I was given the write-up from Isaac's OT Evaluation and it sat in my car for a few days, because that's what happens to things that enter my car, they get sucked in and forgotten about. Don't worry, I bring my kids in the house. Last night, after I sifted through some junk, I found the paperwork, along with the information for the parenting class that I'm supposed to "strongly consider" in order to deal with Isaac's behaviors. From a sensory perspective, Isaac is considered "typical" in a couples areas, has "some problems" in a couple other areas, and "DEFINITE DYSFUNCTION" in a few other areas.
I've read a fair amount over the past year about sensory-processing disorders, and guess what? Me, myself, and I, experience definite dysfunction in the area of auditory processing. I'm being a tad facetious here, but to be completely honest, when Walter chews gum, or picks up one of those mints upon leaving a restaurant and I hear his teeth crushing it up on the way home, I want to scream. In an effort to help him become more empathetic toward my dysfunction, I told him a few weeks ago that when he does things like that, eats hard candies, chews gum, makes any sound repeatedly, it feels like tiny worms are crawling across my brain.
I thought that impressing upon him the idea of worms in my brain would make him think twice about that mint--it didn't. My family feels bad for Walter because I make him watch TV at lowest possible volume setting, but I think everyone should try to imagine worms on their brain, and then maybe they would understand.
Don't worry, Isaac. I get it. Maybe when people talk to you, look at you, or God forbid, touch you, maybe then you feel the worms too.
Showing posts with label Occupational Therapy Evaluation. Show all posts
Showing posts with label Occupational Therapy Evaluation. Show all posts
Friday, August 10, 2012
Sunday, August 5, 2012
Four days, five appointments...
The only way to summarize last week, is to list Isaac's appointment schedule. Thankfully, not all weeks are like this last one:
Monday: Swallow Study. I was dreading this and assumed it would be horrible for all parties involved. I admit, I'm generally a pessimist, although, Sarah is such an optimist, and I spend so much time with her that she has thankfully rubbed off some of that positivity on to me over the past few years. Anyway...radiology was insistent that Isaac wear a hospital tag. He can't stand those things. Just looking at one makes him mad. I didn't know he'd have to wear one, so I didn't bring a sock to cover it up, and they didn't have hospital socks in radiology and they weren't willing to locate one, so after we left the main desk I pulled it off of his ankle and he was happy. I brought the DVD player, but the battery ran out right before the study was about to start (go me!). We charged it for a few minutes, and it lasted long enough to get a few swallows from the syringe. Isaac loved the barium and defied all of my expectations. Oh, do you want to know what is completely absurd? They told me to bring him hungry. What kind of idiots are in charge of these tests? I mean, really, if the kid was stranded in the desert for days without food or water, I'm 99% sure he wouldn't voluntarily take a drink. I swear, if one of those morons could live with me a for a few days, they wouldn't tell me to bring my orally averse child, hungry.
He passed the swallow study...just like I told everyone he would. My goal is spend the next year weaning off of the feeding tube.
Tuesday: Dentist, for follow-up and cleaning. I really like Isaac's dentist. This appointment went as well as it could. Still nothing to do about his palate until he's six or seven.
Wednesday: GI Appointment. We've wanted Isaac's button changed for the last couple months and were finally able to get it done. As you can imagine, Isaac didn't like having his tube ripped from his stomach only to have a new one quickly shoved back in. Dr. Mahajan was amazed by how well Isaac looks, and asked, "what's your secret?" I told her about his blenderized diet, which she was even more amazed about and said that most parents don't do it because it too hard. Too hard to give your child real food? I get it, formula is easy, convenient (there are still days when he only has formula, due to travel, or when I'm at a wedding because Walter doesn't want to bother with blending food), and you know it will easily go through the pump and then g-tube. But if you really think about, if you consider yourself drinking formula day in and day out, and how that could potentially make you feel, I think you'd opt for real food too. She did check his vitamin levels and ran a full nutrition panel, guess what? Everything was perfect. And now I'm going to pat myself on the back.
Thursday: Mental breakdown, Feeding Therapy, OT Evaluation. So, I was planning to save my mental breakdown for Friday, once all of this madness was over. The entire week I felt like I was hanging on by a thread and constantly on the verge of tears. And then I took Isabella to my parent's house to hang out for the day so that she didn't have to go to two appointments in one day. I saw my mom, and you know how some times, when you see your mom, you can't keep all that you've been trying to keep in, in? Yeah, I lost it. My mom told me to leave the kids and go somewhere until we needed to leave for Isaac's appointment. I sat in a parking lot and cried. Pulled it together, picked up Isaac, and headed to feeding therapy. By the grace of God, he ate from a spoon. That was my gift for the day, and thankfully, I was given that gift because Isaac decided to let his true colors show for the OT Eval. It went something like this:
"Isaac, let's stack a tower! Can you take a turn after I take a turn?"
