If you are a caregiver, you will know where I am coming from when I say that I am so very tired today. We have all had those rough weeks with those we take care of. For me, I’m dealing with the boy soaking the bed and then waking up at around 1am for the last week. I hear him in his bedroom giggling manically and I have to get up right away. I need to change the bed, him and then go through our nighttime essential oils routine again. If I don’t, if I miss the window of opportunity he will be up for the rest of the night instead of just a few hours. That could mean the difference between 2 hours sleep and 4 hours sleep for me, so I hop up as soon as I hear him. Usually I am lucky and he wakes up after Hubby is home from work and he can take care of it for me. Hubby is so wonderful in that he will get up with the boy instead of having me do it. I still have to be alert, but it’s different when you don’t have to get out of bed. I don’t know how I would be able to survive if he didn’t take the brunt of it most of the time. This week was really rough since the boy decided to wake at 1 instead of 2. Hubby isn’t home until 2. No knight in shining armor to save my butt this week.
Oh man, am I tired.
I’m living off of coffee and protein powder because I am so overwhelmed with the craziness of the day. Yup, some days I’m mixing them to save time too!! Here are a couple of recipes if you are having this kind of crazy week too. You have to remember to feed yourself. No matter how rough it gets, you need your strength. You never know how long this season in your life will last and you never know when your body will say that it has had enough. Please, take care of yourself if for no other reason than your child needs you. You do matter.
Okay, I’m off my soapbox 😉
Bottom line is I am washing clothes and sheets and blankets and mattress pads like crazy. The boy wets the bed, I change it all and than he still wakes up wet in the morning. Everything is soaked, blankets and all. Thankfully I use Thieves laundry soap and I don’t have to rinse the pads of excess urine and I don’t even need to add vinegar to kill the germs or the smell. Thank God for small favors cause a 10 year old boy can pee a LOT! Did I mention my dryer is busted and it has been raining most of the week too? And he refuses to wear Good Nights or any other similar diaper type underwear to bed so I have no better solution then to continue on this path until it runs its course? Did I mention that I am oh so very tired?
The toughest part is that I can’t just get up, take care of the wet mess and put him back to bed. I have to make sure I stay awake until the boy falls back to sleep. If I don’t, he may decide to get up and wander around the house. Who knows what he could get into without anyone watching. He might even slip out the front door. Could you imagine waking up in the morning to find that your child was missing from his bed because he decided to leave? My grandfather had Alzheimer’s and used to wander in the middle of the night. It was horrible. With Autistic kids they call it ‘eloping’. I really can’t stand that term. I don’t much care for the ‘wandering’ term either. These kids don’t just meander off. These kids BOLT in an instant. One second they are there and the next they are nowhere to be found. Lord help you if you are alone because you can only check one direction at a time and chances are that you will go the wrong way first, giving the child that much longer to run off to whatever they were running off to or away from whatever they were trying to get away from.
Didn’t you know? Autistic children might be running to something that they want, but they could also be running away from something that bothered them – and how are you to know?? You don’t. You just hope for the best and run as fast as you can, hopefully sending every available body in every possible direction to try to catch the child before they find a busy street or body of water that could end in disaster.
Fencing is no match
Locks are a joke
Calling out their name is only going to make you feel better because the kid isn’t going to answer you
Out of every fear I have – this is my worst nightmare. Thankfully the boy doesn’t run off like he used to. Thankfully we are a lucky family that has a child that usually respects locks and boundaries. Unfortunately all bets are off if the boy is running FROM something. If he is scared, he just runs. And he runs faster than me. If he doesn’t listen to me holler stop then I am out of luck because I can barely keep up. A dear friend of mine actually had the authorities called on her and her family because her child kept running off. She had been begging anyone who would listen to help them keep her child safe to no avail. All the agencies out there that were supposed to offer help were failing her and her family. Finally child services showed up. Someone had reported the family. Child services had no clue how to help. They told her to lock the doors. Yeah, they are and her child didn’t respect the locks. If the child couldn’t get the door open then the window was used instead. I’ve said it before and I’ll say it again, Autistic kids are fast. Autistic kids aren’t stupid and can’t be easily fooled.
So I stay awake to hear him if he wakes at night because you never know when he might be freaked out by something and want to run. We hold him tight in public and make sure he has the essential oils he loves. We usually use his adaptive wheelchair to help keep him safe if we can. It took 3 years to get the chair – my heart goes out to all of you still waiting. I feel your pain and frustration.
There has to be a better way than this. There has to be a better system.
I refuse to believe that this is the best we can do for our Autistic family members.