holy crapballs. two days ago Bean had a FABULOUS big sister day with Bug. She helped her out on the computer, gently guiding her through games they both enjoy. she called Bug over to play with her, and when she saw i was stressed of having Bug climb all over me she said "Bug, come over here and play with me, give mom a break wouldja?" oh it was FABULOUS! my heart soared and i felt for just a moment like a parent of two neuotypical children. that night she lost her 7th tooth. and she was beaming. a GREAT day in our world.
yesterday was our weekly OT session with Bean and her OT. since Nana had a total knee replacement surgery two fridays ago, she was unable to take Bug, so PapaBear and Bug returned jars to the farm where we get our local raw milk (uh, YUM!) and went to the auto parts store to pick up parts he needed for his zombie apocalypse machine, aka his baja. Bean had a joint OT session with another lil girl. who had just turned 8. they both encouraged eachother, and really enjoyed working together through the obstacle courses, climbing, tugging, etc. it was GREAT for Bean to connect with a lil girl so similar to her. made my heart sing.
when we left OT with PapaBear and Bug, both Bug and Bean were CRANKY, and in fine form. screeching, hitting eachother in their seats, Bug trying to get out of her 5pt harness, Bean screaming "shut up bug, i hate you, i want to kill you!" etc. which sets PapaBear off. we ended up making it to the cupcakery my friend opened to devour the most delicious cuppycakes, play candy land, and chill while the weather went from sunny to hailing, and back to sunny.
heading home the girls were still cranky. both screaming for a toy they have wanted for a long time. a toy i wasnt fully copacetic with.
and yet, PapaBear caved. he cant stand to see his babies upset. i also cant stand to see them upset. it breaks my heart. but i hate buying them all of this plastic made in china toxic crap. also, i am not a fan of the toy itself. as the hippie feminista mama of two little girls, it KILLS me to have them play with these dolls all tarted up with oddly skinny disfigured bodies and faces painted up provocatively. despite my feelings on it, he caved and went out and bought these hootchie monsters for them. and they were thrilled. totally excited. for an hour. then, "now i want the beach one" and "this isnt the exact one i wanted, i wanted the one with the pet, not the dance one" they are playing with them still today, but instead of playing together like they were last night, the girls are now staunchly opposed to their dolls being friends. instead they are shouting and screaming and flailing limbs in efforts to inflict as much damage on their sibling as possible.
i am honestly at a loss as to what to do about this sibling crap.
logically i know, if ig et them involved in an activity, together with me, there should be minimal fighting. if i keep them busy, if i take them out on adventures, if i get more involved one on one in their active play, it will lessen the bodily harm they cause to eachother. being a mother with an invisible chronic illness that causes intense pain and extreme fatigue and brain fog makes it really hard to do these things for an extended ammount of time. AND keeping our home picked up, tidy, and even (dare i HOPE?) clean, while engaging them in active play... i would be writhing in pain at the end of the day. but it is almost impossible to find a dr willing to Rx the only meds that help take the edge off the pain. so, i must choose to be a great mom, and at the end of the day writhe and cry, and be unable to move the next day, or... be a semi good enough mom, still be in pain, but not as much, choose my spoons to use, and essentially watch my girls tear their relationship apart, get stressed out, and frustrated.
so, yeah. i feel pretty damned about our whole situation.
how NOT fair is it to not only have an ICI (invisible chronic illness), but also have a special needs child, AND live with two grown men that were not really raised in the first place?
so, life = not fair. time to pull up my big girl panties and keep on keepin on.
Showing posts with label OT. Show all posts
Showing posts with label OT. Show all posts
Thursday, April 14, 2011
Thursday, March 31, 2011
the ick
so for the past week we have been a host to THE ICK. Bug spends time at Nana's house on Wednesdays while Bean has OT, and Bean spends time at Nana's house on Fridays. Some Fridays Nana takes Bean bowling. last Friday when they went, she spent the whole time yawning, and was only wanting to mildly bowl. when she got home at 7pm, she voluntarily headed straight for her bed and went to sleep almost immediately. by morning she had a fever, was full of mucus in her upper respiratory area, and was achy. My big girl was SICK. She spent the next two days wanting only to lay in her bed, and watch TV, or play on the ipad. She wasn't bouncing around, running up and down the hall and living room of our small apartment. Essentially, it really worried me. Cause normally this kid cant sit still. ever. even when she is sitting, she is wiggling, or seeking out other sensory input. so, sad panda.
