Ben has been sick, on and off, for a month. Enough! I've been to the doctor three times asking them to find out what's wrong with him, and they just can't put their finger on it. Last week we went back and I asked for a test for mono. We saw one of my favorite doctors in the practice, very kind and thorough, and he said he thinks Ben has had a sinus infection this whole time. I won't even tell you all the things they have checked for! Or all the bodily fluids they have extracted while searching for an answer! We've had quite enough 'togetherness' this month, while Ben has been home sick from school. Time to get back to normal.
I was talking to my brother last week, venting about my crazy little life. He said he has a poster in his office that says "Normal is just a setting on a washing machine." That is a poster I need plastered all over our home! I love it. It's so true, there really is no "normal." But a lot of times it feels like whatever "normal" might be, we are the opposite of that. For instance, any time it says we have an easy day on the calendar, I anticipate and EXPECT all hell to break loose with at least one kid. There is never ever an easy day where everything goes as planned. I'm sure this is true for many families, but really, it seems more true for us than anyone else I know.
Take last week. Monday went pretty much as planned. I should have known the other shoe would drop. Tuesday morning, Ben was in a snit, fought with Jonah at the bus stop, forgot to take his morning meds. I had Alex go to school to give Ben the meds on his way to work. An hour later as I was getting ready for my day, our wonderful middle school nurse called.
Uh oh.
She said Ben was in her office, not feeling well. Gr. I tested him to see if it was anxiety or real illness. Usually if I say "Sorry, I can't pick you up because I have to take Ella to dance class." or something along those lines, if it's anxiety the boys will agree to go back to class. If it's illness they break into tears. So Ben grudgingly agreed to try to go back to class, but let the nurse and I know he wasn't faking, and didn't feel good for real.
As I sat in Ella's dance studio, the nurse called back. She said Ben was back in her office, with another low grade fever. After Ben broke into tears at the mere thought of going back to class, I said I'd come and pick him up after we finished dance class. There went all my plans for the day. And it really wouldn't be so bad if this didn't happen ALL THE TIME. We picked Ben up, and I got him in to see the doctor for the third time this month to figure out what else could be causing his icky symptoms.
It was time to go to the doctor that afternoon, and I was trying to cajole Ben into putting his shoes on and getting in the car. He was obsessed with finding a certain teddy bear to bring to the doctor to help him stay calm, and was devastated because he couldn't find it. I stayed calm and helped him look, although we were nearing being late for the appointment. I knew Ben was sick, which makes him closer at all times to having meltdowns. We looked everywhere for this silly teddy bear. Couldn't find it. I did, however, find Ella's cup of forgotten, rotten chocolate milk in the basement. Which proceeded to explode all over me as I brought it upstairs to deal with. ugh.
I ran to change. I didn't have time to shower, and couldn't get the smell off me. As we finally got in the car, Ben and Ella said "EW! Something stinks!" Yeah. That's me. I had to apologize to the nurse AND the doctor for the horrible stench in the room as Ben was examined. Only me. These things can only happen to me.
Wednesday, Ben was home sick again. Hurray. Not.
Wednesdays are absolutely insane, logistically. This week on top of everything else, not only am I dealing with one sick kid during the waking hours, but he also isn't sleeping well, and Ella never sleeps well. Wednesday morning, I awoke in Ella's room, hurting from head to toe from being scrunched in a little bed all night. Alex had Aidan ready for school, bless his sweet soul. He had Aidan's lunch made, had him dressed, had given him his meds, and had his breakfast done. AND there was fresh coffee brewing. I know, I married a saint.
I took Ella to school, with Ben. Went home, with Ben. Played legos, with Ben. Went to pick up Ella, with Ben. Ate lunch, with Ben. Took Ella to therapy, yep, with Ben. Brought the kiddos home. Met the babysitter. Took Ben and went to pick up Aidan from school. Went to Aidan's therapy. Went home, made dinner, finished homework time, did baths, wrangled two kids to bed while Alex took Jonah to Youth Group and Ben snuggled in our bed.
I need about 30 of me.
Ben was sick the rest of the week. But he started to bounce back after a couple days on antibiotics, and this morning announced he "felt great!" Knowing my non-normal life, I didn't get my hopes up too high, even after this announcement.
Sure enough, later this morning the school nurse called (who I am now on a hugging basis with, just let me add) and Ben was feeling terrible. The nurse had already explained to Ben that sometimes even when our tummies hurt we have to stay at school and do what we have to do. Ben didn't go for that and wanted to talk to me. After many times of him pleading for me to pick him up and me saying I can't (because I know these are anxiety symptoms, not illness symptoms), I asked him if it would help him get through the day if he had something to look forward to after school. He said yes. I asked what that should be. We agreed that he could get a lego mini figure ($1) at Walgreens if he stayed at school the rest of the day without going to the nurse's office again. (I'm not above bribery if it will help the kid stay at school) I told Ben that every day he is at school, it will be easier to be there. He won't be behind in homework, he won't be stressed about not knowing what's going on...it'll hopefully get easier.
I read an article in People Magazine today about a high profile person whose son committed suicide after living with depression for his entire young life. As I read, I saw my life in those words. How the boy needed to be home schooled after 2 weeks in middle school because he just couldn't handle it. How he would react out of proportion to things. So many things hit home. Even with all the resources we are giving our kids, I still worry about their futures. Should I pull them out of school and homeschool? Should they go to a therapeutic day school? Will they get the IEP's I'm fighting so hard for?
I would like a crystal ball, please. To know if I'm making the right Mommy Decisions along this tough path. You just never know. You do the best you can and hope it's enough.
I do know that today after school, Ben and I will be pounding out the missing assignments. His teachers are concerned about his grades. I'm glad to hear that because I am too! We'll see what we can do. We'll see what this new week of worries brings.
