Well, this month's fast of social media has lifted an invisible load from my shoulders and refreshed my focus in many ways. I highly recommend such a fast to anyone feeling overwhelmed and over scheduled as it helps to take that one thing out of view in order to focus on that which is most needed.
Honestly, I don't know if this blog will speak to anyone, but I'm hoping that it will give a better insight into what some people may struggle with. Do you know someone with a special needs' kiddo? If so, please read on. There's NOTHING you can DO to help them, nor do they likely want help. What we DO want is understanding and respect. Understanding comes best from clearly seeing what these families face and respect comes from understanding that these families are addressing the needs of their family according to skills with which God has equipped them. Respect, therefore, comes from understanding that unless you've walked 10 feet in their shoes (forget a mile, you'd never probably last that long), then you can offer them no advice and therefore should definitely not offer judgement.
Here's a typical day in Wade's World:
We all know when he's awake because that's when he begins to make noise. Odd, senseless sing-song noises that aren't quite loud, but definitely not quiet. This begins the moment his eyes open. He remains in bed for as long as half an hour, all the while making this noise. This can be as early as 5:00 or as late as 9:00am. So, for me to have any quiet-time in the morning, it's a gamble as to how early I need to arise.
Once he decides to get out of bed, the noise continues and the levels are now raised as he doesn't merely walk out of his room. Rather, he does this sort of shuffle-stomp thing as if his legs won't quite bend properly and comply with the simple task of walking softly. Oh, and his head is usually wobbling from side to side as well, further enhancing the drama of waking up, as if nobody else has ever done this before, including himself. (you're probably laughing a little now if you know Wade, because you can actually picture this attention-getting sort of behavior)
He shuffle-stomps/wobble-heads out of his room and into the living room, only to fish-flop onto the sofa, because, once again, he is tired upon rising in the morning. He then begins his morning stretching routine which involves moaning and using as much space as humanly possible. If others are awake and would like to sit down, there's precious little room because if he's not taken the entire couch, he has sprawled out in the middle of the floor, covering the entire living room! (are you tired yet? If not, just wait) He's now been up for less than 45 minutes.
His hunger first thing in the morning varies, and apparently it is my responsibility to anticipate his hunger level, taste, and needs of the day, each and every day, whether I'm up before him or not. If I suggest too soon that we have breakfast, I'm met with an emphatic, "WHAT?!! I JUST got UP! You expect me to eat when my stomach is not even awake??!!!" If he's hungry immediately and I tell him to just give me a few minutes, I get accused of wanting him to die of starvation, never willing to feed him when he's hungry. It's still only about 45 minutes into his day.
Once the breakfast drama is out of the way, and his medication is given (ALWAYS a priority), I have to be quick about suggesting schoolwork for the day. IF he's willing, he'll dive right into it. If not, I'm accused of being a slave-driver, never giving him a break or a chance to play, or pretty much anything of the sort. Again, I've got to anticipate his moods. . . it's now been just over an hour.
Tired yet? Cause by 10:00am, I'm worn out, ready for a nap at least emotionally.
Once we conquer school work for the day, he gets some free time. Sometimes he uses it wisely, sometimes, not so wisely. It's in the not-so-wise moments that he believes that this time he can get into his siblings' things, play with them and not get caught. But remember, Wade is a LOUD child, so silence from him, even in free time, is cause for alarm. Of course, he's always surprised that I know what he's doing.
So far, this may not seem too bad. And really, if this was all there was to it, I'd have to agree. Except, this isn't all there is to it. Far from it, in fact. Remember, a lot of this depends upon Wade's mood, and it's Wade's mood that can change the dynamics of the entire household in a matter of minutes. . .
If, for example, we need to go somewhere, but Wade is in the middle of something, he'll drag his heels in getting ready. Suddenly, his shoes were maliciously taken by one of his siblings and hidden in some unknown place, never to be seen again, because everyone is pitted against him. This is assumed because when Wade walks into his room, those shoes are not in the exact spot his eyes happen to fall. Therefore, it MUST be a conspiracy!!!
I know, I know, this sounds like "typical" kid behavior. But believe me, this is anything but typical. In fact, I would have to say that if an adult were behaving the way Wade does much of the time, one would consider it emotional abuse towards whomever that behavior was aimed.
Before I pulled him out of public school, I would endure about an hour and a half of verbal regurgitation EVERY day when I picked him up from school. If the Capri Sun's straw was missing or damaged from his lunch that day, it was because I didn't want him to have anything to drink, in fact, I wanted him to die of thirst in school. If he didn't get something finished in class, it was my fault because I washed my hair that day or something else completely unrelated that popped into Wade's head, and he was upset about. Now, when I say verbal regurgitation, I'm not just talking about complaining. There would be thrashing involved. Wade would literally thrash his body around in the car, while yelling at me about what a blankety-blank kind of mom I was, all the reason for his not doing well in school . . . oh, and then he'd have home work . . .
