We were back at the fun house this past weekend. And it was First Friday. Which means that downtown is packed with a festive environment of sidewalk musicians, art, vendors, beer and wine tasting, and all the quaint stores are open late. It also means crowds and noise and chaos.
But, since Bambam has been doing so many great things lately, we thought we would try it. First up was pizza by the slice from the hole in the wall pizza joint that we like. Bambam loves their pizza and we usually get it when we go downtown. But its not usually this crowded. As soon as we entered, he stopped in his tracks and grew tense. He had told me right before entering that he needed to use the bathroom. So, even though he said immediately upon entering that he wanted to "go back outside" I made him go use the bathroom first. I barely had his shorts back up before he bolted out the bathroom door and made a beeline outside. No way was he staying or going back inside that crowded place.
On my way chasing him outside, I spotted a mom pushing a special stoller with a 7 or 8 year old girl in it. She caught my eye, she smiled at me as I chased Bambam out the door as he's yelling "go outside now, go outside NOW". And I knew, she knew. She was "our kind". With no words her look and smile encouraged me. She let me know that she understood, I was not alone. We were doing OK. A thousand words and thoughts were exchanged in that silence. And I smiled back hoping to convey to her what she had given me in that brief, silent exchange.
My Side of Typical
Tuesday, July 9, 2013
Tuesday, July 2, 2013
Poop
I recently read that if you are a true autism blog, then you will have at least one post about poop. I don't really consider this an autism blog, its actually about our whole special, blended family. But a large majority of my posts involve our journey with autism. And I have talked about poop. But I've not had a whole post dedicated to it. Until now.
Last night we hit a Major Milestone. Bambam pooped on the potty! And I mean a real poop. Sufficient amount, with pushing and control and everything. THIS.IS.HUGE. 7 1/2 years in the making huge. OK, well maybe not really 7 1/2 years as no one expects an infant to poop in the potty. But at least 3 solid years of s.l.o.w.l.y working on this from every possible angle.
To say we were excited is the understatement of the year. Bambam showed every member of our household. Yup, every member of our household came into the bathroom to look at the evidence and congratulated Bambam. I know that sounds weird. But EVERYONE has been working with Bambam on this goal for 3 long years. And everyone was beyond excited. And Bambam reveled in the attention and congratulations. We even took him to the fireworks stand where he got to pick out anything he wanted. Which is a small miracle in itself as until last year he ran screaming from even the thought of a firework. But that is another post.
I realize this is not a done deal. We most likely have weeks, probably months, of accidents and trial and error. But my son pooped on the potty and I am beyond thrilled. Way to go son!
Last night we hit a Major Milestone. Bambam pooped on the potty! And I mean a real poop. Sufficient amount, with pushing and control and everything. THIS.IS.HUGE. 7 1/2 years in the making huge. OK, well maybe not really 7 1/2 years as no one expects an infant to poop in the potty. But at least 3 solid years of s.l.o.w.l.y working on this from every possible angle.
To say we were excited is the understatement of the year. Bambam showed every member of our household. Yup, every member of our household came into the bathroom to look at the evidence and congratulated Bambam. I know that sounds weird. But EVERYONE has been working with Bambam on this goal for 3 long years. And everyone was beyond excited. And Bambam reveled in the attention and congratulations. We even took him to the fireworks stand where he got to pick out anything he wanted. Which is a small miracle in itself as until last year he ran screaming from even the thought of a firework. But that is another post.
I realize this is not a done deal. We most likely have weeks, probably months, of accidents and trial and error. But my son pooped on the potty and I am beyond thrilled. Way to go son!
Thursday, June 27, 2013
Presume Competence
We've adopted a new philosophy. Mr. Fixit and I decided in a fit of proactive parenting that we were going to presume competence from now on with Bambam. We have always been very cautious with him. Sheltering him. Understandably so. But time and time again, he shows us that he is capable and can do so much more than we expect. It may not be the way we assume it will go; it most often is in his own way, in his own time. But he is capable none the less.
By sheltering him I think we've been holding him back. Unintentionally. And really with his best interest at heart. We do not want him to get hurt, physically, emotionally, or mentally. I used to think it was hard to send Miracle Boy out into the world, but sending Bambam with his special needs adds a whole new level to hard. It is gut wrenching, anxiety producing terror. I loose sleep at night, I can't concentrate at work kind of anxiety.
