This is meant to be a summer blog...but today was too awesome to go unmentioned. Why was it awesome?
Because I got to share with Alex a world I once loved living in. I spent two years after graduation working for a ballet company, doing everything from marketing to box office to stage management (I bounced around a lot). I also grew up dancing, and Nutcracker is the biggest tradition in the dance world. But a crowded theater is an overwhelming prospect for my sensitive boy, so I didn't know if I could bring him there.
Because fifteen years ago I met a wonderful man named Douglas, who was then a dancer in the company. Now he's the artistic director. When I wrote and asked him to let me bring my autistic son to a dress rehearsal, he GOT it. And today, he made me feel entirely welcome.
Because when Alex squealed, "It's the Mouse King!" during a quiet moment in the party scene, Douglas came back and welcomed us. With that gesture, my amusement was allowed a victory over embarrassment.
Because Alex met a few dancers, and every one was gracious and warm. I don't know that he will remember any of them, but I hope that he will remember that people were nice.
Because no one chased us out of any space we went, even backstage. Doug even invited us on stage after the show--though I was paranoid he would run into someone's way, so I ended that quickly.
Because hey, I saw a few people I recognized, and it was wonderful to be back in the space.
But most of all, because in the absence of a paying audience--and behavioral
expectations--I could let Alex adjust on his own terms. We had never been in a real theater before, and even movie theaters are still a questionable prospect. A dark theater house with loud music and bright stage lights was going to be a big new environment to take in. He bounced a
lot. When he sat, it was on the edge of the folded seat, sometimes with
his feet on the seat back in front of him. He sat on the floor. He bounced back and forth in
our empty row, staging his own battle with the Mouse King. And by the
finale, he danced up the aisle, mimicking what he saw on stage.
Because THAT joyous connection was what I was hoping for, and he GOT THERE!
Because I was able to help him adjust to a new situation; because I got to watch him do it.
And because that's one more thing he CAN do.
I am ever so thankful for this adventure, and for all who made it possible. Happy Thanksgiving!
Wednesday, November 21, 2012
Wednesday, August 29, 2012
Ambassadors
Recently, a friend of mine mentioned me in his radio broadcast, complimenting my online narration of life with Alex. (Thanks, CJ!) Quite sensitively, he did not reveal Alex's diagnosis publicly.
Many parents don't disclose their children's autism; schools are bound by confidentiality laws and CAN'T reveal such confidential information beyond authorized staff. Of course, medical diagnoses should be confidential, but in some cases, many parents choose a more open approach.
Personally, I'm in the "no secrets" camp: I tell everyone he's autistic.
There are plenty of reasons why I do. Firstly, I'd like every school staff member to know how to approach him. School should be a safe and welcome environment for all students, even if (especially if) they have special needs. To that end, I also want students to know. Alex isn't going to behave like neurotypical kids, so they shouldn't expect him to do so.
Yes, it's a label--gasp!--but if that label lets people know how to approach him, lets classmates know that he's not just the weird kid, then that label is helpful. And what's more...the word "autistic" doesn't scare me. I think it scares less and less people anymore.
When I tell people "He's autistic," most of the time, they don't look appalled or scared. Sometimes they get more cautious; sometimes they even get excited, because they get it. But mostly it's curiosity and courtesy--they know that autism is something different, but they don't know exactly what to do.
This is the part I love. This is my mission.
My newfound goal in life is to educate people on autism: what it is, why (we think) it happens, how it works, and most importantly, how to interact with an autistic person. Alex is part of a generation--a BIG generation--that will enter adulthood and the global community. He has the ability to do a job and have a career, but only if businesses understand that he's not a typical worker. He may not make small talk or do well in conversations with clients. But he'll sit at a computer and plug away at a problem until it's solved.
But before he gets there, he needs to go to school. He needs peers who will accept him. He needs to be welcome in extracurricular activities. And he needs to feel success, not rejection.
And in addition to that, he's going to interact with people in the community. At the grocery store, a restaurant, at the swim club--the more people who know about autism, the better off he'll be. (I cannot count how many servers and restaurant managers have genially welcomed Alex into their restaurant while he brings in his own Chili's takeout box.)
Okay, this is my favorite part, really. Alex and I--our family--are ambassadors. We talk about autism. We show autism. We let people know what they can do. I will talk to ANYONE about any aspect of autism. I try my best to demystify it. I try to say, "It's not a monster in the closet! It's him--my beautiful boy."
When Alex needs input in public, I give it to him. I'll pick him up and spin him, squeeze his joints, I'll even squeeze his head the way he likes it. That last one may turn heads, I know, but I'd welcome the conversation. When I need to talk to him, I get down on his level and I explain. I don't lower my voice, I don't curtail my instruction. I want people to hear and see. I make eye contact and I smile at people.
Because I'm damn proud of my son. And I want people to see him. I want people to know about autism, to meet him and fall in love, and to see that while autism may make him different, it doesn't make him less.
And I hope that if people meet and love him, they'll give other autistic kids a chance. Maybe they'll meet someone with more severe autism, but they'll recognize something similar. Maybe they'll think twice before judging the parents of the kid having a meltdown in public. Maybe they'll encourage their own child to be friendly with other children with special needs.
So I will sing the song of autism for all to hear! Because my child deserves to meet people who will recognize it and sing along.
Note: This is a sort of follow-up to my last post, Taking Notice. Please check that one, too, if you haven't already!
Many parents don't disclose their children's autism; schools are bound by confidentiality laws and CAN'T reveal such confidential information beyond authorized staff. Of course, medical diagnoses should be confidential, but in some cases, many parents choose a more open approach.
Personally, I'm in the "no secrets" camp: I tell everyone he's autistic.
