Sometimes I can't help but wonder what it would be like to be the mom to three neurotypical (NT) kids. I think I know what it's like to be the parent of one NT child but there are moments when even he makes me wonder how NT he is (half joking here - he does model some of his brothers' behaviors). Side note: For those who have followed my blog, I have only referred to having one child on the autistic spectrum. Diagnostically speaking, we only have one child with autism but we have serious concerns that another one of our children may have it as well. While we await our appointment for his evaluation, we're just observing him and working with him as best we can. There were a few moments today where my husband and I just laughed at how odd our life is.
My oldest son is incredibly energetic, creative and smart. He constantly seeks knowledge and could spend the entire day on the computer without paying any attention to his bodily needs - seriously. Of course, we don't let him stay on it all day and have found it to be a great tool to help improve his behavior. Lately, we have been using computer time as a reward for certain desirable behaviors. His current passion is creating cartoons online at http://www.toondoo.com/Home.on. We have found his cartoons to be immensely fun and smart. He has been writing them for a few weeks now but, today, as is so typical of him, he has added a new twist to this activity. He has decided that he is a "newspaper boy" and it is his job to create his cartoons and distribute them to ALL of our neighbors.
So, here is my balancing act: how do I reward his enthusiasm and his desire to share without printing out reams of paper and, most importantly, having to try to explain this newspaper to the neighbors? For a NT child, parents could explain that he/she could just give it to a few neighbors. They might whine or express a negative opinion but they'd move on. Not my son. He has made this decision and now it's my job to steer him gently in a way which is socially appropriate (since we don't know all our neighbors). We gave two newspapers to two of our neighbors. He wanted to print and deliver 2 more tonight but I convinced him we'd print one and then we'd deliver it in the morning (to give me a chance to figure out which neighbor we could give it to!) Of course, true to form, he remembered my saying earlier in the day that newspaper boys have to deliver their newspapers very early in the morning (before his idea had fully blossomed otherwise I'd have kept my mouth shut) and so he went to bed claiming he was going to get up EARLY to deliver his paper. All I can do is sigh and hope that he sleeps!
After feeling my oldest was taken care of and that he was off to bed, my husband and I then had to work with our other son. One of his questionable behaviors is that he has certain rituals which cause him great anxiety if they're not completed at night (this could be explained by OCD too which he may have). For him, he has to have the following things to go to bed: his duck, 2 stories read to him, a "big" blanket (which means it has to stretch down to the foot of his bed), and - the most fun one - a Geotrax train. Of course, it would be easy if it were simply grabbing a train. Nope. He HAS to have a train with parts (i.e., it has to have 3 cars), its remote, the cargo and the person that goes with it. The critical part of this is that there are no substitutions. If we can't find the person that goes with a particular train, the world has ended. We can't throw in another person because THEY DON'T GO WITH THAT TRAIN! Good Lord, have mercy on our souls.
Tonight, we found all of the train, the remote and the person but we couldn't find the cargo. For those unfamiliar with Geotrax (consider yourself lucky) the cargo is usually a little box about 1" x 1" and they're each different colors. We convinced him to get another train since we couldn't find the cargo. We started pulling together all the pieces for another train and then couldn't find the last part. BLAH! Amazingly, I was able to convince him yet again to look for another train. In a surprising show of flexibility, he actually accepted this train even though it didn't have cargo (it didn't come with any) because we convinced him the cargo was built into it (it's a firetruck train and we convinced him the hose was the cargo). Now, if we did this for all the boys then a person could say it's our parenting but our other boys do not have such requirements. They have requests but, even our oldest son, doesn't have anxiety-producing needs at night. Thankfully, all 3 boys are sound asleep in their rooms and all is right in their worlds.
Being the parent of kids on the spectrum requires an unbelievable amount of patience and a talent for mediation. Conflicts between their ideas of how things should be and what everybody else on the planet think happen minute by minute, hour by hour and so forth. To survive, we have to constantly balance being a firm, compassionate parent who has to enforce rules with making compromises with our children in order to bridge that divide between the NT world and the ASD one. We have fallen countless times but we have also risen way above our own expectations. One thing is for sure, it's ever changing, it's complicated, and it is a challenge.