But, in keeping with out new philosophy, we signed Bambam up for a few day camps this summer. The first one had a bit of a rocky start (see It was Good...Until it Wasn't) but really ended up being great. Bambam had a lot of fun and his aid was an amazing young college student. We were feeling confident. Presume Competence indeed!
Week 2 was a different camp. This one is run by the local university, on campus. It is a bigger camp. More kids, more leaders, more chaos. Again I talked to the director, we made a plan. We were ready to go. Until we got to check in on Monday morning.
They didn't have any of his information...not even his name. Not to mention the list of special needs and accommodations. Um what??? There were tons of kids, tons of leaders all mulling around. Someone takes us to another table where they look in a new place for his information. Nothing. All the while Bambam's grip on my hand is getting tighter and tighter, he is nudging closer and closer to me. Presume competence.
Finally we find someone who knows about him. She gets down on her knees and talks to Bambam: asks his name, where he goes to school, promises to get him a name tag by snack time. And she takes us to find his group. Bambam's grip is getting tighter yet. I wonder if any blood is reaching my fingers. Presume competence.
We find his group and I ask to talk to whomever is going to stay with him all morning. They stare at me blankly. Usually the kids are handed off from one activity to another (3 of them in the morning) each with different leaders. Not a formula that will work for Bambam, he needs some sort of consistency. Presuming competence is one thing, throwing all caution to the wind and providing him with no supports at all is unacceptable. I finally convinced one of the young leaders (Stormy or Sporty or something. At that point I was almost ready to flee with my child from this crazy place, I didn't really catch her camp name) to stay with him through all the activities. Bambam found a place for his backpack and reluctantly let go of my hand, following Sporty into the gym. Presume competence.
I fought tears on my way to work. I sent Mr. Fixit this text: I do not have high hopes for this. In fact, I'm very nervous leaving him there. Lots of kids and chaos. He was squeezing my hand really, really hard. To which he answered: I was awake all night worried about it. Presume competence.
An hour later I texted: Well he's been there an hour and I haven't received a phone call yet. That's good, right? To which he said: Unless they lost him. Presume competence.
A little later I texted: One hour to go. My stomach is in knots. To which he answered: I'm going 30 minutes early to find him. Presume Competence.
A text from Mr. Fixit: I'm at the pick up area, just waiting for him. 18 minutes before pickup time. My response: OK, let me know how it went as soon as you can. Presume competence.
Finally: He's fine. They said he did fine. Lots of watching, but he's happy. Presume Competence.
He did it! In his own way, watching; but he did it. He didn't get lost, there were no meltdowns, or tears, or accidents, or calls to mom. And as the week progresses and he gets more comfortable, there will be more participation and less watching. All in his own time. Presume competence.
Presuming competence may be good for Bambam, but it just might kill me. At the very least it will turn my hair completely grey and give me an ulcer. I know in my heart of hearts that in order for him to grow we must give him opportunities to learn, sometimes even nudge him along the the path to his full potential. But honestly, this is the hardest thing I've ever had to do. Presume competence. It sounds great, has a nice ring to it. But I think there may be days when I hate those 2 words.
By sheltering him I think we've been holding him back. Unintentionally. And really with his best interest at heart. We do not want him to get hurt, physically, emotionally, or mentally. I used to think it was hard to send Miracle Boy out into the world, but sending Bambam with his special needs adds a whole new level to hard. It is gut wrenching, anxiety producing terror. I loose sleep at night, I can't concentrate at work kind of anxiety.
But, in keeping with out new philosophy, we signed Bambam up for a few day camps this summer. The first one had a bit of a rocky start (see It was Good...Until it Wasn't) but really ended up being great. Bambam had a lot of fun and his aid was an amazing young college student. We were feeling confident. Presume Competence indeed!
Week 2 was a different camp. This one is run by the local university, on campus. It is a bigger camp. More kids, more leaders, more chaos. Again I talked to the director, we made a plan. We were ready to go. Until we got to check in on Monday morning.