As the evening progresses and it's time to get ready for bed, the nighttime battle begins. Oh, he'll get his pajamas on and brush his teeth just fine, but the staying-in-bed thing is something he has yet to master. Suddenly, when required to turn in for the night, his bladder fills to explosive proportions, and not just once, but at least four times over the first couple of hours. Perhaps in response to this, he's likely to die of thirst in between trips to the bathroom, and CANNOT possibly be expected to sleep with such a dry throat!!! You're probably thinking that as parents, we should simply ________ (not let him get a drink, make sure he takes a drink and goes to the bathroom before bed, etc) fill in with your best parenting advice there. But, Wade is not a typical child; therefore his requests are not typical, nor do they elicit typical responses that can be dealt with. If Wade gets it in his head that he WILL die of thirst and we do NOT care, then all Hell will break loose, and I, once again, will get an emotional, verbal beating. As parents, we pick our battles. I ask you to consider what you REALLY would do in this battle? The best thing we've found is to remain calm, so that he will remain calm, redirect him to that which he's supposed to do (GO TO BED, GO TO SLEEP), and keep him calm the whole time. If he doesn't remain calm, he begins to "spiral" up into a wound-up Tasmanian Devil sort of behavior that disrupts the entire household for much longer than the two hour up-and-down act that Wade does . . .
Now, if Wade were my only child, this would taxing, but I would have the time and more energy to address things properly. He is NOT my only child, however, and what is taxing at best, now becomes a daily beat down. Honestly, most of the time I feel defeated before my feet ever hit the ground in the morning.
My days consist of trying to do the BEST for all my kids (like all moms, of course) while addressing the special needs' of Wade and helping my other children to not further aggravate Wade but to HOPEFULLY (this is THE goal here) help them better understand Wade and therefore have a more tender understanding towards those people different from them.
Wade has no understanding of propriety in social settings. If he gets upset, he'll act on it instantly and impulsively, whether at home or in public. It is for THIS reason that I'm sharing this SMALL insight into the special needs' family.
When Wade acts out in a more public setting, the first thing that happens is that EVERYONE feels uncomfortable. I feel embarrassed, because of the way my child is acting (after all, he's almost 11 years old, but he's acting like a three-year-old)! His siblings get embarrassed, and feel bad for mom, because most of the time, Wade's anger is directed toward me. And others get uncomfortable, and then give me "that look" . . . you know the one. The "look" that says "if that were MY kid, I'd do such-and-such" . . . Wade, all the while only feels what he feels in the moment; there's no embarrassment for him.
I've had to physically restrain him and carry him to the car, while relying on my older children to help with the others, in an attempt to get Wade home so that he (and I) can calm down and properly address whatever needs to be addressed. Embarrassment doesn't even begin to cover my feelings. But, more than embarrassment, despair and a wanting to know WHAT to do!!!??? Well, since we've figured out WHAT Wade's issues are, I'm happy to say that knowing WHAT to do is becoming less murky, almost clear. But, it's still difficult. Over the last few years, I've become an emotional punching bag for this kid, and I'm feeling the internal injuries, hoping they'll heal and strengthen us all.
Why am I sharing this? Do I want sympathy? HECK NO!! I love Wade, that will NEVER change!!! I'm sharing this because unless you live this, you have no idea what it looks like. Many people romanticize special needs and I have to admit, there ARE positives to having a child who's world perspective challenges yours, causes you to see life differently. However, there is a physical and emotional DRAIN that can be consuming, and THAT is what people don't often realize.
Many people laugh when I talk about some of the things Wade does, his reactions to things or his unique perspective. In fact, we often refer to these as "Wadeisms" because they really do (eventually) make us smile. Many of these are humorous, in a joy-bringing kind of way, rather than a malicious, let's-make-fun-of-him sort of way, you know? But, these things often come after an emotional battle of unparalleled proportions. I love that there are people that can help me see the humor in all of this. But, there is also a need for people to see the reality in all of it as well.
If you know a special needs' family, don't assume that you KNOW a special needs' family. Don't offer them your "expertise" unless they ask for that expertise, and DO NOT JUDGE their parenting techniques, or their decisions concerning schooling, working/staying home, therapy, dietary approaches, or anything of the like. There is nothing you can DO, but you can BE a friend. Don't feel sorry for them, they're not sorry for their situation. It's difficult, grueling and taxing, yes, but not impossible. They are (I am, we are) fully equipped to deal with the situation, according to God's grace. It's just that in these families, the highs can be a little higher and lows a little lower. Respect them for what they do, because if I know anything it's this: just as in your family, every decision made is done so in LOVE.
