Saturday, March 3, 2012

A Day in the Life with Autism

It was recently brought to my attention that the overwhelming consensus is that people on public assistance are "lazy, eat filet mignon, and have nicer things than "those who put in an honest days work!"" In reply to this, I thought that maybe if people knew what a day in our life was like, they would not feel this way.
Let me start by saying that yes, we are on public assistance. My hubby has a compound fracture of his T11 vertebrae and is currently fighting for his benefits. I was given good cause by the state to stay home with our autistic son because he can not attend school at this time and my hubby is unable to care for him by himself. With that said, here is what a typical day is for me:
5-6 am I get up. I "try" to get in a cup of coffee and some computer time before LJ wakes up. Between 630 and 7 am he usually rises. (this morning however he was up at 3,4 and 5 am) Its pretty much go go go from then on. (right now he is in a daze watching some cartoons, surprising!) He first needs to be taken to the bathroom, (his fear of everything prohibits him from making this venture on his own.) He then needs his chocolate almond milk, and at this time, his dog is bugging to be let out. By now I need a refresher on my coffee, and I quickly finish whatever I was doing on the computer before he was awake. From the time my son's eyes open, so too does his mouth. I am bombarded with questions, what ifs and anything his little mind throws his way. After about 30 minutes I have quieted him down about 5 times (hubby still asleep),and gotten him out of mischief at least twice. Let me interject to say that my son is sneaky. He can NOT be left alone for any period of time without getting into something. He is not your typical kid, and even a trip for me to the bathroom could result in a mess from him when I return. I also don't dare to leave the front door open and him unattended, he will take off into the yard.
Our son has daily appointments for different therapies, so now we prepare for that. I fight with him to get dressed, this could go on for 30 minutes as he hates to wear clothing. I give up for a bit, and I get dressed. He is into my makeup, into the hand soap, into everything! I finally manage to get myself ready. I now tackle him, (literally) get him dressed. Time for breakfast. My son only eats about 10 things, so we go through the list of what we have, and what is acceptable for breakfast. He is indecisive. He fights with me about the options, then after all is said and done, 50% of the time he eats breakfast. Time to brush his teeth. He gags, he cries. Often he is unable to brush them until afternoon or night due to his awful gagging reflex.  Off we go to therapy. He is all over the waiting room. Despite several prompts to get a book and read with mommy, he is still from one thing to the next, often times shoes and socks come off because he can't stand wearing them. I often get burning stares from other patients in the waiting room whom do not know he has ASD.  Appointment is over, time for errands. Forgot my list AGAIN! As I am struggling to remember what we need, my son (who refused the cart because he is a "big boy" and I let him because I was trying to prevent a public melt down) is ALL over the store, touching EVERYTHING!! ( he does this for tactile input) I catch him, more stares from shoppers. He now starts bugging me to buy him something. Because we are on assistance we "live", no SURVIVE off of 400$/month. There is no money to buy him anything, nor extra food money to squander because his gluten free diet is so expensive to maintain. He now starts becoming loud and defiant. I can feel a tantrum/meltdown coming on. More uneducated stares. I try to reason with him, this sometimes works, but not often. If we are at the dollar store I let him pick out something. He chooses something like nail clippers, or a tool he is too young for. I tell  him no, he becomes loud again, more stares. I may or may not manage to get out of the store tantrum free. We now get home, and I realize that in all the commotion with LJ, I forgot what it was I intentionally went to the store for, great! Time for lunch. More whining, more fighting with him on what he can eat. I may or may not manage to get him to eat something. Time for school work. Lj despises his manuscript writing practice, but since his handwriting is atrocious, I make him do it. I have him do this first to get it out of the way. More whining, more arguing, probably a time out of two, until he realizes I am not budging. He finishes that, we move onto lessons. After SEVERAL prompts to focus, we finish. (Yep, you guessed it, by now I am one tired momma) Time for housework! But not without LJ's help. Now, I love that he likes to help, and it is a good learning experience for him. With that being said, it ALWAYS causes me MORE work. He helps with dishes, I now have water EVERYWHERE. He helps me "fold" laundry by unfolding what I have already folded (despite numerous instructions on the correct way to fold), now I must re-fold