There are plenty of reasons why I do. Firstly, I'd like every school staff member to know how to approach him. School should be a safe and welcome environment for all students, even if (especially if) they have special needs. To that end, I also want students to know. Alex isn't going to behave like neurotypical kids, so they shouldn't expect him to do so.
Yes, it's a label--gasp!--but if that label lets people know how to approach him, lets classmates know that he's not just the weird kid, then that label is helpful. And what's more...the word "autistic" doesn't scare me. I think it scares less and less people anymore.
When I tell people "He's autistic," most of the time, they don't look appalled or scared. Sometimes they get more cautious; sometimes they even get excited, because they get it. But mostly it's curiosity and courtesy--they know that autism is something different, but they don't know exactly what to do.
This is the part I love. This is my mission.
My newfound goal in life is to educate people on autism: what it is, why (we think) it happens, how it works, and most importantly, how to interact with an autistic person. Alex is part of a generation--a BIG generation--that will enter adulthood and the global community. He has the ability to do a job and have a career, but only if businesses understand that he's not a typical worker. He may not make small talk or do well in conversations with clients. But he'll sit at a computer and plug away at a problem until it's solved.
But before he gets there, he needs to go to school. He needs peers who will accept him. He needs to be welcome in extracurricular activities. And he needs to feel success, not rejection.
And in addition to that, he's going to interact with people in the community. At the grocery store, a restaurant, at the swim club--the more people who know about autism, the better off he'll be. (I cannot count how many servers and restaurant managers have genially welcomed Alex into their restaurant while he brings in his own Chili's takeout box.)
Okay, this is my favorite part, really. Alex and I--our family--are ambassadors. We talk about autism. We show autism. We let people know what they can do. I will talk to ANYONE about any aspect of autism. I try my best to demystify it. I try to say, "It's not a monster in the closet! It's him--my beautiful boy."
When Alex needs input in public, I give it to him. I'll pick him up and spin him, squeeze his joints, I'll even squeeze his head the way he likes it. That last one may turn heads, I know, but I'd welcome the conversation. When I need to talk to him, I get down on his level and I explain. I don't lower my voice, I don't curtail my instruction. I want people to hear and see. I make eye contact and I smile at people.
Because I'm damn proud of my son. And I want people to see him. I want people to know about autism, to meet him and fall in love, and to see that while autism may make him different, it doesn't make him less.
And I hope that if people meet and love him, they'll give other autistic kids a chance. Maybe they'll meet someone with more severe autism, but they'll recognize something similar. Maybe they'll think twice before judging the parents of the kid having a meltdown in public. Maybe they'll encourage their own child to be friendly with other children with special needs.
So I will sing the song of autism for all to hear! Because my child deserves to meet people who will recognize it and sing along.
Note: This is a sort of follow-up to my last post, Taking Notice. Please check that one, too, if you haven't already!
Monday, August 13, 2012
Taking notice
Three years ago, Alex's diagnosis was still new. I was still scared. And a boy named (I should change it...hmmm...) Colin walked into my class. As usual, the student IEP's were getting to elective teachers late, so I didn't know until three classes later that Colin is autistic.
I was thrilled. Here was a kid on the spectrum who could walk into a room without being immediately labeled! It gave me such hope!
Since then, I've noticed something changing, though: people are learning about autism. They are beginning to accept and even embrace it. The kindness of strangers still moves me to tears when they take special notice of my boy.
And his peers. And others' peers! When I see kids speaking kindly, sensitively to their autistic classmates...THAT gives me even more hope. Alex has two friends from school that I understand were big defenders when other kids weren't respectful. They go out of their way to reach him and connect.
When I look at Alex, I wonder...will he ever blend in? Do I even want him to? I'd like him to control some of the stims, like the flapping hands and pacing when he's overwhelmed. But more often, I LOVE his differences. And I have hope that others may come to respect them, too.
And so, once again, my hope has changed. I hope that as Alex grows, people will continue to notice he's different, even notice he's autistic. I hope that they will know what that means, and how to approach him. And I hope that these people will help him flourish, growing into a happy, confident man.
And I am working to make that happen.
I was thrilled. Here was a kid on the spectrum who could walk into a room without being immediately labeled! It gave me such hope!
Since then, I've noticed something changing, though: people are learning about autism. They are beginning to accept and even embrace it. The kindness of strangers still moves me to tears when they take special notice of my boy.
And his peers. And others' peers! When I see kids speaking kindly, sensitively to their autistic classmates...THAT gives me even more hope. Alex has two friends from school that I understand were big defenders when other kids weren't respectful. They go out of their way to reach him and connect.
When I look at Alex, I wonder...will he ever blend in? Do I even want him to? I'd like him to control some of the stims, like the flapping hands and pacing when he's overwhelmed. But more often, I LOVE his differences. And I have hope that others may come to respect them, too.
And so, once again, my hope has changed. I hope that as Alex grows, people will continue to notice he's different, even notice he's autistic. I hope that they will know what that means, and how to approach him. And I hope that these people will help him flourish, growing into a happy, confident man.
And I am working to make that happen.
Monday, August 6, 2012
Vestibular and Proprioceptive Input
Today, niece Erika and I took the boys to a new bounce-house place. My husband had pointed out something simple but important: Alex's joy was hiding.
You see, he loves video games--obsessively. But he can't stay there all day (though he would if we let him), so what else do we do? Recent attempts haven't been successful.
So let's ask the deep question: what makes Alex happy? Squeezing. Hugging. Tickling. Tackling. Swinging. Being upside down. Testing his balance. And not being asked to talk.
In my reading, I've learned that...okay, some people whom I can't identify--scientists? behaviorists? awesomists?--have identified extra senses, beyond the standard five. One is vestibular, which has to do with balance. Another is proprioceptive, which is related to pressure on the body. The last (I think) is something to do with awareness of your body. That one means little to me but the first two are huge.