This is Trish, stepping off her soapbox.
Honestly, I don't know if this blog will speak to anyone, but I'm hoping that it will give a better insight into what some people may struggle with. Do you know someone with a special needs' kiddo? If so, please read on. There's NOTHING you can DO to help them, nor do they likely want help. What we DO want is understanding and respect. Understanding comes best from clearly seeing what these families face and respect comes from understanding that these families are addressing the needs of their family according to skills with which God has equipped them. Respect, therefore, comes from understanding that unless you've walked 10 feet in their shoes (forget a mile, you'd never probably last that long), then you can offer them no advice and therefore should definitely not offer judgement.
Here's a typical day in Wade's World:
We all know when he's awake because that's when he begins to make noise. Odd, senseless sing-song noises that aren't quite loud, but definitely not quiet. This begins the moment his eyes open. He remains in bed for as long as half an hour, all the while making this noise. This can be as early as 5:00 or as late as 9:00am. So, for me to have any quiet-time in the morning, it's a gamble as to how early I need to arise.
Once he decides to get out of bed, the noise continues and the levels are now raised as he doesn't merely walk out of his room. Rather, he does this sort of shuffle-stomp thing as if his legs won't quite bend properly and comply with the simple task of walking softly. Oh, and his head is usually wobbling from side to side as well, further enhancing the drama of waking up, as if nobody else has ever done this before, including himself. (you're probably laughing a little now if you know Wade, because you can actually picture this attention-getting sort of behavior)
He shuffle-stomps/wobble-heads out of his room and into the living room, only to fish-flop onto the sofa, because, once again, he is tired upon rising in the morning. He then begins his morning stretching routine which involves moaning and using as much space as humanly possible. If others are awake and would like to sit down, there's precious little room because if he's not taken the entire couch, he has sprawled out in the middle of the floor, covering the entire living room! (are you tired yet? If not, just wait) He's now been up for less than 45 minutes.
His hunger first thing in the morning varies, and apparently it is my responsibility to anticipate his hunger level, taste, and needs of the day, each and every day, whether I'm up before him or not. If I suggest too soon that we have breakfast, I'm met with an emphatic, "WHAT?!! I JUST got UP! You expect me to eat when my stomach is not even awake??!!!" If he's hungry immediately and I tell him to just give me a few minutes, I get accused of wanting him to die of starvation, never willing to feed him when he's hungry. It's still only about 45 minutes into his day.
Once the breakfast drama is out of the way, and his medication is given (ALWAYS a priority), I have to be quick about suggesting schoolwork for the day. IF he's willing, he'll dive right into it. If not, I'm accused of being a slave-driver, never giving him a break or a chance to play, or pretty much anything of the sort. Again, I've got to anticipate his moods. . . it's now been just over an hour.
Tired yet? Cause by 10:00am, I'm worn out, ready for a nap at least emotionally.
Once we conquer school work for the day, he gets some free time. Sometimes he uses it wisely, sometimes, not so wisely. It's in the not-so-wise moments that he believes that this time he can get into his siblings' things, play with them and not get caught. But remember, Wade is a LOUD child, so silence from him, even in free time, is cause for alarm. Of course, he's always surprised that I know what he's doing.
So far, this may not seem too bad. And really, if this was all there was to it, I'd have to agree. Except, this isn't all there is to it. Far from it, in fact. Remember, a lot of this depends upon Wade's mood, and it's Wade's mood that can change the dynamics of the entire household in a matter of minutes. . .
If, for example, we need to go somewhere, but Wade is in the middle of something, he'll drag his heels in getting ready. Suddenly, his shoes were maliciously taken by one of his siblings and hidden in some unknown place, never to be seen again, because everyone is pitted against him. This is assumed because when Wade walks into his room, those shoes are not in the exact spot his eyes happen to fall. Therefore, it MUST be a conspiracy!!!
I know, I know, this sounds like "typical" kid behavior. But believe me, this is anything but typical. In fact, I would have to say that if an adult were behaving the way Wade does much of the time, one would consider it emotional abuse towards whomever that behavior was aimed.
Before I pulled him out of public school, I would endure about an hour and a half of verbal regurgitation EVERY day when I picked him up from school. If the Capri Sun's straw was missing or damaged from his lunch that day, it was because I didn't want him to have anything to drink, in fact, I wanted him to die of thirst in school. If he didn't get something finished in class, it was my fault because I washed my hair that day or something else completely unrelated that popped into Wade's head, and he was upset about. Now, when I say verbal regurgitation, I'm not just talking about complaining. There would be thrashing involved. Wade would literally thrash his body around in the car, while yelling at me about what a blankety-blank kind of mom I was, all the reason for his not doing well in school . . . oh, and then he'd have home work . . .
