Sometimes being a mom to a SN needs kid makes me feel like an utter and complete failure. T is in one of many regressions in his SPD and it reminds me that I am probably not meeting all of his needs. It's not that I'm lazy or anything, I just don't know how to help him. We do listening therapy, we do heavy work and outside playtime, and breathing exercises, and, and, and... Right now it just doesn't seem like enough.
Today at OT he had little focus, actually licked his OT therapist, something he hasn't done in half a year, and cried when he had to throw away some used art supplies. Jennifer (his OT) reminded me that he is still far better than he was a year and a half ago, and that these regressions do happen. Usually when there is a growth spurt, or other developmental milestone coming. But it can also be because of a tiny change in routine, or a perceived change in routine.
I know all of this, but my heart still hurts when I see him struggling so much. I still wonder how I can do more, what I'm not doing right, and how it's all my fault. I also find myself losing my patience with him much more often, and the raising of my voice sends him into a sensory tailspin that can ruin an entire day's work. It's exhausting, and times like this I wonder what it would feel like to have a neurotypical child.
Then comes even more guilt, I would never, ever trade my son. He is a bright, sweet, loving boy. He has eyes that melt your heart, and a smile so contagious that it can make me smile even on my darkest days. But I can't help but wonder what he would be like if he didn't have SPD? I am sitting here trying to imagine it, and I can't even come up with a possibility. It's just not in the realm of my imagination anymore. I see children who are neurotypical who sit still at a table, who don't cover their eyes every time the sun is out, who don't crash into their friends, family and especially not walls. I see them, and I can't even picture T the same way. Maybe it's because I've come to realize that T will never be that child. He will always have to work harder to keep his body under control, to fight impulses constantly, and he will always have to work harder than his peers to make friends . I have accepted this, but when there are regressions like he's going through now, it makes me so sad.
What do I wish? I wish I was different. I wish that I could see the progress that he's made in 1.5 years of OT instead of getting so stuck on the back slides. I wish I could see these times as normal, and know that we will come out the other end further ahead than ever. I wish I was stronger, and that I believed in myself as his mother more. I wish so many things. But I have never wished that T was anyone but who he is, and today, that is my victory.
Wednesday, August 31, 2011
Wednesday, August 24, 2011
Please Don't Stare
When I was growing up, I was taught that it is rude to stare. My mother told me that staring is impolite, and it's best to ask her about differences I saw in people. She also taught me that people come in all shapes, sizes, colors, and abilities.
Now, I admit I'm not perfect. I find myself doing a double take when I see a person who is different that I am, or a child who appears to be throwing a tantrum. I don't know a person who doesn't, but I make it a point to avoid staring. If I don't understand a situation I either ask questions, as politely as possible, or I look for the answers on my own when I get home.
This is probably why I am so taken back when I see people staring at my son. I'm especially thrown by full grown adults who sit there and stare with their jaws on the floor when they see my son in his full "sensory wardrobe." I understand kids, but adults should know better.
Granted, T's "sensory get up" is interesting to look at, and he does stand out in a crowd, and I understand a double take here and there. I mean it's not every day that you see a 4.5 year old in what looks like a bullet proof vest and shooter’s ear muffs. (His weighted-compression vest and ear phones) But when you stare for so long that he notices through all of the other sensory things going on, it's ridiculous. And when you actually point your finger at him to show your friends, family, or that stranger next to you, it's infuriating.
This exact thing has happened to us several times. Most recently was at a restaurant, whose mascot is a giant red bird. Since it was close to the lunch time rush, and that place tends to be an exercise in sensory overload anyway, I had put T in his vest and head phones to help him cope with the onslaught of sensory input he was about to receive.
We got seated and T was looking around at all of the pictures, and telling me stories about each of them, when I noticed this man staring at us, at my son. I tried to ignore it, but he just didn't look away. It wasn't like T was screaming, or throwing things (which has happened before.) He was sitting quietly, and really behaving very well. I noticed the man was pointing at T and whispering to the woman he was with, and that's when T noticed it too. He told me, "mom, why is that man looking at me?" I said something about how he must be really impressed by your behavior. I then told T to wave at the man, when I actually wanted to tell him to wave with one certain finger. The man and the woman, who was also now staring, quickly looked away. T and I ate lunch, all the while the man and woman kept stealing looks our way.
On the way home, T told me that the people "looking at him for a long time, like that man did” made him uncomfortable. I explained that what they were doing was called staring, and that it's rude. I told him that just because someone is different than you are it’s not okay to stare. I also told him that if he ever has questions about someone’s differences it’s okay to ask me quietly about it.
So please, if you see a person, especially a child, who is a little bit different please don’t stare. Remember, it’s okay to ask questions, as long as you do it respectfully (and preferably not in the middle of a meltdown) but it is never ok for an adult to stare and point at a child. Think about how you would feel if someone did that to your child.
Now, I admit I'm not perfect. I find myself doing a double take when I see a person who is different that I am, or a child who appears to be throwing a tantrum. I don't know a person who doesn't, but I make it a point to avoid staring. If I don't understand a situation I either ask questions, as politely as possible, or I look for the answers on my own when I get home.