Alex SEEKS vestibular and proprioceptive input. It helps him stay calm and focused. So I need to find more activities that fill that craving.
Today, it was 'R Bounce--and he loved it. Tomorrow...don't know. But I'm going to try and stay focused myself, and find more options!
You see, he loves video games--obsessively. But he can't stay there all day (though he would if we let him), so what else do we do? Recent attempts haven't been successful.
So let's ask the deep question: what makes Alex happy? Squeezing. Hugging. Tickling. Tackling. Swinging. Being upside down. Testing his balance. And not being asked to talk.
In my reading, I've learned that...okay, some people whom I can't identify--scientists? behaviorists? awesomists?--have identified extra senses, beyond the standard five. One is vestibular, which has to do with balance. Another is proprioceptive, which is related to pressure on the body. The last (I think) is something to do with awareness of your body. That one means little to me but the first two are huge.
Alex SEEKS vestibular and proprioceptive input. It helps him stay calm and focused. So I need to find more activities that fill that craving.
Today, it was 'R Bounce--and he loved it. Tomorrow...don't know. But I'm going to try and stay focused myself, and find more options!
Tuesday, July 31, 2012
The Queen
Last week's tooth drama seems to have been caused by Alex's bed. You see, for three years he has slept in the top bunk of an un-bunked bed. Basically, it's a twin bed with rails all around. He flops around when he sleeps and occasionally bangs the sides, falling right back to sleep.
A few weeks back, he hit his face. Apparently, he hit his tooth hard enough to detach...the nerve? Or something? Anyway, the dentist declared the tooth necrotic, needing removal; and he diagnosed my boy with an infection under the tooth.
So besides the dental drama and antibiotics, what to do? Take off the rails? We tried that, and he freaked out--change is hard. So we decided to give him our guest bed, which is a comfy queen size.
Now mind you, before this it was in Eddie's smaller bedroom, squeezed in with the crib. Now the twin bed is in Eddie's room, and we have a hopeful plan for guests: Alex has a "sleepover" in the twin bed, and guests get Alex's room.
This is, of course, if we can get Alex to agree to it. We hope to sweeten the deal by adding the bed tent we've been hiding a few years. Friday we can test it out, when we have company.
But in the meantime, Alex is sleeping REALLY well. He wakes up happy, and he loves to hang out there. I'd have preferred a double, but we had the queen. And as long as it works this well, I'll take it.
A few weeks back, he hit his face. Apparently, he hit his tooth hard enough to detach...the nerve? Or something? Anyway, the dentist declared the tooth necrotic, needing removal; and he diagnosed my boy with an infection under the tooth.
So besides the dental drama and antibiotics, what to do? Take off the rails? We tried that, and he freaked out--change is hard. So we decided to give him our guest bed, which is a comfy queen size.
Now mind you, before this it was in Eddie's smaller bedroom, squeezed in with the crib. Now the twin bed is in Eddie's room, and we have a hopeful plan for guests: Alex has a "sleepover" in the twin bed, and guests get Alex's room.
This is, of course, if we can get Alex to agree to it. We hope to sweeten the deal by adding the bed tent we've been hiding a few years. Friday we can test it out, when we have company.
But in the meantime, Alex is sleeping REALLY well. He wakes up happy, and he loves to hang out there. I'd have preferred a double, but we had the queen. And as long as it works this well, I'll take it.
Tuesday, July 24, 2012
Meltdown
Today was a rough day, as you know if you read my facebook feed.
Alex had a runny nose and cough, so we kept him home from ESY (summer school, for the uninitiated). Oddly, by 9:00 a.m., he seemed much more cheerful.
Eddie has been intermittently cranky-as-hell lately--I think he's teething.But I didn't want to give up on his swim lesson this morning, so we went anyway. It actually went really well, until it didn't. Ten minutes, tops, and he was done.
Then I rush and drop him off with Grandma, so I can make it to my appointment for bloodwork. Scoot in the door at my appointment time...my appointment that is scheduled for next Monday.
Next I ask Alex to come for a ride with me to take Grace to her tennis practice. All was well until we arrived ten minutes early, then Alex saw the courts and the mantra began: "I want to play tennis!" He even added variety after 20 times didn't work. "Hey! I want to play tennis!" x20. "You knoooow...I want to play tennis." x20. I had to be pleased by his willingness to expand his phrasing. And we actually had his racket and ball, so...
We got out and tried a little play, staying out of the way of other kids warming up. Ironically, it wasn't warm--it was frickin hot. 88 degrees, humid, full sun. I hoped he'd realize this was unpleasant, but no. After 5 minutes, the courts were filling up, and I forced an exit.
Meltdown.
We haven't had a full-blown meltdown in a month or more. If you don't live with autism or something similar, here's a short comparison. In a tantrum, it's done as a means to an end, seeking your attention, and is actually controlled for effect; a meltdown is overload, beyond the child's control, and will carry on without attention. When Alex melts down, whoever he perceives created the problem cannot calm him. And today--well, I didn't have the patience to try. It was a short ride to Grandma's, but he wailed the whole time.
Enter Grandma:magical, wonderful, former-first-grade-teacher Grandma. "What do you want, love? Tell me, and I'll make it happen...you want to play tennis? Of course you can play tennis! But you know, they don't let you play tennis when you have a cough...No, I'm sorry. So let's get you all better, and then you can play tennis, my sweet boy!" This went on for 5-10 minutes, until the waves subsided, while I was in the kitchen making his lunch. "Hey, you know what makes you strong? Eating good food...Look! Mommy made you a sandwich! Will you eat your sandwich with me? I was having some cereal..."
My mom is wonderful--but this was magic. He's in her specialty-age-group now. And you know, she's Grandma. So even though he wasn't totally happy, he moved on.