Monday, September 30, 2013
Thursday, September 19, 2013
Light in the Darkness
I'm sitting at gymnastics, watching from the waiting room as Ella hops down a long trampoline with her arms up above her head and a stuffed animal between her knees. Her bright blond hair bounces and she smiles with pride. She amazes me. I am so amazed at the progress she has made in the past year.
Thank you to all the people who have given Ella the skills to be successful in all areas of her life! Thank you to Carol for seeing the athlete in my daughter, and teaching her how to do so many things with her body. Last year, Ella couldn't twist her torso because her body and brain hadn't discovered that is something a human is made to do. This impacted many of her gross motor skills. Now Ella is taking dance class, cheer class, and gymnastics. She twists and turns and does ballet and tap dance and walks on a balance beam several feet off the floor. Incredible.
Thank you to Ashley for showing Ella how her mouth can make so many sounds when she talks, so that people can understand her better and better. Thank you for giving me the tools to help her practice at home. Thank you for seeing the brightness and sharpness in Ella, and for knowing she just needed a little nudge to get her speech going on the right track. Thank you for your gentle spirit that matches Ella's, so she is always happy to see you and never reluctant to "play." Incredible.
Thank you to Laurie for the continuing help with all things sensory. All the things you give me to try are like miracles for Ella. This morning she told me she "loves astronaut training!" I can see changes happening before my eyes because of this technique. Ella is not so scared when other kids invade her personal space. She does not recoil when touched by other kids. In her therapy group last week, Laurie told me that another girl touched Ella's fingernails and asked what was on them. Ella shrugged and said "nail polish." Last year, this interaction would have derailed Ella. She would have been blown over with the impact of someone else she doesn't really know touching her. She would have recoiled into herself and not been able to speak. What progress!
Ella is sleeping a little better, especially since I started using our weighted blanket a couple nights ago. I tried it a while ago but Ella was very upset that this strange thing was on her in the middle of the night. So we put it away and just got it out to try again.
Ella is so brave at the playground, at gymnastics-- things that used to frighten her to the point of tears she is now conquering every day. She keeps up with her peers much better, and isn't so afraid to try new things like doing a backward flip in gymnastics. Things like being upside down used to be just impossible because her vestibular system was all out of whack. Now she does flips and summersaults without a second thought. Is this really the same child as a year ago!? Even little things have changed, like Ella doesn't scream like I'm torturing her when I put a teeny ponytail in her hair. She doesn't cry when she is dropped off at school, classes, therapy...She's swinging from a bar right now without help for crying out loud!! What?? Is this really my child? She is just so much more comfortable in the world, which as a mother, is one of the most important things you want for your child. You want them to just find comfort in their skin, in their universe. And I know from my other children, this is not something that comes easily or often. This is something we fight for every day, yearn for, hope for, search for. It's good to take a step back and realize we are making little improvements here and there, and all our hard work is paying off in some places. Like for Ella. Incredible.
When you have a bunch of kids who get a bunch of interventions, it's sometimes hard to keep track of what's helping whom, who's making improvements, who needs their meds tweaked, who needs more sleep, who needs a bath to calm down, whose tooth is loose, who needs to see the cardiologist or the GI doctor or the hip specialist or the podiatrist or the allergist or the pediatrician...so when I remember to stop and look at what is going on in each of my children, and I come back with the kind of strides Ella is making, that is huge. And worth taking a minute to say thank you. It's so crazy to me that we see our therapists once a week, they do their thing with each of my kids for an hour, then we go home and live our daily lives. And the changes the therapists are making for us are completely life-altering! Completely, amazingly, incredible. And yet, I don't know if they know what a gift they give the families they work with every day. They give us hope, tools to help our kids where there were none before, they give us ideas of how to work with our kids to help them be more comfortable and successful in their own skin. This is probably the most important job on the planet, being a therapist. And the waiting room is full of all of us nonchalant families every day, just there for yet another therapy, not realizing that today may be the day that something sticks for our kid!
Ella had her 4 year checkup with our pediatrician yesterday. It struck me how different it is going to our wonderful pediatrician than it is to go to The Therapy Tree every afternoon five days a week. I love our pediatrician. She's great at what she does. (She did say Ella needs to go back to the cardiologist because her heart is acting more funky than last year. Thanks. Really needed to hear that.) But there is such a difference because when I say that Ella gets up between 4:30 and 6am every day, the pediatrician says things like "it's really important for you both to get more sleep. (Duh) Try using a sticker chart for every time Ella stays in her room longer. (Been there done that) Try having her play quietly in her room without coming to get you. (She shares a room with Aidan. Even if he wasn't also an early riser, she would wake him up doing that.) She really needs to sleep more. (Ya think?)" These are ideas I have been trying for ELEVEN years with all my kids. Sometimes we need more help than just these answers.
When I say to our OT that Ella is having sleep issues, I get practical, creative things to try. A weighted blanket might help. Maybe brushing. Maybe astronaut training. Maybe an alarm clock that has a sun and moon, so when the sun is lit, Ella knows when to come out of her room. Maybe a protein snack before bed. Maybe therapeutic listening. Yes. These things actually help.
