When you are diagnosed with an autism spectrum disorder at OHSU, you get a binder. This binder tells me many things I already know, because we've been working on the Sensory Processing Disorder diagnosis for a few years now, but will get to go through again. The main points: feel all your feelings, they are all okay, your child needs to be parented differently than other children, don't try to read the entire internet in one night of research, and steel yourself for the follow through.
The follow through wasn't too intense with Simon's SPD diagnosis. It probably felt like it at the time, getting his academic evaluation, his IFSP, setting up home services, making room for weekly home services, setting up OT, getting to bi monthly OT, finding a preschool, and starting preschool, while reading up on the issue and adjusting our parenting to match his needs. After preschool there was a small flurry of school placement and IEP work, and it was all smooth sailing - until now.
Now we have summer approaching. Now we have a medical ASD diagnosis. Now we have single sided deafness. Now we have sensory and behavioral regression. The list of things scheduled is long: MRI, Neuro follow up, hearing loss community social event, BAHA evaluation, Speech/path communication evaluation, next hearing test and follow up with the ENT. The list of things to schedule is long: Speech/path communication services, IEP meeting, next year's school services, and 3 to 4 sets of summer activities. The nebulous list of things we may need or want to schedule or do is long: sensory activities as often as possible to help his sensory regression, Speech/path services focused on hearing loss, events, playdates or meet-ups with hearing loss kids (a surprise need we learned of when Simon desperately wanted to attend a summer camp for kids with hearing loss), surgery, surgery follow up, hearing aid programming, hearing aid re-programming, possible OT to deal with hearing aid.
Most of this will not happen unless we make it happen. It is overwhelming. It requires skill in making and using to-do lists. It requires phone calls. It requires follow up phone calls. It requires time. It requires you to delve into a flurry of planning and activity that usually results in a frustrating wait for all these services to actually begin. We've had a month of downtime since Simon's last round of medical care, and I'm refreshed and ready to focus on the follow through. But if you don't hear from me in the next few weeks, just now I'm probably on the phone, scheduling.
May 9, 2013
Apr 17, 2013
Physically Fragile
I have mild hearing loss in the highest testing frequency, which doesn't affect me functionally, but does leave me with constant tinnitus. The ENT doctor was surprised to see this loss this early on in my life, and counselled me to protect my hearing, as it's more fragile than normal. He said I'm likely more sensitive to loud and sharp noises. I almost burst out laughing at that - you don't need to tell me about auditory defensiveness. But it got me thinking - my ears are far from the only thing fragile about my body. I bruise from a strong wind. I get a migraine from passing a perfumed lady in the open air. I sit still for thirty minutes and start limping. I experience stress and I faint, vomit, cramp, twitch, and forget how to speak. I am physically fragile.
I am emotionally resilient, and I feel assured and proud of that. I'm physically fragile, and I hate the interruption it causes in my life, but I feel no shame, guilt, or personal responsibility for it. I feel responsible for doing all I can to protect and manage the fragility, but the fact that it exists leaves me sad and angry, but not responsible. It's a value system that works for me - bounce back mentally from emotional trauma, and I boast about it. Fall apart physically after emotional trauma, and... meh. It sucks, but it's not my fault. I sit here, ears ringing to the point of distraction, legs aching because I'm sitting, frustrated with these troubled bones, and immensely grateful that I'm still reasonably chipper and social.
Apr 8, 2013
Validity
I feel like my complaints are invalid, that I need to tell myself to suck it up, get over it, a whole lot of people have it a whole lot harder than I do. Sure, I have fibromyalgia, but it's well enough under control that I rarely miss work and can do a social thing every now and then. I'm not disabled. I'm not so sick I can't function. Yes, Simon is autistic. But so mildly so, he's just clinging to the end of the spectrum, and with help, will likely grow past it. Yes Simon has hearing loss, but he's only half deaf, and it happened long after his verbal skills bounded past those of his peers.
But, I don't really buy that. That's what I tell myself other people are thinking about me. How's that for myopic moping? The reality is, though it's not as hard as many people's situations, it's still hard. For me. For us. And it's harder than a lot of other people's relatively normal lives.
