I have to admit, I am a HUGE nerd! As a kid I was Princess Leia every Halloween. I love science and geek out often with sci-fi movies and tv shows. Lately I have gotten hooked on a new show on AMC called Humans. The show is all about humanistic androids living amongst us.
While to purchase your own "synth" (what they call the androids) is very expensive and something reserved mainly for the wealthy, they have medical synths that are loaned out to patients needing home health care. As a MOM that relies HEAVILY on nursing care for my daughter, this really gets me thinking.
Now I know, the chances of this type of advancement ever- much less in my lifetime- is slim to none. It is fun to think about though. The insurance companies send out a synth to the patients home. This synth then does EVERYTHING. They have built in technology to monitor vitals, change diapers, suction, do the feeds, push meds, monitor vents, help with baths, do some range of motion, ,they can drive the patient to appointments, they can go the grocery store, they clean the house, cook dinner, they really do everything. The best part- they don't need time off!!!
We LOVE our nurses and honestly I would be lost without them. They all have their own lives though- and that's a good thing. They need time to go home and sleep, see their own families, cook their dinners, take care of their own needs. They also need a break from time to time- AKA- vacation. While we totally understand that this is something they need, we miss them so much while they are gone. If I was working out of the home and had a healthy child, I would take time off and vacations too. I never get angry about this; I really do understand and know I would do the same if I were in their shoes. That being said, I do dread when they take time off.
Many of my friends and family look forward to the weekends, holidays, spring break, etc. I dread them! I know that a holiday means that most likely some if not all of our nurses will take time off. This means that for 24- however many hours until they return it is just my husband and I taking turns sleeping and taking care of our daughter. She requires someone to be alert and watch her 24x7. Usually if there is not a night nurse I stay up all night and then drag my husband out of bed around 6 to take over while I get some sleep. We love our daughter and this is not intended to sound like I am complaining. I am just fantasizing about having a "synth" of our very own.
On nights that the night shift call outs I could charge the "synth" all day and then get some sleep while it takes watch. If my husband is traveling for work and I need to run to the store, but there is not a nurse here to watch my daughter I can either send the "synth" to the store or have it watch my daughter while I go. I would not have to feel guilty about it missing out on it's families events in order to help us celebrate ours.
We have recently been in the process of finding a new night nurse. We have 2-3 nights a week covered consistently, but since May I have been staying up the other 4-5 nights and then sleeping all day. We hope to soon find a good fit to fill these night shifts so that we can get back to living our lives. Sadly I feel we have missed most of our summer already. I sleep all morning while the day nurse (luckily our day nurses have been picking up a lot of extra hours and shifts and our remaining night nurse picks up that extra night as often as she can) is here then get up just in time to shower, eat and do the "must do" items on my list before the day nurse has to leave. We have missed out on lots of swimming, play dates, outings, and even doctor appointments have been getting canceled and rescheduled. On my long night shifts I spend a lot of time fantasizing about having a "synth". Oh to dream! Heck, since I haven't been sleeping much I guess daydreaming is the closest thing I get to real dreams.
So you know what this tired MOM wishes exists to help make my life easier, what types of things to you imagine/fantasize about to help you and your child get through the day?
NOTE- I should point out that in the show they use "synths" for many other non-medical related tasks as well- some that are not appropriate for this blog. So, if you do decide to watch this show and fantasize about your own home health "synth" just a heads up/warning it may not be a show to watch with the kids.
Friday, July 24, 2015
Friday, July 17, 2015
Why my Daughter With Autism Wears her Hair in Cornrows; Even Though WeGet Strange Looks
Our daughter has always marched to the beat of her own drum. From the moment she came to this world we know she was like no other. She brought a strange peace about her, which as long as we could keep her body in balance, maintained. She could swing for hours in her baby swing, just staring at the lights above her. We didn’t know at the time that she had autism. We wouldn’t find out for years to come.
She loved to cover herself in food as a young toddler. A bowl of yogurt would calm her down. She would wear it from head to toe, but washing it off made her angry. We of course couldn’t allow her to walk around coated in yogurt, we had to find other ways to keep her calm.
She always loved it when I would play with her hair, even before she could speak to let me know. The pulling of her hair seemed to calm her. Even when she would let out a grunt to let me know the pony tail was too tight she remained calm, yet she would scream if she touched water as if water were acid burning her skin. None of her body seemed to work the same as ours.
We started off with pigtails, but soon she began pulling them out only to get me to put them back in. We added more and more pony tails. The more she had the more she seemed to calm down. It was then that it hit me, our daughter’s hair being done was what calmed her. She could have it brushed for hours, but really what she liked was the tightness of having it pulled, and so that is when the braiding began.