the clothes. By this time of day, the house is a wreck, his toys are everywhere. Despite even more numerous attempts to get him to pick them up, I settle for helping him just to get it done. After we pick up all his toys, its time to vacuum, this is always a treat. As soon as I turn the vacuum on, LJ covers his ears, and then proceeds to scream OVER the vacuum. Thanks again SPD, because of you, the vacuum hurts his little ears. After all of this, I need a break. Time for LJ to relax for a bit. I find a movie or cartoon he likes, get him some almond milk and we sit together. His mouth still runs non stop, but at least he is not in motion. If I am SUPER LUCKY, we may doze off for about 45 minutes together in the chair. After this time, I let him have some free time on the computer. For the most part he is quiet through this time, unless he needs help. That is until its time for him to get off. Another fight, at least at home there are no disapproving stares. While he was on the computer I was making dinner. 2 dinners that is, because of LJ's sensory processing disorder there are MANY things he can't tolerate to eat, let alone smell. He is unable to sit still long enough to eat with us, or he is gagging/throwing up over the smell of our food. So he often times has to eat in another room. Time for dinner clean up. Now its bath time. More fighting with LJ, this time to wash his hair. He won't sit still, freaks out if the water gets in his face. (Thanks again SPD) After fighting to get it washed and rinsed, time to wash him. Don't dare use a wash cloth, he freaks out from the feel of it. I let him wash himself, then go back and do it, because he still is not good at that. Now, after I have fought to get him in there, I now have to fight to get him out. He's out, running around the house. Tackle him to at least put underpants on and dry him off as best as I can. (He's not a fan of towels either.) Another round to get him to brush his teeth again. This is usually a success but not always with toothpaste, as I have yet to find a flavor he can fully tolerate. More play time, LJ is still off the walls, non stop talking. At 10, 1030 pm we can finally give him his Melatonin. In about 30 minutes he will be out like a light! However, any earlier than this and he is up at 4 am, and I mean up for the day. Now its time for momma to head to bed. Hubby is mad I won't watch a movie with him. Truth be told, I'd be lucky to make it through 5 minutes of it anyway. I may or may not get an uninterrupted night's sleep, its anyone's guess. Either he wakes up from a nightmare, or just his overactive mind and thoughts. When this happens, typically 3-4 times/week, he is up for at least an hour sometimes the rest of the morning, talking. (On this particular morning he has been up at 3, 4, 5 and 6 am, he is now snoozing.) So when I go to bed, I add a good nights sleep into my prayers.
Now, throughout my day, I am also caring for our beautiful puppy LJ calls sissy. I also have to take LJ to the bathroom EVERY time he goes. If he goes number 2, he screams until I can stop what I am doing to go wipe him because he can not stand the feel of poo on him, and he refuses to wipe himself due to his fear of germs. We also can not forget the tantrums/meltdowns. These typically occur on average at least 2-3 times per day. They can last any where from 15 minutes to 30 or so. At this point I feel I am a soldier headed into battle. In attempts to calm him down, it helps to try a restrain him so we can apply mild pressure to him. (again SPD and the proprioceptive input his body craves.) It is in this process that I am often kicked, punched, slapped, even bitten from time to time. ( He once accidentally broke my nose in mid meltdown!) Now, people that are complaining about people like me that are "lazy" would probably say a good spanking or time out would suffice. To this I say, I try it. My 60 pound boy has almost ripped his door off the hinges when in a rage because I have tried to put him in his room. Let me stress, he is NOT a mean or aggressive child by nature, but when in his meltdown stage, his brain tells his body to go into fight or flight mode, at which point my little man will do whatever it takes to get away. "Let him just go," I have been told by parents of neuro typical kiddos. Fine, sometimes that does work, and other times, I can't. I can't for fear he will tear our house down with him. He throws things, often BIG things. Its out of fear for his and our safety that we try to restrain and calm him. (Since getting his weighted blanket from his nana and papa, it has drastically helped in this calming down process.) When its over, we sometimes have to wait until the next day to speak to him about this behavior, because he becomes defensive and it has sparked a whole new meltdown. We are still learning, and trying our best.'ve read first hand what a typical day in the life of autism is. you think I'm lazy??????? If so, please, come replace me for a day. I would love a break and a real chance at being lazy!

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