Then, Bug started getting a fever, just as Bean's fever was starting to break. the mucus started flowing, followed by a cough, that they now both shared. LOTS of nose blowing happening! Bug got more snuggly, and Bean even asked for hugs and snuggles too, a BIG difference from her normal hands off status.
then... i felt tired. REALLY tired. ended up taking an impromptu nap on the couch with Bug for 3 hours on Monday night. when i woke up, i had a raging fever, mucus, and a mild cough, after a full night of tossing and turning, sweats, chills, aches, coughing, snorgling my boogies, and helping the girls with their similar symptoms, i woke up feeling like death warmed over. i spent the day on the couch, only rising to wipe a butt, or feed a mouth. by 2 i was ready for PapaBear to come home. but he was at his first day of classes for the semester. he had to attend all classes, at least to get each syllabus. so he was unable to come home before 6:30pm.
i spent the night in bed, and most of wednesday/yesterday. last night my fever finally broke for good. i hope. but PapaBear started feeling it. He went to classes today, but i am sure he is going to feel like shit when he gets home.
a bit of PapaBear history. his mother had Huntingtons. She spent her last decade in bed. the last few of those years unable to speak more than a word or two a day. needing round the clock care. She died when Bean was 15mo old. for most of the last few years BIL was her sole care provider. In their childhood they were abused and neglected, they were the stinky kids. the kids playing in the snow in shorts and flip flops because no one encouraged them or provided for them to wear warm clothing. The state services came and investigated. MANY times. but never did anything. not once. as they got older, (like 7 and 9) all the housekeeping, food making, and care was plopped on them. their step father ended up going blind, and when PapaBear was away at JobCorp he died in a care home. So when their mom started getting much worse, they rejected the idea of a care home. choosing instead to care for her themselves. unfortunately the apartment they had lived in for 17 years, was run by a slum lord, had a ton of cats, and both of the guys were on burn out. BIL was being paid to care for her, through the state and senior services. and they even had a case worker come out once a month. and NO ONE, not one single person ever stepped in and pulled her from that situation. no one offered any more help other than helping her bathe once a week, and a haircut every two months. and the occasional box of food from a local church. it was BAD. when DH and i married we moved an hour away from BIL and MIL. then i realized, he has PTSD about dealing with sick people. so when anyone around him gets sick, he gets bitter. and angry, and spiteful. and i dont blame him. i cant. he is a product of his environment.
but that doesnt mean i like it.
and it doesnt make the reactions ok.
he needs help getting through these traumas he has suffered through at the hands of his family.
and that help is going to come in therapy form. if only we could get him into a good therapist.
Bean is getting some of her energy back. She has been setting up her "living room" in the living room. she has a little pop-up play tent that she uses to take space, while still being in the same space as everyone else. it helps her a TON. and she has even been encouraging Bug to play with her. so YAY.
this morning she had an explosion. a big one. tried to punch my face, got in my face and screamed "you idiot mom! i hate you. i want to kill you. i want you dead! idiot mom!" please keep in mind she has NEVER heard another person talk to anyone else like that. ever. EVER. this all comes from inside her own being. it hurts. it cuts me down to my core. and it triggers all sorts of feelings for me.
when i was her age, i was almost the exact same way. i HATED my sister. and i was volatile and explosive. i screamed at my mom, in the same ways. and i can see myself in her. and it hurts. because i still havent forgiven my childhood self for hurting those that i love. so while i can empathize, it doesnt make it easier.
and Bug has just been a little trooper this week. she has always been super snuggly, and has wanted more snuggles, but hasnt moaned once about how crappy she feels, even though her boogers are thick and flowing, and her cough is icky. funny how the 3.5yo handles this ick better than the rest of us.
this week we are starting a chart. since Bean is reluctant to do OT therapies at home, especially those she finds unsavory, we are going to have a list of therapies like heavy work, etc that she can choose from. and for every one she does she gets a sticker on her chart. for every sicker she gets, she can pick a youtube video to watch at bedtime on the ipad on her bed. i am a strong beleiver in no punishments and no rewards, but, i think in this case, it will be incredibly beneficial. it will help her do the therapies she needs to help her feel centered. she will eventually learn to use these therapies to self regulate. something that she is not yet able to do, inspite of the OT once a week.
i am also creating a daily and weekly schedule for myself, with cleaning, and OTAH (OT at home) reminders for ME. and family time, OT, PapaBear's classes, Nana days, etc on the weekly schedule, for all of us.
i am really hoping these things help us.