I'm not saying our pediatrician is totally useless. I'm just saying that this was the problem 11 years ago, and still is today: I can't find real help for my really intense kiddo problems at our doctor's office. Which I think is a shame. When you're a family in crisis, a pediatrician should know what will help, or at least where else to look for help. I have discovered through my dealings with people in the medical profession that they are awesome at helping when a body is broken or sick, or if a heart needs monitoring. But when it comes to things like how to make your child more comfortable in their world (sensory issues, mood issues, tic issues, eating issues, sleeping issues, anger issues, anxiety issues) I have learned much much more from our therapists. I know I'm a "think outside the box" type of person, and I look for things that help the whole child, not just meds to fix a problem. I think when you're a parent, you just have to find the place that fits you the best to look for help. I love our team of medical professionals. But when our family is in crisis, which we often seem to be, I look to our team of therapists. And they should win Olympic Gold for that, or a Nobel Prize, or Therapists Of The Year, or something. We see eight therapists for eleven therapies each week, give or take a couple extras here and there. Little by little, these incredible, "think outside the box" professionals are changing the worlds my kids live in. It's slow, slow work. But it does work. I know because I have a little girl who went into her gymnastics class without crying this morning, and who is now walking across a balance beam, while kicking each leg up in the air one at a time, with no coach to hold on to. This girl did not exist a year ago. So thank you, again, to all of Ella's therapists, and Ben's, and Aidan's, and Jonah's. Thank you for the hope you give me five days a week. Thank you for helping my kids learn how to find the light in their darkness.
Thank you to all the people who have given Ella the skills to be successful in all areas of her life! Thank you to Carol for seeing the athlete in my daughter, and teaching her how to do so many things with her body. Last year, Ella couldn't twist her torso because her body and brain hadn't discovered that is something a human is made to do. This impacted many of her gross motor skills. Now Ella is taking dance class, cheer class, and gymnastics. She twists and turns and does ballet and tap dance and walks on a balance beam several feet off the floor. Incredible.
Thank you to Ashley for showing Ella how her mouth can make so many sounds when she talks, so that people can understand her better and better. Thank you for giving me the tools to help her practice at home. Thank you for seeing the brightness and sharpness in Ella, and for knowing she just needed a little nudge to get her speech going on the right track. Thank you for your gentle spirit that matches Ella's, so she is always happy to see you and never reluctant to "play." Incredible.
Thank you to Laurie for the continuing help with all things sensory. All the things you give me to try are like miracles for Ella. This morning she told me she "loves astronaut training!" I can see changes happening before my eyes because of this technique. Ella is not so scared when other kids invade her personal space. She does not recoil when touched by other kids. In her therapy group last week, Laurie told me that another girl touched Ella's fingernails and asked what was on them. Ella shrugged and said "nail polish." Last year, this interaction would have derailed Ella. She would have been blown over with the impact of someone else she doesn't really know touching her. She would have recoiled into herself and not been able to speak. What progress!
Ella is sleeping a little better, especially since I started using our weighted blanket a couple nights ago. I tried it a while ago but Ella was very upset that this strange thing was on her in the middle of the night. So we put it away and just got it out to try again.
Ella is so brave at the playground, at gymnastics-- things that used to frighten her to the point of tears she is now conquering every day. She keeps up with her peers much better, and isn't so afraid to try new things like doing a backward flip in gymnastics. Things like being upside down used to be just impossible because her vestibular system was all out of whack. Now she does flips and summersaults without a second thought. Is this really the same child as a year ago!? Even little things have changed, like Ella doesn't scream like I'm torturing her when I put a teeny ponytail in her hair. She doesn't cry when she is dropped off at school, classes, therapy...She's swinging from a bar right now without help for crying out loud!! What?? Is this really my child? She is just so much more comfortable in the world, which as a mother, is one of the most important things you want for your child. You want them to just find comfort in their skin, in their universe. And I know from my other children, this is not something that comes easily or often. This is something we fight for every day, yearn for, hope for, search for. It's good to take a step back and realize we are making little improvements here and there, and all our hard work is paying off in some places. Like for Ella. Incredible.
When you have a bunch of kids who get a bunch of interventions, it's sometimes hard to keep track of what's helping whom, who's making improvements, who needs their meds tweaked, who needs more sleep, who needs a bath to calm down, whose tooth is loose, who needs to see the cardiologist or the GI doctor or the hip specialist or the podiatrist or the allergist or the pediatrician...so when I remember to stop and look at what is going on in each of my children, and I come back with the kind of strides Ella is making, that is huge. And worth taking a minute to say thank you. It's so crazy to me that we see our therapists once a week, they do their thing with each of my kids for an hour, then we go home and live our daily lives. And the changes the therapists are making for us are completely life-altering! Completely, amazingly, incredible. And yet, I don't know if they know what a gift they give the families they work with every day. They give us hope, tools to help our kids where there were none before, they give us ideas of how to work with our kids to help them be more comfortable and successful in their own skin. This is probably the most important job on the planet, being a therapist. And the waiting room is full of all of us nonchalant families every day, just there for yet another therapy, not realizing that today may be the day that something sticks for our kid!
Ella had her 4 year checkup with our pediatrician yesterday. It struck me how different it is going to our wonderful pediatrician than it is to go to The Therapy Tree every afternoon five days a week. I love our pediatrician. She's great at what she does. (She did say Ella needs to go back to the cardiologist because her heart is acting more funky than last year. Thanks. Really needed to hear that.) But there is such a difference because when I say that Ella gets up between 4:30 and 6am every day, the pediatrician says things like "it's really important for you both to get more sleep. (Duh) Try using a sticker chart for every time Ella stays in her room longer. (Been there done that) Try having her play quietly in her room without coming to get you. (She shares a room with Aidan. Even if he wasn't also an early riser, she would wake him up doing that.) She really needs to sleep more. (Ya think?)" These are ideas I have been trying for ELEVEN years with all my kids. Sometimes we need more help than just these answers.
When I say to our OT that Ella is having sleep issues, I get practical, creative things to try. A weighted blanket might help. Maybe brushing. Maybe astronaut training. Maybe an alarm clock that has a sun and moon, so when the sun is lit, Ella knows when to come out of her room. Maybe a protein snack before bed. Maybe therapeutic listening. Yes. These things actually help.