They didn't have any of his information...not even his name. Not to mention the list of special needs and accommodations. Um what??? There were tons of kids, tons of leaders all mulling around. Someone takes us to another table where they look in a new place for his information. Nothing. All the while Bambam's grip on my hand is getting tighter and tighter, he is nudging closer and closer to me. Presume competence.
Finally we find someone who knows about him. She gets down on her knees and talks to Bambam: asks his name, where he goes to school, promises to get him a name tag by snack time. And she takes us to find his group. Bambam's grip is getting tighter yet. I wonder if any blood is reaching my fingers. Presume competence.
We find his group and I ask to talk to whomever is going to stay with him all morning. They stare at me blankly. Usually the kids are handed off from one activity to another (3 of them in the morning) each with different leaders. Not a formula that will work for Bambam, he needs some sort of consistency. Presuming competence is one thing, throwing all caution to the wind and providing him with no supports at all is unacceptable. I finally convinced one of the young leaders (Stormy or Sporty or something. At that point I was almost ready to flee with my child from this crazy place, I didn't really catch her camp name) to stay with him through all the activities. Bambam found a place for his backpack and reluctantly let go of my hand, following Sporty into the gym. Presume competence.
I fought tears on my way to work. I sent Mr. Fixit this text: I do not have high hopes for this. In fact, I'm very nervous leaving him there. Lots of kids and chaos. He was squeezing my hand really, really hard. To which he answered: I was awake all night worried about it. Presume competence.
An hour later I texted: Well he's been there an hour and I haven't received a phone call yet. That's good, right? To which he said: Unless they lost him. Presume competence.
A little later I texted: One hour to go. My stomach is in knots. To which he answered: I'm going 30 minutes early to find him. Presume Competence.
A text from Mr. Fixit: I'm at the pick up area, just waiting for him. 18 minutes before pickup time. My response: OK, let me know how it went as soon as you can. Presume competence.
Finally: He's fine. They said he did fine. Lots of watching, but he's happy. Presume Competence.
He did it! In his own way, watching; but he did it. He didn't get lost, there were no meltdowns, or tears, or accidents, or calls to mom. And as the week progresses and he gets more comfortable, there will be more participation and less watching. All in his own time. Presume competence.
Presuming competence may be good for Bambam, but it just might kill me. At the very least it will turn my hair completely grey and give me an ulcer. I know in my heart of hearts that in order for him to grow we must give him opportunities to learn, sometimes even nudge him along the the path to his full potential. But honestly, this is the hardest thing I've ever had to do. Presume competence. It sounds great, has a nice ring to it. But I think there may be days when I hate those 2 words.
Wednesday, June 26, 2013
Lessons Learned at Orientation
Miracle Boy and I recently spent 3 days in at the University of Arizona for his Freshman Orientation. We had a great time. It's been years since we've spent a few days alone just the 2 of us. It was reminiscent of our trip to the coast when he was six. He is a great kid and very fun to spend time with. Correction, he is an adult. He's grown into an amazing young man right before my eyes.
He learned a lot of valuable information. He met his financial advisor, academic advisor, has his schedule set, met several other incoming freshman, found out about jobs, activities, fraternities, the list goes on and on.
I, however, learned different things on this trip. Here is a list of the top 10 things I learned:
1. The desert is beautiful
2. Dry heat or not, 108 is damn hot. I mean sweltering, melting, Hades hot.
3. Touring a college campus in said heat feels worse than running a half marathon.
4. You can never drink enough water in the desert.
5. Every building is kept at an arctic cold temperature. So, even in 108, you must carry a jacket with you to wear indoors. Why do they do this?
6. Dorm beds are not as bad as I remember; they are far, far worse.
7. The showers are worse than the beds.
8. When staying in a dorm room do not drink anything after 6:00 pm. The bathrooms are down the hall.
9. College kids are resilient, bright, eager, promising, full of life. Their energy is contagious.
10. Even with the contagious energy, I can no longer function on 3 hours of sleep. Those days are over.
He learned a lot of valuable information. He met his financial advisor, academic advisor, has his schedule set, met several other incoming freshman, found out about jobs, activities, fraternities, the list goes on and on.