There were more crashes after that, but small ones really. And somehow I dragged myself out of my slump and came up with good ideas. One was calling in backup in the person of Cousin Courtney. She can cheer up any kid and mommy.
And tonight I looked at my boy in his zombie state, playing a video game and got smart. I declared a break time, got right in front of him as asked with a big smile which very physical activity he'd like. He decided on spinning. So I spun him. Then I tickled him. Then he "flew" on my feet. The zombie was gone, and my boy was back.
I have to remember those moments, especially when one of us is melting. I actually do know what I'm doing sometimes.
Alex had a runny nose and cough, so we kept him home from ESY (summer school, for the uninitiated). Oddly, by 9:00 a.m., he seemed much more cheerful.
Eddie has been intermittently cranky-as-hell lately--I think he's teething.But I didn't want to give up on his swim lesson this morning, so we went anyway. It actually went really well, until it didn't. Ten minutes, tops, and he was done.
Then I rush and drop him off with Grandma, so I can make it to my appointment for bloodwork. Scoot in the door at my appointment time...my appointment that is scheduled for next Monday.
Next I ask Alex to come for a ride with me to take Grace to her tennis practice. All was well until we arrived ten minutes early, then Alex saw the courts and the mantra began: "I want to play tennis!" He even added variety after 20 times didn't work. "Hey! I want to play tennis!" x20. "You knoooow...I want to play tennis." x20. I had to be pleased by his willingness to expand his phrasing. And we actually had his racket and ball, so...
We got out and tried a little play, staying out of the way of other kids warming up. Ironically, it wasn't warm--it was frickin hot. 88 degrees, humid, full sun. I hoped he'd realize this was unpleasant, but no. After 5 minutes, the courts were filling up, and I forced an exit.
Meltdown.
We haven't had a full-blown meltdown in a month or more. If you don't live with autism or something similar, here's a short comparison. In a tantrum, it's done as a means to an end, seeking your attention, and is actually controlled for effect; a meltdown is overload, beyond the child's control, and will carry on without attention. When Alex melts down, whoever he perceives created the problem cannot calm him. And today--well, I didn't have the patience to try. It was a short ride to Grandma's, but he wailed the whole time.
Enter Grandma:magical, wonderful, former-first-grade-teacher Grandma. "What do you want, love? Tell me, and I'll make it happen...you want to play tennis? Of course you can play tennis! But you know, they don't let you play tennis when you have a cough...No, I'm sorry. So let's get you all better, and then you can play tennis, my sweet boy!" This went on for 5-10 minutes, until the waves subsided, while I was in the kitchen making his lunch. "Hey, you know what makes you strong? Eating good food...Look! Mommy made you a sandwich! Will you eat your sandwich with me? I was having some cereal..."
My mom is wonderful--but this was magic. He's in her specialty-age-group now. And you know, she's Grandma. So even though he wasn't totally happy, he moved on.
There were more crashes after that, but small ones really. And somehow I dragged myself out of my slump and came up with good ideas. One was calling in backup in the person of Cousin Courtney. She can cheer up any kid and mommy.
And tonight I looked at my boy in his zombie state, playing a video game and got smart. I declared a break time, got right in front of him as asked with a big smile which very physical activity he'd like. He decided on spinning. So I spun him. Then I tickled him. Then he "flew" on my feet. The zombie was gone, and my boy was back.
I have to remember those moments, especially when one of us is melting. I actually do know what I'm doing sometimes.
Thursday, July 19, 2012
The magic of B12
B12: an amateur's report
B12 is a vitamin. People get B12 through foods--I don't know which ones--and some through injections. I remember a story about some celebrity performer (was it Madonna?) being accused of doing drugs and pushing them on her backup singer/dancers, and the answer was that it was B12 injections for their health and immunity.
Sometime in 2011, one of Alex's doctors told me that Alex was deficient in B12, and we should supplement. It was a little bottle of sweet red liquid, dosed in a tiny dropper. It was easy. And I thought I could observe improvement.
I noticed a change when I stopped the B12: he was different, harder to focus, more detached. I restarted, and he was back to his then-normal self. Okay, B12 is firmly on our ever-growing menu of supplements.
Then in April of this year, I went to a conference for the Autism Research Institute--a pioneer in research for biomedical interventions in treating autism. One of the many things I learned about while there was the B12 injection--I vaguely remember the doctor telling me about it, but dismissing the notion as "too much."
Some research indicates that B12 is better absorbed by injection than by mouth (I don't know whose research--ask Madonna). And here they even offered a clinic on how to administer the shots. I still balked, but luckily my friend (also a doctor) was with me and coached me: it's once every three days, you can get a numbing cream for the skin, and you do it when he's sleeping. As for using a syringe, I used to give myself allergy injections before that was outlawed, so I wasn't THAT scared of it.
So I tried. I set my iPhone with a calendar event, rotating it every three days, so I wouldn't forget. And...
Wow.
My boy is so much easier to engage, he makes relevant comments, and can actually focus on a task a little longer. I asked his teachers without telling them about the shots: yes, he's actually been doing great in school lately. Wow--B12 does make a difference.
But eventually, as in all things (ahem, like my blog), I got lazy. To give him the shot, he needs to be on his side or belly, and he has suddenly become a back-sleeper. Sometimes when I try to roll him, he resists and/or wakens. Not to mention the time I "missed" the target where I applied the cream. So for about a week and a half, he didn't get his shot. He detached, he got irritable, he wouldn't engage. Finally, I kicked myself and did it again: Sunday night he got an injection.
By Monday afternoon, my boy was back. Chatting, making eye contact, answering requests. Ta-da.