I'm not saying our pediatrician is totally useless. I'm just saying that this was the problem 11 years ago, and still is today: I can't find real help for my really intense kiddo problems at our doctor's office. Which I think is a shame. When you're a family in crisis, a pediatrician should know what will help, or at least where else to look for help. I have discovered through my dealings with people in the medical profession that they are awesome at helping when a body is broken or sick, or if a heart needs monitoring. But when it comes to things like how to make your child more comfortable in their world (sensory issues, mood issues, tic issues, eating issues, sleeping issues, anger issues, anxiety issues) I have learned much much more from our therapists. I know I'm a "think outside the box" type of person, and I look for things that help the whole child, not just meds to fix a problem. I think when you're a parent, you just have to find the place that fits you the best to look for help. I love our team of medical professionals. But when our family is in crisis, which we often seem to be, I look to our team of therapists. And they should win Olympic Gold for that, or a Nobel Prize, or Therapists Of The Year, or something. We see eight therapists for eleven therapies each week, give or take a couple extras here and there. Little by little, these incredible, "think outside the box" professionals are changing the worlds my kids live in. It's slow, slow work. But it does work. I know because I have a little girl who went into her gymnastics class without crying this morning, and who is now walking across a balance beam, while kicking each leg up in the air one at a time, with no coach to hold on to. This girl did not exist a year ago. So thank you, again, to all of Ella's therapists, and Ben's, and Aidan's, and Jonah's. Thank you for the hope you give me five days a week. Thank you for helping my kids learn how to find the light in their darkness.
Monday, September 16, 2013
Happy Anniversary
This past weekend, Alex and I were given the amazing gift of a couple days away at an absolutely magnificent place- Canoe Bay in Wisconsin. Grandpa and Grandma stayed with the kids and Alex and I got to go rest, rejuvenate, and have uninterrupted conversations. It was magical. It was stunning. And it reminded me, as time with Alex always does, of how much I love my hubby.
Alex and I started dating 19 years ago. We have been married for 13- today is our anniversary. We have had four preemies, four dogs, one hamster, a lot of challenges, and a lot of love. Every single day I'm grateful I married my best friend. When Jonah and Ben were in the NICU after being born 11 weeks early, I had the stupidity to read a statistic that said about half of marriages at that time ended in divorce. The statistic went on to say that if you have multiples, the divorce rate is higher. AND if your multiples happen to be preemies, forget about it. You're pretty much doomed.
HA! I say to that statistic. It's not true for everyone! Some couples defy logic, statistics, common sense, life. Some couples are meant to be together and because they know that, cherish each other more than anything no matter what road blocks they face along the way. Multiples, preemies, dogs gone wrong, special needs, living with parents, only one income, therapies, you name it, we've been through it. I think it's just solidified our relationship and made us more invincible than ever before. I think hardship can crumble a marriage, or it can cement it. Alex and I work hard to make sure nothing will tear ours apart.
I love that Alex is the kind of Daddy to sit with Ella on his lap at the computer and teach her how to put shoes she loves into her online wish list. I love that he makes me tea with just the perfect amount of honey when I'm sick. I love that he unclogs the toilets, fixes light sabers, and takes the dog out on rainy afternoons. I love that he laughs at my dumb jokes. I love that he helps the boys with their math. I love that as he pushed my wheelchair after I had Ben and Jonah, he would warn me when there was a bump in the hospital hallway so I could prepare for pain after my C-section: "bump," he would say.
I love that when I come home with all kinds of crazy things to try to help the kids with their issues, he just nods and smiles and says "let's try it!" Plastic brushes, chair pads, chewy things, funky balls, essential oils, special diets, vitamins, joint compressions, bear walks, vocabulary exercises, weighted blankets, weighted lap pads...The latest was a board covered in flannel, that the kids sit/lay on in different positions as I spin them a certain number of times in each direction. Then we shine flashlights that they follow with their eyes. It's called "Astronaut Training" and it's designed to help integrate the senses, especially the vestibular sense. It really works like magic. But I don't know many other parents who would be on board for such a weird looking thing. Alex is up for anything that might help the kids. Honestly, that's a rare thing for a Daddy, and I love that.
I love that Alex has taken apart and put back together our bunk beds at least 804 times, as certain kids need to share a room, certain kids are afraid to sleep in bunk beds, certain kids wet the bed too many times for me to keep changing the top bed sheets. I love that my hubby makes me pumpkin scones and Ellie Buns. I love that he lets me ramble on car rides. I love that he loves my nose ring. And helps me put a new one in when the old one falls out and I can't find the hole in my nostril anymore. I love how he laughs heartily when he thinks the rest of us are upstairs asleep and he watches a comedian on TV. I love that he lets me repaint whenever the whim catches me- as long as he doesn't have to do it. I love that he has the patience to get the dog to go out on his own, without pulling on his leash with impatience the way I do. I love that when I scream, Alex will come running to my rescue to find the spider, fly, bee, or frog that is terrifying me. I love that he thinks it's funny that I say all my quirks are "because I grew up in Africa." I love that he thinks toast with jelly is a great night-time dessert. I love that he paints my toe nails when I'm pregnant, and now he paints his little girl's nails. I love that he does ballet in the driveway to make the kids laugh while we wait for the bus on an anxious day. I love his passion for all his hobbies. I love his cooking. I love that he doesn't think I'm nuts. Most of the time. I love his resiliency and capacity for love and understanding. I love his strength. I love that he'll put up a tent in the backyard to camp with his sons, even though it always ends up to be just Daddy and Jonah. I love that he blow dries Ella's hair after her bath, with the special round brush she likes, if I'm not home to do it, so that she's not cold when she goes to bed with wet hair. I love that he eats cookies with me after the kids go to bed. I love that he kayaks with me. I love the way he rocks out to the music at church, and that he agrees to teach Sunday School with me. I love that we laugh together about the absolute insanity of our life that only this World Of Two really understand.
