The school the girls attend has this really awesome training program for parents. It's not a training program, really. It's more of an intense information download within a supportive group of like-minded parents traveling on more or less the same road - to understand their children and do their best to smooth their life roads as much as possible. The most recent one I decided to attend was about Sensory Integration Dysfunction. I went thinking I might not learn much, since SID and Anna are old friends...we've been there and done that, almost everything. But it's been awhile since Anna's been in occupational therapy and a lot of my memory has become foggy. I thought there might be something I could glean from this session. So I went.
It was shocking and dismaying how much I've forgotten. I tend to be task and goal oriented - knock down one problem, move on to the next. I'm afraid that I've spent the past year in a glorious place of stasis - just enjoying my daughter, her laughter, her independence, her love of learning and life in general. Pretending that SID was largely behind us, knowing in the back of my mind it isn't. Which is probably why I attended this class.
A few things have stuck out in my mind about Anna recently - her cowering with her hands over her ears at the dentist's office. The sucking on her fingers. The long jumping jags on the trampoline. The wearing of her weighted blanket every night. The way she enjoys carrying heavy loads - a stack of books, the cat, the groceries. Sitting in the class and listening, I remembered everything else. Such as the shooters muffs Anna had to wear to dampen noise. How she'd shriek bloody murder in the middle of a city bus because it was too noisy. The sensitivity to light touch. How much the Willbarger Brush helped her sensory defensiveness. The rocking chair I brought to her initial occupational therapy appointments because it was the only thing that calmed her - not my touch or love, only the rocking. And the fear. Hers and mine. I guess that's why I filed all that away as soon as possible.
But the sensory integration dysfunction, while much better, is still there, even after those years of therapy. Even with my understanding of her need to jump and stomp and cringe. It probably will never go away. She will always need a sensory diet. She's old enough now to regulate herself more and seek out activities that help, such as carrying heavy loads. She probably doesn't know why she does these things - like carry a stack of books plus her book bag every morning to school. She doesn't need to carry books back and forth to school, but she does. She's a panic every morning getting out the door, gathering her stuff, books falling out of her arms. She never complains. She picks them up and lugs them along. It was not until I was in the class that I realized she's doing that as sensory input. At the start of the school day she is seeking input to regulate her morning transition. She is also fond of carrying around a heavy rock she found in the yard. The rock drives me crazy but she loves it - "it's iron on the bottom, and quartz crystal on the top! Did you know that quartz crystal has a hardness of 7?". The rock bothers me. It's not just that she named it (Sparkle Twilight, in fact - is 8 years old too old to have a pet rock?), but that she lugs it around the house. She sensed my dismay and even gave it a bath. I worry about her dropping it and damaging the floors or breaking a toe but she never has. I felt like such a heel when I realized that it's another way she seeks sensory input.
So now I'm aware that a sensory diet is still important to Anna and probably always will be...just like her expressive language delay will always be with her. Yes, that has also been brought to my attention recently. I was talking with a parent of a child with expressive language delay and it suddenly hit me that I've forgotten all about Anna having expressive language delay too. How could I have forgotten? So much has gotten masked with age and language acquisition! Anna spouts off facts about all sorts of things...she can talk your ear off with all the facts she knows - all that stuff she has room in her head and interest for...such as black holes. What black bears eat for breakfast. What will hypothetically happen to the universe when it runs out of gas. The hardness scale of rocks. The mature language she uses actually hides the fact that she has a hard time expressing herself. So nobody sees how hard it is for her to use language. Even her own mother.
But it just takes one jolt of a reminder. I remember now. She has expressive-receptive language disorder. It has gotten better, but it will always be there. The receptive is better than the expressive. The shrieking she did at 3 years old has morphed into stomping and slamming doors, because taking physical action is easier than using language to express her frustration. Because overreacting is easier than negotiating the subtlety of interpersonal relationships. In the heat of the moment, Anna pulls down the words that are easiest to remember in moments of frustration - I hate this game. This is boring. You're being mean. I'm not playing anymore. (Cue running out of the room with sobs and stomps.) It does not help that Megan sees these verbalizations as challenges. She'll go after Anna with vigor, with a more sophisticated grasp of social language and emotion and logic. She's like a barracuda, and Anna is left shrieking in self-defense. If this is what happens in a supportive environment at home, I shudder to think what would happen elsewhere.
I guess what needs to happen now is to go from attending each individual's needs quietly to addressing these needs as a family unit - where individual needs are known and respected and talked about openly. Because information is power. The more we know, the more we can help. I think the girls are old enough to handle this. So Anna has ASD. So Megan has ADHD. So what? We love each other, and that's what counts.
