As I sit inside the oxygen chamber with my son, holding his head up with one hand while he sleeps and holding the oxygen mask over his face with the other hand, I realize this is not what those “normal” parents are doing today, I’m sure of it.
This is just another day in the life of an autism mom!
It’s a lovely Saturday afternoon and I’m jealous that most families are at the park running around, or at a friends house enjoying a barbecue. I, however, am sitting for an hour and fifteen minutes in a very uncomfortable position inside a tiny tunnel, thinking about when my next free minute will be to schedule a chiropractor appointment. We are trying out another autism “treatment’–hyperbaric oxygen therapy (HBOT). I was so glad Keegan fell asleep this time, since I had been unsuccessful getting the oxygen mask on him the 4 previous attempts. I mean, what autistic child with sensory issues would wear an oxygen mask for an hour? Hell, what neurotypical child would? As I hold the mask over his face, I am envisioning him waking up and saying “Hi, mommy”. Something I have never heard him say, and he’s almost 4. I then think about being able to go on a play date like those “normal” moms with “normal” kids. Something I have not been able to successfully and/or joyfully do in the last year. The chamber is said to help increase speech and social skills……2 things Keegan is completely void of.
This hyperbaric oxygen chamber is just one of MANY treatments we have tried in the past year and a half. We have tried everything from chiropractors, diets, supplements and injections, medications, psychiatrists, developmental pediatricians, occupational therapists, speech therapists, the iLS system (music listening system), aromatherapy, floor-time therapy, and Son-rise therapy, just to name a few things. Unfortunately, there is no “cure” for autism yet, but there sure are a lot of expensive theories and ideas that “might” help.
When people ask me what I do all day being primarily a stay at home mom, I can’t help but laugh. I have a “real” job that I work very little hours a month, mainly just to keep employed and sane. But the rest of my time is spent being that “warrior mom”. Most of it is just “typical” mom stuff that any mom would do. But everything is just sort of exaggerated.
First off, I probably didn’t get much sleep because Keegan was likely awake sometime between 3 and 6 AM, and awake for at least an hour and a half. Plus, it took him about 1 hour to even get to sleep initially that night. This is because, unfortunately, “40-80% of autistic children have sleep problems”. So, I start the day tired. After waking a cranky Keegan, I have to give him a somewhat special breakfast because of his “autism diet”, and spend a good amount of time measuring the many supplements that I put into his juice twice a day. Then, when he is in school (for only 3 hrs, mind you), I have to run around and do all the regular “mom” stuff, such as laundry, dishes, grocery shopping, cleaning….blah blah blah. . Also, I try to get an occasional workout and/or shower in there. I know some moms, except for single moms, have their hubbys to help out with some of these daily tasks, but my hubby can’t–he is helping in a different way. He is bringing home the proverbial bacon so I can fry it up in the proverbial pan……the autism pan (see numerous treatments listed above to get an idea of how much bacon we are talking about). He works every day, including most weekends, sometimes 12-13 hour days. So, because I have no family locally, and because I don’t have the heart to bribe my friends to help out, I am left to do it all alone. And did I mention alone? This is all day, everyday. Sure, I’m with my chid, but remember…my child doesn’t speak or understand anything I say (well, I’m told he understands, but just can’t show that he does). It gets really old talking to myself all day.
Anyway, when I pick him up from school, we go straight to a therapy session or 2, then swing by the HBOT place for another treatment (BTW–did I mention he’s supposed to do 40 hyperbaric treatments, 1 hr each, as close together as possible!). Then, when we get home from all of that, its down time. So, you might think this means I get to relax at this time. Yes, to a certain degree. However, with a neurotypical child you can walk off and do your own thing, for the most part. Trust me when I tell you that you usually can’t with an autistic child, at least not with mine. All the “normal” moms are like, “just tell him what not to do and go do your thing”. Lol! Remember, he doesn’t really understand a thing you say (or present as such) so you literally have to watch him as you would a small child. He has poor balance (thanks, autism), so there are always falls. He has this new oral issue (thanks again, autism) and EVERYTHING goes in his mouth. He is considered to be at the 18 month level in certain aspects and areas, so the watchful eye is always needed. He doesn’t understand safety concerns like one of those “normal” children (thanks once again, autism), so jumping face first off of the couch is completely normal for him. And since I’m usually not in the mood to go to the ER, I have to watch him every second. And, at dinner I have to cut up his food in small bites, and sometimes help him with the spoon (there’s autism blessing us again with poor motor skills).
And forget running errands with him. Target or the grocery store is usually the place he decides he wants something that I don’t have, and let’s me and the whole store know it. Yes, I know, all “normal” kids act up in Target too, but it’s a little different when you can’t at least try to reason with him. He doesn’t understand the “if-then” process (thanks one more time, autism), so saying “if you are good, then you will get a lollipop” does not work with an autistic child. At least not with mine.
All moms have it hard, autism ones or not. And, not all autistic children have these same problem areas. I’m just trying to share a few of the differences in my particular life as part of my autism awareness “campaign” (trust me–there are more). I know it sounds like I’m whining and complaining, and yeah, I kinda am. It’s hard. Really hard! But, I do know it could be harder. And, there are actually some positives with the autism process, which I hope to discuss later. People always say, “I don’t know how you do it.” Honestly, sometimes I’m not sure either, but I guess you do what you gotta do when there’s no other choice. Autism is a journey full of ups and downs. The one big ‘up’ is that my son is teaching me how to be a better mom and person.