I love that Alex stays. He stays on this hard path with me, every day. He keeps coming home, keeps facing our challenges, keeps learning and growing. I love his patience with the kids. I love the way he snuggles with them. I love the way he plays with them. I love his belief in them. I just love all the millions of things that make him the amazing man I married. I am truly blessed to have this man by my side to add joy, strength, and hope to my life. I have always known what a special person Alex is. What I didn't know 19 or 13 years ago was how he would react to adversity, fear of losing children, the challenge of dealing with special needs...Alex surprises me every day with his unending strength, faith, and love. He makes me want to be a better person so he can be proud of me. Happy anniversary, babe. I love you. Thank you for everything you are.
Alex and I started dating 19 years ago. We have been married for 13- today is our anniversary. We have had four preemies, four dogs, one hamster, a lot of challenges, and a lot of love. Every single day I'm grateful I married my best friend. When Jonah and Ben were in the NICU after being born 11 weeks early, I had the stupidity to read a statistic that said about half of marriages at that time ended in divorce. The statistic went on to say that if you have multiples, the divorce rate is higher. AND if your multiples happen to be preemies, forget about it. You're pretty much doomed.
HA! I say to that statistic. It's not true for everyone! Some couples defy logic, statistics, common sense, life. Some couples are meant to be together and because they know that, cherish each other more than anything no matter what road blocks they face along the way. Multiples, preemies, dogs gone wrong, special needs, living with parents, only one income, therapies, you name it, we've been through it. I think it's just solidified our relationship and made us more invincible than ever before. I think hardship can crumble a marriage, or it can cement it. Alex and I work hard to make sure nothing will tear ours apart.
I love that Alex is the kind of Daddy to sit with Ella on his lap at the computer and teach her how to put shoes she loves into her online wish list. I love that he makes me tea with just the perfect amount of honey when I'm sick. I love that he unclogs the toilets, fixes light sabers, and takes the dog out on rainy afternoons. I love that he laughs at my dumb jokes. I love that he helps the boys with their math. I love that as he pushed my wheelchair after I had Ben and Jonah, he would warn me when there was a bump in the hospital hallway so I could prepare for pain after my C-section: "bump," he would say.
I love that when I come home with all kinds of crazy things to try to help the kids with their issues, he just nods and smiles and says "let's try it!" Plastic brushes, chair pads, chewy things, funky balls, essential oils, special diets, vitamins, joint compressions, bear walks, vocabulary exercises, weighted blankets, weighted lap pads...The latest was a board covered in flannel, that the kids sit/lay on in different positions as I spin them a certain number of times in each direction. Then we shine flashlights that they follow with their eyes. It's called "Astronaut Training" and it's designed to help integrate the senses, especially the vestibular sense. It really works like magic. But I don't know many other parents who would be on board for such a weird looking thing. Alex is up for anything that might help the kids. Honestly, that's a rare thing for a Daddy, and I love that.
I love that Alex has taken apart and put back together our bunk beds at least 804 times, as certain kids need to share a room, certain kids are afraid to sleep in bunk beds, certain kids wet the bed too many times for me to keep changing the top bed sheets. I love that my hubby makes me pumpkin scones and Ellie Buns. I love that he lets me ramble on car rides. I love that he loves my nose ring. And helps me put a new one in when the old one falls out and I can't find the hole in my nostril anymore. I love how he laughs heartily when he thinks the rest of us are upstairs asleep and he watches a comedian on TV. I love that he lets me repaint whenever the whim catches me- as long as he doesn't have to do it. I love that he has the patience to get the dog to go out on his own, without pulling on his leash with impatience the way I do. I love that when I scream, Alex will come running to my rescue to find the spider, fly, bee, or frog that is terrifying me. I love that he thinks it's funny that I say all my quirks are "because I grew up in Africa." I love that he thinks toast with jelly is a great night-time dessert. I love that he paints my toe nails when I'm pregnant, and now he paints his little girl's nails. I love that he does ballet in the driveway to make the kids laugh while we wait for the bus on an anxious day. I love his passion for all his hobbies. I love his cooking. I love that he doesn't think I'm nuts. Most of the time. I love his resiliency and capacity for love and understanding. I love his strength. I love that he'll put up a tent in the backyard to camp with his sons, even though it always ends up to be just Daddy and Jonah. I love that he blow dries Ella's hair after her bath, with the special round brush she likes, if I'm not home to do it, so that she's not cold when she goes to bed with wet hair. I love that he eats cookies with me after the kids go to bed. I love that he kayaks with me. I love the way he rocks out to the music at church, and that he agrees to teach Sunday School with me. I love that we laugh together about the absolute insanity of our life that only this World Of Two really understand.
I love that Alex stays. He stays on this hard path with me, every day. He keeps coming home, keeps facing our challenges, keeps learning and growing. I love his patience with the kids. I love the way he snuggles with them. I love the way he plays with them. I love his belief in them. I just love all the millions of things that make him the amazing man I married. I am truly blessed to have this man by my side to add joy, strength, and hope to my life. I have always known what a special person Alex is. What I didn't know 19 or 13 years ago was how he would react to adversity, fear of losing children, the challenge of dealing with special needs...Alex surprises me every day with his unending strength, faith, and love. He makes me want to be a better person so he can be proud of me. Happy anniversary, babe. I love you. Thank you for everything you are.
Wednesday, September 11, 2013
Bad Words
Warning: This post contains language not appropriate for children. Or some adults. Proceed with caution.
My four-year-old daughter was delivered, in tears, to our doorstep the other afternoon by one of her big brothers. They had been playing at a friend's house and Aidan brought Ella home because she was upset. I came to her and gave her hugs and smooches and asked her what had happened. She was so upset she couldn't speak for a few minutes. I thought whew, we must be dealing with a doozy here!
