One of the most difficult aspects of having an autistic child for me, is admitting that sometimes I need a break from my autistic child. It took reading a lot of other peoples blogs, and having Regional Center case workers, teachers, and friends telling me that I need to take a break, to accept that I do in fact need to take a break. On top of that, I am an introvert, which despite what some people think, does not mean I hate people (well, not all people). It means that I recharge my emotional batteries alone. Extroverts recharge their emotional batteries around people. It has nothing to do with being shy or social either. There can be shy extroverts and social introverts. It just has to do with how people recharge and refresh. It becomes very complicated though, because as a parent I feel guilty for feeling like I need time away from my children. It makes me feel like I am putting my own needs above his. Then there is the fact that I have a second child that would like some one on one time with his dad, and deserves that time. As of very recent, the Regional Center has allotted me 16 hours a month of time that I can use to get a break from my autistic child, it is called rest-bit. I am in the process of getting one of my nannies signed up for it, so she can start watching Holden for 16 hours a month, paid for by Regional Center. I can not use that time for childcare while I work, it has to be for leisure time.
One of my pet projects, is talking to the neurotypical siblings of special needs kids, in the attempt to better serve Zane’s needs. What they all say, is that it is the time that their parents made for them, that made all the difference in the world, for them. Their parents taking the time, to set time aside for them! Last school year I was doing this out of pocket on Thursdays. Zane and I would spend 4 hours away from Holden, doing what Zane wanted to do, for a change. Unfortunately I couldn’t afford to keep this up. This year, I intend to use my Rest-bit time to reinstate the important one on one time with Zane. Four hours a week is honestly not a lot of time, but I think that it creates two things for Zane. One, it gives him the sense that his needs are important to me. It also gives him an opportunity to chose how to spend that time, which I think will help teach him time management. The second thing it gives him, is something to look forward to, and plan around, the rest of the week. I think these are both two very important things for Zane, and I am very grateful that the Regional Center appreciates the need for that time.
As for me, I try to use my weekdays off of work to find a little time for myself, while the boys are in school. Unfortunately there are a lot of outward forces working against that. For one thing I have shopping, cleaning, and laundry to do. I also have meetings for Holden that usually get scheduled on those days as well. As well as other things that are out of my control. I confess I long for those moments because they don’t only help me, but they help me be a better parent to my two boys. They are also guilt free moments, because the boys are in school. Nothing makes me feel guilty more then losing my patients with the boys, and it certainly happens. I think at times we have to look at it from the stewardess’ perspective. “In the unlikely event of cabin depressurization, oxygen masks will drop from the ceiling. Place the mask over your mouth, the bag will not inflate, but oxygen will flow through. If you are travelling with children, secure your own mask first!” Secure your own mask first! Why? Because we are no damn good to our kids if we are dead! We are no damn good to our kids if we are in the nut house, drooling on ourselves, playing with our own excrement, in a padded room. We are no good to our kids if we are rocking back in fourth in the corner, hugging our knees, talking to ourselves. Not everyday is a depressurized cabin on a plane, but then a depressurized cabin on a plane probably happens over a long period of time. That despite safety checks, and scheduled maintenance, things can go wrong. Sometimes, it’s little things, over time, that build and build until our brain loses cabin pressure, and it’s our soul that finally tears from being weakened. So it’s important that we try to maintain cabin pressure in our lives, and find the time to conduct scheduled maintenance, and know that even when we do everything possible to prevent sudden cabin pressure loss, things are going to come up, and they will affect us. None of us honestly have the time to conduct regular maintenance on ourselves, but we need to understand ourselves well enough, so that we know what is going to for sure cause sudden cabin pressure loss, that way when those things we didn’t expect come along, we are not already at the bursting point. I am a single parent, with an autistic child and a neurotypical child, there is no time for scheduled maintenance, so I really try to know myself, and trust to know myself well enough, so that no oxygen masks are going to be dropping from the ceiling anytime soon. However, I don’t have control over, well . . . anything. Life is not a model, life is not in a vacuum, and we can’t predict anything. When you add outward forces that are completely indifferent to you and your cabin pressure issues, well lets just say you have to be ready to accept that life is going to throw everything it can at you! And if it doesn't, thank who ever you thank that night, get some sleep, because you know you will be flying the friendly skies again tomorrow!
One of my pet projects, is talking to the neurotypical siblings of special needs kids, in the attempt to better serve Zane’s needs. What they all say, is that it is the time that their parents made for them, that made all the difference in the world, for them. Their parents taking the time, to set time aside for them! Last school year I was doing this out of pocket on Thursdays. Zane and I would spend 4 hours away from Holden, doing what Zane wanted to do, for a change. Unfortunately I couldn’t afford to keep this up. This year, I intend to use my Rest-bit time to reinstate the important one on one time with Zane. Four hours a week is honestly not a lot of time, but I think that it creates two things for Zane. One, it gives him the sense that his needs are important to me. It also gives him an opportunity to chose how to spend that time, which I think will help teach him time management. The second thing it gives him, is something to look forward to, and plan around, the rest of the week. I think these are both two very important things for Zane, and I am very grateful that the Regional Center appreciates the need for that time.
As for me, I try to use my weekdays off of work to find a little time for myself, while the boys are in school. Unfortunately there are a lot of outward forces working against that. For one thing I have shopping, cleaning, and laundry to do. I also have meetings for Holden that usually get scheduled on those days as well. As well as other things that are out of my control. I confess I long for those moments because they don’t only help me, but they help me be a better parent to my two boys. They are also guilt free moments, because the boys are in school. Nothing makes me feel guilty more then losing my patients with the boys, and it certainly happens. I think at times we have to look at it from the stewardess’ perspective. “In the unlikely event of cabin depressurization, oxygen masks will drop from the ceiling. Place the mask over your mouth, the bag will not inflate, but oxygen will flow through. If you are travelling with children, secure your own mask first!” Secure your own mask first! Why? Because we are no damn good to our kids if we are dead! We are no damn good to our kids if we are in the nut house, drooling on ourselves, playing with our own excrement, in a padded room. We are no good to our kids if we are rocking back in fourth in the corner, hugging our knees, talking to ourselves. Not everyday is a depressurized cabin on a plane, but then a depressurized cabin on a plane probably happens over a long period of time. That despite safety checks, and scheduled maintenance, things can go wrong. Sometimes, it’s little things, over time, that build and build until our brain loses cabin pressure, and it’s our soul that finally tears from being weakened. So it’s important that we try to maintain cabin pressure in our lives, and find the time to conduct scheduled maintenance, and know that even when we do everything possible to prevent sudden cabin pressure loss, things are going to come up, and they will affect us. None of us honestly have the time to conduct regular maintenance on ourselves, but we need to understand ourselves well enough, so that we know what is going to for sure cause sudden cabin pressure loss, that way when those things we didn’t expect come along, we are not already at the bursting point. I am a single parent, with an autistic child and a neurotypical child, there is no time for scheduled maintenance, so I really try to know myself, and trust to know myself well enough, so that no oxygen masks are going to be dropping from the ceiling anytime soon. However, I don’t have control over, well . . . anything. Life is not a model, life is not in a vacuum, and we can’t predict anything. When you add outward forces that are completely indifferent to you and your cabin pressure issues, well lets just say you have to be ready to accept that life is going to throw everything it can at you! And if it doesn't, thank who ever you thank that night, get some sleep, because you know you will be flying the friendly skies again tomorrow!
By the way dear readers, this section is called the comments area, please feel free to use it ;).
ReplyDelete