By now everyone knows I’m an Autism mom. I don’t think everyone connects the full time caregiver with it.
My days start at 5:30 am. I open my eyes and wonder what I will find as I step out of bed. My awake hours are 5:30am-12:30am. So during the 4-5 hrs I may have slept I often find that my son had woken during the night. On some nights he wakes me up, some he doesn’t. Some nights he falls right back to sleep, but that’s often not the case. I can find my kitchen destroyed, full gallons of milk left on the counter, or his bed covered in whatever container of snack foods he has grabbed and taken into his room. His bedding needs pretty much a daily washing along with the full cleaning of his bedroom.
At 6:00 am it’s time to start waking him up. This is usually a 30 min process. I never know how it’s going to work out. Most mornings it’s like poking an angry bear. I schedule in a 30 min waking period for him. Then from 6:30-7:00am it’s a process of getting him in a functional mood. At 7:00 am it’s time for breakfast which is usually a nightmare due to his sensory issues. One morning crunchy cereal can be perfect and the next he can’t handle the way it feels in his mouth. So at least 4 mornings a week I’m scrambling to find something healthy that fits his sensory needs.
Now at 7:30am it’s time to start the process of dressing for school. Once again due to sensory issues there are no tags on any clothing, no buttons or zippers on his pants, and the pants have to be loose enough that they don’t restrict the positions he feels the need to sit or lay in. Some materials are to scratchy. For instance finding a winter coat for him this year was a horrible experience. Some mornings I may even have to change his socks up to 3 times just to find what feels right to him. Mind you through all of this I am also getting a second child ready at the same time. This process can take up to 40mins.
Now I have to have his mood in a good place before the bus arrives. Some mornings this is the biggest challenge of all.
So by 8:30 am most mornings I’m so heartbroken by the challenges and lots of cruel things that have been said by him during his outbursts and his tearful remorse because he didn’t mean the things he said that I may need a good cry or an hour to lay there in complete silence thinking about how maybe tomorrow will go differently. I’m basically doing an hour of therapy in my head so I can get my day started.
I now have about 5 hrs before he returns home. This may sound like a lot of time, but as I mentioned above my ‘to do’ list has already been started and at any moment the school may call and summon me there.
Now is when I can pull out whatever he requested for dinner. Most days he asks for a specific dinner and by the time he gets home his sensory needs have changed and he may not be able to tolerate either the smell, taste, or feeling of it. Then I’m scrambling to come up with something quickly to replace his meal.
I start off with his bedroom because stripping a bed, washing all the bedding, and putting it back on daily is frankly a pain in the ass. I multi task so once I start there I have a million other things going on at the same time. My breaks are when I can actually check my email, bank, pay bills, plan budgets, file paperwork. (the amount of Autism paperwork is incredible)
By now I have about 3 hrs left before his return. I may need to run out for groceries or meds and in that case I have o have someone in my home in case the school calls. Most days I do not even wnt to leave the house as its such a hassle.
Now its 3:45 and his bus arrives bringing him home. He is usually starving as I didn’t even mention above that I have to supply a vast array of food to meet his sensory needs at school. So now we start the dinner ritual. I’m lucky if I get to sit down and eat with the kids. I usually don’t.
After dinner its time to start homework. I have to split the kids up to do this so they can stay focused and I can endure the mental toture that goes along with it.
Now its bathtime and I haven’t even showered myself yet because I might as well just take a bath myself before I get to go to bed.
We can now try to do something together or their father steps in at this point to give me a much needed break. If I take that break then I am losing quality time with the kids and I mentally beat myself up for that.
My wardrobe is casual, comfortable, and usually bleach stained somewhere. So basically if I’m wearing sweats and a T-shirt without a stain then I’m probably leaving the house for something.
Now its about 7pm and we start our bedtime process which usually takes about 3hrs before both children are actually asleep. Once they are finally sleeping I myself can take a bath, put on clean pajamas, and fill out any school forms, check the calendar for the following day, etc.
Now it’s anywhere from 9-11pm so I can actually wach something off the DVR. This is a must have in my house or I would never get to watch tv. I’m usually about 5 episodes behind on anything I really enjoy watching.
Now it’s 12:30am and I am so exhausted, my body hurts, I remember that I either skipped lunch or dinner and that’s why my stomach is rumbling but I’m just to tired to even get back up.
The reason I am even writing this post is because I get really tired of trying to explain why I can’t join something, do something, or its not even worth buying something because I am last on my priority list. No matter what anyone tells me “I should do” I know what it is that I have to do. I live for the weekends and breaks from school. Although it doesn’t change our schedule we can skip a few of the things required of us during the week. So the next time you decide to judge an Autism mom/full time caregiver maybe you should rehink that because that mom probably had one hell of a day!