Finally, Ella told me that the friend she had been playing with, who is several years older than her, had called her a "bastard." What!?! The job of swearing at friends, neighbors, siblings and parents is usually reserved for our older boys! Not a girl down the street! I was shocked, and wondered if Ella had the story right. I didn't know if this friend had really ever even heard that word, because it doesn't seem like a word her family would be throwing around. Unlike our boys who swear on a pretty consistent basis.
*As a side note, the older boys do not swear because of their Tourette Syndrome, as many people assume when they hear of the boys' diagnosis. Only 5% of people who have TS have this symptom, where they swear uncontrollably. Our boys swear because of their mood disorders, their uncontrollable anger and lack of impulse control. Still not ok, but understandable if you know what is going on in their brains and bodies. One of our little darlings went through about a two year period where his favorite thing to verbally hurl at us was "You sh**ty assy f***." And he said it with such mentally-ill-venom, it was hard not to take him seriously and start believing that we were, in fact, the name that he called us. Whatever that was. Since we had never heard that particular term before, it was hard to know whether to laugh or cry when our little boy screamed these words at us. It was before he really knew what any of those words meant. Now when Alex and I are joking around together, we frequently use this term and chortle our hearts out at the crazy life we lead. *
As Ella calmed down, we talked about how swearing is not ok. This is a tough, and constant, conversation in our home because it's difficult to tell my toddler something is not acceptable when she sees her brothers doing it. They have consequences for their negative behavior, but usually the swearing is part of a rage and at that point we have bigger fish to fry than reprimanding foul language. Ella and Aidan are super smart when it comes to this unfortunate double standard. Neither of them wants to have a potty mouth. It upsets them when their brothers are so angry and sweary. So my youngest two understand that there are words that are not kind or acceptable, that we should not use. So I told Ella we would go talk to her friend and find out what happened and why she called Ella such a bad name.
Ella continued to say to me in a stunned voice "She called me a BASTARD!" Finally I said YES, I know what she called you, you can stop saying it now! No more!
We walked over to our friend's house to get Aidan for dinner, and to talk about what had transpired with Ella. Unlike some fellow mothers I have had experience with, I did not stomp over to their house, and stand on their porch shrieking and squawking, wagging my furious finger in her mother's face, making a spectacle of my anger for all the world to see. I feel like more is accomplished when cool heads and kind words prevail.
I talked with Ella and her friend, and calmly explained to the friend what Ella had told me. Without using the B Word, in case the friend had actually not really called my daughter that. Our friend said that she had been talking about how old she was, and how old Ella was. The friend said she had told Ella she was a toddler, and our friend thought maybe Ella had gotten upset about that. I turned to my innocent little reporter, and asked her if our friend had called her a "TODDLER." She said indignantly, "Yes!!"
Aha. Crisis averted.
So our neighbor had not, in fact, called my four-year-old a bastard. She had actually called my daughter a toddler. Two words, which in Ella's mind, are equivalent. She hates being called a toddler. On her way home, in the midst of her hurt fury, she forgot the word the friend had said. Totally cracked me up.
What if I was one of those mothers who go storming around in a rage, flying off the handle without getting all the facts? That would have been hilarious, if I had accused the little neighbor of what Ella had said she had done. Hilarious in hind site, but completely embarrassing and uncalled for in the moment. Thank goodness I'm not that kind of parent.
Lesson learned: never call my daughter a toddler.
"Toddler" = "swear word" in Ella's mind.
Hilarious. Parenting- it keeps you on your toes!
My four-year-old daughter was delivered, in tears, to our doorstep the other afternoon by one of her big brothers. They had been playing at a friend's house and Aidan brought Ella home because she was upset. I came to her and gave her hugs and smooches and asked her what had happened. She was so upset she couldn't speak for a few minutes. I thought whew, we must be dealing with a doozy here!
Finally, Ella told me that the friend she had been playing with, who is several years older than her, had called her a "bastard." What!?! The job of swearing at friends, neighbors, siblings and parents is usually reserved for our older boys! Not a girl down the street! I was shocked, and wondered if Ella had the story right. I didn't know if this friend had really ever even heard that word, because it doesn't seem like a word her family would be throwing around. Unlike our boys who swear on a pretty consistent basis.
*As a side note, the older boys do not swear because of their Tourette Syndrome, as many people assume when they hear of the boys' diagnosis. Only 5% of people who have TS have this symptom, where they swear uncontrollably. Our boys swear because of their mood disorders, their uncontrollable anger and lack of impulse control. Still not ok, but understandable if you know what is going on in their brains and bodies. One of our little darlings went through about a two year period where his favorite thing to verbally hurl at us was "You sh**ty assy f***." And he said it with such mentally-ill-venom, it was hard not to take him seriously and start believing that we were, in fact, the name that he called us. Whatever that was. Since we had never heard that particular term before, it was hard to know whether to laugh or cry when our little boy screamed these words at us. It was before he really knew what any of those words meant. Now when Alex and I are joking around together, we frequently use this term and chortle our hearts out at the crazy life we lead. *
As Ella calmed down, we talked about how swearing is not ok. This is a tough, and constant, conversation in our home because it's difficult to tell my toddler something is not acceptable when she sees her brothers doing it. They have consequences for their negative behavior, but usually the swearing is part of a rage and at that point we have bigger fish to fry than reprimanding foul language. Ella and Aidan are super smart when it comes to this unfortunate double standard. Neither of them wants to have a potty mouth. It upsets them when their brothers are so angry and sweary. So my youngest two understand that there are words that are not kind or acceptable, that we should not use. So I told Ella we would go talk to her friend and find out what happened and why she called Ella such a bad name.
Ella continued to say to me in a stunned voice "She called me a BASTARD!" Finally I said YES, I know what she called you, you can stop saying it now! No more!