As I sometimes fantasize about being the parent of NT children, I find myself only wishing my life were easier and less stressful but I love my boys - NT, ASD, OCD, or whatever. They are of me, from me and have been given to me. I cherish them even when I'm stumped over why they think the way they do. They are all beautiful in their own way - and you can quote me on that.
Monday, June 28, 2010
Saturday, June 19, 2010
Smack
There is a reason why there are t-shirts which say something along the lines of "Autism: Expect the Unexpected." As much as I know this to be true, I still find myself stunned by my son's behavior even though I can usually explain it later using my "Aspie-glasses." Of course, to pretend that autism is the only facet of life which can make life unpredictable is inaccurate since life can smack you upside your head at any given moment. Perhaps, as is so often the case with autism, it's the degree of unpredictability, or maybe it's that the behavior exhibited by persons with autism can be so outside the norm that it is often shocking even if it is explainable later in terms of the condition itself.
To be fair, life is unpredictable. Things happen for better or for worse no matter who you are. With autism, what is often a given for many people (certain established, acceptable behaviors) is not at all the norm for those with autism. As NT parents of children with autism, we're often slapped into the awareness that our children simply do not do what the average child would. It's that discrepancy (what we expect of a child of the same age as our child and what we actually get - usually quite outside the norm) which is truly shocking, disheartening and stressful. To further confuse us, this same child will simultaneously do many of those things children of his/her age would do or, in the case of my son, appear older than his years.
This past weekend we took the children camping up in northern Utah in the Uinta mountains. Forested mountains with ice cold, mountain streams provided a perfect setting for a bonding, family camping trip. With any trip, there is always the good and the less than good parts of a trip. It is rare that a vacation is completely void of unpleasantness at some point, and a good trip is simply one where fewer bad things happen than good. From that perspective, our trip was like any other. Unfortunately, the parts that were bad on this trip would have been far worse emotionally for me if I weren't already somewhat of a veteran parent of an autistic child (and another child whose behaviors are becoming increasingly more suspicious).
If a parent of an NT child had swapped with us for the weekend (without knowing our son was autistic), I am curious how they would characterize this trip. How would they have reacted to being punched in the face so hard their glasses flew across the room after accidentally poking him while helping him get dressed? Would they have been more shocked than me? Probably, although I was quite stunned actually. How would they have reacted to his ABSOLUTE and TOTAL insistence that he wanted to stay in "Coffee Car" (his name for a car, except it's pronounced cafe') because he was ready to go even though we had 3 hours before we were leaving? Would they have been shocked when he screamed at the top of his lungs, cursing madly when he couldn't get everyone's attention (even though he had been monopolizing it for a good while already)? I wasn't that shocked but he chose some particularly bad words which horrified his dear grandmother.
Of course, how would they have felt listening to him talk sweetly to his recently caught butterfly? Would they have seen the beautiful sparkle in his eyes as he absorbed the beauty of the mountain stream? Would his ferocious hugs and enthusiastic, heart felt "I love yous" have warmed them to his sweet, darling soul? I'm not sure about how another would react but I am not unfamiliar with his amazingly sweet and beautiful side and his reactive, out of control side. I know his true nature is good and loving and that his bad behavior is a result of his neurological condition. Despite that, though, after particularly bad behavior (such as being hit by him), I found myself stunned. When in that state of shock, I often grieve for myself, my family and my son. I turn inward and try to heal the hurt while also trying to calm the natural, yet unproductive, reaction to lash back out at him.
Of course, his disability does not entitle him to abuse me or others. It may explain it but does not excuse it. After dusting myself off, mentally and physically, I then have to focus on helping him avoid such negative behaviors even if there may not be a chance for success. I can't give up on him because, just as the imaginary NT parent I mentioned before, those who do not know and love will do just that.