It was shocking and dismaying how much I've forgotten. I tend to be task and goal oriented - knock down one problem, move on to the next. I'm afraid that I've spent the past year in a glorious place of stasis - just enjoying my daughter, her laughter, her independence, her love of learning and life in general. Pretending that SID was largely behind us, knowing in the back of my mind it isn't. Which is probably why I attended this class.
A few things have stuck out in my mind about Anna recently - her cowering with her hands over her ears at the dentist's office. The sucking on her fingers. The long jumping jags on the trampoline. The wearing of her weighted blanket every night. The way she enjoys carrying heavy loads - a stack of books, the cat, the groceries. Sitting in the class and listening, I remembered everything else. Such as the shooters muffs Anna had to wear to dampen noise. How she'd shriek bloody murder in the middle of a city bus because it was too noisy. The sensitivity to light touch. How much the Willbarger Brush helped her sensory defensiveness. The rocking chair I brought to her initial occupational therapy appointments because it was the only thing that calmed her - not my touch or love, only the rocking. And the fear. Hers and mine. I guess that's why I filed all that away as soon as possible.
But the sensory integration dysfunction, while much better, is still there, even after those years of therapy. Even with my understanding of her need to jump and stomp and cringe. It probably will never go away. She will always need a sensory diet. She's old enough now to regulate herself more and seek out activities that help, such as carrying heavy loads. She probably doesn't know why she does these things - like carry a stack of books plus her book bag every morning to school. She doesn't need to carry books back and forth to school, but she does. She's a panic every morning getting out the door, gathering her stuff, books falling out of her arms. She never complains. She picks them up and lugs them along. It was not until I was in the class that I realized she's doing that as sensory input. At the start of the school day she is seeking input to regulate her morning transition. She is also fond of carrying around a heavy rock she found in the yard. The rock drives me crazy but she loves it - "it's iron on the bottom, and quartz crystal on the top! Did you know that quartz crystal has a hardness of 7?". The rock bothers me. It's not just that she named it (Sparkle Twilight, in fact - is 8 years old too old to have a pet rock?), but that she lugs it around the house. She sensed my dismay and even gave it a bath. I worry about her dropping it and damaging the floors or breaking a toe but she never has. I felt like such a heel when I realized that it's another way she seeks sensory input.
So now I'm aware that a sensory diet is still important to Anna and probably always will be...just like her expressive language delay will always be with her. Yes, that has also been brought to my attention recently. I was talking with a parent of a child with expressive language delay and it suddenly hit me that I've forgotten all about Anna having expressive language delay too. How could I have forgotten? So much has gotten masked with age and language acquisition! Anna spouts off facts about all sorts of things...she can talk your ear off with all the facts she knows - all that stuff she has room in her head and interest for...such as black holes. What black bears eat for breakfast. What will hypothetically happen to the universe when it runs out of gas. The hardness scale of rocks. The mature language she uses actually hides the fact that she has a hard time expressing herself. So nobody sees how hard it is for her to use language. Even her own mother.
But it just takes one jolt of a reminder. I remember now. She has expressive-receptive language disorder. It has gotten better, but it will always be there. The receptive is better than the expressive. The shrieking she did at 3 years old has morphed into stomping and slamming doors, because taking physical action is easier than using language to express her frustration. Because overreacting is easier than negotiating the subtlety of interpersonal relationships. In the heat of the moment, Anna pulls down the words that are easiest to remember in moments of frustration - I hate this game. This is boring. You're being mean. I'm not playing anymore. (Cue running out of the room with sobs and stomps.) It does not help that Megan sees these verbalizations as challenges. She'll go after Anna with vigor, with a more sophisticated grasp of social language and emotion and logic. She's like a barracuda, and Anna is left shrieking in self-defense. If this is what happens in a supportive environment at home, I shudder to think what would happen elsewhere.
I guess what needs to happen now is to go from attending each individual's needs quietly to addressing these needs as a family unit - where individual needs are known and respected and talked about openly. Because information is power. The more we know, the more we can help. I think the girls are old enough to handle this. So Anna has ASD. So Megan has ADHD. So what? We love each other, and that's what counts.
3 comments:
Erin, this post is most powerful. It has put tears in my eyes, for all of you, bless your hearts. I can not begin to imagine a day in the life of .... yet I read your posts, and you amaze me. What an amazing mom you are and I am sure dad is too, to have the awareness, forethought, insight, to two beautiful little girls! Your girls are indeed very special lucky girls to have the parents the do! :)
Thank you Ina, for such a sweet comment! You are always so encouraging and I so appreciate that, especially when I have "duh!" moments. :)
"I guess what needs to happen now is to go from attending each individual's needs quietly to addressing these needs as a family unit - where individual needs are known and respected and talked about openly... So Anna has ASD. So Megan has ADHD. So what? We love each other, and that's what counts.
Amen to that.
:)
Anonymom
Post a Comment