I, however, learned different things on this trip. Here is a list of the top 10 things I learned:
1. The desert is beautiful
2. Dry heat or not, 108 is damn hot. I mean sweltering, melting, Hades hot.
3. Touring a college campus in said heat feels worse than running a half marathon.
4. You can never drink enough water in the desert.
5. Every building is kept at an arctic cold temperature. So, even in 108, you must carry a jacket with you to wear indoors. Why do they do this?
6. Dorm beds are not as bad as I remember; they are far, far worse.
7. The showers are worse than the beds.
8. When staying in a dorm room do not drink anything after 6:00 pm. The bathrooms are down the hall.
9. College kids are resilient, bright, eager, promising, full of life. Their energy is contagious.
10. Even with the contagious energy, I can no longer function on 3 hours of sleep. Those days are over.
Monday, June 24, 2013
Arizona Bound
Miracle Boy is off to Arizona in August. I can hardly believe it. My baby is going off to college in 3 short months. I'm so damn proud of him.
University of Arizona was his first choice. But, being out of state, it was not necessarily my first choice. Distance and cost were my concerns. Out of state tuition is rediculous! 3 times in state tuition in this case.
But Miracle Boy pulled it off. He received 2 scholarships and 1 academic award from Arizona. Enough to bring the costs within a couple thousand of attending the local in state university. It means he will have to take a small student loan. But its what he really wants; and we will honor his decision. Even Mr. Fixit, who is always bottom line conscious, agreed that this was the right choice.
This is such a big step. And I've been so excited for him. And then we went online and paid the registration fee. And the panic hit. It was so unexpected, it really through me off, this feeling of terror. He'll be several states away. Basically on his own. We're not just a quick car ride away. I hope he's ready.
University of Arizona was his first choice. But, being out of state, it was not necessarily my first choice. Distance and cost were my concerns. Out of state tuition is rediculous! 3 times in state tuition in this case.
But Miracle Boy pulled it off. He received 2 scholarships and 1 academic award from Arizona. Enough to bring the costs within a couple thousand of attending the local in state university. It means he will have to take a small student loan. But its what he really wants; and we will honor his decision. Even Mr. Fixit, who is always bottom line conscious, agreed that this was the right choice.
This is such a big step. And I've been so excited for him. And then we went online and paid the registration fee. And the panic hit. It was so unexpected, it really through me off, this feeling of terror. He'll be several states away. Basically on his own. We're not just a quick car ride away. I hope he's ready.
Wednesday, June 19, 2013
It Was Great...Until It Wasn't
Bambam started day camp today. I was nervous dropping him off. But Bambam's aid Sam seemed confident. And thanks to our conversation days earlier, when Bambam showed up sporting a blue baseball cap Sam knew he was being a pizza deliver man. Bambam beamed when Sam gave him a frisbee and told him it was a pizza. Off he ran with Sam to deliver pizza.
At lunch time I went back to the park to check in on how things were going. Bambam took one look at me and said "You go back to work. I stay here." And after a quick bathroom trip and a change, off he ran to play with the other kids and I went back to work. It was great. He was having fun, Sam seemed very competent, the other kids were accepting.
Then, about 1:30 in the afternoon I received a phone call from Sam. Bambam had a bloody nose. Catastrophe. Very few things can put Bambam in meltdown mode as quickly as a bloody nose. It completely freaks him out. And I mean yelling, screaming, flailing arms and legs, complete freak out meltdown. But the worst part is the spitting. He hates the feeling of the blood running down his throat, so he spits it out. ALL.OVER.EVERYTHING. Many times I have ended up covered in blood spatter. It is disgusting. And I'm sure way more than a minimum wage, summer camp counselor/aid, college kid bargained for. No matter how great he is.
I sent Mr. Fixit a quick text: "Bloody nose, on way to get him" and immediately left work to pick up Bambam, panic growing along the way. Mr. Fixit's answer: "Oh no!" We both know what this means. I was sure Bambam would be a puddle by the time I got there.
But when I got there he was no longer crying or yelling or screaming. He looked at me and all he said was "Bleeding. Go home now." But he was CALM! And Sam seemed no worse for the wear. As Bambam climbed into the car Sam said "See you tomorrow buddy". To which Bambam answered "See you later." So, we will try again tomorrow.
“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.”