Eventually, I need to find a way to NOT have to creep in on him sleeping, but we need to calm his anxiety first. Too bad B12 doesn't address that, too.
B12 is a vitamin. People get B12 through foods--I don't know which ones--and some through injections. I remember a story about some celebrity performer (was it Madonna?) being accused of doing drugs and pushing them on her backup singer/dancers, and the answer was that it was B12 injections for their health and immunity.
Sometime in 2011, one of Alex's doctors told me that Alex was deficient in B12, and we should supplement. It was a little bottle of sweet red liquid, dosed in a tiny dropper. It was easy. And I thought I could observe improvement.
I noticed a change when I stopped the B12: he was different, harder to focus, more detached. I restarted, and he was back to his then-normal self. Okay, B12 is firmly on our ever-growing menu of supplements.
Then in April of this year, I went to a conference for the Autism Research Institute--a pioneer in research for biomedical interventions in treating autism. One of the many things I learned about while there was the B12 injection--I vaguely remember the doctor telling me about it, but dismissing the notion as "too much."
Some research indicates that B12 is better absorbed by injection than by mouth (I don't know whose research--ask Madonna). And here they even offered a clinic on how to administer the shots. I still balked, but luckily my friend (also a doctor) was with me and coached me: it's once every three days, you can get a numbing cream for the skin, and you do it when he's sleeping. As for using a syringe, I used to give myself allergy injections before that was outlawed, so I wasn't THAT scared of it.
So I tried. I set my iPhone with a calendar event, rotating it every three days, so I wouldn't forget. And...
Wow.
My boy is so much easier to engage, he makes relevant comments, and can actually focus on a task a little longer. I asked his teachers without telling them about the shots: yes, he's actually been doing great in school lately. Wow--B12 does make a difference.
But eventually, as in all things (ahem, like my blog), I got lazy. To give him the shot, he needs to be on his side or belly, and he has suddenly become a back-sleeper. Sometimes when I try to roll him, he resists and/or wakens. Not to mention the time I "missed" the target where I applied the cream. So for about a week and a half, he didn't get his shot. He detached, he got irritable, he wouldn't engage. Finally, I kicked myself and did it again: Sunday night he got an injection.
By Monday afternoon, my boy was back. Chatting, making eye contact, answering requests. Ta-da.
Eventually, I need to find a way to NOT have to creep in on him sleeping, but we need to calm his anxiety first. Too bad B12 doesn't address that, too.
Wednesday, July 18, 2012
Eddie the Squall
I have to hand it to EI: they were much faster than I thought they would be! Once I was able to do the phone interview, we got an appointment within the week...to tell me what I had pretty much figured out.
Yes, he's a little behind in articulation (you can't always understand what he's saying), but he is communicating. What's more, he's TRYING to talk. So, early intervention is out of the question, though he may do well with private therapy. I'll talk to the pediatrician about it next week.
In the meantime, the evaluators gave me a gentle kick in the ass for another summer plan: weaning off the bottle and the pacifier. YES, he still has them--don't judge. But they reminded me about oral muscle development and speech. So Monday afternoon, I cut off the bottles during the day; if it's time for a snack or drink, he can have them, not a bottle.
It was ugly. Milk in another vessel was rejected with force. There was screaming and flailing. I really wanted to capitulate. But I didn't, and by Tuesday afternoon, he was asking for snacks and juice. He seems initially devastated, but when he still gets SOMETHING to consume, he gets over it.
His temper is a squall: fierce and furious, but fairly short-lived.
Next it's the bedtime and wake-up bottles. Then the pacifier (which is already limited to certain locations and times); I figure it's "pacifying" and comforting him through this transition.
Step by step...
Yes, he's a little behind in articulation (you can't always understand what he's saying), but he is communicating. What's more, he's TRYING to talk. So, early intervention is out of the question, though he may do well with private therapy. I'll talk to the pediatrician about it next week.
In the meantime, the evaluators gave me a gentle kick in the ass for another summer plan: weaning off the bottle and the pacifier. YES, he still has them--don't judge. But they reminded me about oral muscle development and speech. So Monday afternoon, I cut off the bottles during the day; if it's time for a snack or drink, he can have them, not a bottle.
It was ugly. Milk in another vessel was rejected with force. There was screaming and flailing. I really wanted to capitulate. But I didn't, and by Tuesday afternoon, he was asking for snacks and juice. He seems initially devastated, but when he still gets SOMETHING to consume, he gets over it.
His temper is a squall: fierce and furious, but fairly short-lived.
Next it's the bedtime and wake-up bottles. Then the pacifier (which is already limited to certain locations and times); I figure it's "pacifying" and comforting him through this transition.
Step by step...
Tuesday, July 10, 2012
Early Intervention
I'm doing a do-si-do with Early Intervention right now, trying to get Eddie a speech evaluation. They need half an hour to talk to me, but when I have it and call them, all agents are busy. **sigh**
Recently, I was thrilled that I "got" Eddie, that I finally felt an understanding of who the little character is... but lately, that's been stymied by his speech. It is heartbreaking when he's standing before me, crying the same unintelligible words over and over, and I have no idea what he's saying. I stop and think of the words I do recognize, and I think I only recognize them because they're in context.
His receptive language is great--he understands me perfectly. I *think* his hearing is fine--he doesn't get confused between similar-sounding words. But the expressive language is so difficult to decipher...
So...it's time. Now I'm just waiting on the state, which is such fun.
Recently, I was thrilled that I "got" Eddie, that I finally felt an understanding of who the little character is... but lately, that's been stymied by his speech. It is heartbreaking when he's standing before me, crying the same unintelligible words over and over, and I have no idea what he's saying. I stop and think of the words I do recognize, and I think I only recognize them because they're in context.