As the evening progresses and it's time to get ready for bed, the nighttime battle begins. Oh, he'll get his pajamas on and brush his teeth just fine, but the staying-in-bed thing is something he has yet to master. Suddenly, when required to turn in for the night, his bladder fills to explosive proportions, and not just once, but at least four times over the first couple of hours. Perhaps in response to this, he's likely to die of thirst in between trips to the bathroom, and CANNOT possibly be expected to sleep with such a dry throat!!! You're probably thinking that as parents, we should simply ________ (not let him get a drink, make sure he takes a drink and goes to the bathroom before bed, etc) fill in with your best parenting advice there. But, Wade is not a typical child; therefore his requests are not typical, nor do they elicit typical responses that can be dealt with. If Wade gets it in his head that he WILL die of thirst and we do NOT care, then all Hell will break loose, and I, once again, will get an emotional, verbal beating. As parents, we pick our battles. I ask you to consider what you REALLY would do in this battle? The best thing we've found is to remain calm, so that he will remain calm, redirect him to that which he's supposed to do (GO TO BED, GO TO SLEEP), and keep him calm the whole time. If he doesn't remain calm, he begins to "spiral" up into a wound-up Tasmanian Devil sort of behavior that disrupts the entire household for much longer than the two hour up-and-down act that Wade does . . .
Now, if Wade were my only child, this would taxing, but I would have the time and more energy to address things properly. He is NOT my only child, however, and what is taxing at best, now becomes a daily beat down. Honestly, most of the time I feel defeated before my feet ever hit the ground in the morning.
My days consist of trying to do the BEST for all my kids (like all moms, of course) while addressing the special needs' of Wade and helping my other children to not further aggravate Wade but to HOPEFULLY (this is THE goal here) help them better understand Wade and therefore have a more tender understanding towards those people different from them.
Wade has no understanding of propriety in social settings. If he gets upset, he'll act on it instantly and impulsively, whether at home or in public. It is for THIS reason that I'm sharing this SMALL insight into the special needs' family.
When Wade acts out in a more public setting, the first thing that happens is that EVERYONE feels uncomfortable. I feel embarrassed, because of the way my child is acting (after all, he's almost 11 years old, but he's acting like a three-year-old)! His siblings get embarrassed, and feel bad for mom, because most of the time, Wade's anger is directed toward me. And others get uncomfortable, and then give me "that look" . . . you know the one. The "look" that says "if that were MY kid, I'd do such-and-such" . . . Wade, all the while only feels what he feels in the moment; there's no embarrassment for him.
I've had to physically restrain him and carry him to the car, while relying on my older children to help with the others, in an attempt to get Wade home so that he (and I) can calm down and properly address whatever needs to be addressed. Embarrassment doesn't even begin to cover my feelings. But, more than embarrassment, despair and a wanting to know WHAT to do!!!??? Well, since we've figured out WHAT Wade's issues are, I'm happy to say that knowing WHAT to do is becoming less murky, almost clear. But, it's still difficult. Over the last few years, I've become an emotional punching bag for this kid, and I'm feeling the internal injuries, hoping they'll heal and strengthen us all.
Why am I sharing this? Do I want sympathy? HECK NO!! I love Wade, that will NEVER change!!! I'm sharing this because unless you live this, you have no idea what it looks like. Many people romanticize special needs and I have to admit, there ARE positives to having a child who's world perspective challenges yours, causes you to see life differently. However, there is a physical and emotional DRAIN that can be consuming, and THAT is what people don't often realize.
Many people laugh when I talk about some of the things Wade does, his reactions to things or his unique perspective. In fact, we often refer to these as "Wadeisms" because they really do (eventually) make us smile. Many of these are humorous, in a joy-bringing kind of way, rather than a malicious, let's-make-fun-of-him sort of way, you know? But, these things often come after an emotional battle of unparalleled proportions. I love that there are people that can help me see the humor in all of this. But, there is also a need for people to see the reality in all of it as well.
If you know a special needs' family, don't assume that you KNOW a special needs' family. Don't offer them your "expertise" unless they ask for that expertise, and DO NOT JUDGE their parenting techniques, or their decisions concerning schooling, working/staying home, therapy, dietary approaches, or anything of the like. There is nothing you can DO, but you can BE a friend. Don't feel sorry for them, they're not sorry for their situation. It's difficult, grueling and taxing, yes, but not impossible. They are (I am, we are) fully equipped to deal with the situation, according to God's grace. It's just that in these families, the highs can be a little higher and lows a little lower. Respect them for what they do, because if I know anything it's this: just as in your family, every decision made is done so in LOVE.
This is Trish, stepping off her soapbox.
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