Last night I finally had some free time to sit down and take a breath. I find in my household summers tend to be very busy as the kids are home, and while we are trying our best to keep them entertained we are certainly not vacationing, in fact, the weekends and vacations tend to be often a lot busier for us than weekdays. I can see it even with cooking. While we aspire to have homemade meals every day, the things usually turn out in such a way that most of the weekends we spend out of the house with our kids, either running errands, or doing activities with them. We, as parents, don’t have a lot of time for ourselves just to sit back and relax, watch a movie some day, or just play computer games to clear the mind.
I find this to be one of the issues for me – I don’t have a lot of time to myself. Every minute I get free from chores I get to work on the blog which may seem like fun, and is for the most part, but still requires “work”, and it is not true relaxing in the full meaning of it. My blogging is my greatest hobby I have ever had, and it is such a fun activity but for a few issues, primarily with technology, for example, this is actually the second time I am typing all this because my computer crashed recently, and all was gone, so here I am typing away what I remember from my first draft.
Anyway, the point is, while kids are our joy and pleasure every minute of the day, they require a lot of work. Some kids come perfect. I once took a train ride home over several days and shared my train compartment with a family with a 2 year old. I think I created more commotion in the compartment than that 2 year old who was quiet as a mouse the whole ride, and I almost didn’t even notice we had a kid in the compartment. My kids are certainly different. We are dealing with minor special needs – primarily with focus and attention difficulties here, very slow processing speed. One of our daughters is “highly capable” which means she does schoolwork one year ahead of her peers. This does not mean though that she is fast – not at all. She is capable of doing work one year ahead of the rest of the peers, and she is very intelligent, however, very slow at her routine tasks. She often requires multiple explanations of how to wash surfaces, get stuck on dirt off surfaces, or even a simple task of taking out the garbage. Just showing her is not enough, everything needs to be explained many, many times over to the point where it doesn’t make sense repeating any more, and just easier to do it myself. The other daughter is not advanced in schooling at this point, but has a lot of anxiety issues, and is practically incapable of doing daily mundane household tasks.
I remember my University teacher talking in disgust about families where beds are not covered every day. Wow, with my family, making beds does not take place – ever! We do activities with our kids and then they just simply run off to the next toy or game, leaving all of the previous mess behind. This is done daily, minute by minute. Our toddler certainly does not help and does not clean. This is not something I am sad, glad, proud of, or stressed about at this point. This is just the raw brunt of my life where I am practically alone doing cleaning and picking up. Our table at restaurants is usually the dirtiest as our kids make such a mess it is not even funny. We try to pick up as much as we can before leaving usually. It is really a tragedy with cleaning, as I simply don’t have the time or the energy to make that effort at night, and so most of the food and mess just stays till the morning, and then I panic.
A lot of our summers are really spent trying to scrub surfaces. While other people are vacationing and relaxing, and posting pictures on their Facebook with palm trees and pools, we are mostly doing household work. Even if we have the whole house team working all day, I don’t think this is humanly possible to keep the house in order, but we are all certainly trying to do our best.
So, with our family we spend a fair bit of time trying to teach our kids certain values in life – hard work, flexibility, being able to be productive and helpful every day. When I ask or explain something to the kids, I often have to do it many times throughout the day, and every process. Today my older daughter was sweeping the floor while I was making their breakfast. It started with her practically barking at me for even asking her to get off her seat. This is quite typical. I asked her to come to me so I could show her where to sweep, so she simply ignored me, and went on sweeping wherever leaving all the mess behind. The next moment she was done and washed her hands. I asked her to bring back the sweeper so that I could show her where I need her to clean, and I mentioned that I have asked her to do this before, but she was not listening to me. She barked again. Then she started listening and cleaning where I showed her, however, dragged the sweeper all over the kitchen with all the other dirt and stuff without collecting it and throwing it out, so she left this trail of dirt behind everywhere. That was the 1000th time she has been cleaning, and she still doesn’t get the basics. This is a child who goes to a regular middle school. I am not complaining here, I am not upset, I am just saying how it is day to day, and why I am not able to have my house clean, ever.
My middle daughter is able to clean only on occasion. Most of the time she is given gloves and shown and told what to do, yet she will just sit and stare at the mess for about 10-20 minutes, and not do any cleaning. It’s like she gets in this zone of not wanting to help out. When she does her activities, the typical picture is a mess left after as she never ever cleans after herself. At this point I am not sure how to instill that habit in her as blackmailing or spoiling does not work, and she simply does not understand what is clean or dirty, how to take care of herself. The only way I know to get this done is by teaching her these skills day by day, slowly, and hoping that something will stick. I don’t think she could live alone, and have a clean house, ever.
I personally think that my kids definitely have some issues with keeping the house in order, keeping themselves clean. I have to manage their showering, and neatness. My daughters see no issue about going to school with dirty and messy hair, wearing pants with holes, and I have to literally persuade them to take this simple self-care seriously. While I don’t dress them head to toe any more, except for my toddler, of course, I do need to manage what they are wearing and when they are showering, as if it were up to them, they would never shower. At this point, getting them diagnosed is not an issue as this will just add to our schedule, and would probably not be particularly useful for their future. Getting them on disability because they don’t clean the house – maybe not. They are able to do somewhat well at school, and so be it. We will leave it at that. I am not sure what medications can cure unwillingness to clean and take care of yourself. There are lots of anxiety issues, but they subside a lot in the summer as there is no schooling to do, so I doubt there is a need to medicate, again.