Isaac sat and stared with his angry eyes, pulling his hair, whipped out his foot and knocked over the tower.
"You're being silly. Let's build a tower!"
Angry eyes, avoiding eye contact aside from an occasional mean side glance. Kicked over tower, and scooted screaming to a different toy to bang his head on it.
"Look Isaac! I'm going to make a picture, can you make lines like I make lines?"
Angry eyes, pulling hair, grabbed marker and threw it across the room.
Then he was supposed to make horizontal lines...he grabbed the marker, stabbed the paper a few times, then threw it.
So, after an hour we called it quits. At that point he was sitting in a corner pulling his hair, and staring at the floor. She suggested I attend a parenting class to deal with his behavior, and also recommended OT, weekly.
Well, we survived the week. We're all in one piece, though a bit mentally unstable over here.
Next time, pictures of Isaac walking!
Monday: Swallow Study. I was dreading this and assumed it would be horrible for all parties involved. I admit, I'm generally a pessimist, although, Sarah is such an optimist, and I spend so much time with her that she has thankfully rubbed off some of that positivity on to me over the past few years. Anyway...radiology was insistent that Isaac wear a hospital tag. He can't stand those things. Just looking at one makes him mad. I didn't know he'd have to wear one, so I didn't bring a sock to cover it up, and they didn't have hospital socks in radiology and they weren't willing to locate one, so after we left the main desk I pulled it off of his ankle and he was happy. I brought the DVD player, but the battery ran out right before the study was about to start (go me!). We charged it for a few minutes, and it lasted long enough to get a few swallows from the syringe. Isaac loved the barium and defied all of my expectations. Oh, do you want to know what is completely absurd? They told me to bring him hungry. What kind of idiots are in charge of these tests? I mean, really, if the kid was stranded in the desert for days without food or water, I'm 99% sure he wouldn't voluntarily take a drink. I swear, if one of those morons could live with me a for a few days, they wouldn't tell me to bring my orally averse child, hungry.
He passed the swallow study...just like I told everyone he would. My goal is spend the next year weaning off of the feeding tube.
Tuesday: Dentist, for follow-up and cleaning. I really like Isaac's dentist. This appointment went as well as it could. Still nothing to do about his palate until he's six or seven.
Wednesday: GI Appointment. We've wanted Isaac's button changed for the last couple months and were finally able to get it done. As you can imagine, Isaac didn't like having his tube ripped from his stomach only to have a new one quickly shoved back in. Dr. Mahajan was amazed by how well Isaac looks, and asked, "what's your secret?" I told her about his blenderized diet, which she was even more amazed about and said that most parents don't do it because it too hard. Too hard to give your child real food? I get it, formula is easy, convenient (there are still days when he only has formula, due to travel, or when I'm at a wedding because Walter doesn't want to bother with blending food), and you know it will easily go through the pump and then g-tube. But if you really think about, if you consider yourself drinking formula day in and day out, and how that could potentially make you feel, I think you'd opt for real food too. She did check his vitamin levels and ran a full nutrition panel, guess what? Everything was perfect. And now I'm going to pat myself on the back.
Thursday: Mental breakdown, Feeding Therapy, OT Evaluation. So, I was planning to save my mental breakdown for Friday, once all of this madness was over. The entire week I felt like I was hanging on by a thread and constantly on the verge of tears. And then I took Isabella to my parent's house to hang out for the day so that she didn't have to go to two appointments in one day. I saw my mom, and you know how some times, when you see your mom, you can't keep all that you've been trying to keep in, in? Yeah, I lost it. My mom told me to leave the kids and go somewhere until we needed to leave for Isaac's appointment. I sat in a parking lot and cried. Pulled it together, picked up Isaac, and headed to feeding therapy. By the grace of God, he ate from a spoon. That was my gift for the day, and thankfully, I was given that gift because Isaac decided to let his true colors show for the OT Eval. It went something like this:
"Isaac, let's stack a tower! Can you take a turn after I take a turn?"
Isaac sat and stared with his angry eyes, pulling his hair, whipped out his foot and knocked over the tower.
"You're being silly. Let's build a tower!"
Angry eyes, avoiding eye contact aside from an occasional mean side glance. Kicked over tower, and scooted screaming to a different toy to bang his head on it.
"Look Isaac! I'm going to make a picture, can you make lines like I make lines?"
Angry eyes, pulling hair, grabbed marker and threw it across the room.
Then he was supposed to make horizontal lines...he grabbed the marker, stabbed the paper a few times, then threw it.
So, after an hour we called it quits. At that point he was sitting in a corner pulling his hair, and staring at the floor. She suggested I attend a parenting class to deal with his behavior, and also recommended OT, weekly.