Although I had packed meticulously for this trip, I knew that autism would likely rear it's ugly head (while also showing its beautiful side as well) at some point during the camp out. The unexpected was actually expected, but one can never fully prepare for the unknown. In this case, it literally knocked me upside the head but, as always, I have to move on and prepare for tomorrow.
To be fair, life is unpredictable. Things happen for better or for worse no matter who you are. With autism, what is often a given for many people (certain established, acceptable behaviors) is not at all the norm for those with autism. As NT parents of children with autism, we're often slapped into the awareness that our children simply do not do what the average child would. It's that discrepancy (what we expect of a child of the same age as our child and what we actually get - usually quite outside the norm) which is truly shocking, disheartening and stressful. To further confuse us, this same child will simultaneously do many of those things children of his/her age would do or, in the case of my son, appear older than his years.
This past weekend we took the children camping up in northern Utah in the Uinta mountains. Forested mountains with ice cold, mountain streams provided a perfect setting for a bonding, family camping trip. With any trip, there is always the good and the less than good parts of a trip. It is rare that a vacation is completely void of unpleasantness at some point, and a good trip is simply one where fewer bad things happen than good. From that perspective, our trip was like any other. Unfortunately, the parts that were bad on this trip would have been far worse emotionally for me if I weren't already somewhat of a veteran parent of an autistic child (and another child whose behaviors are becoming increasingly more suspicious).
If a parent of an NT child had swapped with us for the weekend (without knowing our son was autistic), I am curious how they would characterize this trip. How would they have reacted to being punched in the face so hard their glasses flew across the room after accidentally poking him while helping him get dressed? Would they have been more shocked than me? Probably, although I was quite stunned actually. How would they have reacted to his ABSOLUTE and TOTAL insistence that he wanted to stay in "Coffee Car" (his name for a car, except it's pronounced cafe') because he was ready to go even though we had 3 hours before we were leaving? Would they have been shocked when he screamed at the top of his lungs, cursing madly when he couldn't get everyone's attention (even though he had been monopolizing it for a good while already)? I wasn't that shocked but he chose some particularly bad words which horrified his dear grandmother.
Of course, how would they have felt listening to him talk sweetly to his recently caught butterfly? Would they have seen the beautiful sparkle in his eyes as he absorbed the beauty of the mountain stream? Would his ferocious hugs and enthusiastic, heart felt "I love yous" have warmed them to his sweet, darling soul? I'm not sure about how another would react but I am not unfamiliar with his amazingly sweet and beautiful side and his reactive, out of control side. I know his true nature is good and loving and that his bad behavior is a result of his neurological condition. Despite that, though, after particularly bad behavior (such as being hit by him), I found myself stunned. When in that state of shock, I often grieve for myself, my family and my son. I turn inward and try to heal the hurt while also trying to calm the natural, yet unproductive, reaction to lash back out at him.
Of course, his disability does not entitle him to abuse me or others. It may explain it but does not excuse it. After dusting myself off, mentally and physically, I then have to focus on helping him avoid such negative behaviors even if there may not be a chance for success. I can't give up on him because, just as the imaginary NT parent I mentioned before, those who do not know and love will do just that.
Although I had packed meticulously for this trip, I knew that autism would likely rear it's ugly head (while also showing its beautiful side as well) at some point during the camp out. The unexpected was actually expected, but one can never fully prepare for the unknown. In this case, it literally knocked me upside the head but, as always, I have to move on and prepare for tomorrow.
Tuesday, June 15, 2010
Spilling the beans
Tonight I found myself doing something that many a mother has done for their child, I was making a blanket. Unlike so many mothers though, I wasn't knitting, crocheting or quilting a blanket for a young baby. When my children were young, I didn't know how to sew and barely knew how to knit. Thankfully, our boys' great grandmothers supplied our babies with a lifetime's worth of snugglies. Unlike the light colored, soft blankets of infants, my son's blanket is dark blue with red stitching. It is soft though and it was specially made for my child; however, this blanket is weighted.