This is probably why I am so taken back when I see people staring at my son. I'm especially thrown by full grown adults who sit there and stare with their jaws on the floor when they see my son in his full "sensory wardrobe." I understand kids, but adults should know better.
Granted, T's "sensory get up" is interesting to look at, and he does stand out in a crowd, and I understand a double take here and there. I mean it's not every day that you see a 4.5 year old in what looks like a bullet proof vest and shooter’s ear muffs. (His weighted-compression vest and ear phones) But when you stare for so long that he notices through all of the other sensory things going on, it's ridiculous. And when you actually point your finger at him to show your friends, family, or that stranger next to you, it's infuriating.
This exact thing has happened to us several times. Most recently was at a restaurant, whose mascot is a giant red bird. Since it was close to the lunch time rush, and that place tends to be an exercise in sensory overload anyway, I had put T in his vest and head phones to help him cope with the onslaught of sensory input he was about to receive.
We got seated and T was looking around at all of the pictures, and telling me stories about each of them, when I noticed this man staring at us, at my son. I tried to ignore it, but he just didn't look away. It wasn't like T was screaming, or throwing things (which has happened before.) He was sitting quietly, and really behaving very well. I noticed the man was pointing at T and whispering to the woman he was with, and that's when T noticed it too. He told me, "mom, why is that man looking at me?" I said something about how he must be really impressed by your behavior. I then told T to wave at the man, when I actually wanted to tell him to wave with one certain finger. The man and the woman, who was also now staring, quickly looked away. T and I ate lunch, all the while the man and woman kept stealing looks our way.
On the way home, T told me that the people "looking at him for a long time, like that man did” made him uncomfortable. I explained that what they were doing was called staring, and that it's rude. I told him that just because someone is different than you are it’s not okay to stare. I also told him that if he ever has questions about someone’s differences it’s okay to ask me quietly about it.
So please, if you see a person, especially a child, who is a little bit different please don’t stare. Remember, it’s okay to ask questions, as long as you do it respectfully (and preferably not in the middle of a meltdown) but it is never ok for an adult to stare and point at a child. Think about how you would feel if someone did that to your child.
Wednesday, August 17, 2011
When T gets sick.
Let's face it, no one likes it when their kid gets sick, and I'm no exception. Actually the idea of T getting sick scares me, but not for the reason you might think. I actually dread the week after he gets better; when the fever breaks I know we are in trouble.
When T gets sick, he gets really sick. We're talking fevers of 104+ and he barely moves from the couch without being carried. He's my only child, so I'm not sure if what comes next is typical, but I think it has a lot to do with his SPD. After being basically bedridden for a week his senses explode! He has an intense need to move, see, and feel that he becomes unstoppable. He is also probably still a bit sick and he's definitely tired, so you add all of this together and you get a week of sensory meltdowns. Some that are so bad that they scare him and they scare me too.
These meltdowns are not like typical tantrums, they are more. They are more intense, and a lot more violent. T will scream, hit, kick, head butt, bite and basically lose control of himself completely. He falls so deep into the meltdown that if you look into his eyes you don't see anger, you see terror.
This week is one of those weeks. T just got over an almost week long fever, where he was too sick to do any of his OT exercises, or even get off the couch without being carried from one place to the other. This lack of meeting his sensory needs seems to build up until the fever breaks, then it all breaks loose.
Last night was a perfect example of how all the pent up energy manifests; he had his first sensory meltdown in several months. It was so bad that my husband and I had to hold his arms and bear hug him to keep from being hit, kicked, bit, or otherwise getting hurt. As he was calming down he told me that he scared himself. The thing that scared him was that he couldn't stop and didn't understand why. He’s had another such meltdown this morning and I expect about a week of at least once a day sensory meltdowns. So while I hate it when T gets sick, I dread the week after he gets better even more.
When T gets sick, he gets really sick. We're talking fevers of 104+ and he barely moves from the couch without being carried. He's my only child, so I'm not sure if what comes next is typical, but I think it has a lot to do with his SPD. After being basically bedridden for a week his senses explode! He has an intense need to move, see, and feel that he becomes unstoppable. He is also probably still a bit sick and he's definitely tired, so you add all of this together and you get a week of sensory meltdowns. Some that are so bad that they scare him and they scare me too.
These meltdowns are not like typical tantrums, they are more. They are more intense, and a lot more violent. T will scream, hit, kick, head butt, bite and basically lose control of himself completely. He falls so deep into the meltdown that if you look into his eyes you don't see anger, you see terror.
This week is one of those weeks. T just got over an almost week long fever, where he was too sick to do any of his OT exercises, or even get off the couch without being carried from one place to the other. This lack of meeting his sensory needs seems to build up until the fever breaks, then it all breaks loose.
Last night was a perfect example of how all the pent up energy manifests; he had his first sensory meltdown in several months. It was so bad that my husband and I had to hold his arms and bear hug him to keep from being hit, kicked, bit, or otherwise getting hurt. As he was calming down he told me that he scared himself. The thing that scared him was that he couldn't stop and didn't understand why. He’s had another such meltdown this morning and I expect about a week of at least once a day sensory meltdowns. So while I hate it when T gets sick, I dread the week after he gets better even more.
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