Well, we survived the week. We're all in one piece, though a bit mentally unstable over here.
Next time, pictures of Isaac walking!
Sunday, June 10, 2012
a dream
I've always had incredibly vivid dreams. At times, this is considered a blessing, or a curse. While in high school, I experienced the same dream scenario over and over again for an entire year, until finally, it went away. Everyone I shared it with, thought I was crazy.
Last night, I dreamt that I was eating a piece of bread, and Isaac walked over to me and took one bite after another, and ate the rest of my bread.
I've been up late the past few nights researching feeding therapy techniques. Somehow our feeding therapy has turned into speech therapy, and that annoys the crap out of me. Supposedly, the SLP we've been seeing for almost a year, is one of the best. At the moment, I'm failing to see what we've accomplished in this last year (in terms of feeding). In my dreariest moment, I'd say we've gone backwards. Lovely, right?
His speech has improved. Or more specifically, his attempt to make sounds. His SLP tells me I should make a list of all of the words he says, so that I can feel good about his progress. I should do that, but it's hard when, uh, ah, e, ay, duh make up a majority of his words and each of those sounds means something different according to context. He does say, bebe (baby), ball, mama, da, and a few others that you would probably be able to understand.
He may have dysphasia; he may have apraxia. It's all too soon to tell. Basically, what I was told a couple weeks ago, is that he will probably be able to say words, but the more complex your thoughts become, the harder it is to clearly share those thoughts, and that will probably be Isaac's case.
Do you know how many technicalities there are to forming sounds and eating? I bet you don't.
Isaac is supposed to sign something or make a sound related to the item he wants. Walter got mad at me this morning for holding out on Isaac before rewarding him with the toy he wanted. "Can't you just give it to him?" he said. I can. But what good will that do in the long run.
Sometimes I want to throw in the towel. I want to just stick food in an IV bag for the rest of his life. Sometimes I don't want to make him work for anything because all of that work means that I have to sit through an hour of speech therapy each week while he goes from angry-eyed-passivity to full blown anger that he actually has to do something; to make one seemingly simple sound before he gets the toy car.
The Occupational Therapist who completed Isaac's evaluation a few weeks ago shared two scenarios, one in which a young boy with Down Syndrome was handed everything he ever wanted, and never had to work to attain a goal, and is now a very unhappy adult. And another boy with Down Syndrome, was forced to work for that stupid toy, and had to say, /b/ for boy, and now he is a happy adult, and is able to hold a simple job.
I guess we'll keep plugging onward.
Last night, I dreamt that I was eating a piece of bread, and Isaac walked over to me and took one bite after another, and ate the rest of my bread.
I've been up late the past few nights researching feeding therapy techniques. Somehow our feeding therapy has turned into speech therapy, and that annoys the crap out of me. Supposedly, the SLP we've been seeing for almost a year, is one of the best. At the moment, I'm failing to see what we've accomplished in this last year (in terms of feeding). In my dreariest moment, I'd say we've gone backwards. Lovely, right?
His speech has improved. Or more specifically, his attempt to make sounds. His SLP tells me I should make a list of all of the words he says, so that I can feel good about his progress. I should do that, but it's hard when, uh, ah, e, ay, duh make up a majority of his words and each of those sounds means something different according to context. He does say, bebe (baby), ball, mama, da, and a few others that you would probably be able to understand.
He may have dysphasia; he may have apraxia. It's all too soon to tell. Basically, what I was told a couple weeks ago, is that he will probably be able to say words, but the more complex your thoughts become, the harder it is to clearly share those thoughts, and that will probably be Isaac's case.
Do you know how many technicalities there are to forming sounds and eating? I bet you don't.
Isaac is supposed to sign something or make a sound related to the item he wants. Walter got mad at me this morning for holding out on Isaac before rewarding him with the toy he wanted. "Can't you just give it to him?" he said. I can. But what good will that do in the long run.
Sometimes I want to throw in the towel. I want to just stick food in an IV bag for the rest of his life. Sometimes I don't want to make him work for anything because all of that work means that I have to sit through an hour of speech therapy each week while he goes from angry-eyed-passivity to full blown anger that he actually has to do something; to make one seemingly simple sound before he gets the toy car.
The Occupational Therapist who completed Isaac's evaluation a few weeks ago shared two scenarios, one in which a young boy with Down Syndrome was handed everything he ever wanted, and never had to work to attain a goal, and is now a very unhappy adult. And another boy with Down Syndrome, was forced to work for that stupid toy, and had to say, /b/ for boy, and now he is a happy adult, and is able to hold a simple job.
I guess we'll keep plugging onward.
Subscribe to:
Posts (Atom)