We walked over to our friend's house to get Aidan for dinner, and to talk about what had transpired with Ella. Unlike some fellow mothers I have had experience with, I did not stomp over to their house, and stand on their porch shrieking and squawking, wagging my furious finger in her mother's face, making a spectacle of my anger for all the world to see. I feel like more is accomplished when cool heads and kind words prevail.
I talked with Ella and her friend, and calmly explained to the friend what Ella had told me. Without using the B Word, in case the friend had actually not really called my daughter that. Our friend said that she had been talking about how old she was, and how old Ella was. The friend said she had told Ella she was a toddler, and our friend thought maybe Ella had gotten upset about that. I turned to my innocent little reporter, and asked her if our friend had called her a "TODDLER." She said indignantly, "Yes!!"
Aha. Crisis averted.
So our neighbor had not, in fact, called my four-year-old a bastard. She had actually called my daughter a toddler. Two words, which in Ella's mind, are equivalent. She hates being called a toddler. On her way home, in the midst of her hurt fury, she forgot the word the friend had said. Totally cracked me up.
What if I was one of those mothers who go storming around in a rage, flying off the handle without getting all the facts? That would have been hilarious, if I had accused the little neighbor of what Ella had said she had done. Hilarious in hind site, but completely embarrassing and uncalled for in the moment. Thank goodness I'm not that kind of parent.
Lesson learned: never call my daughter a toddler.
"Toddler" = "swear word" in Ella's mind.
Hilarious. Parenting- it keeps you on your toes!
Venting
I'm all for seeing the glass half-full and through rosy-colored glasses. Usually that is how I live my life, being optimistic, full of hope. But sometimes life is just a little tough. I feel like I can handle a lot, but there are times when I feel I've met my limit.
I've been having a pretty tough few weeks. You know how it seems like sometimes you can't get out of a funk that life throws at you, and crazy icky things just keep happening no matter what you do? That's how I feel. I don't know what the problem is with my soul's energy in the world right now, but man! I need things to calm down a little! It feels like I'm being run over by a semi every day! If I dare to think that things will be ok and normal one day, BAM, more crazy unexpected things happen. All kinds of stupid things- from big to small. Like I dropped my phone on the sidewalk, it fell out of my purse. And smashed. It still works somehow, but I'm afraid of getting a glass splinter every time I use it. Alex says we have a warranty, we just haven't had a chance yet to go see if we can get it replaced.
The school nurse called last Tuesday- Ben was feeling sick. He was home Wednesday too. Last week Ella started preschool. I had been hanging onto the shred of excitement about my 2 hours of quiet, with all four kids at school, but that plan had to change because Ben was home sick. Sometimes I wonder how much flexibility one person should really have to muster to deal with what life throws at you. Ben was back at school Thursday, so that was good. But I told him if you're home sick, you lay around all day. No computers, no friends. Just laying around. He fought me all day for two days about that. Because friends would get home from school and he'd want to see them and play, and he'd feel ok while he was doing that. So the second afternoon he was home sick I finally said great! If you feel up to playing you must be better! So tomorrow I will not listen to any complaining about feeling icky, and to school you shall go. So he did. Ben's been having a lot of anger management issues lately. Possibly his body was fighting a sickness, which always makes his behavior worse, so I'm hoping he's getting over it and will get back to more normal.
The school nurse called last Tuesday- Ben was feeling sick. He was home Wednesday too. Last week Ella started preschool. I had been hanging onto the shred of excitement about my 2 hours of quiet, with all four kids at school, but that plan had to change because Ben was home sick. Sometimes I wonder how much flexibility one person should really have to muster to deal with what life throws at you. Ben was back at school Thursday, so that was good. But I told him if you're home sick, you lay around all day. No computers, no friends. Just laying around. He fought me all day for two days about that. Because friends would get home from school and he'd want to see them and play, and he'd feel ok while he was doing that. So the second afternoon he was home sick I finally said great! If you feel up to playing you must be better! So tomorrow I will not listen to any complaining about feeling icky, and to school you shall go. So he did. Ben's been having a lot of anger management issues lately. Possibly his body was fighting a sickness, which always makes his behavior worse, so I'm hoping he's getting over it and will get back to more normal.
Aidan is another story. He is so complicated. I had a really long talk with two of his therapists yesterday about what's going on. He's been doing this training program all summer (called Astronaut Training) to integrate all his senses, especially his vestibular sense- the sense of where he is in space. It's a really cool program, supported by a lot of science. But when you work on one sense, and focus on it intensely, another sense can get all loopy. So Aidan's oral sense has gone a little bonkers. He's back to being super picky about eating, like he was a couple years ago when he needed feeding therapy to eat more foods than yogurt and Cheerios. He only eats bland, soft foods. He has his finger in his mouth all the time. Things like that are a change from how he was a few months ago.
So Aidan's therapists came up with a plan for how to help him with his oral sense too. I'm going to give him whatever he will eat that takes a lot of work to chew. There are some candies he likes that are super chewy, so we'll try that. He's ruined his new water bottle by chewing it up, so today I bought a new necklace he can chew on, and ordered some more things like tubes for the ends of his pencils that are chewy. He just needs a lot more input into his mouth. There are also some exercises he can do, if I make them into fun games. Hopefully that will help.
But it's just another thing to think through, figure out with therapists, work on. I love the figuring it out part of it all- it's so cool to talk with therapists about what I see at home and they put it all together in a Big Picture Of Aidan and figure out what the heck is going on in my little boy's body. And how to fix it. Love that. It's like an Aidan Mystery and luckily I know people who can help me figure it out.