It amazed me that the same child who could not sit still on the couch long enough to have a shoe put on, or stop herself from shrieking and arching in the car could sit peacefully to have her hair pulled on to be braided, but without question it brought her peace so it brought me peace as well.
She is now seven years old and her braids are now a retreat. There are many reasons why we continue to row her hair “as needed” despite the fact that she faces some adversity at school and in public. Other than the sensory aspect, our daughter thinks her hair is beautiful that way. She loves her friends who wear their hair in braids and rows and though their skin colors may be different shades than hers she does not see the world through the looking glass that is tainted by a soured world that has been created by flawed and tattered patterns of thinking. It has taught her how to stand up for herself. She has learned to speak directly to people to tell them if they do not have something nice to say to her then she would prefer they left her alone.
It stops her from chewing on her hair. As part of her autism, nearly everything goes into her mouth. Her hair is in her mouth nearly constantly. When we take the time to make her hair “beautifully braided” she makes a conscious effort to remind herself to break away from sensory behaviors that are unhealthy.
It teaches her patience. In no way is it a quick and easy hair style. She has learned over the years to sit for longer and longer amounts of time without squirming, even if she stims, she has to hold still enough to get her hair just how she wants it. It has been a wonderful tool in teaching her to learn to feel her body and be able to control its motions.
It helps us spend time together in a positive way. It helps us connect. Human connection on a personal level is not always easy for a child with autism. The more times she sits for braids, the more I get to learn about her. Her body is nearly always busy, and when it isn’t she prefers to be alone. This gives us a wonderful opportunity for positive connection.
To be honest when she was just a bitty bald thing swinging away staring at her mobile this is the last thing I thought I would be doing seven years later, but this is what mothers do; anything in their power to make a positive connection with their child, to help them thrive and grow. Be it cornrows or ballet a mom’s got to do what a mom’s got to do.
She loved to cover herself in food as a young toddler. A bowl of yogurt would calm her down. She would wear it from head to toe, but washing it off made her angry. We of course couldn’t allow her to walk around coated in yogurt, we had to find other ways to keep her calm.
She always loved it when I would play with her hair, even before she could speak to let me know. The pulling of her hair seemed to calm her. Even when she would let out a grunt to let me know the pony tail was too tight she remained calm, yet she would scream if she touched water as if water were acid burning her skin. None of her body seemed to work the same as ours.
We started off with pigtails, but soon she began pulling them out only to get me to put them back in. We added more and more pony tails. The more she had the more she seemed to calm down. It was then that it hit me, our daughter’s hair being done was what calmed her. She could have it brushed for hours, but really what she liked was the tightness of having it pulled, and so that is when the braiding began.
It amazed me that the same child who could not sit still on the couch long enough to have a shoe put on, or stop herself from shrieking and arching in the car could sit peacefully to have her hair pulled on to be braided, but without question it brought her peace so it brought me peace as well.
She is now seven years old and her braids are now a retreat. There are many reasons why we continue to row her hair “as needed” despite the fact that she faces some adversity at school and in public. Other than the sensory aspect, our daughter thinks her hair is beautiful that way. She loves her friends who wear their hair in braids and rows and though their skin colors may be different shades than hers she does not see the world through the looking glass that is tainted by a soured world that has been created by flawed and tattered patterns of thinking. It has taught her how to stand up for herself. She has learned to speak directly to people to tell them if they do not have something nice to say to her then she would prefer they left her alone.
It stops her from chewing on her hair. As part of her autism, nearly everything goes into her mouth. Her hair is in her mouth nearly constantly. When we take the time to make her hair “beautifully braided” she makes a conscious effort to remind herself to break away from sensory behaviors that are unhealthy.
It teaches her patience. In no way is it a quick and easy hair style. She has learned over the years to sit for longer and longer amounts of time without squirming, even if she stims, she has to hold still enough to get her hair just how she wants it. It has been a wonderful tool in teaching her to learn to feel her body and be able to control its motions.
It helps us spend time together in a positive way. It helps us connect. Human connection on a personal level is not always easy for a child with autism. The more times she sits for braids, the more I get to learn about her. Her body is nearly always busy, and when it isn’t she prefers to be alone. This gives us a wonderful opportunity for positive connection.
To be honest when she was just a bitty bald thing swinging away staring at her mobile this is the last thing I thought I would be doing seven years later, but this is what mothers do; anything in their power to make a positive connection with their child, to help them thrive and grow. Be it cornrows or ballet a mom’s got to do what a mom’s got to do.
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