While there are many less desirable things that come along with a diagnosis of AS, the worst in my household is the sleep issues. Most professionals like to call them "sleep disturbances" but I feel one must actually sleep in order to disturb it. In Will's 40 months here with me I can tell you I have gotten about a week of actual healthy, uninterrupted sleep. Defining "normal sleep" for me is at least 6-7 hours of uninterrupted REM sleep.
Many tell me they could never do it, they have no idea how I do it and, truth be told, it is just a part of life now. It was super hard when he was tiny and I was readjusting to having a newborn at 35, and one that never slept. He didn't scream when he was up (thank God) he just was up. To this day that is the case. He can go from the deadest of sleeps to wide awake and chasing the cat through the house. So I move into the living room, put on 24 hour cartoon channels (thank you to whoever came up with that idea - you have saved my life) and get up with him. I clean or I read or I write or I surf facebook and come up with a million new things I want to do!
Last night, about 2:30, as I sat holding my sweet boy and clapping
A quick wikipedia search of sleep deprivation shows you just how much it can affect you. There are two types, they claim, chronic and acute. I think we may have crossed over to acute a year ago but medical definition states acute is no sleep at all. Chronic sleep deprivation it is. I knew it was affecting me physically and mentally but I had no idea just how much. Sleep deprivation affects your brain, your body, your healing ability, your cognitive process, your overall ability, your mental status, your weight. Everything. So the gaunt face I show the world? The puffy eyes? The sometimes seeming overly emotional reaction to that episode of Dora? My inability to peel myself out of the house to come hang out even though I so badly want to? Let me just apologize now. Being in my life is somewhat of a roller coaster lately :-)
I have options, we always have options in life, but those options include medicating my sweet boy or bringing in respite care or both. The meds at my disposal include, but are not limited to, good old fashioned Benadryl (on doctor order for sleep) or some heavier hitters like klonodine. Now, I know many may disagree with me, but I just can't medicate this boy. He is too young and his inability to tell me exactly how he is feeling makes me nervous to administer a med that can have such a negative or positive affect on him. I will tell you when I am desperate and exhausted and it is clear that falling asleep isn't happening (we go in spurts - he either won't fall asleep, falls asleep for a few hours and then is wide awake or is up and down all night) I will administer Benadryl. This mama needs at least a *few* hours sleep. The recommended dosage, lowest recommended I might add, is 1 tsp. I am such a worrywart he gets 1/4 tsp and it does the trick. Making him pass out is not the equivalent of healthy sleep, to me, and I just worry more that he is still breathing and can't sleep watching his chest move. Lose lose for mom.
Respite care is another option -although I don't really qualify for aid in Lorain county. I fall in that bracket of not poor enough to qualify, not rich enough to afford it, insurance fights it and I have been told, on numerous occasion, my son isn't handicapped enough to qualify for anything. That is a post for another day. So, let's say, I did find someone to provide respite care. In my just over 900 sq ft apartment I hear everything. As a mother, when he is up, I am up. I would need to be able to go to a different part of the house where I couldn't hear him and, well, that ain't happening here (hence part of my need to find a new place with a room for Will, he shares with me now for safety reasons). So that is out for now.
So, until we figure out what the magic combination is that will make Will sleep, or he starts having seizures and I know the sleep deprivation is lethal to seizure status, we are 20+ hour a day people. If you see me and I don't acknowledge you right away, don't take offense, my brain is probably just catching up.