His receptive language is great--he understands me perfectly. I *think* his hearing is fine--he doesn't get confused between similar-sounding words. But the expressive language is so difficult to decipher...
So...it's time. Now I'm just waiting on the state, which is such fun.
Friday, July 6, 2012
Adventure awaits!
Today I conceived a plan that makes me happy. It's a schedule:
Alex has six weeks of ESY (formerly known as summer school), M-Th, 8:30-12:30. On Fridays, we will be going to feeding therapy at 9:30. After that, we can do little adventures together. And of course, we have afternoons for swimming and fun.
And I need/want to clean out the clutter of my house...AND I have the luxury of Grandma and a babysitter with whom I can leave Eddie while I clean. So...
Tuesdays and Thursdays shall be cleaning mornings; Mondays and Wednesdays shall be adventure days. I can take Eddie to places that Alex doesn't want to go. I can even take him on breakfast/brunch dates. And late Wednesday mornings, we'll be doing swim lessons--which should be an adventure themselves. :)
I'm excited, contemplating a zoo, an aquarium...I don't even know what else! Any suggestions?
Alex has six weeks of ESY (formerly known as summer school), M-Th, 8:30-12:30. On Fridays, we will be going to feeding therapy at 9:30. After that, we can do little adventures together. And of course, we have afternoons for swimming and fun.
And I need/want to clean out the clutter of my house...AND I have the luxury of Grandma and a babysitter with whom I can leave Eddie while I clean. So...
Tuesdays and Thursdays shall be cleaning mornings; Mondays and Wednesdays shall be adventure days. I can take Eddie to places that Alex doesn't want to go. I can even take him on breakfast/brunch dates. And late Wednesday mornings, we'll be doing swim lessons--which should be an adventure themselves. :)
I'm excited, contemplating a zoo, an aquarium...I don't even know what else! Any suggestions?
Thursday, July 5, 2012
Little charms
Hey, I'm back! I didn't quit, just took a vacation--literally. And I have so much to tell...
But today I have simple things to share.
Last night at Eddie's bedtime, I asked him to blow Alex a kiss goodnight, which he did. Alex got out of his seat, walked over to Eddie, and kissed him on the head. Unprompted.
Eddie says "Thank you" without being prompted more than half of the time. Cuter: it comes out sounding like "denk-oo!"
Last night, Alex had no desire to see fireworks, but when I invited him to come outside to look at fireflies, he flew out the door. He was delighted, enchanted--and enchanting.
Eddie likes to give high fives--no, he LOVES to give them, followed by "pounds." And hugs. And waves goodbye. But I love the fact that if he does it with one person in the room, he will go to every other person, too.
After gymnastics today, Alex saw girls in the dance studio at his gym. "I want to go in there!"
"No, Alex, you can't go in now. The girls are working."
"I will work, TOO! I want to POSE!"
(So, um...maybe I'll take him to a dance class? Yeah, maybe. Still thinking that one over.)
Today, I taught Alex how to "volley" a beach ball in the pool. It took some coaching and breaking down the steps, plus plenty of cheering. Eddie joined in the cheering.
But even BETTER than that was what happened next. I told Alex, "Look! Eddie is so happy for you, he's cheering for you." And he looked. Then he hit the ball, and he looked again. He cared that Eddie was cheering for him.
These are the little things that charm my days. I don't want to forget a single one.
But today I have simple things to share.
Last night at Eddie's bedtime, I asked him to blow Alex a kiss goodnight, which he did. Alex got out of his seat, walked over to Eddie, and kissed him on the head. Unprompted.
Eddie says "Thank you" without being prompted more than half of the time. Cuter: it comes out sounding like "denk-oo!"
Last night, Alex had no desire to see fireworks, but when I invited him to come outside to look at fireflies, he flew out the door. He was delighted, enchanted--and enchanting.
Eddie likes to give high fives--no, he LOVES to give them, followed by "pounds." And hugs. And waves goodbye. But I love the fact that if he does it with one person in the room, he will go to every other person, too.
After gymnastics today, Alex saw girls in the dance studio at his gym. "I want to go in there!"
"No, Alex, you can't go in now. The girls are working."
"I will work, TOO! I want to POSE!"
(So, um...maybe I'll take him to a dance class? Yeah, maybe. Still thinking that one over.)
Today, I taught Alex how to "volley" a beach ball in the pool. It took some coaching and breaking down the steps, plus plenty of cheering. Eddie joined in the cheering.
But even BETTER than that was what happened next. I told Alex, "Look! Eddie is so happy for you, he's cheering for you." And he looked. Then he hit the ball, and he looked again. He cared that Eddie was cheering for him.
These are the little things that charm my days. I don't want to forget a single one.
Tuesday, June 26, 2012
ER, nearly 911, and the construction of the skull
About a year ago, when Eddie got on his feet, I (half) joked that he would put himself or me in the ER before he was two. As of last week: achievement unlocked.
Today, I was THIS CLOSE to calling 911. My stubborn little lion got his head stuck between the bars of the dining room railing. Really. I mean that's one of those things that I always thought was ridiculous and impossible...like, can't you just slick his head with oil and slip him out? Apparently not.
By the way: WHY NOT? How is the skull constructed that allows it to squeeze one way and not the other way? Is this some holdover from birth because he's so young? I mean I don't get the physics of it.
Anyway, my sister and brother in law are the awesomist. I'll say it: they are my favorite people today. Probably all week. Oh, and Grace rocks, too--she came to distract the pilloried toddler. Ellen held me together and supervised; John did the work. And man...he's the reason I still have a railing, the smart man. I think I owe him chocolate.
Sunday, June 24, 2012
Calm before the storm
Dan's going away for a few days, so it'll be me and the boys until Thursday. Then, on Friday or Saturday, some of our MA family are coming to visit. THEN, on Sunday, Dan and I get to go on our first vacation without kids since...well, kids. Two days in AC, then back to our visiting family--who will be staying here with the boys in our absence.