I work hard at being functional with my illness. I eat a special diet. A protein focused diet, when protein is the more expensive of the food groups. I spend over an hour three times a week doing healthcare. I spend money three times a week doing healthcare. And I spend a lot of time in bed when I'd rather be with my kid, in the garden, sewing - I'll even take vacuuming and laundry over being forced into bed. It sucks, and it's hard.
Simon is a difficult kid. It's hard to parent well when your kid decks you for suggesting a trip to the grocery store. It's not usually quite that extreme, but it's because we work at it. We get him in bed early, because he needs it. But it means we miss out on school events, social events, dinner with any normally timed friends or family. We stuff him full of protein and avoid sugar. This kid thinks an unsweetened grapefruit is dessert. We write a schedule. We stick to it. We feed him more protein. We remind him, again and again, how to start a conversation, how to greet a friend. We try, in vain, to convince him it's okay if a kid doesn't want to play by a rule Simon invented. We take Simon away when he loses his mind over said kid not obeying said invented and unwritten rule. It doesn't happen every time, but it happens a lot more often than it does to a neurotypical family.
And now, Simon is half deaf. So far we haven't noticed much of an effect. He wasn't born deaf, we don't have to fear lack of typical language, to work at integration, acceptance - but we do have to add more appointments, more cost, more follow up, more watching and learning what the effect will truly be and how we will deal with it. We will have to deal with crowds, misunderstandings in groups of kids, added difficulty fitting in socially, when he doesn't understand what exactly his peers are saying, and eventually, as academics catch up to him, we'll have to deal with hearing loss affecting him in class.
It could be a lot worse, but it could also be a lot more normal. I don't want to cry out for pity, and I don't even feel any of this pressure or skepticism from real people in my life. I'm torn between acknowledging that it's hard and it's okay to be sad and angry about that, and between this piece of me that thinks real strength shows no sorrow, admits no loss, and sees every challenge as a blessing. I don't want to dwell in negativity, but I sure don't believe being a chronically ill mother of an autistic half deaf son is a blessing.
It characters, appreciation for the small moments of life, and empathy for others, all those things adversity is supposed to bring you, were just fine before all this happened.
I'm not looking for pity, but I am looking for validation. Validation, primarily, from myself.
- Posted using BlogPress from my iPad
But, I don't really buy that. That's what I tell myself other people are thinking about me. How's that for myopic moping? The reality is, though it's not as hard as many people's situations, it's still hard. For me. For us. And it's harder than a lot of other people's relatively normal lives.
I work hard at being functional with my illness. I eat a special diet. A protein focused diet, when protein is the more expensive of the food groups. I spend over an hour three times a week doing healthcare. I spend money three times a week doing healthcare. And I spend a lot of time in bed when I'd rather be with my kid, in the garden, sewing - I'll even take vacuuming and laundry over being forced into bed. It sucks, and it's hard.
Simon is a difficult kid. It's hard to parent well when your kid decks you for suggesting a trip to the grocery store. It's not usually quite that extreme, but it's because we work at it. We get him in bed early, because he needs it. But it means we miss out on school events, social events, dinner with any normally timed friends or family. We stuff him full of protein and avoid sugar. This kid thinks an unsweetened grapefruit is dessert. We write a schedule. We stick to it. We feed him more protein. We remind him, again and again, how to start a conversation, how to greet a friend. We try, in vain, to convince him it's okay if a kid doesn't want to play by a rule Simon invented. We take Simon away when he loses his mind over said kid not obeying said invented and unwritten rule. It doesn't happen every time, but it happens a lot more often than it does to a neurotypical family.
And now, Simon is half deaf. So far we haven't noticed much of an effect. He wasn't born deaf, we don't have to fear lack of typical language, to work at integration, acceptance - but we do have to add more appointments, more cost, more follow up, more watching and learning what the effect will truly be and how we will deal with it. We will have to deal with crowds, misunderstandings in groups of kids, added difficulty fitting in socially, when he doesn't understand what exactly his peers are saying, and eventually, as academics catch up to him, we'll have to deal with hearing loss affecting him in class.
It could be a lot worse, but it could also be a lot more normal. I don't want to cry out for pity, and I don't even feel any of this pressure or skepticism from real people in my life. I'm torn between acknowledging that it's hard and it's okay to be sad and angry about that, and between this piece of me that thinks real strength shows no sorrow, admits no loss, and sees every challenge as a blessing. I don't want to dwell in negativity, but I sure don't believe being a chronically ill mother of an autistic half deaf son is a blessing.