Here, where we live, diagnosing even the regular old ADD/ADHD presents a problem of documentation, a multitude of appointments, and getting help that costs lots of money. Medications cost money, doctor appointments cost money, and so do many tests and diagnostic procedures. When this is on top of other medical issues like multiple yearly appointments with different specialists, testings, often hospitalizations, figuring out why my kids do not clean and do not wash their hair literally gets swept under the rug most of the time. My family simply cannot afford more doctor visits and appointments over dirty floor. I will probably be doing lots more cleaning in the meantime myself, and at some point may be able to hire some help with cleaning, at least once a month maybe.
So, this is how my day is going – half of the day I breastfeed and cannot do much other than type with one hand, and the rest of the time I clean and cook, and clean and cook some more. The meals often turn one into each other, as when we finish breakfast, it is time to start cooking up lunch, and then get ready with peeling our dinners. Between meals our kids enjoy activities, and then more and more cleaning to do. And this is typical, not only for us, but for most of the families around here. I often meet mothers around here, and the only thing they tend to discuss is how they manage cleaning in their house while they have full-time jobs, or when their kids are home for the summer.
Now, after all of this what I have written, let us imagine a family that has not one, but two small children with autism. Can you possibly imagine what they have to go through on a day-to-day basis? When you cannot leave a child alone for one second to clean vomit from your second baby – how difficult can that possibly be? A lot of the times, when I am stressed out, I repeat to myself my own mantra “God help me get through this, one breath at a time”. Last night I was breastfeeding my baby, while she was sleeping for over 2 hours, and then when she woke up, it was time for dinner, and I so wanted to go to the bathroom, but had to run around the kitchen getting her dinner ready, as she was very upset, and continued with her “aaagh”, “aaaagh” every minute asking for this, that, and the other thing, and being very mad at me. Everyone else in the family was doing their thing – either playing computer games, or working on their computers, that being my husband. If I were to ask them for help, they would simply yell at me, and I am used to that, and that is fine. So, I continued doing it all myself, almost literally going to the bathroom into my pants. I stuck through it, until my baby was happy with the dinner offering, to be able to retreat to the bathroom for half a minute, and relieve myself. TMI, I am sorry, but this is the brunt of life, raw as it is. This is when I was pulling myself into a ball in my head and repeating to myself, “God give me strength, God give me strength”. This is what parenting is – the life of sacrifice. We do it every day whether we are regular parents, or parents with kids with special needs. Family life is not a romantic story happily ever after, but life of sacrifice, and life of selflessness. You have to be able to work hard every minute, and never hope to be rewarded for what you do, because when kids grow up they will have a life of their own, and will have to repeat our path with their own families.
Now imagine what life is like in a family where there are two children with autism, like in this book I am reviewing today. This family has to go through a lot of daily issues, like a lack of sleep, a lack of understanding of what is ahead, and how to deal with this mentally. Here you are, living a life you hoped to have, marrying someone you love, and then getting an orange instead of a bar of chocolate. What do you do with your kids if they are not what you expected? Obviously, you love them, and this book is not about questioning that. But with this unconditional love comes an ocean of responsibility, guilt or lack of understanding feelings, that sometimes may be in the way of being able to cope. I find that myself every day – I can have everything planned, but if I am emotionally drained, I cannot go through with my daily punches. So many days look one like the other, however, every day is different in your emotional journey through it. Sometimes the busiest days can go through in a flash without any issues, and sometimes the most mundane days without even leaving the house may turn into a complete and utter disappointment and failure. This book is about that. How do you speak with God, and go through with your days when you don’t understand your torments that you were thrown into by the bad card your life has given you? How do you wrap your head around the idea that your children are going to be not capable to live on their own ever, and you are their only hope for care, and ability to continue, as long as you can provide that care, and be their rock. This book is easy to read, and it is not very sad. At least I was not sad. I think the reason I was able to read through it without crying too much, was that I connected with this family through reading, and was able to see that they are not truly sad. They find their solace in God and his word, and that is for the most part enough for them to relieve that anxiety, and as I was reading through the book, I got to know that they are accustomed to their life now. They take it day by day with small victories and disappointments, but they are at peace with what they are dealing with, and are ready to serve their family and the God’s will.
I really hope you get to read this book like I did. Here is where to get it – “The Life We Never Expected” by Andrew and Rachel Wilson. The authors wrote the book together, chapter by chapter. You can see how strong their bond is as a family while they are dealing with their day by day routine, and this book is quite inspirational.
I was offered one copy of “The Life We Never Expected” by Andrew and Rachel Wilson to give away on my blog – and so here is the giveaway widget below! This giveaway will run from now until July 16, 2016. One winner will be picked at the end of the giveaway by Gleam widget. This giveaway is open for USA and Canada only. FlyBy promotions will be mailing the prize to the winner, and is responsible for prize fulfillment.
The Life We Never Expected Giveaway
Disclosure (in accordance with the FTC’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising”): Many thanks to Propeller Consulting, LLC for providing this prize for the giveaway. Choice of winners and opinions are 100% my own and NOT influenced by monetary compensation. I did receive a sample of the product in exchange for this review and post.
Only one entrant per mailing address, per giveaway. If you have won a prize from our sponsor Propeller / FlyBy Promotions in the last 30 days, you are not eligible to win. Or if you have won the same prize on another blog, you are not eligible to win it again. Winner is subject to eligibility verification.
Sample of the book was provided for reading and a review. I have not been compensated for this post.
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