Children (and adults) on the spectrum sometimes benefit from certain sensory therapies. For instance, children who have a difficult time remaining in their chair at school can be helped by placing a weighted cloth over their lap. For many on the spectrum, the deep stimulation such as from such a blanket, is calming and soothing to them.
It hadn't occurred to me until after I had spent several hours in my son's psychologist's office that my son might benefit from some sensory therapy (often a part of occupational therapy). My best clue that my son might benefit from a weighted blanket was when I really observed him playing with his younger brothers. What had been oddly baffling behavior, finally made sense to me. He would ask his brothers to lay on top of him. My oldest would be bright red in the face from having two 30-40 pound boys wiggling on top of him. He'd laugh about it the whole time and they would too but I realized he was craving that sort of weight on him. Clearly, this behavior won't be tolerated by his brothers once they're old enough to think he's being weird by asking.
I decided that I would make him his own weighted blanket so that he could place it on him when he needs to calm down or when he just craves the weight. I'm still a novice sewer but I managed to make a simple blanket for him out of soft, t-shirt material which I stuffed with beans and rice to provide the needed weight. It was a bit tricky to sew, especially when I was sewing with the beans and rice in it. The fabric was being pulled down on one side by the beans and was light on the other side so I'll admit that my seams aren't the most beautiful I've ever seen. Despite how imperfect it was, though, I did feel a sense of pride as I was completing it - so much so that I got cocky and literally spilled a good cup worth of beans and rice on the carpet.
After finishing my baby's blanket and halfheartedly cleaning up my mess (since the vacuum would wake the boys and we don't dare risk that!), I tried out the blanket on myself. It is rather comfortable I'd have to say. It is soothing to feel the weight on you, especially where you're tense since it helps to ease the stress in that area. So, tomorrow, we'll see how my son likes it. I already know my twins are already interested in their own and, of course, I can't explain that this is a special blanket just for their brother. Perhaps when I make theirs, my seams won't be so crooked and I won't spill the beans.
Children (and adults) on the spectrum sometimes benefit from certain sensory therapies. For instance, children who have a difficult time remaining in their chair at school can be helped by placing a weighted cloth over their lap. For many on the spectrum, the deep stimulation such as from such a blanket, is calming and soothing to them.
It hadn't occurred to me until after I had spent several hours in my son's psychologist's office that my son might benefit from some sensory therapy (often a part of occupational therapy). My best clue that my son might benefit from a weighted blanket was when I really observed him playing with his younger brothers. What had been oddly baffling behavior, finally made sense to me. He would ask his brothers to lay on top of him. My oldest would be bright red in the face from having two 30-40 pound boys wiggling on top of him. He'd laugh about it the whole time and they would too but I realized he was craving that sort of weight on him. Clearly, this behavior won't be tolerated by his brothers once they're old enough to think he's being weird by asking.
I decided that I would make him his own weighted blanket so that he could place it on him when he needs to calm down or when he just craves the weight. I'm still a novice sewer but I managed to make a simple blanket for him out of soft, t-shirt material which I stuffed with beans and rice to provide the needed weight. It was a bit tricky to sew, especially when I was sewing with the beans and rice in it. The fabric was being pulled down on one side by the beans and was light on the other side so I'll admit that my seams aren't the most beautiful I've ever seen. Despite how imperfect it was, though, I did feel a sense of pride as I was completing it - so much so that I got cocky and literally spilled a good cup worth of beans and rice on the carpet.
After finishing my baby's blanket and halfheartedly cleaning up my mess (since the vacuum would wake the boys and we don't dare risk that!), I tried out the blanket on myself. It is rather comfortable I'd have to say. It is soothing to feel the weight on you, especially where you're tense since it helps to ease the stress in that area. So, tomorrow, we'll see how my son likes it. I already know my twins are already interested in their own and, of course, I can't explain that this is a special blanket just for their brother. Perhaps when I make theirs, my seams won't be so crooked and I won't spill the beans.
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