use to, my son is not to blame, and I don't even blame autism. But I do blame myself, because I know better. I know that I have to take it easy and not let things bother me and just accept things that happens, but its difficult, everyday the same thing, the same routine, the same issues and the same challenges, its hard, but a lot of people either chose not to understand or they blind themselves to reality, "things are not happening, his going to be better, he'll wake up one day and start talking, he'll wake up one day and be a regular 5 year old".... and its up to me, on my shoulders not only to educate my son, but everyone else around me, that is a possibility in the back of your head and this is ALWAYS is something that just doesn't go away, that he might never leave home, that he will never have a regular life, that he won't be able to adapt, that he will need help for the rest of his life, that you might not be able to give him siblings because you might not be able to handle the stress and you might break..... and I fight every day, every day I fight, because that is what I do, and at the end of the day I tell myself "i can do this tomorrow, I will get up and I will keep on going" because that is what I do, as a mother.
So I try to read, keep up with my recipe book, I blog, I love cooking so I cook everyday, just to have something new everyday to eat, or just to create, and I try to focus on other things besides on focusing on what might happen in the future. I need to relax, and I don't know how.

Tuesday, June 12, 2012

Living with Autsim: School Year Around for kids with Special Needs!!!

Living with Autsim: School Year Around for kids with Special Needs!!!: Yes, I am about to start a freaking petition, and trust me a lot of parents with kids with Autism would totally sign. Not because we want ou...

School Year Around for kids with Special Needs!!!

Yes, I am about to start a freaking petition, and trust me a lot of parents with kids with Autism would totally sign. Not because we want our kids to be taken care by someone else, or we want to be rid of them, NO, is because kids with Autism, and yes, I mean PDD and Asperger's, thrive on schedule and structure, they NEED to have some kind of schedule, that is how they develop faster. Is like if you let their minds rest, they can totally regress and start doing stuff that they were doing two years ago, and as a parent, you feel totally helpless!!
(And that is when the "depression" comes in, the "guilt" the "blame", and everything comes at you at once and then I go and hide for a little while and have a good cry and then I come back stronger than ever, because I put it all aside and keep on going.)
But seriously, these kids need school, they need something to do, as a parent there is so much you can do at home, because at home there are a million and three different distractions and they won't focus as well!! and not only does the child suffer, because they feel out of orbit, but when they try to go back to school or in my case (Group) they are giving the therapists and the teacher a hard time, because at least what I think goes through their mind "so i don't go school any more, I spent two weeks at home, with nothing to do but play, and now you want me to go back to Group time or to school?? why?" and as we as parents of kids with Autism, know that our kids do not think as we do, nor do they comprehend as we do, so we basically just confused the heck out our kids!! and I blame the school system.
I love my son to DEATH!! he is the center of my world.... but am about to tore out my damn hair. I have to think of different tricks to even get him to go out the door of the house so we can go to group. AND i can not do the same trick once, no no no no, because he is so freaking quick (proud mama) and he catches on! Because now he has this thing that he will not go outside, you have to MAKE him. And my son is 5 years old, almost 4 ft and weights between 58 to 60 pounds.... am 5 ft, and that's about it, ain't going to give you the rest! how dare you?! a lady never reveals their AGE! and he is strong, I mean scary I-can't-believe-your-son-is-five-he-must-have-super-powers STRONG... actually his teacher did ask me if i have had tested for super human powers.... yes, right before the MRI.... ok... so I have to wrestle him, to put on the clothes, last time I had to finish putting closes on him in the car because I just picked him and threw him in the car... and I have my arms all bruised, he has bruise (totally afraid of some one calling the cops, not only the bruises but the blood curly screams of terror that he does once I take out a pare of short to put on...) because I have physically wrestle him... but how long can I keep that up for? how long until I say "fuck it" lets not go to group and let you be a wild animal and caged in... but I wake up in the morning, and I totally ignore my twitching eye of anxiety and I do it all over again. Because he needs it, because I need it ( I go to group also every Monday) because after each night that he comes home from group, he is like the perfect little man. I just want the damn school system to work with me!!! 

Monday, June 11, 2012

Living with Autsim: Summer setbacks!!

Living with Autsim: Summer setbacks!!: Ok so its summer, Alex spent two weeks and a half weeks without school nor therapy, I tried to keep him occupied, between taking him to the ...

Summer setbacks!!

Ok so its summer, Alex spent two weeks and a half weeks without school nor therapy, I tried to keep him occupied, between taking him to the park each morning for 2 hours everyday and buying a small pool and trampoline so he can play in the yard.... but now, his having some set backs... he doesn't want to go out, now my son LOVES and I mean LOVES the out doors, more than I can say for myself and my husband lol but he loves the outdoors, he loves being outside and running and wondering and discovering... lately, I go and open his closet which to him it usually means we are going out side "lets get dressed" ... he totally panics, he starts screaming and taking whatever item of clothing that i have in my hand and putting it back in the closet.
To the point that he kicks me out of his room. We are also having set back with his schedule, which to tell you the truth, it was to be expected sense he has no schedule, its summer, so he has no fit schedule and that totally takes him out of his element. Which means he can go to sleep one day at 6 in the afternoon and the next day at 2 in the morning, which he has been doing the later for the past two nights, because he has no schedule.
Again I was ready for that. But still, its hard, for the past two days we both have slept basically only 5 hours a night.

Another unfortunate things is, its summer and people want to go to water parks or go other public places and they invite us, but they don't really know or realize that I can't take Alex every where, I want to, but if is an unfamiliar place with tons of people is a recipe for disaster in our lives and many people, friends and family don't realize what that does to Alex. If his not going to enjoy himself because he is in a strange place with lots of people, then there is no point guys, there really isn't. We know the reality of our lives, we understand who is our son, and am not going to put him in a situation where he might feel stress or totally confuse just to make someone else happy, or make someone else pretend in their miniature little brains that we are "NORMAL" whatever the heck that means. Even before we had Alex I realized that I wasn't normal, am me, unique and extremely sarcastic and anti-social, way before my son was born, you can ask my family... for real.

Part of the reason that I have this blog, is to make people understand that Autism is a real thing. Is something that we have to live with every day of our lives. We live with fear, everyday, my son doesn't speak, my son has no sense of danger, imagine putting my son in a crowded room or in a crowded public place, and I turn my head for one second, just one second, and he freaking runs off and I can't find him, now, how would I find him? he won't be able to tell someone he is lost? he won't be able to call for me... so then what? what do I do then? is not about having a spoiled brat for a kid, or an overly active child, is not, is about having a child with Autism! with real sensory issues and real developmental delays...

Today, I have to physically drag him to the car so he could go to therapy today, and so I could go to therapy today and discuss with therapist the anxiety issues that am having when I have to fight my son physically so he can even get in the car.... and then I have people ask me to go to water parks and other places with lots of people so I can physically wrestle my son to have a good time .... rightttttt!