There's a lot of preparing to do. And I'm starting to feel like I should have been cleaning the house this past week...but I really have enjoyed my kids. I'm GETTING Eddie. He is so headstrong that we clash when I have an agenda. Without one, I have the patience (most of the time) to ride it out. And other times...he is so damn cute.
On Friday, we watched the lightning together--and he was SO excited about it. I think it was the "adventure" he loved, and me inviting him into it. That's a detail I have to remember.
We got him into the pool beyond the steps, and he had FUN. He's started singing a song from The Fresh Beat Band ("Uh-Oh" is a catchy hook for the under-2 set). And he's showing some enthusiasm with my introductions to potty training. I especially love his affectionate interactions with Alex--and I have time to watch them and foster a positive response from Alex (of course, they're not always affectionate, so I HAVE to watch them carefully).
These leisurely days are good times.
So, now I need to build in some work: clean up the house, prepare for company, prepare for our trip (hey, anybody have recommendations about AC?), and most importantly: prepare for being away from the boys. There are lists, schedules, and instructions to write. With Alex on a biomed program, there are a dozen supplements, medicines, etc. to keep track of. Never mind his need for routine...oh lord, please let him handle us being away!
If you don't hear from me, I'm probably writing a list.
There's a lot of preparing to do. And I'm starting to feel like I should have been cleaning the house this past week...but I really have enjoyed my kids. I'm GETTING Eddie. He is so headstrong that we clash when I have an agenda. Without one, I have the patience (most of the time) to ride it out. And other times...he is so damn cute.
On Friday, we watched the lightning together--and he was SO excited about it. I think it was the "adventure" he loved, and me inviting him into it. That's a detail I have to remember.
We got him into the pool beyond the steps, and he had FUN. He's started singing a song from The Fresh Beat Band ("Uh-Oh" is a catchy hook for the under-2 set). And he's showing some enthusiasm with my introductions to potty training. I especially love his affectionate interactions with Alex--and I have time to watch them and foster a positive response from Alex (of course, they're not always affectionate, so I HAVE to watch them carefully).
These leisurely days are good times.
So, now I need to build in some work: clean up the house, prepare for company, prepare for our trip (hey, anybody have recommendations about AC?), and most importantly: prepare for being away from the boys. There are lists, schedules, and instructions to write. With Alex on a biomed program, there are a dozen supplements, medicines, etc. to keep track of. Never mind his need for routine...oh lord, please let him handle us being away!
If you don't hear from me, I'm probably writing a list.
Thursday, June 21, 2012
Love letter to an ER
We interrupt your regular programming for a special announcement: Riverview's Pediatric ER made my night.
So wild man Eddie dislocated his elbow tonight. How? Accidentally. And of course, it happened after office hours--as all emergencies are wont to do. Urgent care couldn't set it, so off to the ER. Greeeaat.
But seriously--WOW. Granted, we were lucky that it wasn't busy. But we were in the waiting room maybe 5 minutes, and Eddie loved the fish tank. He didn't want to leave it. Then into the peds section, and it was beautiful. I know it was built recently, so everything still has that new-office smell. The layout, the furnishings were just lovely.
But the staff: SO attentive. The nurse practitioner could have taken care of us, but the supervising physician came in anyway to say hello and offer support. 5-10 minutes in the room and Eddie was "reset" and out of pain. DONE. Well, except for paperwork.
Everyone was so loving and friendly. Normally, Eddie would have eaten it up. As it was, he wanted to get the hell out. Once he did, he was happy Eddie, giggling and wild!
So when all conditions were good (i.e., the place wasn't mobbed), Riverview ER was just wonderful. I thought you should know.
So wild man Eddie dislocated his elbow tonight. How? Accidentally. And of course, it happened after office hours--as all emergencies are wont to do. Urgent care couldn't set it, so off to the ER. Greeeaat.
But seriously--WOW. Granted, we were lucky that it wasn't busy. But we were in the waiting room maybe 5 minutes, and Eddie loved the fish tank. He didn't want to leave it. Then into the peds section, and it was beautiful. I know it was built recently, so everything still has that new-office smell. The layout, the furnishings were just lovely.
But the staff: SO attentive. The nurse practitioner could have taken care of us, but the supervising physician came in anyway to say hello and offer support. 5-10 minutes in the room and Eddie was "reset" and out of pain. DONE. Well, except for paperwork.
Everyone was so loving and friendly. Normally, Eddie would have eaten it up. As it was, he wanted to get the hell out. Once he did, he was happy Eddie, giggling and wild!
So when all conditions were good (i.e., the place wasn't mobbed), Riverview ER was just wonderful. I thought you should know.
Wednesday, June 20, 2012
Ready
Blessed, joyous solstice to all! I always think I'm going to start some rebirth on a pagan holiday, and it never works out. This time, though, I totally forgot what day was approaching--and I've been wanting to make this transformation for a few weeks. And ya know, I'm hoping that making it public will help me to stick to it. ;-)
Today wasn't especially eventful...hey, I got my oil changed. (It'd only been 9000 miles. Relax, it's the synthetic oil...that makes it all better, right?) And Alex had ABA therapy, which was great as usual. And we went swimming: two Kaufmen, Mommy, and a few other awesome relatives.
So instead I'll give you some exposition.
I have a tendency to get lazy, and that tendency has quietly been leaving piles around my life. Yep, the physical piles in the house, plus the non-tangible ones, like therapies for Alex and habits that need breaking--or making. I want to change the way we eat. I want to change the way we spend spare time. And I want to KNOW I'm doing my best for my sons, not just hope I am.