Then, Bug started getting a fever, just as Bean's fever was starting to break. the mucus started flowing, followed by a cough, that they now both shared. LOTS of nose blowing happening! Bug got more snuggly, and Bean even asked for hugs and snuggles too, a BIG difference from her normal hands off status.
then... i felt tired. REALLY tired. ended up taking an impromptu nap on the couch with Bug for 3 hours on Monday night. when i woke up, i had a raging fever, mucus, and a mild cough, after a full night of tossing and turning, sweats, chills, aches, coughing, snorgling my boogies, and helping the girls with their similar symptoms, i woke up feeling like death warmed over. i spent the day on the couch, only rising to wipe a butt, or feed a mouth. by 2 i was ready for PapaBear to come home. but he was at his first day of classes for the semester. he had to attend all classes, at least to get each syllabus. so he was unable to come home before 6:30pm.
i spent the night in bed, and most of wednesday/yesterday. last night my fever finally broke for good. i hope. but PapaBear started feeling it. He went to classes today, but i am sure he is going to feel like shit when he gets home.
a bit of PapaBear history. his mother had Huntingtons. She spent her last decade in bed. the last few of those years unable to speak more than a word or two a day. needing round the clock care. She died when Bean was 15mo old. for most of the last few years BIL was her sole care provider. In their childhood they were abused and neglected, they were the stinky kids. the kids playing in the snow in shorts and flip flops because no one encouraged them or provided for them to wear warm clothing. The state services came and investigated. MANY times. but never did anything. not once. as they got older, (like 7 and 9) all the housekeeping, food making, and care was plopped on them. their step father ended up going blind, and when PapaBear was away at JobCorp he died in a care home. So when their mom started getting much worse, they rejected the idea of a care home. choosing instead to care for her themselves. unfortunately the apartment they had lived in for 17 years, was run by a slum lord, had a ton of cats, and both of the guys were on burn out. BIL was being paid to care for her, through the state and senior services. and they even had a case worker come out once a month. and NO ONE, not one single person ever stepped in and pulled her from that situation. no one offered any more help other than helping her bathe once a week, and a haircut every two months. and the occasional box of food from a local church. it was BAD. when DH and i married we moved an hour away from BIL and MIL. then i realized, he has PTSD about dealing with sick people. so when anyone around him gets sick, he gets bitter. and angry, and spiteful. and i dont blame him. i cant. he is a product of his environment.
but that doesnt mean i like it.
and it doesnt make the reactions ok.
he needs help getting through these traumas he has suffered through at the hands of his family.
and that help is going to come in therapy form. if only we could get him into a good therapist.
Bean is getting some of her energy back. She has been setting up her "living room" in the living room. she has a little pop-up play tent that she uses to take space, while still being in the same space as everyone else. it helps her a TON. and she has even been encouraging Bug to play with her. so YAY.
this morning she had an explosion. a big one. tried to punch my face, got in my face and screamed "you idiot mom! i hate you. i want to kill you. i want you dead! idiot mom!" please keep in mind she has NEVER heard another person talk to anyone else like that. ever. EVER. this all comes from inside her own being. it hurts. it cuts me down to my core. and it triggers all sorts of feelings for me.
when i was her age, i was almost the exact same way. i HATED my sister. and i was volatile and explosive. i screamed at my mom, in the same ways. and i can see myself in her. and it hurts. because i still havent forgiven my childhood self for hurting those that i love. so while i can empathize, it doesnt make it easier.
and Bug has just been a little trooper this week. she has always been super snuggly, and has wanted more snuggles, but hasnt moaned once about how crappy she feels, even though her boogers are thick and flowing, and her cough is icky. funny how the 3.5yo handles this ick better than the rest of us.
this week we are starting a chart. since Bean is reluctant to do OT therapies at home, especially those she finds unsavory, we are going to have a list of therapies like heavy work, etc that she can choose from. and for every one she does she gets a sticker on her chart. for every sicker she gets, she can pick a youtube video to watch at bedtime on the ipad on her bed. i am a strong beleiver in no punishments and no rewards, but, i think in this case, it will be incredibly beneficial. it will help her do the therapies she needs to help her feel centered. she will eventually learn to use these therapies to self regulate. something that she is not yet able to do, inspite of the OT once a week.
i am also creating a daily and weekly schedule for myself, with cleaning, and OTAH (OT at home) reminders for ME. and family time, OT, PapaBear's classes, Nana days, etc on the weekly schedule, for all of us.
i am really hoping these things help us.
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