Don't even get me started on getting the kid on the bus! Some days it's really almost impossible because of his anxiety and meltdowns. It's so sad and it breaks my heart to have to carry my 2nd grader out to the bus, up the steps, put him into his seat and run out the door so the driver can shut the door before screaming Aidan escapes. It's heart wrenching. Some days he's fine, just a little worried. Today Jonah was so sweet and distracted him with scooter stuff while waiting for the bus. One day last week Aidan said he wouldn't cry when the bus came because the day before had been terrible. But when it was time to go out his eyes welled up and started leaking. It makes me want to cry too. I am trying to figure out what exactly it is that makes him so worried. I figured out the bus is too loud for him, but he refuses to do any of the things I suggest to help with that. I know school is hard in every way for him. And he just misses me and being home. But he has a great bus driver and teacher, both of whom we've had previous years. They are so kind and understanding. So we'll see how that goes. His new ADHD med is a non-stimulant that Ben takes also, and will take maybe 3-4 more weeks to kick in fully. Then we can see how that works and then adjust his anti-anxiety meds if necessary. It's just wearing me out to see him struggle. And homework can be SO SO hard to get him to sit down and do. But again, the positive is some of his math homework is fun games online! So that he of course loves and begs to do more of.
So Aidan's therapists came up with a plan for how to help him with his oral sense too. I'm going to give him whatever he will eat that takes a lot of work to chew. There are some candies he likes that are super chewy, so we'll try that. He's ruined his new water bottle by chewing it up, so today I bought a new necklace he can chew on, and ordered some more things like tubes for the ends of his pencils that are chewy. He just needs a lot more input into his mouth. There are also some exercises he can do, if I make them into fun games. Hopefully that will help.
But it's just another thing to think through, figure out with therapists, work on. I love the figuring it out part of it all- it's so cool to talk with therapists about what I see at home and they put it all together in a Big Picture Of Aidan and figure out what the heck is going on in my little boy's body. And how to fix it. Love that. It's like an Aidan Mystery and luckily I know people who can help me figure it out.
Don't even get me started on getting the kid on the bus! Some days it's really almost impossible because of his anxiety and meltdowns. It's so sad and it breaks my heart to have to carry my 2nd grader out to the bus, up the steps, put him into his seat and run out the door so the driver can shut the door before screaming Aidan escapes. It's heart wrenching. Some days he's fine, just a little worried. Today Jonah was so sweet and distracted him with scooter stuff while waiting for the bus. One day last week Aidan said he wouldn't cry when the bus came because the day before had been terrible. But when it was time to go out his eyes welled up and started leaking. It makes me want to cry too. I am trying to figure out what exactly it is that makes him so worried. I figured out the bus is too loud for him, but he refuses to do any of the things I suggest to help with that. I know school is hard in every way for him. And he just misses me and being home. But he has a great bus driver and teacher, both of whom we've had previous years. They are so kind and understanding. So we'll see how that goes. His new ADHD med is a non-stimulant that Ben takes also, and will take maybe 3-4 more weeks to kick in fully. Then we can see how that works and then adjust his anti-anxiety meds if necessary. It's just wearing me out to see him struggle. And homework can be SO SO hard to get him to sit down and do. But again, the positive is some of his math homework is fun games online! So that he of course loves and begs to do more of.
The school messed up the boys' IEP meetings and scheduled them for last Friday, and told me they were Tuesday. So I didn't have a babysitter. I had to cancel Ella's 4 year checkup which means she has to wait a few more weeks, so I don't have the papers I need for her school with her health records until then. And Aidan had to be home for a little while alone because I couldn't get home before him and I was at the other school for the meetings. I sent a very upset email to the director of special ed about this, because it's the second year it's happened to me. The next day my email and phone were ringing off the hook with high up people calling to apologize. Which they should. This is ridiculous.
I've had to reschedule our therapies this year too so we can fit in youth group for Ben and Jonah. So now we have to go to therapy every day except Sun and Mon. Whew. That alone is stressful. On Wednesdays I'll drop Ella at school, pick her up, have lunch, take her to her therapy group, go home, pick up Aidan, take him to therapy, hopefully my babysitter will work out every Wednesday and keep the other three to play and do homework, go home take Ben and Jonah to youth group. And that's just Wednesday. Fridays can be nuts too- I'll take Ella to school, pick her up, eat a quick lunch, go to the IEP meetings, somehow gather all the boys from wherever they all end up, take them to Aidan's therapy, and then we have a family therapy session after that. So I don't know when we're going to eat dinner. Insurance keeps messing up and not having authorizations for Ben and Jonah to get counseling. So they will have gone a month without it, because it takes so long to get the authorization, during their stressful transition to middle school. Great. I asked our counselor for the phone number of our insurance case manager yesterday because I want to understand the process of why it takes so long to get the authorization, when the boys need continuous therapy and they should see when the authorization will expire and renew it so there are no lapses! But I haven't gotten the number yet.
Our oven died. We got it fixed but were without it for a week. Not so easy when you're trying to keep four picky eaters fed!
It's just one thing after another, you know? I feel like I'm going to have a breakdown. But then I just keep taking one breath at a time and putting one foot in front of the other. I keep telling myself I'm strong and nothing will break my spirit. But sometimes I don't believe it. How much can a person take in one month? There have been so many mixups with Ben and Jonah and their school. Just little things, but things I have to figure out and then demand because I'm right and they're wrong. Like Ben was supposed to get "structured resource" instead of just regular study hall. He wasn't on The List at the beginning of the year so the teacher wouldn't let him in. In his 504 Plan it says he does get it. So I had to get in touch with all the right people and make it right. Which I did. But it's just constant stuff like that. And we only got one gym uniform for each boy instead of the 2 I ordered. And they didn't get the water bottles I ordered. On and on. I'm worn out!
I am hoping that once we just get into the normalness of life, things will quiet down and stop being crazy. So far it hasn't happened. One of these days maybe.
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