It characters, appreciation for the small moments of life, and empathy for others, all those things adversity is supposed to bring you, were just fine before all this happened.
I'm not looking for pity, but I am looking for validation. Validation, primarily, from myself.
- Posted using BlogPress from my iPad
Apr 3, 2013
Caretaker
Every day, Robert Ham takes care of someone with fibromyalgia, adjustment disorder, migraines, depression, aspergers, sensory disorder, fine motor delay, developmental coordination disorder, and single sided deafness. The diagnosis list is long, and just keeps getting longer.
Every day, he prepares meals and snacks to fit special dietary needs. Every day he changes and dresses an oversensitive child, and modifies the music, lighting, and space from what he prefers to what sensory needs are demanding. Every day Robert Ham entertains and works around expectations, that if not adjusted gently and in time, get in the way of any shopping, cooking, cleaning, or rescue transportation that needs to be done. He cleans and straightens to reduce stress in the afflicted, so the stress doesn't make the afflictions worse. Every day he make a tight budget stretch to cover our needs. And every day, he also works, looks for more work, and works to manage his work.
The quantity of caretaking that is done is immense, the pay off unseen, and the work unrewarded. It is appreciated and it is worth it, especially to the two of us being cared for, but in the general sense, there is no compensation for time and tears. There is little respite and no vacations. Even if time off could be arranged, there is no budget for fun and rest. I don't say this out of pity or looking for pity, but out of admiration and gratitude. Had he known what would befall the woman he was marrying and the child that would be born, there may have been different choices. But, with the choices made and realities as they are, Robert Ham chooses to stay, to love, and to care.
Every day, he prepares meals and snacks to fit special dietary needs. Every day he changes and dresses an oversensitive child, and modifies the music, lighting, and space from what he prefers to what sensory needs are demanding. Every day Robert Ham entertains and works around expectations, that if not adjusted gently and in time, get in the way of any shopping, cooking, cleaning, or rescue transportation that needs to be done. He cleans and straightens to reduce stress in the afflicted, so the stress doesn't make the afflictions worse. Every day he make a tight budget stretch to cover our needs. And every day, he also works, looks for more work, and works to manage his work.
The quantity of caretaking that is done is immense, the pay off unseen, and the work unrewarded. It is appreciated and it is worth it, especially to the two of us being cared for, but in the general sense, there is no compensation for time and tears. There is little respite and no vacations. Even if time off could be arranged, there is no budget for fun and rest. I don't say this out of pity or looking for pity, but out of admiration and gratitude. Had he known what would befall the woman he was marrying and the child that would be born, there may have been different choices. But, with the choices made and realities as they are, Robert Ham chooses to stay, to love, and to care.
Mar 28, 2013
To BAHA or not to BAHA...
One one hand, this question of going forward with a bone anchored hearing aid (http://www.umm.edu/otolaryngology/baha.htm) or not is not especially weighty. Choosing surgery must always be done carefully, but, though the rod would be permanent, the device is not, and the rod has no impact on how the ear does or does not function. There is no point of no return, no time at which development of the child or progression of illness would mean it can no longer be done. There are no deadlines.
On the other hand, this is a surgical procedure that would slightly alter Simon's skull forever, that has risks, but also, one that will be much easier to adapt to and get the most out of if done now, before he gets older, and before he has had years of singled sided deafness to get used to, to build neurological pathways to accommodate. If he's going to use an assistive hearing device, isn't it better to use this super malleable time to form pathways for it's use?
If Simon were a neurotypical kid, I think the choice would be more straightforward. For Simon and his auditory defensiveness, could there be a good side to hearing loss, and if so, does it outweigh the bad? The good: half the volume, which is a plus when normal sounds can send him over the edge. The bad: added difficulty hearing the intended sounds in a crowded area, inability to localize sound, and added frustration when hearing loss leaves him confused or stymied. With a list like that, the good seems obvious. But there's a good and bad to the devices and procedure as well. No surgery is without risk of failure, mistakes, even death. The device doesn't restore normal hearing, and its possible he could hate the way he hears with it. there could be permanent complications from surgery, not life threatening, but something to managed for the rest of his life.