Mary Anne Radmacher
At lunch time I went back to the park to check in on how things were going. Bambam took one look at me and said "You go back to work. I stay here." And after a quick bathroom trip and a change, off he ran to play with the other kids and I went back to work. It was great. He was having fun, Sam seemed very competent, the other kids were accepting.
Then, about 1:30 in the afternoon I received a phone call from Sam. Bambam had a bloody nose. Catastrophe. Very few things can put Bambam in meltdown mode as quickly as a bloody nose. It completely freaks him out. And I mean yelling, screaming, flailing arms and legs, complete freak out meltdown. But the worst part is the spitting. He hates the feeling of the blood running down his throat, so he spits it out. ALL.OVER.EVERYTHING. Many times I have ended up covered in blood spatter. It is disgusting. And I'm sure way more than a minimum wage, summer camp counselor/aid, college kid bargained for. No matter how great he is.
I sent Mr. Fixit a quick text: "Bloody nose, on way to get him" and immediately left work to pick up Bambam, panic growing along the way. Mr. Fixit's answer: "Oh no!" We both know what this means. I was sure Bambam would be a puddle by the time I got there.
But when I got there he was no longer crying or yelling or screaming. He looked at me and all he said was "Bleeding. Go home now." But he was CALM! And Sam seemed no worse for the wear. As Bambam climbed into the car Sam said "See you tomorrow buddy". To which Bambam answered "See you later." So, we will try again tomorrow.
“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.”
Mary Anne Radmacher
Tuesday, June 18, 2013
Summer...Again
Summers are always hard with Bambam. Both Mr. Fixit and I work. Granted I only work part-time, but still need some sort of day care for about 25 hours a week. In the past we have muddled through with a hodge podge of grandparents, brother's help, and a very flexible work schedule for both myself and Mr. Fixit.
But this summer, that wasn't going to work. Both brothers got full time jobs. Yeah! But it cuts into our daycare availability. And my parents are getting older. My dad has Alzheimers and my mom really has her hands full caring for him. I can't really expect her to also take on a serverly autistic 7 year old for 25 hours a week. So I went looking.
Our City Parks and Rec answered the call admirable. I talked with the director who insisted they could accomodate all of Bambam's needs. So we met to hash out a plan. She agreed to all the adjustments I suggested to make Bambam's first day camp experience successful. We chose a camp that was less structured, lots of free play time. Set at a park, I would drop him off a little later and pick him up earlier in the afternoon so he wasn't there all day. He could bring his favorite comfort items from home. And at the very end she asks if it would be helpful for him to have his own aid. Seriously? Hell yes! The young man she was thinking of had past experience working with autistic children. She'd have him call me to talk about Bambam before camp started. I was amazed. Perhaps I'm naive, but I had no idea they would provide an aid for Bambam.
Sam did call me and we talked about Bambam. What works for him, what doesn't. What his favorite things are. How to calm him down if he gets upset. The best ways to encourage him to try something new. He asked great questions and was really interested in the answers. I have great hopes for Day Camp. I hope Bambam has as much fun as I remember having.
But this summer, that wasn't going to work. Both brothers got full time jobs. Yeah! But it cuts into our daycare availability. And my parents are getting older. My dad has Alzheimers and my mom really has her hands full caring for him. I can't really expect her to also take on a serverly autistic 7 year old for 25 hours a week. So I went looking.
Our City Parks and Rec answered the call admirable. I talked with the director who insisted they could accomodate all of Bambam's needs. So we met to hash out a plan. She agreed to all the adjustments I suggested to make Bambam's first day camp experience successful. We chose a camp that was less structured, lots of free play time. Set at a park, I would drop him off a little later and pick him up earlier in the afternoon so he wasn't there all day. He could bring his favorite comfort items from home. And at the very end she asks if it would be helpful for him to have his own aid. Seriously? Hell yes! The young man she was thinking of had past experience working with autistic children. She'd have him call me to talk about Bambam before camp started. I was amazed. Perhaps I'm naive, but I had no idea they would provide an aid for Bambam.
Sam did call me and we talked about Bambam. What works for him, what doesn't. What his favorite things are. How to calm him down if he gets upset. The best ways to encourage him to try something new. He asked great questions and was really interested in the answers. I have great hopes for Day Camp. I hope Bambam has as much fun as I remember having.
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