But it's all a chain reaction, see? I have to make do in the kitchen because I don't have room to set up new systems. In the house, the toys and clothes are where they are because there are other toys and clothes and crap in other places. I joke that I need to gut the place. Well, it's sort of a joke. But I have stalled for MONTHS because "I don't have time to do this--I'll have to find someone to babysit so I can do this...for like a few days." Yeah, that's not happening.
So it has to be in stages--one room, one closet at a time. Perhaps one reasonable babysitting session of a couple hours at a time.
And once I can get my physical world in order, I'll have the setup to make other changes. Like more activity and less staring at screens (for the kids, of course...I say as I stare at a screen. :-/). Like eating better foods and getting more exercise.
A goddess-friend of mine recommended a book (that I have barely cracked, to be honest) that taught me something to the effect: "Disorder in the physical world breeds disorder in the psychic/spiritual/mental world." And that makes total sense to me.
So now that I've said all that, I'm reminded that I really should clean out SOMETHING tonight...maybe I'll bag up some clothes that I want to get rid of. Or maybe pull some clutter out of the kitchen cabinets. It'll be something.
Because if I remember my reason for this--the well-being of my family and me--I can't lose my focus.
Just before I sat down to write this, Alex stopped flap-pacing to look at me and whisper in a gravelly voice, "Mommy! Ready?" I had no idea what we were about to do, but it didn't matter. When my kid invites me to play a game, I am in. There was no doubt I'd answer as I did: "I am READY."
Today wasn't especially eventful...hey, I got my oil changed. (It'd only been 9000 miles. Relax, it's the synthetic oil...that makes it all better, right?) And Alex had ABA therapy, which was great as usual. And we went swimming: two Kaufmen, Mommy, and a few other awesome relatives.
So instead I'll give you some exposition.
I have a tendency to get lazy, and that tendency has quietly been leaving piles around my life. Yep, the physical piles in the house, plus the non-tangible ones, like therapies for Alex and habits that need breaking--or making. I want to change the way we eat. I want to change the way we spend spare time. And I want to KNOW I'm doing my best for my sons, not just hope I am.
But it's all a chain reaction, see? I have to make do in the kitchen because I don't have room to set up new systems. In the house, the toys and clothes are where they are because there are other toys and clothes and crap in other places. I joke that I need to gut the place. Well, it's sort of a joke. But I have stalled for MONTHS because "I don't have time to do this--I'll have to find someone to babysit so I can do this...for like a few days." Yeah, that's not happening.
So it has to be in stages--one room, one closet at a time. Perhaps one reasonable babysitting session of a couple hours at a time.
And once I can get my physical world in order, I'll have the setup to make other changes. Like more activity and less staring at screens (for the kids, of course...I say as I stare at a screen. :-/). Like eating better foods and getting more exercise.
A goddess-friend of mine recommended a book (that I have barely cracked, to be honest) that taught me something to the effect: "Disorder in the physical world breeds disorder in the psychic/spiritual/mental world." And that makes total sense to me.
So now that I've said all that, I'm reminded that I really should clean out SOMETHING tonight...maybe I'll bag up some clothes that I want to get rid of. Or maybe pull some clutter out of the kitchen cabinets. It'll be something.
Because if I remember my reason for this--the well-being of my family and me--I can't lose my focus.
Just before I sat down to write this, Alex stopped flap-pacing to look at me and whisper in a gravelly voice, "Mommy! Ready?" I had no idea what we were about to do, but it didn't matter. When my kid invites me to play a game, I am in. There was no doubt I'd answer as I did: "I am READY."
Tuesday, June 19, 2012
Renovation, Day 1
So today was the first day of my summer vacation. I have a lot of work to do.
The house needs serious cleanout--so serious that I'm uncomfortable in here. But there are only so many hours in a day, and I have two (big) little diversions that deserve my time more. So, once piece at a time, I will get it done this summer.
There are also appointments to be made, problems to be tackled, and obligations to fill. I'll get to these, too.
But first, I have two little boys to cherish.
So today, we played. We went to Auntie's house and played with cousins. We went to Grandma & Grandpa's house (our second home) where we could move from space to child-dedicated space together. I sat in a ladybug tent with Alex and ate lunch. I listened to Eddie's attempts at language and fell in love with him again. He's such a little character... because I realized that attempting to teach them new things will not go well if I don't really get who they are.
And so, part one of the renovation is simply getting reacquainted with my kids, particularly Eddie. I spend so much time "reading" Alex that I think I've got him pegged--as much as I could. But Eddie and I butt heads so much that this down time is a blessing, a chance to calm down and enjoy each other.
(Oh and I made a call about feeding therapy for Alex. But there's far more work to be done there, so I'll save it for later. For now, I'll revel in the happy day!)
The house needs serious cleanout--so serious that I'm uncomfortable in here. But there are only so many hours in a day, and I have two (big) little diversions that deserve my time more. So, once piece at a time, I will get it done this summer.
There are also appointments to be made, problems to be tackled, and obligations to fill. I'll get to these, too.
But first, I have two little boys to cherish.
So today, we played. We went to Auntie's house and played with cousins. We went to Grandma & Grandpa's house (our second home) where we could move from space to child-dedicated space together. I sat in a ladybug tent with Alex and ate lunch. I listened to Eddie's attempts at language and fell in love with him again. He's such a little character... because I realized that attempting to teach them new things will not go well if I don't really get who they are.
And so, part one of the renovation is simply getting reacquainted with my kids, particularly Eddie. I spend so much time "reading" Alex that I think I've got him pegged--as much as I could. But Eddie and I butt heads so much that this down time is a blessing, a chance to calm down and enjoy each other.
(Oh and I made a call about feeding therapy for Alex. But there's far more work to be done there, so I'll save it for later. For now, I'll revel in the happy day!)
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