If we were seeing more of an affect from the hearing loss, it would be an easier choice. As it is, no one noticed. Simon still insists his ears can hear fine. If he's already adapted so well, why introduce something new? But then, now that I know, I can see the change and the deficit. When laying with his good ear pressed on his pillow, he can't hear me. At all. When I say goodbye, have a good day, in the morning, he says, "I love you too." Three mornings in a row.
But then - he would do that when a hearing test showed he had perfect hearing in both ears. Wether it was sensory or simply ignoring us, it wasn't hearing loss. Is this the damaged ear acting, sensory overload preventing him from processing what Im saying, or this behavior, not being interested enough in what I'm saying to listen, but knowing the script well enough to respond?
I feel ridiculous considering even for a second not giving my child the best replication of full hearing he can get. I feel ridiculous even considering drastic intervention with unknown effects when he's already adapted so well, and already managing an oddly functioning processing system.
Both arguments sound so obvious when I make them to myself. The greatest gift in this is: we have time, and we have a modified trial. We have two months before even the soft band trial happens, time to research, time to read specifications, to read research, to read anecdotes. We have time to discuss with Simon's people: his teachers, friends, and family. And when we strap that device onto his head for the first time, all this may seem like the wasted meanderings of a stressed maternal mind. We could know right way, like some do, that is a perfect solution. Even if that happens, I wont feel silly for my pros and cons, my hopes and fears, my research and feelings. Its what i do, how I process, and ultimately, even if it doesn't matter in the end in what we do for Simon, these meanderings will have done a lot for me.
On the other hand, this is a surgical procedure that would slightly alter Simon's skull forever, that has risks, but also, one that will be much easier to adapt to and get the most out of if done now, before he gets older, and before he has had years of singled sided deafness to get used to, to build neurological pathways to accommodate. If he's going to use an assistive hearing device, isn't it better to use this super malleable time to form pathways for it's use?
If Simon were a neurotypical kid, I think the choice would be more straightforward. For Simon and his auditory defensiveness, could there be a good side to hearing loss, and if so, does it outweigh the bad? The good: half the volume, which is a plus when normal sounds can send him over the edge. The bad: added difficulty hearing the intended sounds in a crowded area, inability to localize sound, and added frustration when hearing loss leaves him confused or stymied. With a list like that, the good seems obvious. But there's a good and bad to the devices and procedure as well. No surgery is without risk of failure, mistakes, even death. The device doesn't restore normal hearing, and its possible he could hate the way he hears with it. there could be permanent complications from surgery, not life threatening, but something to managed for the rest of his life.
If we were seeing more of an affect from the hearing loss, it would be an easier choice. As it is, no one noticed. Simon still insists his ears can hear fine. If he's already adapted so well, why introduce something new? But then, now that I know, I can see the change and the deficit. When laying with his good ear pressed on his pillow, he can't hear me. At all. When I say goodbye, have a good day, in the morning, he says, "I love you too." Three mornings in a row.
But then - he would do that when a hearing test showed he had perfect hearing in both ears. Wether it was sensory or simply ignoring us, it wasn't hearing loss. Is this the damaged ear acting, sensory overload preventing him from processing what Im saying, or this behavior, not being interested enough in what I'm saying to listen, but knowing the script well enough to respond?
I feel ridiculous considering even for a second not giving my child the best replication of full hearing he can get. I feel ridiculous even considering drastic intervention with unknown effects when he's already adapted so well, and already managing an oddly functioning processing system.
Both arguments sound so obvious when I make them to myself. The greatest gift in this is: we have time, and we have a modified trial. We have two months before even the soft band trial happens, time to research, time to read specifications, to read research, to read anecdotes. We have time to discuss with Simon's people: his teachers, friends, and family. And when we strap that device onto his head for the first time, all this may seem like the wasted meanderings of a stressed maternal mind. We could know right way, like some do, that is a perfect solution. Even if that happens, I wont feel silly for my pros and cons, my hopes and fears, my research and feelings. Its what i do, how I process, and ultimately, even if it doesn't matter in the end in what we do for Simon, these meanderings will have done a lot for me.
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